personalized gene-targeted cancer therapy

Clinical trials

Skepticism/Critical Thinking

antineoplastons

Politics

Categories

https://en.wikipedia.org/wiki/Seth_Kalichman

One of the many reasonable follow-up questions to this decision is, "What would it take to get the Texas Medical Board to actually revoke somebody's medical license?" And I have the feeling I don't want to know the answer to that question.

"Will he actually complete courses on Physician Ethics and study for a medical jurisprudence exam?"

I gather from the latter requirement that Burzynski either 1) got his Texas medical license so long ago that he never had to take the exam (the jurisprudence exam has been in force for at least 20 years), or 2) the Board's perception of his knowledge base is such that they're making him take it again.

In any event, the jurisprudence exam isn't that hard (there is at least one prep course offered online), and medical ethics coursework (required every licensing period for docs with Texas medical licenses) aren't very onerous or expensive either.

Being required to take ethics coursework should sting minimally, seeing that everyone with a Texas medical license has to do so.

"What would it take to get the Texas Medical Board to actually revoke somebody’s medical license?”

Just do a Google search and you'll see the myriad reasons behind revocations. One biggie seems to be operating unlicensed/illegal pain management clinics (it also doesn't help when docs are charged with something and ignore board notifications to show up for hearings).

Can we get these polypeptides some other way besides the serial liquid chromatography of mare urine?

Eric,

I can think of at least one example. On SBM there was a commenter months ago who had his MD license stripped by the TMB. The documents are all online. He continued to "practice" medicine even after his license was revoked and he had to be warned a second time.

He contends, despite the tangible evidence, that he "told the TMB to shove their license" and voluntarily relinquished it after realizing how corrupt the medicial system is.

One of his protocols to cure cancer was to inject the cancer patient's blood into a cow, then have the patient drink the cow's milk.

He now claims to make a million dollars a year selling supplements online. He was recently busted taking a loaded gun on a commercial airline.

Unfortunately I don't remember his name and since the SBM commenting system was either altered or deleted, it's impossible to find old comments.

To bring this on topic: when I read the TMB documents in the cow milk case I thought there might be a glimmer of hope the TMB would have the b*lls to do the same to ol' Stan.

By the way, am I the only one who keeps thinking of our old Burzynski troll Didymus Judas Thomas every time I see Trump's initials DJT? Maybe Trump WAS Didymus?... :)

I remembered his "stage name": Dr. Fitt. Real name: former MD Roby Mitchell from Amarillo.

Google him and have fun if you want to see what it takes the TMB to revoke a license. Step one: Get a cow...

Beside his gun incident, he also threatened death on Facebook to a (licensed) doctor in his area who displeased Roby for whatever reason.

And he sells a cancer cure on his website.

Yes, but Burzynski has a higher success rate than Oncologists who rely on chemotherapy and radiation.

How would anyone know? Forty years and not a single published study.

Eric Merola's infomercials are not evidence. Most of the people in his films are dead anyway.

Sorry, only the quoted line should have been bolded.

Oh boy, the Stan shills have arrived...

By the way, I'm not sure if Orac is aware (I posted it on an outdated thread several months ago but it got swamped by more active comments) but his nemesis and number one Burzynski supporter Sheila Herron died last year.

There didn't seem to be any online presence about her death, like an obituary or even a Facebook memorial, so she may have been hit by a bus and her death might have have nothing to do with her cancer or Burzynski's failure.

Sorry, only the quoted line should have been bolded.

Given that it's Fucklesworth impersonating Kalichman, it hardly matters.

Wait, this Seth guy is real? And he supports and defends Stan?!

He needs to sharpen his critical thinking skills.

Oh Seth...Seth Seth Seth.

The problem with talking about chemotherapy "success" rates as you termed it, is that some forms of cancer are very aggressive and often fatal. If some cancers are 99% lethal, yet chemotherapy and early diagnosis reduces that to 75% lethal, that is a 25x multiplier in survivability. Stanislaw then does some witchcraft, and guess what, the lethality of that disease is still 99%. His multiplier is zero.

Also what kinda joke is it to use a report from another quack's website? That's the other side of the issue, some cancers aren't lethal, so when someone just happens to survive the quacks take credit. When they don't, the quacks say it was because western medicine already did too much damage.

Wait, this Seth guy is real? And he supports and defends Stan?!

It's Travis J. Schwochert; my comment with his usual nickname is in moderation.

Does the a-hole have nothing better to do than spend hours a day trying to outsmart Orac, spoofing ISPs and skimming e-mail addresses?

What's his point? I thought he only disrupted vaccination-themed discussions.

Will he actually complete courses on Physician Ethics and study for a medical jurisprudence exam”? I’m not sure I can see it happening. Maybe he’ll retire.

Even if he does, isn't his equally skeevy son at the helm now?

Google him and have fun if you want to see what it takes the TMB to revoke a license. Step one: Get a cow…

Thanks for the info, WooFighter. Though this guy probably didn't go quite that far, I'm reminded of a Tom Lehrer line: "He majored in animal husbandry until they ... caught him at it one day."

"Australia: where men are men and sheep are ... frightened."

The punchline to the cow milk story, if such a tragic story can have a punchline, is that after the cancer patient died, Roby refused to pay the farmer (the owner of the cow) the agreed-upon fee!

What do you think PETA would do if they found out a former doctor was injecting cancer into cows?

"What’s his point?"

It is pointless to try to understand an unreasonable person by the expected behavior of a reasonable person.

rs,

I thought maybe he had claimed to have a "vaccine-injured" kid or something that would justify an anti-vax agenda, like many of the AofA denizens.

That would still reflect the actions of an unreasonable person.

You likely know the old saying: you cannot reason a person out of a position they did not reach by reason. Many anti-vaxxers seem to fit this description.

Then there are the perpetual contrarians. They feel a strong sense of affirmation by going against the consensus, be it politics or science. They are only emboldened by refutations of their views.

What category Travis fits I can't say, nor do I care.

after the cancer patient died, Roby refused to pay the farmer (the owner of the cow) the agreed-upon fee

So not just a quack but a cheapskate.

A description he shares with Burzynski. As noted in the OP, Burzynski stiffed his lawyer at one point during the proceedings. That's usually a land-war-in-Asia class blunder for someone like Burzynski, but he appears to have gotten away with it, or at least not suffered the consequences for doing so.

Come to think of it, that's something Burzynski and Trump have in common. Trump has a reputation in the real estate world for stiffing his contractors--including lawyers who have represented him in suits filed by stiffed contractors.

P.S. I have heard multiple places described as, "Where men are men and sheep are nervous."

What do you think PETA would do if they found out a former doctor was injecting cancer into cows?

Call for the elimination of domesticated cattle. But they already do that.

Skeptico = Travis Schwochert of Endeavor, Wisconsin = Fucklesworth, and can be safely ignored

You're late. Travis picked another bad one that I recognized right away as him because I know Skeptico. He was a long time regular commenter in the early days and still shows up from time to time, albeit nowhere near as often as he used to. He'd never say the sort of shit Travis did.

One biggie seems to be operating unlicensed/illegal pain management clinics

Ah, opiate pill-mills. Where the Randroid policy of "Abolish regulations and let doctors make money in whatever way they like" runs up against the insidious fear that someone might be having fun.

“What would it take to get the Texas Medical Board to actually revoke somebody’s medical license?”

The TMB finally revoked Dr Duntsch's license in Dec. 2013, after he was caught shoplifting trousers and liquor, rather than for killing and maiming patients with deliberately incompetent spinal surgery.

I was not late.

I'm a slow typist.

P.S. I have heard multiple places described as, “Where men are men and sheep are nervous.”

When and where I was growing up, it was always Montana.

HDB@27: Sadly, opioid addiction is a serious problem in large parts of the US, including, increasingly, small town/rural America. The economy is increasingly concentrated around big cities, and places that are not within commuting distance of such cities have progressively less to offer residents and potential residents. The more ambitious ones leave for the cities. The rest find themselves with little better to do than hang out with friends, drink, and do drugs.

It's not yet a problem where I live because I am (1) in a university town (2) within commuting distance of Boston. But I don't have to drive very far to get to places where this is a problem. It's one reason why I no longer feel safe in many of Maine's small towns (especially west and north of I-95)[1]. And I am as white as freshly fallen snow; people with recent non-European ancestry have additional reasons to be careful about personal security up there, such as the concentration of gun nuts who vote Republican.

[1]But unlike Gov. LePage, I don't fear for my safety in Lewiston, which is home to a substantial Somali refugee community. Lewiston is also a college town (Bates College), and it's close enough to Portland for that commute to be viable. So unlike too many places further upcountry, Lewiston has visible means of support.

@ Woo Fighter--are you referring to "Dr. Fitt" who was also recently found guilty of threatening to shoot a Texas oncologist in the head? http://amarillo.com/news/2017-01-05/dr-fitt-roby-mitchell-found-guilty-…

Yeah, I have concerns for whether TMB has any real teeth, too.

“Australia: where men are men and sheep are … frightened.”

La Roche moutonnée -- the sheep-shaped rock. Those horny explorers! Any dibs on why they called part of the Rockies Grand Tetons??

If one is going to shag a sheep, get it up against a cliff so it pushes back better. That, and drop its hind legs in your boots.

Dr. Hickie,

Yes, his nom de plume came to me after my first post, thanks. I remember calling him Dr. Not Fit (to practice) on SBM.

Did you follow his unhinged comments over there?

As I said, I was encouraged to read that the TMB yanked his license, leading to optimism the same fate could possibly befall Stan.

And why do I have an urge for lamb chops for dinner tonight?

Burzynski's story is as a generational force of nature. He's a wildly self promotional salesman and politician, say or do anything, a survivor at all costs. The ANP were once mildly interesting technically but still fail on cost and therapeutic index if one takes the CRC claims at face value. Burzynski's real "legacy" seems be to in two areas:

First, in the 80s and 90s, he showed that providers really could charge a lot more for cancer treatment. For this, the drs and pharmas should be grateful. In today's market, his charges don't seem so notable against insurance billings of $30,000- $50,000- $80,000 - $100,000+ per month that I've seen with my acquaintances. Especially given his high overhead costs....

Before SB, conventional medicine's legal treatment of alternative medical doctors was pretty much like clubbing baby seals. 1 - 2 good thumps, skin them and/or eat them as you like, In essence, he brought due process and patient's rights issues to bear by his fighting back. Wrong horse technically, but important legal and political issues.

I use those especially in the spring when there is no wool to hold onto.

https://www.youtube.com/watch?v=I2b0F5y-UVA

You've got a sick and twisted world perspecive
https://www.youtube.com/watch?v=1jJh-B4KWxU

Lewiston is also a college town (Bates College), and it’s close enough to Portland for that commute to be viable.

Bates College? I have a bachelors degree and a masters from Bates.

after he was caught shoplifting trousers and liquor

Call me priggish, but there's something wrong with stores that facilitate this kind of pairing without a riding mower's being involved.

Eric Lund, #30, I grew up in Fredericton, NB, and haven't been to Maine in quite a long time. Even when I did it was just to Presque Isle, or Bangor on occasion, and I was pretty young. So I don't really have much direct experience of Maine. However, on occasion I read news from Maine, and reading about LePage and people like him always amazes me. I used to think Maine was pretty similar to NB, but while NB can be a pretty conservative place, I am always surprised just how ridiculous things can get when you cross over that border, and how much more common those views seem to be. Trump got almost 45% of the vote in Maine, but in polls taken during the run up to the election, only 12% of those in NB would have voted for him. Attitudes seem to be very different in two places which have a lot of similar problems.

Did not a single local oncologist (adult or pediatric) stand up to testify against this quack Burzynski? I ask this because of what was written by Craig Masilow in the Houston Press ( http://www.houstonpress.com/news/texas-medical-board-whiffs-in-latest-c… ):

Incredibly, it seems that none of the board's medical experts who came were local — e.g., physicians at Texas Children's Hospital or M.D. Anderson, who have a long history with treating patients right before, or after, they've sought help from Burzynski. It seems like credible local specialists from the Texas Medical Center should have been lined up around the block to shed some light on Burzynski's "antineoplaston" treatment, and their silence is deafening. Because the board's spokesperson, Jarrett Schneider, wouldn't comment, we don't know if the board couldn't afford to pay these people for their time, or if they weren't considered in the first place.

It may be that TMB wanted non-local experts, but have any local oncologists filed complaints against Burzynski based on the patients they've seen hurt by Burzynski?

@Chris - good point. Based on case reports, it appears that physicians at TCH are old hat at cleaning up Burzynski's messes...I can't believe none of them were called to testify.

Travis@39: My experience of Maine has mostly been day trips (the only exception was an overnight stay in Bar Harbor when my mother and I saw Acadia National Park). One of these days I would like to get up to Fredericton--I know somebody who is a professor at the university there (he's an immigrant, so it's unlikely you would know him)--which is about a six hour drive from where I live. But I haven't been north of Bangor or east of Bar Harbor.

My impression is that southern Maine (York and Cumberland counties; the latter is metro Portland) is safe, and you are generally OK along the I-95 corridor up to Orono and most of the coast up to Bar Harbor. These are areas with visible means of economic support. Large portions of northern, western, and downeast Maine lack that. Those are the parts of the state that vote for LePage, Bruce Poliquin (the only Republican Congressman from New England), and Trump.

This sucks. Is this failure of the Medical board due to it's location in a "Red" stat, or is it that medical bards are just shit at regulating their members? Someone linked to the provisional findings a couple of weeks back, but I held hope that the council would re-visit the more egregious flaws. It seems that they did re-visit, but only to gut the findings and remedies further. Maybe the old bastard will die of old age before he can do any more harm. Well we can hope.

Funny, "orac", how you don't even publish your posts using your real name. You're obviously a tool for the FDA, big pharma, etc.

Stanislaw Burzynski comments on new cancer science, hilarity ensues

oracknows — Mon, 09 Sep 2013 01:22:09 +0000

Stanislaw Burzynski comments on new cancer science, hilarity ensues

It occurs to me that it's been a while since I've written anything about Dr. Stanislaw Burzynski. Truth be told, I had been hoping not to write about him for a while, and I had been actually succeeding. The last time I took notice of him was about a month ago, when his propagandist Eric Merola whined about how Dr. Hidaeki Tsuda, the Japanese anesthesiologist who was featured in the second movie that Merola made about Burzynski, had seen his latest manuscript rapidly rejected by The Lancet Oncology. In Tsuda's segment in the movie he claimed to have done a clinical trial showing that the addition of Burzynski's antineoplastons to chemotherapy for metastatic colorectal cancer greatly improved survival. As I pointed out on multiple occasions, data talk, BS walk. Presenting the very barest outline of a clinical trial in a propaganda movie directed by an admirer whose work is so blatantly biased that it's hard to take him seriously.

In any case, I was enjoying the lack of news about Burzynski and hoping that the next news I heard about him would involve his being shut down by the FDA or the Texas Medical Board acting to try to take his medical license away again. It didn't, unfortunately. What I did see was a press release entitled Burzynski Clinic heralds tumor treatment breakthrough:

PHILADELPHIA, PA, September 05, 2013 /24-7PressRelease/ -- The Burzynski Clinic is a leading cancer treatment center that focuses on using personalized targeted therapy to treat difficult types of cancer such as brain tumors. When tumors do not respond to chemotherapy or radiation, or those are not viable options, people often look for alternative forms of treatment. A recent article in Healthline reveals encouraging treatment therapy that may help to destroy dangerous cancer cells. Professionals from the Burzynski Clinic weigh in on these new developments.

Oh, goody. Burzynski's going to weigh in on someone else's work. I can't wait. It's rather like me commenting on art history. Actually, it's worse than that, because I do have a modicum of knowledge about art history. It's a tiny bit of knowledge, but I guarantee you that the quality and breadth of my knowledge about art history likely exceeds the quality and breadth of Stanislaw Burzynski's understanding of cancer. That is, of course, not saying much, but it should give you an idea of the amusement that watching Burzynski comment on new science should provide. True, it probably won't be as hilariously off-base as the time Burzynski, in his arrogance of ignorance, proclaimed himself a pioneer in personalized cancer therapy so awesome that M.D. Anderson follows his lead, but it should be amusing.

In any case, this appears to be the story that prompted Burzynski to comment, and this is the study that prompted the news story. It's an interesting concept, a new class of drugs targeting tropomyosin, a core component of actin filaments. (Actin filaments make up the cytoskeleton of cells.) If the tumor cytoskeleton is impaired, then tumor cell motility can be affected. Indeed, that's the mechanism by which taxol and taxanes work; they target another component of the cytoskeleton, tubulin. This blocks cell cycle progression and prevents mitosis. Similar results, apparently, are observed with TR100 due to its ability to selectively act on the tropomyosin in tumor cells, which sounds promising. In particular, what looked especially good is that there didn't appear to be any cardiac toxicity, which is always a worry for a drug that inhibits tropomyosin.

All of which is basically what Burzynski says, but he appears to have basically cribbed his statements from press releases on the drug, particularly the part at the end, where it states:

Professionals at the Burzynski Clinic are keeping their eye on these promising developments, but have some reservations.

And:

The Burzynski Clinic is interested to see the results of future clinical trials.

Well, duh. You could say that about virtually any new class of drugs. Only the specific reservations would vary.

This press release, as inane and uninformative as it was (not to mention utterly pointless), made me wonder what Burzynski's been up to. Idly, I clicked on the link to the Burzynski Clinic in the press release and immediately noticed that it was a different site than the original Burzynski Clinic site. The old site is the same old Burzynski site we've all come to know and despise. It's fairly slick and well-designed. The new site is pretty bare bones and proclaims:

What makes this clinic so different?

This clinic stands out from others because its staff attempts to directly treat the genes that are being overexpressed and that are associated with certain difficult forms of cancer. In addition, this treatment center provides patients with numerous treatment options.

How does this clinic treat cancer?

Every form of cancer is essentially caused by a combination of abnormal genes. Because this combination will ultimately determine the progression of the disease, it is best to attack cancer at the source. The specialists at Burzynski Clinic will design a personalized treatment regime for each patient, taking into consideration the effect that genes have on the overall outcome.

All of this is standard, post-antineoplaston Burzynski nonsense. As I've explained many times before, what he does resembles cutting edge personalized gene therapy only in that he uses targeted agents. He does it so poorly that I call Burzynski's version of it "personalized gene-targeted cancer therapy for dummies."

What's deceptive about the website (and quite typical of Burzynski) is the the choice of testimonials to "prove" how awesome Burzynski is. Some of the names are familiar, such as Tori Moreno, who was treated with antineoplastons, Burzynski's peptides that he isolated from blood and urine so long ago and proclaimed to be the be-all and end-all of treatment for advanced malignancies. She wasn't treated with Burzynski's personalized gene therapy concoctions at all. Ditto Elizabeth Mora and Mary K. Brittain, who was also treated with antineoplastons, and Carol Bricker and Tracy Edry, who were both treated with Aminocare (antineoplastons) and pheynylbutyrate, which is also, in essence, antineoplastons. Most of these patients used for testimonials for Burzynski weren't treated with his witches' brew of targeted therapies based on his "personalized gene-targeted therapy." Of course, all that Burzynski has left is his "personalized" therapy because the FDA put a partial clinical hold on antineoplastons back in the summer of 2012 for pediatric patients, a hold that was extended to adults early this year. Burzynski can't enroll new cancer patients in his bogus antineoplaston clinical trials, although he can keep treating the patients he already has.

Something appears to be going on. I'm not sure what, but something's definitely going on. I notice that the Burzynski Patients Fight Back site has been redesigned so as to be less obnoxious from a design standpoint, although it is every bit as silly from a content standpoint. Meanwhile, the @BurzynskiSaves Twitter feed has been reborn as @BurzynskiSaves1.

As the old song goes: There's something happening here; what it is ain't exactly clear.

oracknows Sun, 09/08/2013 - 21:22

Tags

Categories

http://www.theguardian.com/science/2013/aug/30/six-stubborn-myths-cancer

I saw tis article and immediately thought of you. The original is on the Guardian, if you can't read it.
http://www.timeslive.co.za/thetimes/2013/09/09/six-stubborn-cancer-myths

Huh. The new Burzynski site's Treatment Experience and Therapies pages have Google Adsense ads, sponsored links and comments sections, as if they were someone's blog trying to make a few bucks.

I too noticed the new Burzynski Clinic website last week and was confident that Orac would shine some insolence on it.

What stood out for me is that it seems like a homemade site, based on a WordPress-style template, that includes a Google Adserver panel down the right side that offers up ads for other alternative crap like Essiac and body detoxing. There's also a Disqus comments section. No comments so far. It'll be interesting to see if any negative comments are moderated or deleted. Maybe someone here should test the waters?

But probably the most striking thing is that there isn't a single photo of Slimy Stan, his clinic, the exterior of the building, etc. The only photos are stock shots of distinguised-looking movie-star handsome doctors in white lab coats and stethoscopes talking to eqaully-handsome, smiling, happy "patients."

Other than the testimonials Orac mentions, there are no links to any of the "scientific" documents on the original website, no links to the movie site, not links to the BPG, nothing.

The original site is still up. One has to wonder if this new site (which is .org, interestingly enough, usually reserved for non-profits and public service sites) is intended to replace that original site eventually.

My mistake. The new site is .net, not .org. I shouldn't post comments at 4:30 a.m.

I also noticed there is no contact information anywhere on the new site, not even an address or phone number. There is no way to e-mail the clinic from the new site either. This is indeed very very strange.

Pay attention to the first line of this paragraph from the new site. It's almost as if someone is trying to say "despite all the bad press you might have read, the FDA trouble and the fact we can't use ANPs anymore, we are still open for business so c'mon down and bring your chequebook..."

Over the last few years, Burzynski Clinic has remained fully operational and very busy treating patients from all over the world with a variety of difficult cancers. If you are currently planning on coming to this unique and amazing medical facility to receive cutting-edge therapies, you have made the right decision! Although it is perfectly natural to feel anxious about coming in for treatment, you can rest assured that the caring, knowledgeable staff at this clinic are prepared to handle any of your needs...

I've been hoping for a Burzynski article to announce this:
Daughter-in-law seems to have survived Gliobastoma Multiforme!
=================================
In Previous Episodes: About 16 months ago, DIL was diagnosed with GBM. She lived in Tacoma, WA at the time. Our son died of diabetic kidney failure, etc, 12 yrs ago, so he wasn't available.
Her initial treatment, radiation augmented with a chemo agent, started right after the biopsy, at some major hospital in the SeaTac area (UW?). They then returned to DIL's biological family's home in San Diego County for followup chemo and a little more radiation therapy at Scripps (where DIL's sister works).
(Our info has come from DIL, sometimes through GrandDaughter, to my wife, then to me and then you — this telephone game leads to incompleteness and potential inaccuracies, despite Wife being a retired nurse.)
Previous report was that DIL's oncologist had said, ca June, "You're going to be a longterm patient."
-------------------------------
Last week, DIL suffered a fall, hit her head, and was hospitalized for observation. That was the opportunity for yet another MRI and further testing. The result of all that was announced as "Cancer Free."
We all know that such a pronouncement is provisional, but it's still great.
Naturally, she has damage from the GBM and the treatment: speech, balance, and motor problems. (That should pin down the location for the medical pros around.) Rehab starts right away. DIL's goal is to be able to return to work, if speech and motor therapy allows. First thing is to move out of sister's spare room... .
------------------------------------------------------------
What's the Burzynski angle? DIL wasn't about to fall for Stan-baby's nonsense, the Burzynski worshippers' claims that GBM is only survivable using ANPs.
---------------------------------------------------

I wonder if the new site is actually set up and operated by Burypatients? It's on a different host and with a different registrant - with anonymity for the actual owner - and the domain name was bought only three weeks ago.
I'm wondering if it's actually the work of some click-farmer, entirely unconnected with the clinic, who discovered that burzynskiclinic.net was unclaimed, and decided to take advantage.

I agree, sophia8. The .net web site is so at odds with the .com, including no clear way to contact the clinic and no glowingly padded CV for Stan. Also some of the pages have comment sections at the bottom where anyone can leave a comment.

Krelnik suggested that they may have wanted to prevent people from buying the domain. Because god knows it would be mine if I had realized it was open. :)

As a person who has cancer I can't thank you enough David. Keep at this despicable human being until he can no longer reap the rewards of his lies and quackery.

Idly, I clicked on the link to the Burzynski Clinic in the press release and immediately noticed that it was a different site than the original Burzynski Clinic site.

Given the weirdness of the .net site other posters have noted above, I have to ask: how do we know that this is Burzynski himself, rather than a click-farmer who is spoofing Burzynski? While I agree that Dr. B would have "reservations" about anybody else's cancer treatment techniques, the description in the press release of this technique being "promising" seems out of character.

Julian Frost (comment #1)

Here is the link to the original version of the article. Count Stan gets a mention and there are comments after the article.

On another message board, I had the misfortune of dealing with a particularly odious fellow who caused no end of difficulties for the site. Eventually, we were able to drive him off, but it took a lot of effort. Later, I learned he had lost his job as a security guard and had become a click farmer in order to support his increasingly vitriolic anti-semitic screeds on the Internet. He eventually dropped off of the Internet altogether, and I wonder if he got committed to an institution or died or what.

Given the "quality" (and I use that term loosely) of this site, I'd suspect click farming.

@Bob #9, re:

Krelnik suggested that they may have wanted to prevent people from buying the domain.

In that case it should have been easier just to redirect the ".net" traffic to the ".com" site instead of building a new one.

David Grimes' piece originated in the Grauniad: http://www.theguardian.com/science/2013/aug/30/six-stubborn-myths-cancer

The comments are worth a skim.

Not if I got to it first, Bobio.
I find it interesting that the "new" patients fight back site was altered just a couple of days after the .net clinic page, both to wordpress formats. Correlation/causation etc. YMMV.

MedTek: No.the patients's site is genuine. It's hosted on Wordpress.com and so doesn't have ads. And would Stan allow an imposter to use that stunningly hagiographic potrait of him?

I can't add anythingof value to the Great Website Mystery, but this is amusing:

I work at a comprehensive cancer center and when clicking BOTH the old and new links in the post from my work computer, I'm met with a security message: "Access to this website is blocked: potentially dangerous material." It knows.

If only the rest of the world received that message too.

Guy,

it gave me great satisfaction to alert The Guardian about DJT, who I knew would be posting there once the "Myths" story hit Twitter. (He simply can't resist posting his inane comments anywhere Stan is written about.)

I told The Guardian about his back story, having being banned from all science blogs around the world, Wiki, Reddit, suspended from almost 20 Twitter accounts, etc. and that he was a paid shill and/or an employee of Burzynski.

Within 20 minutes his comment was scrubbed from The Guardian site which started him off on another week-long tirade about censorship and freedom of speech.

Of the over 400 comments that were posted, only two were deleted: one from DJT and one from someone else caught shilling.

And yes, many of the pro-alt comments there were frightening.

MedTek,

Actually, Sheila Herron had modified her "Fighting Back" site even earlier; after it was first ridiculed here and all over Twitter. That second version stayed up for a week or so, and then the third (and current) version went up a few days ago.

She keeps threatening to "expose" the skeptics, and yet the most active Burzynksi critics around the world use their own real names, so what is there to "expose"?

I notice she's using links to various psychic and paranormal websites to explain what a "skeptic" is.

WF: Yes, she is particularly enamoured with the Bolen stuff, alerted to that from @ZimJay. I'm not sure if she's figured out yet that I now live about 40 miles away from her.

While I realise that the fight back site has been up for a while, I am curious when it moved to wordpress, as it seems to have been done at the same time as the clinic .net site was created, also in wordpress.

Coincidentally (or maybe not) around the same time as all this new activity on Count Stan started last week, Eric Merola posted this on his Facebook page, which has been unusually quiet the past several weeks:

I just want to ask a random question - what do you think will happen when the Japanese Randomized Clinical trials of Antineoplastons (ANP), showing double the survival rate in the ANP group - hit peer-review publication?

Do you think the National Cancer Institute and the American Cancer Society will update their materials documenting that randomized studies are complete, peer-reviewed, and published? Do you think the paid Astroturf campaign who own the Wikipedia page will allow Wiki to be updated? Do you think those same people will boycott the medical journal who publishes it? Will oncologists, after reading the peer-reviewed randomized study finally accept it as the proven therapy it is? Will the FDA allow ANP to enter the so-called "free market" - finally?

Share your thoughts.

https://www.facebook.com/pages/Burzynski-The-Movie/318281183441

MedTek,

My local newpsaper in Montreal ran a homeopathy-debunking article last week written by a prominent McGill chemistry professor (and someone who has been very active publically for many years here fighting woo and debunking all manner of pseudoscience.)

All the usual homeo-promoters flocked to the comments for equal time, and several quoted Bolen, Natural News and whale.to to try to discredit the skeptics who were also posting comments. A veritable Holy Trinity of crackpottery! So I smile when I see @ZimJay and the Burzynski fans latch onto Bolen too. Since we're homoskeptical pedophiles,don't 'cha know.

Has anyone tried to past a comment on the new Burzynski Clinic website to see what happens? Particularly something questioning Burzynski, or asking for some evidence that the claims on the site are true? Or even simply asking how much the treatment costs?

The .net site is hosted on a flare360.info box. I'd say it's highly unlikely this is a legitimate undertaking.

Domain ID:D44443293-LRMS
Domain Name:FLARE360.INFO
Created On:09-Dec-2011 10:35:44 UTC
Last Updated On:09-Dec-2012 22:23:07 UTC
Expiration Date:09-Dec-2013 10:35:44 UTC
Sponsoring Registrar:1&1 Internet AG (R113-LRMS)

I suppose "hosted" might have been going too far. Anyway, the same box also used to serve cfrederickwehba.net and syschlagersite.com, both defunct. One that is live, though, is richgormanbio.com. Not exactly the same league as the former two, eh?

^ Oh, wait, I screwed up: cfrederickwehba.net (s7.flare360.info) is answering now. The similar cfrederickwehba.org is on s8.flare360.info. Very peculiar.

BREAKING NEWS! I just checked and burzynskiclinic.org is untaken.
Somebody, jump on it now!

ht_tp://burzynskiclinic.net ain't working for me. Have you people broken your new toy already?

I'd think that burzynskiclinic.org would be a good site for a ski instructor school.

In other cancer related news, I'm probably not posting anything that Orac isn't already aware of, but Dr Daniel Kopans, who has previously featured on this blog, is back has had another intervention into the Mammography debate:

http://www.nbcnews.com/health/new-salvo-mammogram-wars-says-young-women…

Also, the Neon Roberts documentary, that I and others previously mentioned: those who couldn't see the (geolocked) 4OD version might have more luck with the Channel 4 Youtube version:

http://www.youtube.com/watch?v=9amWsHIIEZE&gl=US

burzynskiclinic.org would be an excellent repository for all the links leading to the stories about Stan on ScienceBlogs, TOBPG, and the many, many excellent and informative posts from Josephine Jones, Guy Chapman, Rhys Morgan, Andy Lewis, Peter Bowditch, Beatis, etc.

Herr Doktor,

Thr link works for me but only if I do "direct." If I click on the link from the news release Orac mentions it seems to be dead. The URL is identical so I don't understand why one works and the other doesn't.

Try it this way and enjoy the stock photos!

http://burzynskiclinic.net/

The URL is identical so I don’t understand why one works and the other doesn’t.

Sounds like the owners of the site have set it to not accept click-through traffic from some other locations.

@DoctorBollocks and Guy Chapman, thank you both for the links to the original.

@Narad #27.
Internet is a legitimate UK web hosting company. At least I hope they are legitimate as I have a couple of websites hosted on their servers!

Odd, that should read "1&1 Internet" but something ate the "1&1"

Internet is a legitimate UK web hosting company. At least I hope they are legitimate as I have a couple of websites hosted on their servers!

I thought 1&1 was actually Schlund. In any event, I wasn't commenting on them. They have had a reputation in the past of getting too big too fast and not expanding their abuse department commensurately, but whatever. Just offhand, at the moment, their MX 74.208.4.194 is listed in SORBS.

#38 linkbot - the scary black helicopter psychosis is strong with that one.

@JKW - I don't this IDJiT's blog is even English anymore.....his formatting his so god-awful....

#43 Lawrence:

It never really was.

Was that #38 person claiming that Orac took a chunk out of Winnie the Pooh? He seems to be a Bear of Very Little Brain indeed.

Lawrence, JKW, Khani, ORD -

I put my brain cells in jeopardy to check out iDJiT's blathering. Stripped of the word salad, it's a response to Woo Fighter's comment at 21, where he says that he (WF) notified the Guardian of iDJiT being persona non grata status just about everywhere and a paid shill for Burzynski.

iDJiT's contention is that he is not a paid shill for Burzynski and besides there's also some places where his spamming hasn't gotten him banned yet; ergo WF's statements to the Guardian were lies.

In My Humble Analysis, the issues pretty much break down to two: his banned status, and whether he's a paid shill for Burzynski or not.

As regards the former, I think the doctrine of "substantial truth" probably applies, morally if not legally. The fact is that iDJiT's abusive spamming has gotten him banned from multiple blogs; getting the exact number wrong doesn't really rise to the level of "lie".

As regards the latter, if iDJiT isn't Burzynski's representative, what is he doing setting up a WordPress blog under Burzynski's name?? We're supposed to believe that the same Burzynski who employed the infamous Mark Stephens is looking the other way while someone who isn't his representative operates stanislawrajmundburzynski.wordpress.com?

In any case, what iDJiT seems not to realize (besides how much of a freaking loony he looks) that the Guardian is very, very unlikely to ban one commenter based solely on another's say-so. Woo Fighter may have alerted them to iDJiT's history, but without a doubt, iDJiT's ban was due to his own self.

Speaking of iDJiT, did he ever had any comments on his blog?

Alain

What is the sound of one looney commenting to himself?

Ask iDJit.....

I know who I would believe......and it ain't you skeptic septics

@Sheila - how insightful.......

I know who I would believe……and it ain’t you skeptic septics

Why would you expect that to be of interest to us?

You say absolutely nothing about why you would believe whoever and whatever it is you believe, and that's the part that's of interest to intelligent adults.

Here's a couple of hypothetical scenarios:

You tell us that you believe Stanislaw Burzynski, and disbelieve Orac's criticism, because Burzynski has finally completed a clinical trial and the results actually do show effectiveness. In such a scenario, we'd all be very interested to find out the details of this completed clinical trial and see whether it's as solid and convincing as you think it is.

You tell us that you believe Burzynski because you've heard lots of amazing anecdotes about him. Guess what. Every cancer scammer ever has had lots of anecdotes. Some of them even had anecdotes that were true. They just weren't the whole of the story. Wake us up when you've got a reason that's more substantial.

You tell us that you believe Burzynski because the Ouija board told you he was trustworthy. Why on Earth would you even expect anyone to care that you chose to believe Burzynski on such a stupid basis? And yet, we have absolutely no reason to think you have a better basis for your belief in Burzynski.

...and reaching for more vomit-bags .....

this article is quite confusing and should be simplified.

Odds and ends left over after the Panorama Burzynski Clinic report: Burzynski versus his own SEC filing

oracknows — Wed, 05 Jun 2013 04:00:01 +0000

Odds and ends left over after the Panorama Burzynski Clinic report: Burzynski versus his own SEC filing

I realize that I've been focusing on Stanislaw Burzynski the last couple of days, but it's just been one of those weeks. Between the release of Eric Merola's latest paean to the Brave Maverick Doctor and BBC Panorama's report on Burzynski and his activities, it's been an eventful week. My review of the second Burzynski movie and the Panorama report explain a lot, but there are some loose ends left over. So I might as well take care of that today before resuming regular blogging topics. (Yes, I know Stanislaw Burzynski is a regular blogging topic, but too much of a bad thing can get tiresome, no matter how much outrage I feel and express over his activities, leading to heapin' helpings of not-so-Respectful Insolence.

As devastating as the Panorama story was, complete with Burzynski smirking his usual annoying, smug smirk and asking the reporter if he has Alzheimer's disease because he's asking him the same question (stay classy, Stash, stay classy), there were a lot of aspects dealt with little or not at all. First and foremost of those issues not dealt with whose absence was a huge mistake was the issue of the most recent FDA investigation of the Burzynski Clinic. It's so bad that Josephine Jones is openly wondering whether Burzynski lied to the BBC. Regular followers of the Burzynski saga will remember that in January the FDA showed up at Burzynski's operations to investigate. As Merola likes to harp on, FDA investigators stayed until March. Currently, we are awaiting the FDA's decision, which is usually posted to the FDA website in the form of a formal letter. In any case, the reason this is relevant is because the FDA put a clinical hold on antineoplastons and barred the enrollment of any new patients on any of Burzynski's protocols. Moreover, in response to a warning letter from the FDA last fall about promoting an unapproved drug, in January the Burzynski Clinic removed all references to antineoplaston therapy on its website, which is rather like Major League Baseball removing all references to, well, baseball on its website.

To recap, we know that last year a child suffered a severe adverse reaction to antineoplaston therapy, which led to the FDA putting a clinical hold on antineoplastons for children. Then, in January apparently, the clinical hold was placed on antineoplastons for adults as well, although apparently patients already receiving them could continue to do so. Actually, I wondered about that when I saw a rather fascinating part of the Panorama report, namely a tour of Burzynski's manufacturing facility, which, we are told, can crank out 300 L of antineoplaston solution per day.

Which brings us to one of the odds and ends I wanted to touch upon, and it's an issue that Josephine Jones touches on as well. Throughout Eric Merola's infomercial for Burzynski and the BBC Panorama report, we are told by Burzynski, his acolytes, and his shills that antineoplastons will be approved by the FDA "soon," that he's been doing the trials to gain FDA approval over the last 15 or 20 years, and, oh, by the way, not to worry. We have been promised repeatedly that all those phase II clinical trials that Burzynski registered will similarly be published "soon." Even Pete Cohen, Hannah Bradley's partner, showed up on BBC Radio 5 promising that Burzynski is furiously submitting manuscripts for publication. But what's really happening?

Josephine Jones points us to this recent SEC report for the Burzynski Research Institute for the fiscal year ending February 28, suggesting that we read the section entitled Partial Clinical Hold on Phase II and Phase III Clinical Trials. So I did. Now I'm not a businessman, and I don't understand anything but the very basics of business. A lot of these SEC reports might as well be Greek to me, but I do know cancer science. I also know what Burzynski and his acolytes have been saying, one of which is that the phase III trial wil probably never be done because it's "too expensive." Yet in the report, we read:

On February 23, 2010, the Company entered into an agreement with Cycle Solutions, Inc., dba ResearchPoint (“Research Point”) to initiate and manage a pivotal Phase III clinical trial of combination Antineoplastons A10 and AS2-1 plus radiation therapy (RT) in patients with newly-diagnosed, diffuse, intrinsic brainstem glioma. Research Point has secured interest and commitments from a number of sites selected. Upon completion of this assessment, a randomized, international Phase III study will commence. The study’s objective is to compare overall survival of children with newly-diagnosed, diffuse, intrinsic brainstem glioma (DBSG) who receive combination Antineoplastons A10 and AS2-1 plus RT versus RT alone.

Three years should be plenty of time to line up clinical sites for a phase III trial. Of course, given that after three years the clinical trial hasn't been opened, more than likely no reputable institution wants to partner with the Burzynski Research Institute, and ResearchPoint collected its checks. Then came the partial clinical hold, which affected this phase III trial as well as all the phase II trials, and, fortunately for patients, Burzynski's antineoplaston operation is shut down. Revealed in the SEC report, of all places is why.

It's a long excerpt, but I think it's important. There's a lot of legalese and FDA bureau-speak, but the meaning should be fairly clear to a layperson:

In a letter dated June 25, 2012, the Company informed the FDA of a serious adverse event which may have been related to the administration of Antineoplastons. On July 30, 2012, the FDA placed a partial clinical hold for enrollment of new pediatric patients under single patient protocols or in any of the active Phase II or Phase III studies under IND 43,742. The FDA imposed this partial clinical hold because, according to the FDA, insufficient information had been submitted by the Company to allow the FDA to determine whether the potential patient benefit justifies the potential risks of treatment use, and that the potential risks are not unreasonable in the context of the disease or condition to be treated. The FDA cited 21 C.F.R. § 312.42(b)(2)(i), 21 C.F.R. § 312.42(b)(1(iv), and 21 C.F.R. § 312.42(b)(3)(i), as grounds for imposition of a clinical hold; and 21 C.F.R. § 312.305(a)(2), a criteria for expanded access use. The FDA advised the Company that until it resolved the matter to FDA’s satisfaction, the Company could not enroll new pediatric patients in any protocol under such IND. The Company later notified the FDA in a September 24, 2012 letter that it was closing pediatric protocol BT-10 (under IND 43,742) for enrollment effective September 25, 2012, and that it would also terminate the protocol once all active patients had completed the study.

In other words, no more antineoplastons for children, not now, and, hopefully, not ever. Burzynski can continue to treat children on his protocols who had already started treatment, but that's it. This is very good news. After all, the Burzynski Research Institute is shutting down the pediatric protocol.

This ultimately led to the partial clinical hold being extended to adults:

In a teleconference on January 9, 2013 between the FDA and the Company, followed by a letter of the same date, the FDA notified the Company that the agency was placing IND 43,742 on partial clinical hold, due to a lack of a complete response to the issues raised by the FDA and what the FDA deemed a misleading, erroneous, and incomplete investigator brochure. The FDA cited 21 C.F.R. § 312.42(b)(2)(i) and 21 C.F.R. § 312.42(b)(1)(iii), as grounds for imposition of a clinical hold. The FDA further advised the Company that until it resolved the matter to the FDA’s satisfaction, that the Company could not enroll new adult or pediatric patients in any protocol under such IND. The FDA also placed protocols B-52 and B-54 on clinical hold due to what the FDA deemed to be an unreasonable and significant risk of illness or injury to human subjects. The FDA cited 21 C.F.R. § 312.42(b)(2)(i) and 21 C.F.R.§ 312.42(B)(1)(i), as grounds for imposition of a clinical hold. The FDA advised the Company that until it resolved the matter to FDA’s satisfaction, the Company could not legally conduct the identified clinical studies under such IND.

In a letter dated April 9, 2013, the Company responded to the issues raised by the FDA in its January 9, 2013 letter to the Company. In a letter dated May 9, 2013 from the FDA, the FDA advised the Company that the Company’s April 9, 2013 letter was not a complete response to all the issues listed in the FDA’s letter dated January 9, 2013, and the FDA also identified the issues that were not fully addressed by the Company’s response. The FDA further advised the Company that until it satisfactorily addressed all the issues in the FDA’s letter dated January 9, 2013, that the FDA could not complete its review, and the clinical hold could not be removed.

So basically, the FDA extended its clinical hold; the Burzynski Research Institute answered the FDA's charges; and the FDA was not satisfied. Until the Burzynski Research Institute can adequately address those concerns, there will be no new patients enrolled. If I were a betting man, I'd bet that no new patients ever will be enrolled because maybe, just maybe, the FDA is finally cracking down on Burzynski for real. At least, that's whI hope. I'm all too aware that it looked just as bad for Burzynski in the 1990s, which was the last time the FDA made a serious run at the Burzynski Research Institute, and Burzynski managed to slither away, to come back bigger and stronger than ever. Even so, Burzynski's own SEC filings suggest that all the bold talk of imminent approval of antineoplastons by the FDA and publication of the papers that will prove to the world that antineoplastons work are pipe dreams, stories to keep the marks on board and hoping. Indeed, even the report seems to concede that antineoplastons will likely never be approved, even going so far to point out that "the Company cannot predict if and/or when it will submit an NDA [New Drug Application] to the FDA, nor can the Company estimate the number or type of additional trials the FDA may require." Burzynski also warns that "there can be no assurance that an NDA for Antineoplastons, as a treatment for cancer, will ever be approved by the FDA."

That hardly sounds as though antineoplastons will be approved "soon." After all, an NDA hasn't even been submitted, and Burzynski is saying in his own SEC filings that he can't predict when an NDA will be filed. Presumably if Burzynski were truly on the verge of getting antineoplastons approved by the FDA he would have said so in his SEC filing. That's why his SEC filings are so revealing. Burzynski can distort, exaggerate, and even lie to the public, but lying on an SEC filing would carry serious consequences.

Notwithstanding the response results of the trials that have reached a Milestone, management believes it is likely that the FDA may require additional clinical trials based upon such protocols to be conducted by an institution not affiliated with the Company or Dr. Burzynski before advising that an NDA filing is warranted. In addition, the FDA has indicated it will not accept the efficacy data, but will accept toxicity data generated by the Phase II study according to Protocol CAN-1 because the trial was partially retrospective. At this time, the Company cannot predict if and/or when it will submit an NDA to the FDA, nor can the Company estimate the number or type of additional trials the FDA may require. Further, there can be no assurance that an NDA for Antineoplastons, as a treatment for cancer, will ever be approved by the FDA.

No assurance can be given that any new IND for clinical tests on humans will be approved by the FDA for human clinical trials on cancer or other diseases, that the results of such human clinical trials will prove that Antineoplastons are safe or effective in the treatment of cancer or other diseases, or that the FDA would approve the sale of Antineoplastons in the United States.

Another interesting tidbit in the SEC filing is Burzynski's report of the results of several of his clinical trials. They aren't really "results' per se, in that the information presented really isn't provided in a form that really allows other investigators to evaluate it and potentially replicate it. Basically it's a big table listing Burzynski Research Institute clinical trials and response rates reported. One thing that I noticed right away is that in most trials, the number of evaluable patients is smaller, sometimes much smaller, than the number of patients accrued. This is a huge red flag. For instance, in trial BT-20, there were 40 patients accrued by only 22 were evaluable. This sort of dropoout rate is a huge red flag. We don't know the reasons for this dropout rate. It could certainly skew the results, but even that's impossible to tell from just a table of response rates and no further information. Of course, I realize that this is an SEC filing, not a scientific paper in the peer-reviewed literature, but if Burzynski has all this data to produce this table it boggles the mind that, given at least a decade and a half since these trials began, he hasn't been able to publish any meaningful data thus far. That he hasn't been able to do so is also a big red flag.

One can't help but wonder why BBC Panorama didn't look at this information. It could easily have fit into the narrative. Imagine a more prepared reporter, faced with the confident and sarcastic bloviation from Burzynski that antineoplastons will be approved "soon," pulling out Burzynski's own SEC filings and telling him that that's not what he said in those filings. I can only imagine two reasons Bilton didn't do that: The report wasn't out when the interview occurred (which is possible, given the mentions of a date in early May) or lack of preparation. If it were the former situation, a more prepared reporter could have hammered Burzynski on how he could possibly say so confidently that antineoplastons were going to be approved "soon" with partial clinical holds by the FDA on children since the fall of 2012 and on adults since January 2013. These are hardly the sorts of issues that suggest imminent approval, contrary to Burzynski's statements, which now must be viewed, in my opinion, as outright lies. Indeed, even if the SEC filing wasn't published yet at the time this interview took place, imagine a voiceover tacked on after Burzynski's statement pointing out that his own SEC filings contradicted his assertions. Moreover, bringing up these issues would arguably have fit into the narrative perfectly to point out that Burzynski is still promoting antineoplastons through surrogates by saying that FDA approval is imminent when, according to his SEC filing, he apparently hasn't even filed an NDA yet. As much as the BBC got right in its coverage of Burzynski, aspects of its Panorama episode on Burzynski were pure frustration to those of us who have been following Burzynski for a while.

oracknows Wed, 06/05/2013 - 00:00

Tags

Bioethics

Clinical trials

http://www.youtube.com/watch?v=GdZf5_El1Pw&feature=youtu.be

Stan is basically stuck in a Catch-22 situation. Enough people are now aware that he has had long enough to gather 'data' and prove whether his treatment works or not, and what the side effect profile actually is. If he publishes, then he'll have to properly reveal his protocols, and the real identity of the drugs (PA, PAG, PB, all of which are off-patent and can be bought easily), and then other doctors around the world can start using them, so nobody needs to come and pay him $$$$$$. If he doesn't publish, or show enough evidence of efficacy, enough people are now suspicious that it's no good (putting off potential patients), and the FDA can clamp down properly. In which case, no more patients and no more $$$$. Either way he loses, and hopefully thirty years of audacious claims and misled patients comes to an end.

Depending on whether or not Burzynski is listed as an officer of the company, he's not "strictly" held to the statements in the SEC filing.....because of Sarbanes Oxley & other financial regulatory changes, the CEO / CIO of any company can be held criminally-liable for misinformation contained in any SEC filings (they are required to sign-off on all information as "factually accurate and correct).

Again, if Burzynski isn't listed as an officer, he can say whatever he wants about ANP or any other treatments, since he's not "officially" part of the leadership of the clinic.

Of course, it would be interesting to take a run at the new head of PR for the company to explain the discrepancies between what Dr. B has stated publicly and what the Clinic is telling to the Government (and potential investors).

If the Panorama team were aware of the SEC filings it would be unlikely to report them.

The programme is pitched at a certain level, a level which seems to decrease year on year, and trying to even explain what SEC filings were would take up a fair bit of time.

You'll have noticed that the language/tone of the programme isn't exactly high-brow. The target audience of BBC1 isn't intellectuals or professionals. The content is made so that it's understood by, and accessible to, as large an audience as possible, so that the channel can grab the largest audience share.

Although BBC1 do put out some absolute gold sometimes, it's almost all from the Wildlife dept. We're talking about a channel where, of the five largest viewing figures in the channel's history, four of those slots are occupied by Eastenders.

They don't want to turn viewers off by being too technical or in-depth, so Panorama's "investigations" are, all too often, just human interest stories masquerading as hard-hitting investigative journalism. There are a few good episodes from the last few years, but even a stopped clock is right twice a day.

I'd love to see a full-length documentary into Burzynski on BBC4, or even a strong segment on Newsnight, Jeremy Paxman would rip Scamley up one side and down the other, but I doubt it will ever happen.

I really hope this is the end of the Piss-poor Protocol. Now if only someone could clamp down on his fantasy "gene-targeted therapy".

A potential reason for a high dropout rate is that the patients may be unable to complete a full treatment (whatever that is), likely due to inability to pay. Not only is charging for participation in clinical trials unethical, it also screws up the study because financial limitation interferes. (And provides a delay before starting treatment that makes a handy excuse.)

If Burzynski really wanted to get these trials completed, he would set things up so that the barriers to enrolling were as small as possible. For these desperate people seeking hope, the biggest barrier -- and what we've seen delays the start of treatment by significant months because of the up-front charges and then causes dropouts when they cannot continue to pay -- is $$. And his mansion and I-came-here-with-nothing tale suggests that these costs and that barrier are significantly higher than necessary.

Several patient stories have mentioned the escalation in charges and additional fees as they progress. In some cases is seems to result in taking every penny they can raise, much sooner than they anticipated, and then forcing them to drop out. In some cases they suspend treatment while trying to get more money, which is hardly a way to test a protocol. It does make them easy to exclude -- even from a collection of anecdotes -- while taking everything.

Meanwhile, I'm curious how his pushing off responsibility onto others squares with him being the one who is personally paid rather than the clinic (or the treating physician). How are these funds classified (e.g. for taxation)?

Also not mentioned is that donations to the clinic are preferred by personal check made to DR B (or at least, that used to be the case). Dodgy as hell.

@Patricia - after reading through some of the financials, it certainly appears to be a pretty messy situation over there.

1) Burzynski owns the building where the Clinic is based & he charges the Clinic rent.

2) Burzynski also provides all of the operating capital for the Clinic, but charges back for (again rent) and other expenses related. This allows him to skim off any and all profits from the clinic in the name of "expenses" leaving them to report either a small loss or net-neutral revenue.

3) Members of the IRB (which are supposed to be Independent of the organization they oversee) are actually sitting on the Clinic's Board of Trustees.

This is a very complex web of financial arrangements that allow the Clinic to operate, Burzynski to take all of the profits as "business expenses" related to the Clinic, and basically makes the Clinic report "Zero" Profit & not pay taxes on it.

Scary stuff.....

I predict that Stan will do a swift ass-covering exercise with the antineoplastons. He won't publish his "results" (he doesn't want to, obviously [presumably ANPs are useless] and if tried he'd be laughed out of the building), and so he thinks he can weasel out of presenting any meaningful data by pretending the nasty FDA has stopped him being able to.

Once this particular failed bridge is burnt he will be able to concentrate on his new scam, "gene targeted" therapy.

But "gene targeted" therapy is done through Caris testing and uses approved Big Pharma drugs (eg Tarceva etc), which come with huge cost and a raft of potential adverse effects. So he'll quickly lose the support of the "no chemo"/alt-med brigade.

As SB is making lots of statements that run contrary to the information contained in the SEC statement he could be in real trouble for market manipulation. As a publicly traded company you can't state "we're doing great" when you're doing lousy. It would be poetic justice if he goes down for SEC violations, like Al Capone went down on tax evasion charges.

For those of us in North America who have not been able to see the Panorama episode yet, the entire 30-minute segment has just been posted on YouTube:

I'm confused: a few minutes ago the entire 29 minute episode was there (I swear!); now it's just a three-minute snippet that gets cuts off midstream. Did the BBC pull the entire episode for some copyright reason? This is very frustrating as I just set aside a half-hour to watch it.

Lawrence @2: IANAL, but don't the liability provisions of Sarbanes-Oxley only apply to official financial statements of the company? He gives the straight story in the SEC filing because doing otherwise would be a felony. As for what he says to the public, there is an abracadabra involving the words "forward-looking statements" which he can invoke to make shareholder lawsuits disappear. Anything he says about putative publications or prospective FDA approvals would qualify as "forward-looking statements." I haven't checked his press releases, but Burzynski would be stupid not to take advantage of that loophole, and I haven't seen any evidence Burzynski (or his lawyers, who should have pointed out this rule to him if he had been unaware of it) is stupid. Maybe he got careless, but I would expect that Burzynski has covered his posterior.

Here's the link to the BBC iPlayer: http://www.bbc.co.uk/programmes/b02vdg1t
I believe the word "proxy" might help you with an internet search as to how to watch it.

@Lawrence : thanks.

Though how does he pull claiming the money is expenses (and the clinic is responsible, not him) when it's paid to him personally, directly by the patients?

And who owns his house? Building and maintaining that must be hugely expensive, hard to do that without personal taxable income. Or does he somehow charge that to the clinic too?

It seems the full Panorama episode is back up on YouTube at the link I posted above.

Patricia: in 2010, according to Harris County records I easily found online, his property taxes alone were over $100,000.

@Mu - depending on how the ownership is structured, you'd be surprised at what people can get away with.....

@Eric - if Burnzynski isn't an "officer of the company" it really doesn't matter, since he wouldn't have to sign off on the financial statements.

In fact, in reading the filings, Burzynski is presented as more of a landlord / consultant, than an actual owner or partner in the company / clinic.

Then if he's not actually part of the company, why does it say this on the Burzynski CLinic website:
"Donate to Clinical Trials & ResearchThe Burzynski Clinic accepts monetary dontations toward the continuation of the Clinical Trials and Research. You donate by check or Money Order payable to: S.R.Burzynski, M.D., Ph.D. Please note that donations are not tax deductible."
http://www.burzynskiclinic.com/donate.html

A move to Mexico might be the next step. Tijuana here we come!

Ah yes, Brave Maverick Doctor (TM) forced to leave the US because of Big Government Interference (TM).

This has all the hallmarks of a continuing alt-med saga.

Then if he’s not actually part of the company, why does it say this on the Burzynski CLinic website

To maintain the illusion that he funds the Clinic's "work" through his "private practice." (I haven't gone back to check whether Scamley's signature actually appears anywhere on the 10-K.)

Here is a very interesting summary:

http://www.ratbags.com/rsoles/history/2012/0324the-burzynski-clinic.pdf

Burzinsky is an officer of the company, I took a look at the latest SEC filing. He is listed as the President and a Director.

OT - but is reportage of alt med fol de rol and ri-ra in Texas** ever truly OT @ RI?

At AoA today, Dan Burns outlines AJW's appeal ( no, not THAT appeal- that one's over and done with) wherein we learn that:
the BMJ attorneys resemble a tornado,
AJW's rep, McBride, has a free legal clinic for parents of children in special education and has a child with ASD, AND
you can still donate money to help Andy.

"'Science'' blogs is mentioned and rather interesting similes/ metaphors are employed in both post and comment ( "get away car", "get in bed", "wriggle" et al).

** -btw- I am trying to figure out if Austin is in the crappy part of Texas or the really crappy part of Texas ( i.e, the steamy hot and,humid flood plane or the burnt out, inhospitable-to-life desert)? The map does very little good for me but I'd guess the former.

One thing that I noticed right away is that in most trials, the number of evaluable patients is smaller, sometimes much smaller, than the number of patients accrued. This is a huge red flag. For instance, in trial BT-20, there were 40 patients accrued by only 22 were evaluable. This sort of dropoout rate is a huge red flag. We don’t know the reasons for this dropout rate.

Andrea W's story may give us a clue as to one of the reason's for the high dropout rate:

On October 1 [Andrea's] brain swelled massively, just as her flight home was beginning its descent. Henry Friedman, a neuro-oncologist at Duke University, and Victor Levin, a brain-tumor specialist at MD Anderson Cancer Center in Houston, and Boehm, her neurosurgeon, say she should never have traveled any distance from a hospital emergency room. Counters Burzynski: “It’s not up to us; that’s up to the local physician.” Boehm says the Burzynski clinic never called to ask him whether Andrea was fit to fly.

The patient history in Burzynski’s report to the FDA states that Walsh did not die under his care. She is listed as having withdrawn from treatment September 30, two days before she died. But according to the [W]s and [Andrea's friend], a nurse, Andrea was still receiving antineoplastons just before she boarded the plane. “If she withdrew, why was she carrying a suitcase full of the medicine?” [her father] asks. Burzynski says he listed [Andrea] as having withdrawn on September 30 because that was the last day she was treated.

For further context, Andrea learned about 10 days earlier that her tumor had doubled in size. Burzynski told her she had to come down to the Clinic or she would be dropped. The day before she left the Clinic to return home, Burzynski told her that the tumor was breaking up, that it was shrinking. Her family then paid the standard $7,000 payment for the next months round of medication.

Just reading these stories makes me feel sick, I can't even begin to imagine how awful it must be for the families.

Denice Walter - Austin is actually in a fairly nice part of Texas. It is not as hot and humid as Houston, though slightly more so than Dallas. Winter is basically a non-event. Summers tend to be hot and dry, with high temperatures in the 30-41 C range. It's reasonably green, though not as forested as east Texas. Normally it's not nearly as arid as El Paso, though I understand that the last couple of drought years have taken their toll.

I think Austin is the best of Texas, the gateway to the beautiful hill country and home to my favorite bat colony. It's wonderful, art and music based culture is peppered, like most culturally interesting places, with the credulous and fear-based. It's a miracle that anyone survives a liberal arts education. I say that as a liberal and an artist.

You know, Cancer sucks no matter who you are & who treats you....but, at least by committing to treatment options that have sound science & results behind them, you are giving yourself the best possible chances of survival.

There is a special place in Hell for the people that work with Dr. B and continue this charade for him...I won't even mention here the "good doctor" belongs.....

As for Count Stan, what a reprehensible piece of work. If he's delusional and well intentioned, that's scary and awful. If he's deliberately scamming, that's worse. After seeing him speak in person, I can't get his doppelganger's voice out of my head . . . Phez vahn cleenical trial, mwa ha ha! Phez too cleenical trial, mwa ha ha! Phez tree cleenical trial mwa ha ha. . . .

It’s a miracle that anyone survives a liberal arts education.

Depends on what you mean by the term, I suppose.

And who owns his house?

A good question. I can only speculate, but it's entirely possible that someone as savvy (or well-advised) and amoral as Burzynski might have incorporated himself. Not necessarily the same corporation as his clinic--if a corporation doesn't have tradable shares, they don't have to disclose anything to the SEC.

I know a guy, who coincidentally lives in Houston (I have no idea whether he and Burzynski know each other), who, along with his siblings and parents, incorporated his family. Among other things, that lets them write off one family gathering--excuse me, Board of Directors meeting--per year. (Or at least it did at the time he mentioned this corporation to me.)

There are a few states more corporate-friendly thanTexas, but not many. (Delaware, of course, was the winner of that race to the bottom.)

OT -- but is it ever truly off topic @ RI etc etc?

A competent actress joins the pro-vaccination movement, or fill in your own comment about the Germ Slayer:

http://www.cnn.com/2013/06/05/health/gellar-pertussis/index.html?iref=a…

My stomach is turning reading these patient stories too, the people are already so desperate and then the demands pile on. I'm also starting to think that the high dropout rate isn't a bug, it's a feature.

@Bob - "Buffy - the Anti-Vax Slayer!!!" Yay!!!!

Good for her, glad to have her on board!

SEC filing talk. For once, something in my wheelhouse.

“the Company cannot predict if and/or when it will submit an NDA [New Drug Application] to the FDA, nor can the Company estimate the number or type of additional trials the FDA may require.” Burzynski also warns that “there can be no assurance that an NDA for Antineoplastons, as a treatment for cancer, will ever be approved by the FDA.”

Those lines are more or less boilerplate in SEC filings for companies with drugs in clinical testing. I'm working on one currently in a Phase III that we know works (currently approved outside of the US) and in all likelihood will be approved in the coming years, and we still have similar lines in the SEC filings. Just because... you don't know. Something might come up, something you didn't expect, and against all logic, the trial fails. Negative language is in there to protect you from investors. If the trial fails, you want to be able to point to the filings and say "Look, see? We told you it might fail". If you put in assurances that it will pass, and for whatever reason it fails, you end up in trouble with the SEC and your investors.

The best you can usually do is to say "While we expect that we will be able to file an NDA by [Date X], there can be no assurance, and we may never be able to file an NDA for [Drug Product Y]"

(the above is not to say I think that Burzynski is legit. In my opinion, he's the worst kind of quack. But I don't necessarily think conclusions can be drawn just because of language in his SEC filings)

@Andrew - I find most SEC filing to be so full of boiler-plate language as to be nearly useless for deciphering real information from them....

Eric Lund and Patricia,

According to tax records (link below), the house is listed in his name and his wife`s. No fancy incorporation sleight-of-hand here.

And his property taxes have gone down in the past few years. This year he *only* owes $86,000. The appraised value of the house and land have also gone down, now sitting at $4.35 million from a high a couple of years ago of close to $6 million.

You can look back at the past few years of tax history here:

http://www.hctax.net/Property/TaxStatement?Account=1298230010001

Looking at the comments on CNN makes me appreciate what we see here.

Apologies for the OT cross-post (though are anti-vax antics ever OT here?) but Slate’s Bad Astronomy blog just posted a long piece about RFK Jr.’s antivax tendencies: http://www.slate.com/blogs/bad_astronomy/2013/06/05/robert_f_kennedy_jr…

Lilady and Lawrence, heads up…I can't see any AoA bots in the comments yet, but they will no doubt turn up. There are some jabs (ha!) at AutismOne and St. Andy Fakefield in there too.

I wonder how many people went through his clinic to buy that $6 million house and how many survive today.

@Edith Prickly

Phil Plait and his regulars can handle the anti-vaxxers pretty well. That's actually where I got started before I began reading RI more regularly. It's also where my antiantivax.flurf.net site had its first iteration.

@Todd - unfortunately, the volume of comments now over at Slate makes it nearly impossible to track and comment what is being written about. I still love it & Phil is definitely on my Hero list.

- I Observed your talk with Martin Vizzard yesterday
- a lot of smart people her so I maybe you don't need my input, about why SB is BS and why it matters
1. Breaks the too Good/Bad to be true rule, (it is possible for a small clinic to be be innovative, but 20 without acceptance is too long)
2. NO Method Explanation : Lack of accepted scientifc explanation for the method
3. NO PROPER Evidence (replicated multiple times, randomised, double blind studies)
Usually 3. validates 2. .. Now occasionally the results come first, and then the science is worked out later, but 20 years with no NO PROPER Evidence published is unbelievable
4. Moral argument : What real Jesus keep his miiracle technique secret ?
- So does SB work better than chance ? NO ALMOST CERTAINLY NOT

WHY It Matters
- When people believe in "alternative Medicine" SOME stop taking is REAL MEDICINE
( ..so over the group it becomes HARMFUL to overall heath.)
- He sucks money away from real research : Campaign money raised to send UK kids to his clinics might otherwise go to real charities

- We saw from Martin that they are not promoting it as a MAGIC SOLUTION, but just say "there is a chance it can help" so sucking people in. Now we now that in any sickness a certain percentage will get magically better whatever happens and that is the game that SB is playing
.."look A-F died, but G & H have lived 5 over years".. Now we know that would have happened ANYWAY
- And he is helped by this "Not Pure enough justification" effect (when something fails people post justify it by saying "It works, but I just didn't do it early/thoroughly enough")

- 2 other points
1. CANCER DOES NOT KILL US ..It's life that kills us. We are sure to die, but sometimes sickness brings the end earlier than we might like.
2. GREAT PAIN Treatment available now, so people like Martin don't have to suffer pain like years ago

- So while he is right to research opportunities of Genuine clinics. He should not feel the guilt of "I did not nothing", because the odd of spontaneous remission are within Normal medicine are greater than with "alternative Medicine"

Orac - maybe I am stupid
- Patients Dying would explain a high number of drop out rate in the studies. They are usually coming to SB as their last chance. So we are not hoping he can get a 95% cure rate , but something statistically higher than chance.

..typo above "20 YEARS without acceptance is too long"

"- Patients Dying would explain a high number of drop out rate in the studies"

Surely patient dying and reasons for death are things that any study would be keenly interested in recording and presenting as results. Seems more likely that people are dropping out either because they've heard bad words about the clinic or they're bled dry financially before they can complete.

Adam, we've had at least one report where a patient who died a couple of days after being treated by Burzynski and three days after purchasing a month's supply of medicine was classified as "withdrawn from the study" (see my earlier comment at 26). She didn't even manage to get home from her last treatment before she had to be rushed to the hospital. There is certainly a large number of people dropping out, but if what Andrea's family says is true, Burzynski is cooking the books by claiming some dead patients as unevaluable when they were still on his protocol. Let's be frank - if the allegations are true, he is engaging in research fraud (and quite possibly monetary fraud, since he's reporting results in his SEC filings).

Which may be why he doesn't publish.

here's a link to Andrea W.'s story

http://theotherburzynskipatientgroup.wordpress.com/2013/03/21/burzynski…

Burzynski says he listed [Andrea] as having withdrawn on September 30 because that was the last day she was treated.

Apparently, patients are only enrolled in a study while they're physically present and receiving treatment at the clinic. If they're sent home with a few week's supplies of ANP's for self-administration they've been withdrawn from the study (until their next clinic appointment, presumably,, when suddenly they're re-enrolled).

@Lawrence

Unfortunately, Slate's commenting system makes it nigh impossible to follow any conversation. Much preferred when he was over at Discover. But, yeah, it seems the conversation has largely veered off of RFK Jr.s' anti-vaccinationism to focus on piddly tangent topics that were not the main thrust of Phil's post (e.g., GMOs, imagined political motivations, etc.).

I am not fond of Slate's commenting system either. Plus, Bad Astronomy already has a resident "Chris" who says exactly what I would say, only with more wit.

Surely patient dying and reasons for death are things that any study would be keenly interested in recording and presenting as results

This would be true of an honest study where the researcher is seeking the truth.

A new ANP activist/propaganda website has sprung up:

http://iwantanp.org/

It's paving the way for the establishment of foreign or overseas antineoplaston clinics and is asking for donations to help fund treatment for people who cannot afford it.

After 35 years of the inventor, the supporting medical community, and his patients trying to convince the American government and regulatory agencies to be allowed to freely participate in the drug approval process within our so-called "Free Market", it has become apparent that seeking refuge in a non-American country to create a massive tourism industry for cancer patients may be inevitable.

Whether this fight is won in America, or won overseas, one thing is certain—the only way this fight can be won is if the majority of the world's population understands the problem, and understands what Antineoplastons are.

If the United States still refuses to allow Antineoplastons into its marketplace, we will then make sure another country will be properly funded to set up the proper channels for Antineoplastons to be approved for their marketplace. Another avenue would be simply opening up a massive Antineoplastons clinic allowing the cancer patients of the world to seek treatment using Antineoplastons.

Upon gaining either market approval—or the funding the construction of an Antineoplaston clinic overseas, our funds will then go to make sure everyone who cannot afford to travel overseas to receive Antineoplaston therapy—can do so by requesting money through this organization.

@MSII - I wonder if that's the reason old Stan keeps pumping out the ANPs by the gallon?

Lawrence,

Maybe he's building an ANP pipeline from Houston to Tijuana even as we speak?

But seriously, during the Q&A after one of the recent screenings Merola, Mini B. and the minions on stage implied moving to an overseas clinic might be inevitable if the FDA opposition is insurmountable. And that would be the best thing to happen, as trying to lure patients to Mexico, Brazil, Poland or Costa Rica would be much more difficult than getting them to Texas. Houston has the cachet of being in the USA, where there's a perception that cutting-edge technology and modern facilities exist. I imagine it would be a tougher sell in the UK, for instance, to get families to raise hundreds of thousands of pounds to go to Mexico, home of quacks like Hulda Clark's and Gerson's clinics, or Brazil, where John of Fraud plies his trade.

Do you remember the recent stem cell thread where a "journalist" shill piped in to plug a clinic in Mexico? She writes for a "medical tourism" magazine backed by ta consortium of worldwide dubious clinics promising treatments not available (for good reason) in the US. I imagine Burzynski would quickly jump on that bandwagon if he is forced to relocate out of Houston.

More than likely he'd simply retire and hand control over to Mini B. to continue the family con.

Looks like the neoplastin pipe in the US has been turned off, and if the FDA is still run by scientists, it will not be turning on.

Habla Espanol Stan?

The other option is to go with the Gene targeted therapy route using off the shelf therapies. Doesn't have quite the "Maverick Doctor" appeal.

And that would be the best thing to happen, as trying to lure patients to Mexico, Brazil, Poland or Costa Rica would be much more difficult than getting them to Texas.

Not to mention the expense of having to relocate the signage.

I was just watching again one of my all-time favourite movies, when one of the scenes put me in mind of Dr B. It seems an appropriate metaphor for Dr B's business methods.

http://www.youtube.com/watch?v=ubVc2MQwMkg

One difference is that in this scene, Tuco ("The Ugly"), although ruthless & amoral, is not running over the graves of his own victims to find the buried gold.

Burzynski has worked his ass off for over 30 years and has cured cancers that other wise couldn't have. Its funny you all say how there is adverse reactions to his treatment. Wow a few people had reactions. How many people have had reactions from radiation? Ummm duh radiation will kill cancer lol radiation will zap the hell out of anything. Parasites, viruses, cells, animals duh. Radiation in isolated amounts is the best we can come up with. Zap an individuals immune system when the immune system is obviously compromised in the first place. Its funny that you all cannot see behind the veils. You trust cnn, fox, and the worst ....the FDA. You so easily say things like.... Is this FDA approved?? Well what does that mean and do you not have any concern about pharmaceutical companies paying the FDA for faster drug processes. How is the cure coming? Also if we found a cure for any disease what would happen to all those profits for these companies when the whole world was cured? What would these stocks to if a cure was actually found? The cure is already out but unfortunately there is no money in cures. Wake up people seriously get your head out of the cinnamon toast crunch commercials, drop the dove soap you wash with and stop listening to big industry. Your reality is based on a severely broken system that pays large sums of money to control, and sway public opinion. Or maybe whole grain lucky charms are magically delicious right? Im sure half of you would buy a box today if the FDA approved them as cancer treatment. Wake up for real do research outside of webmd, and all the mainstream research organizations. If you start putting pieces of the puzzle together you can see it clearly but you have to change your sources to find it. You will not find the answers in mainstream media or institutions. Everyone is paid off.

Jared -

1. How do you know that Dr. Burzynski has a cure for cancer?
2. Where is the high-quality data that shows how his treatment compares to the standard of care.
3. Why is this so important to you?

Thanks.

@Jared Anderson - Let's suppose as you propose that Whole Grain Lucky Charms were found by the FDA to be a safe and effective cancer treatment. That would mean that there would be a significant body of evidence published and reviewed that said While Grain Lucky Charms were a safe and effective cancer treatment, with specific descriptions for the types of cancers that it can be used to treat and how it can be used for that. If it were a safe and effective treatment for a particular cancer, and you had that particular cancer, and it remained as inexpensive and easy to obtain as it is now - why wouldn't you buy a box? It would seem that turning your back on a proven cheap, safe, effective cancer treatment just because it's a product of a large food company that advertises a lot would be, well, foolish.

I personally am not willing to accept that some brave, maverick doctor has a cure just on his/her say so.

Jared,

Wake up for real do research outside of webmd, and all the mainstream research organizations. If you start putting pieces of the puzzle together you can see it clearly but you have to change your sources to find it. You will not find the answers in mainstream media or institutions. Everyone is paid off.

I have been involved in medical research, and have known many people, doctors, professors, PhD students and others involved in medical research over the years,. and I have never heard as much as a whisper about anyone being paid off, or suppressing any cures for anything at all. I have heard a lot of grumbling about the lack of money for research grants and fixed term contracts, but conspiracies? Nothing, even when these people have had far too much to drink, and you might think they would spill the beans. Either these people are very good at keeping secrets, and I was never accepted into the inner cabal, or there is no huge conspiracy.

Where do you recommend looking for the answers? Let me guess. Natural News, Whale.to? If you believe them, any information they don't agree with is from people who have been paid off, and the lack of information to support their claims is because it has been suppressed by people who have been paid off. You can prove anything, from alien abductions to 9/11 conspiracies if you accept this kind of "research". You should open your eyes and see that you have been misled into believing nonsense.

Oh, I almost forgot the requisite "lol duh" and "baa".

*Yawn* another drive by troll spouting the same old nonsense of looking for answers on Google U.

The people who tell us not to trust mainstream media / governmental sources provide ALTERNATIVE MEDIA services: they dream up stories that capture the audience's attention in order to sell advertising, so-called "educational resources" ( books, films, radio channels) and products such as supplements, food, food preparation machines, water filters etc. Usually they include a page called "Store" and some even unabashedly ask for "Donations". Thus they are not informing us out of the goodness of their hearts or out of any respect for veracity but because they want to make money off of their readers.

And how do I know this? Because I have surveyed some of the most prolific dens of iniquity for many years and have seen how they have been transformed from purely health concerns to more far-reaching topics ( including economics, politics, general conspiracy mongering) in order to capture readers' attention in any way they could.
In order to make readers believe that they are providing them with beneficial information and that they are "on their side".

So that they can sell ad space or products. They masquerade as useful information or as news to hide their prime motive: selling products as well as hope and dreams whilst selling their own personae and creating a career for themselves.

creating CAREERS for themselves...

I need to sleep more than I do.

The likes of Jared presumably don't know any scientific researchers, and imagine we are all either evil geniuses cackling about our world domination plans over bubbling test tubes, or nerdy wimps too afraid of our evil genius (reptoid) masters to say a word about the natural cures we routinely suppress.

That's why from time to time I trot out my experiences working and socializing with scientific researchers, who are for the most part decent and relatively normal people, and how I have never heard a squeak about any such conspiracies. It's a somewhat futile whackatroll exercise, but I have a vain hope it might sometimes do some good.

Multiple Burtrollskis on both SBM and RI the past couple of days. One wonders if Orac's TAM talk has 'ol Stan & Co. worried, one does... :)

Why are you all so paranoid about Burzynski? Are you all in fear of losing your jobs or potential income? He must be doing something right as he was granted the right to run clinical trials. His methods can't be any worse than the torture, sickness and death that has occurred from the miserable, outdated and useless chemo and radiation treatments. Let's face it folks, no matter how you spin it, those methods are useless and archaic. THEY DON"T WORK!!! Only for a few cancers and even then, the cancer comes back with a vengeance in many cases. Let's stop harassing and trying to prevent someone who is actually trying to do something to actually treat and possibly wipe out cancer. God knows it's not coming from any pharmaceutical company and yes, I do know what I'm talking about...I worked in clinical drug trials for a major pharmaceutical company. Would you like one of your loved ones to go through the horrendous ordeal of chemo or radiation therapy...or if it were you, would YOU choose to go through that misery rather than a treatment that has no where near the horrendous side effects of the poisonous chemo and radiation? I myself would do anything I could to get to Burzynski's clinic rather then let them inject me with that poison. Face the facts...time for a BIG change in dealing with cancer and many other diseases that Big Pharm is making huge profits from.

Well said Francine! I was diagnosed with breast cancer 4 years ago & endured 6 rounds of chemotherapy. I was violently ill from the poisonous mix of several drugs that was pumped into my body. None of these drugs were new or innovative. Just the same old poisonous, cookie cutter regime that's been used for decades & gets given to everyone that has similar breast tumor pathology. These drugs have a long list of very unpleasant side effects and can cause deafness, neuropathy, loss of taste, irrepairable damage to organs & heart muscle as well as the added benefit of potentially causing leukemia down the track. That's just naming a few....
You know what, Bursynski may not be the answer for everyone but as an adult I should have the choice of what treatment I wish to pursue & how much money I want to spend on it. It's my choice about my health. I should'nt be forced into an outdated & clearly ineffective treatment plan just because Big Pharma says so. I know how much money Pharmaceutical companies make as I was employed by them for many years. It's all bullshit. It's not about wellness, it's ALL about profit!!!!

Kat,
I notice you complain about the side effects of your cancer treatments, but you show no gratitude whatsoever to your oncologist for saving your life. I firmly believe that if you had used Burzynski's treatments instead you would very likely be dead, like many other of his patients. If you were very lucky you might have joined the few other survivors of his perpetual and never-published clinical trials as walking commercials for his clinic.

You know what, Bursynski may not be the answer for everyone but as an adult I should have the choice of what treatment I wish to pursue & how much money I want to spend on it. It’s my choice about my health. I should’nt be forced into an outdated & clearly ineffective treatment plan just because Big Pharma says so.

You don't think people should have to prove that a cancer treatment is safe and effective before selling it to people? Why hasn't Burzynski published his clinical trial results? Have you read
Orac's post that describes how Burzynski's lawyer cynically exploited loopholes in the law to allow him to open numerous clinical trials he has no intention of ever publishing.

I know how much money Pharmaceutical companies make as I was employed by them for many years. It’s all bullshit. It’s not about wellness, it’s ALL about profit!!!!

Did you and francine work for the same pharmaceutical company? If so you must know how competitive they are, and just how much money a pharmaceutical company can make from a successful cancer treatment. Genentech makes over $1.2 billion every year from Herceptin, for example. Why would any drug company suppress an even more successful cancer treatment? It could put their competitors out of business for good.

Kat, francine,

Surely one of you can tell me, then, where the convincing, independently replicated evidence from well conducted studies published in peer reviewed journals that any of Dr.Burzynski's treatments are better in any objective sense than the current standard of care.

FWIW - I'd just as soon every treatment that said it could cure cancer better than surgery, radiation, and chemotherapy were actually safe and effective, as I receive no income from the existing stable of treatments. However, I believe that before you start selling people something that is supposed to be a cure, it should be proven safe and effective at least as rigorously as existing drugs were.

Frankly, I'm surprised that you aren't concerned that people may be throwing away good money on ineffective treatments. At least in your case, Kat, can I presume that the treatments that you dislike so much (and I can see that they were very unpleasant) may have actually done you some good?

Krebiozen - you need not take my opinion as a lack of gratitude! I was given no other option or treatment plan by my oncologist other than the one carried out & I stuck religiously to her plan. I have a very healthy respect for my Oncologist. That doesn't mean I can't have opinions about the treatments used. Everyone is entitled to their own thoughts & opinions given that we are on a free speech forum.

Mephistopheles O'Brien - I am still breathing today, so yes, I guess you could say that it was a preferable outcome. However, I would not say the treatments were good for me. I'm not going to bore everyone with the list of side effects I had the misfortune of experiencing. We all now how unpleasant chemotherapy is. Lets face it.........it's toxic poison. Researched or not!

There is always an argument fore & against most things in life. I have watched both Bursynski documentaries & done lots of research & reading on his & other alternative methods. He does not promise cure. Neither does standard treatment of chemo or radiation. All treatments are a life extender, not a cure. My Onc tells me that people who've had cancer are NEVER out of the woods as their original cancer can flare 10 or so years after their original diagnosis. I just feel that people should be able to choose a method of treatment that they feel could be of benefit, no matter how outside the square it is. If you have exhausted standard methods & could benefit from an alternative treatment, why wouldn't you try it? Brain cancers seem to be where Bursynski has had most success & standard treatments have failed miserably. Are the skeptics implying that the success stories that Bursynski's patients share are liars?

I'm upset that the FDA has shut down the use of Antineoplastons. Who is it hurting? If people wish to spend top dollar on it, it's their prerogative. We know without a shadow of a doubt that tobacco causes lung cancer & that fatty fast food contributes to heart disease but you don't see people shutting down the doors of Phillip Morris or KFC & McDonalds.

Also chemo is NOT safe or overly effective. Thousands of people die each year from the side effects of Chemotherapy & not their actual cancer. If chemo is so effective, why are people all over the globe dying from cancer?

I’m upset that the FDA has shut down the use of Antineoplastons. Who is it hurting?

See The Other Burzynski Patient Group:

http://theotherburzynskipatientgroup.wordpress.com/

Kat, you're employing a pretty blatant double standard. When it comes to chemo, you ask "if chemo is so effective, why are people all over the globe dying from cancer?" implying that you won't regard chemo as truly effective until it manages to eliminate cancer world-wide.

When it comes to Burzynski's "treatments", however, you're willing to accept them as effective based solely on the fact that there have been some patients who have received Burzyinski's treatments and had good outcomes. Double standard; chemo is castigated because it's not perfectly good; B.'s treatment is lionized because it's not perfectly bad. What makes you think that's appropriate?

Besides, mr. Burzynski's 'treatments' seem to have some pretty nasty side effects as well.

My mother has had breastcancer and was cured by surgery. She is dead for almost 11 years, but she didn't die from cancer.

Antaeus Feldspar I believe there is a place for standard & alternative treatment & that patients should have a choice of which one they would prefer. My experience with chemo was horrendous! God forbid, if my cancer returns I won't be having chemo again. Double standard or not!

Kat,

Krebiozen – you need not take my opinion as a lack of gratitude!

I'm glad to hear that. As I wrote before, I very much doubt that Burzynski would have had such success. As I'm sure you are aware, surgery is the mainstay of breast cancer treatment, with chemotherapy and radiotherapy ensuring that all cancer cells have been killed to reduce the risk of recurrence as much as possible. Burzynski's treatment without surgery would likely have been a death sentence, and with surgery would have been a dangerous gamble at best.

Are the skeptics implying that the success stories that Bursynski’s patients share are liars?

Having looked closely at many of Burzynski's cases, it seems clear to me that most of his successes are actually due to conventional treatment. In brain cancer, after radiotherapy there is often inflammation that can look the tumor is growing on CT scans, called pseudoprogression. When Burzynski treats these patients and the inflammation resolves, it looks as if his treatment has been successful, whereas it was actually late effects of the radiotherapy.

In Jodie Fenton's case if you look closely you see that her tumor had disappeared before she started Burzynski's treatment, very probably it was completely removed during a biopsy unless antineoplastons somehow completely destroyed it after just a few days. That doesn't stop Burzynski and his publicist from claiming her case as a success.

The success stories tell us nothing without knowing how many did not survive, and how many would have survived without his treatment. To find out if Burzynski's treatment is truly effective we need to see the results of the clinical trials he has been running for decades. If his treatment works, why hasn't he published?

I’m upset that the FDA has shut down the use of Antineoplastons.

I'm upset and angry that Burzynski was allowed to run his endless clinical trials for so long, and bleed so many patients dry of money.

Who is it hurting?

It hurts the people who believe his claims and bankrupt themselves pursuing false hope. I'm particularly disturbed when parents from the UK take their children to the Burzynski clinic, depriving them of the excellent care they could receive free of charge from the NHS, and subjecting them to side effects such as extreme hypernatremia.

Wouldn't you complain if a pharmaceutical company marketed a cancer treatment that hadn't been tested properly and that had toxic side effects? Why should Burzynski's treatments be judged by different standards?

If people wish to spend top dollar on it, it’s their prerogative.

You really see nothing wrong with misleading desperate people into paying hundreds of thousands of dollars for a treatment that almost certainly doesn't work? I think it's despicable.

We know without a shadow of a doubt that tobacco causes lung cancer & that fatty fast food contributes to heart disease but you don’t see people shutting down the doors of Phillip Morris or KFC & McDonalds.

No one is claiming that tobacco or fatty foods cure cancer. No one is bringing out movies designed to convince sick and desperate people that these products will help them . You appear to have fallen for Burzynski's sick advertising campaign yourself, hook, line and sinker.

Also chemo is NOT safe or overly effective.

Which chemotherapy specifically are you referring to? Some forms of chemotherapy are very effective, some less so.

Thousands of people die each year from the side effects of Chemotherapy & not their actual cancer.

Do you have any actual evidence to support this assertion? This sort of misinformation is spread around by well-meaning but ignorant people who are determined to scare cancer patients away from conventional treatment. Oncologists are seeing more and more patients with advanced untreated cancers that they had previously only seen in historical text books, because some cancer patients believe the lies that people like you spread about conventional cancer treatment. Please stop.

As UK cancer surgeon Michael Baum wrote on a UK medical professional site:

In the UK, there is the "cancer act" to protect patients from the claims of CAM in treating cancer, sadly this is seldom enforced. As a cancer surgeon and professor of medical humanities I can attest to the tragic consequences of patients with breast cancer refusing modern humane treatment in place of barbaric alternatives. I call them barbaric as it allowed me to follow the natural history of untreated disease. Although I rarely endorse the use of mastectomy, if there is one thing more barbaric than radical surgery, it's the disease itself being allowed to run riot. The cancer leaves behind a rotting stinking ulcer and a swollen arm as the involved lymph nodes block the drainage from the lymphatics.

I know this is a brutal quote, but I don't see any other way of getting across to people just how damaging this kind of misinformation about cancer can be.

If chemo is so effective, why are people all over the globe dying from cancer?</blockquote
Did you know that in the US the 5 year survival rate after a cancer diagnosis was 48.7% in 1975 and is now 67.6%? If conventional treatment is so useless, how is this possible?

More than 90% of breast cancer patients are alive 5 years after diagnosis, compared to 75% in 1975. For non-Hodgkin lymphomas 5-year survival has improved from 45.9% to 71.1% and for leukemias from 33.2% to 59.2% since 1975.

What do you think has led to these improvements? Bear in mind that breast cancer surgery is less radical now than it was in 1975, and that the standard treatment for non-Hodgkin lymphomas and leukemias is chemotherapy.

Apologies for typos and blockquote fail, which are, I hope, obvious. All statistics from the SEER cancer database, such as these heartwarming figures for leukemia 5-year-survival by year.

Kat
If you wre treated for breast cancer in the US by a reputable oncologist, you were not offered a cookie cutter regimen. Tumors are tested to tailor the treatment to the tumor.

Antaeus Feldspar I believe there is a place for standard & alternative treatment & that patients should have a choice of which one they would prefer. My experience with chemo was horrendous! God forbid, if my cancer returns I won’t be having chemo again. Double standard or not!

Kat, you make the mistake of thinking your opinions and decisions are inherently important to someone here other than you, and that just isn't the case. What makes your decisions, or those of anyone who comments here, important to anyone besides themselves, is the facts and reasoning behind those decisions.

Your decisions? It's not even possible to tell whether you understand that decisions should be backed up by facts and reasoning. Certainly I can't picture anyone who actually comprehends that fact treating it as irrelevant that their big "take-away message" is based on a comparison fatally tainted by a double standard.

Kat,

I just feel that people should be able to choose a method of treatment that they feel could be of benefit, no matter how outside the square it is. If you have exhausted standard methods & could benefit from an alternative treatment, why wouldn’t you try it?

I actually agree with you, as long as there is good, solid evidence that it works better than doing nothing, or there is a good, solid reason to think that experimental protocol early in its testing should work better than nothing. You might be surprised at what people claim has cured them of cancer.

Brain cancers seem to be where Bursynski has had most success & standard treatments have failed miserably.

The operative word there is "seems to". As Dr. Burzyinski has not published all his trial data, much less had it replicated and confirmed, we don't know what his success rate is. Also, please define what "failed miserably" means in this context.

Are the skeptics implying that the success stories that Bursynski’s patients share are liars?

By no means. I think everyone here is happy for anyone's good fortune and success in dealing with cancer. However, I for one don't believe these people can know for certainty whether Dr Burzynski's treatments helped them, hurt them, or had no net benefit. Cancer has a highly variable course, and each person's experience is affected by multiple factors. This is particularly true when one has had multiple types of treatments (or things posing as treatments).

Not to trivialize it, but some months ago there was someone who argued here that his recurring gout had been repeatedly treated successfully by homeopathic remedies. All he had to do was go through the list of possible gout remedies, try each one in turn, and eventually he'd find the remedy that worked that time. The next time it typically took a different remedy. It was pointed out that gout comes and goes; that homeopathic remedies (at the concentrations he was using) are nothing but water, and that there is no good data that says he was doing anything more than just waiting out each flare-up. He was adamant, though, that homeopathy cured him each time - he just had to get smarter about selecting the correct remedy.

It sickens me that so many people immediately assume that skeptics assert deliberate lying, as if we've never brought up possibilities of self-deception, misattribution of cause, coincidences, spontaneous recovery or remission, or any of the other myriad ways people can be fooled into thinking a treatment works when it doesn't.

The victims of quackery are still human, which means they're prone to being honestly mistaken. Many of us are hesitant to accuse quacks of knowingly lying because they're also human and prone to the same self-deception. It's very common for a quack to sincerely believe a treatment works when it actually doesn't. I'd even guess it's the overwhelming majority of quacks, probably 90%+

The whole reason we do science is because we know that, as humans, we can be fooled by a lot of things. We perform scientific experiments that control for known types of bias and confounding factors before asserting things are as they seem. We want Burzynski to stop stalling and suppressing his own data so that we can see his actual success rate, rather than rely on cherry picked anecdotes.

Kat, Burzynski has supposedly enrolled patients into more than 60 clinical trials over the past several decades but he hasn't published results from a single trial. He's sitting on what must be a fairly large body of actual cevidence establishing whether or not antineoplastons are a safe and effective treatment for advanced cancers.

Why do you think that is? Why when challenged does he resort to patient testimonials and a couple of paid infomercials to support his claim?

There are only two possibilities here. The first is that the evidence from the clinical trials demonstrate antineoplastons do not work , but Burzynski is concealing the evidence to continue to charge desparate people exorbitant prices for something that he knows won't help them.

In which case he's a fraud.

The other possibility is that the evidence from the clinical trials demonstrate antineoplastons do work but he's concealing the evidence in order to maintain a monopoly on antineoplastons again allowing him to continue to charge desparate people exorbitant prices for treatment. Doing so would mean he's also preventing all other physicians from adopting antineoplastons as standard of care and denying millions of cancer patients all over the world access to a cure for their cancer.

In which case he's a monster.

Kat@78 -- not to belabor the obvious, but you are still alive, thanks to that horrendous chemo.

JGC: there is a third possibility. He may not have really collected any useful data at all, because he was never actually interested in science in the first place. Nothing to conceal, except the fact that he wasn't conducting studies at all. He was just engaging in legal hopscotch to allow him to give untested drugs to humans on the pretense that they work. Which is another form of him being a fraud.

Shay - realistically we don't have sufficient evidence to know that the chemotherapy actually helped Kat's condition. There is substantial data to show statistically that it should have improved her survival chances. It is possible there are observations in her medical records that would indicate that the chemotherapy did her some good, but she hasn't let us know that. Orac has pointed out before that in breast cancer the primary treatment is surgery - and that sometimes surgery will get the entire tumor. The chemotherapy may have helped keep the cancer from spreading.

This is not to say that chemotherapy is worthless - it has known benefits statistically.

Point taken, MOB.

@Kat,
Any chance you're same "Kat" who promotes Protocel?
This Kat? http://scienceblogs.com/insolence/2012/06/19/cantron-not-curing-cancer-…

Chemotherapy may be "horrendous"... but I don't think anyone, especially oncologists, deny this. When my mother was undergoing cancer treatment, her oncologist was upfront about the side effects she might experience, and was given some really good advice on how to manage them. A simple google search of "chemotherapy side effects" listed pages of information from cancer treatment centres about the side effects from chemo, from all over the world.

Burzynski, on the other hand, is quite reticent about the many failures of his treatment regime. So even though chemo may be "horrendous," I reckon it's a better option.

Me too, Christine. My oncologists were very open about potential side effects of chemo and very understanding and helpful in dealing with them. True, the chemo was horrendous but nowhere near as bad as Kat seems to want people to think, and I'm almost 5 years out with no known side effects, and I had the whole gamut (multiple surgeries, harsh chemo, rads).

Kat, do you have citations for your grandiose claims that thousands of people die from chemo every year? Or any of your other bogus claims?

Also chemo is NOT safe or overly effective.

As nobody else seems to have, I'll go ahead and point out that Scamley's magia moczu życia is chemotherapy.

In case anyone has been following my occasional posts about my mother's cancer, I shall be clear about it. My mother was diagnosed with endometrial cancer and was treated with surgery and radiation therapy - no chemo. However, she was recruited into an international study into endometrial cancer treatment, where she could have been treated with chemo, radiation or chemo/radiation. The oncologists were up front about the side effects for ALL treatment regimens, so she knew exactly what she was letting herself in for. As it was, the radiation was no picnic for her, and it has affected her digestion since.

Interestingly, my brother's MIL was diagnosed with breast cancer a few months later. It was treated with surgery and chemo. She had fewer side effects from the chemo than my mother had from the radiation.

I have a very good friend who had leukaemia 20 years ago. He went through hell with the chemo, but is still around 20 years later. A cousin had the same leukaemia last year and her chemo was far less savage, even though the cancer was more advanced. My point? Cancer treatment is constantly evolving. Chemo drugs used in the current day are more effective and can have fewer side effects than stuff used even 5 years ago.

Our son (Glioblastoma) is in an on going clinical trial and after 25 successful treatments over 2 years he's started getting MRI bills not being paid for though part of the protocol per our signed agreement.....be very careful of all clinical trials..... Now I feel we're being blackmailed to pay or not get treatment.

What clinical trial is it?

Hi D,
I'm so sorry you're in such a terrible situation! Can you share more about your case? Who was supposed to be paying for the MRIs? What is the reason for them not paying?

I hate that you're feeling blackmailed. It's so wrong, and I hope maybe you might get some suggestions here if you care to share more. You're absolutely right that we need to be very careful of all clinical trials.

I've participated in a few minor trials as a patient, and I haven't had any trouble like you're having. I hope you can get it rectified asap! As if the illness itself isn't bad enough.

The trial our son is in can be seen at http://clinicaltrials.gov/ct2/show/study/NCT01260506?term=vb-111&rank=3

He started the trial in the summer of 2011 and we never saw any bills until recently and even 2 from a collection agency for the actual research center....then the other bills are for an MRI facility that we are required to go too for his MRI's because it had to be certified by the research hospital and the sponsor drug company.... I've contacted ACS and they've referred me to Cancer Legal Resource Center for guidance and I've started that process.

I called the billing department today and left a v-mail and continued to call every 30 minutes until I got a real person, now they say they have GOOD news, that the sponsor has agreed to reimburse us for hotels and gas, ya right, where have they been the last 26 trips we've made @ our own expense which has been over $15,000. Again, this all seems unethical and I'm mortified, mad and disgusted right now, can ya tell!!!!

Stanislaw Burzynski versus the BBC

oracknows — Tue, 04 Jun 2013 00:00:09 +0000

Stanislaw Burzynski versus the BBC

After yesterday's epic deconstruction of the latest propaganda-fest from everybody's favorite Leni Riefenstahl without the talent, Eric Merola, on his most admired subject, "brave maverick doctor" Stanislaw Burzynski, I needed something science-based to cleanse the rancid taste of intelligence-insulting nonsense from my mind. Through a quirk of fate that couldn't have worked out better if I had planned it myself, a long-expected investigation of the Burzynski Clinic by the BBC, presented on its venerable news program Panorama. It was entitled, appropriately enough, Cancer: Hope for Sale? Ever since learning that the BBC was working on this back in January or February, skeptics have been looking forward to it with a mixture of anticipation and dread, anticipation because we expected that the Panorama crew would "get it" (full disclosure: I was interviewed over the phone by a producer of the show and exchanged e-mails to answer questions), but a bit of dread because we feared the bane of all news reporting on issues of science and medicine: False balance.

So now that the report is finally out, how was it?

Although it's better than the vast majority of reports on Burzynski that I've seen, I'm afraid it's still a mixed bag. I'll start with my general impression and then discuss some specifics that particularly stood out to me. Fortunately, there are parts of the report that hit home, and hit home hard. Unfortunately, every time I think that Panorama is going in for the kill, the reporter (Richard Bilton) seems to back off. Perhaps it's the editing. From reports that I've had, the producers seemed to "get it," but one wonders if something got watered down in the final edit. Or perhaps it's the story structure imposed on this report, which is simultaneously a "he said, she said" portrait of a patient who believes in Burzynski and think he saved her, two Burzynski patients who died but whose families still express little or no regret over having decided to make the trip to Houston, and one patient who thinks Burzynski ripped him off. Interspersed with these stories is an overarching "where's Waldo?" meta-story of Bilton trying to score an interview with the elusive subject of his report (which, of course, finally does happen near the end of the report), all peppered with brief interviews with experts whose comments are generally critical but often softened with caveats that turn some of the criticisms into mush.

What is simultaneously the greatest strength and greatest weakness of this episode is its relentless focus on patients. Specifically, the stories of four patients are covered: Hannah Bradley, Luna Petagine, Amelia Saunders, and Wayne Merritt. The first three patients were U.K. patients who travelled to Houston to be treated by Burzynski; Merritt lives in Georgia. This focus is a strength, because it provides an emotional hook upon which viewers can hang their attention, and, of course, the reason Stanislaw Burzynski However, it's simultaneously a near-fatal weakness in that the obsessive focus on the patients seems to prevent the report from delving into a lot of issues that are also very important in any discussion of Stanislaw Burzynski. For instance, there is no mention of the recent FDA investigation of the Burzynski Clinic, zero mention of how Burzynski recently managed to beat an effort by the Texas Medical Board to strip him of his medical license by throwing his employed doctors under the bus, and only the most superficial treatment of how in general it is considered unethical to demand payment from patients to participate in clinical trials. No, and there isn't any mention of how the Burzynski Clinic waged a campaign of harassment against bloggers who criticized Burzynski back in 2011. Indeed, one of the victims of that harassment, Rhys Morgan, was interviewed by the Panorama crew, but he was informed that his interview was cut from the final version because it didn't fit the narrative. There is even at least one howler in which Bilton intones that "nobody knows exactly what's in his treatment," when in fact it is fairly well known what antineoplastons are and has been for at least 25 years. All you have to do is to read Saul Green's reports on Quackwatch and in The Cancer Letter from the 1990s.

Unfortunately, the story repeatedly falls prey to that weakness and devolves into, in essence, a "he said, she said" narrative, in which one patient believes Burzynski saved her, the family of two patients who died despite Burzynski's ministrations express no regrets, and only one of the four patients complains that he felt ripped off by Burzynski. The overall impression of Burzynski is not entirely unfavorable. Of the patients, Luna Petagine's and Amelia Saunders' stories are the most heart-wrenching. Indeed, Luna's story was featured last year on a BBC documentary about the Great Ormond Street Hospital, and some excerpts from this documentary are shown to introduce Luna and her story. One of them reminded me very much of the conversation with her NHS oncologist that Laura Hymas recorded and allowed Eric Merola to include in his propaganda piece, except that in video it is so much more intense. In this scene, the oncologist tries to point out to Ms. Petagine that he doesn't know what Burzynski is doing or how to take care of her daughter when she returns. I really felt for this oncologist, too. However, this segment on Luna also highlights another irritating aspect of this report, which hit me over the head in the very next scene, when Ms. Petagine in essence lambastes the NHS oncologists because they couldn't save her daughter's life, saying, "The NHS told me Luna's going to die. This man is telling me that he thinks he can cure her."

The report includes interviews with experts like Professor Richard Grundy of Nottingham Children's Hospital. Grundy points out that Burzynski has not published the complete results of any of his phase II clinical trials. Right after him Professor Peter Johnson of Cancer Research U.K. discussing the importance of reproduction of results. Actually, this is one of the stronger segments in that it points out the importance of publishing scientific results in the medical literature and how that is the key to convincing other scientists of the validity of your work. That was very clear and concise. It's also, unfortunately, simultaneously one of the weaker segments in that it ends up sounding as though there's just no evidence and we don't know about antineoplastons. In other words, it sounds as though they very well could work, if only the clinical trials were done. It's a theme that is repeated throughout the report but that ignores the astounding level of sheer deception that goes on at the Burzynski Clinic, the allegations of overfilling, and how Burzynski has abused the clinical trial process to keep treating patients with antineoplastons without actually having to do the science that any other doctor would be required to do to validate a new treatment. True, not all the doctors who question Burzynski's treatment are that wishy-washy. Dr. Elloise Garside, a research scientists, echoes a lot of the questions I have, such as how Burzynski never explains which genes are targeted by antineoplastons, what the preclinical evidence supporting their efficacy are, or what the scientific rationale is to expect that they might have antitumor activity. (Yes, we're talking prior plausibility, baby!) This explanation was provided right after Bilton and she sat through a screening of the first Burzynski movie, which was a fairly nice touch.

None of this is to say that there weren't aspects of the report that were very powerful and spot on. I just wish there were more of them or that more time had been allotted for them. For instance, there was the discussion of how Burzynski attracts new patients, which led to a trip to a screening of Eric Merola's first foray into medical propaganda; i.e., his first movie in 2010 extolling the glory that to him is Stanislaw Burzynski. There's even a sarcastic little rejoinder about how Burzynski takes his message to the movies rather than publishing in the peer-reviewed scientific literature. Particularly amusing is how Panorama includes a scene from the first Burzynski movie in which Burzynski lambastes the panel evaluating him, saying how he will get his antineoplastons approved all over the world and bring them to justice, while promising the hundreds of patients who died because of them will come back to haunt them until their deaths.

Yeah, Stan's as warm and fuzzy as ever.

Panorama also confirms what skeptics have suspected for a long time now, namely that the Burzynski movie has been very, very effective in attracting patients to the Burzynski Clinic. During an interview with Hannah Bradley, whom we've met before. There's no real evidence that Burzynski's treatment is responsible for Bradley's good fortune in having lived more than two years with her cancer thus far, but she attributes her survival to him. Unfortunately, she is also incorrect when she says that there's no evidence that antineoplastons work or that they don't work. The preponderance of evidence supports the contention that they dont' work, but there is uncertainty, which Burzynski exploits to the max. In any case, as lovely a young woman as I think Ms. Bradley is, the whole segment is painful to watch, as she asks ignorant questions like, "What says radiotherapy works?" When the reporter points out that the peer-reviewed literature says it works, Ms. Bradley says, "But not for everyone," which is technically true but ignores that there isn't any evidence comparable to that for radiotherapy that antineoplastons work for anyone. As much as I like Hannah Bradley and her boyfriend Pete Cohen and hope Hannah continues to do well, I can't let such statements go unchallenged.

Ironically, I can't help but note that Pete Cohen also showed up on the radio to be interviewed by Victoria Derbyshire on BBC Radio 5 Live (at around the 1:44 mark). I can't help but mention it here, because Mr. Cohen gives away several interesting tidbits. For instance, it's very obvious that the Burzynski Clinic is in communication with him, because Mr. Cohen claims that Burzynski is preparing manuscripts for publication and that he has even submitted several to "top journals." He even claims that Burzynski has asked that they be independently reviewed. In doing so, Cohen echoes the claims in some of the Q&A's after screenings of Eric Merola's most recent movie that Burzynski's papers have been rejected without being sent out for peer review. It's also not exactly clear what Cohen means by that. Studies submitted to journals won't be published without going out for peer-review. Maybe he's referring to some of the papers we've heard about from Mr. Cohen and others that were editorially rejected and not even sent out for peer review because the editor either didn't think them appropriate or didn't want to waste the reviewers' time. Mr. Cohen also repeatedly says how he has approached experts in brain cancer and begged them to come out to the Burzynski Clinic to "see for themselves." Seemingly, he can't understand that it is not necessary for a scientist or doctor to meet Dr. Burzynski or visit his clinic. It means nothing. Nada. Zero. Zip. In science, all that matters is what you publish, and Burzynski hasn't published anything other than case reports, tiny case series, and unconvincing studies, mostly (at least over the last decade or so) in crappy journals not even indexed on PubMed.

Without a doubt, the most effective part of the story is the segment in which Dr. Jeanine Graf of the Texas Children's Hospital is introduced. Dr. Graf is the director of the pediatric intensive care unit there and has taken care of lots of Burzynski patients, as her hospital is "just down the road" from the Burzynski Clinic and these unfortunate children are brought to her hospital when they decompensate. Indeed, coupled with this segment is an interlude where Luna Petagine's mother complains that the staff there know and recognize Burzynski patients (and, she notes, hate the Burzynski Clinic). Particularly damning is how Ms. Petagine said that the Texas Children's Hospital Staff "were always cleaning up Burzynski's messes." Luna was brought to the Texas Children's Hospital during her time in Houston, and the staff there recognized right away that she was a Burzynski patient because they had seen so many similar patients suffering the same complications before. It was also clear how much contempt the staff there had for the Burzynski Clinic. If there's one thing Panorama did right in this report, it's showing how seeing so many already dying children show up in our ICU because of hypernatremia due to antineoplaston therapy will do that. Perhaps the most devastating part of this segment was seeing Dr. Graf stating, point blank, that she's never seen a Burzynski patient survive. True, she does point out that patients don't come to her until they are in extremis, but the fact remains that she's never seen any of them live.

It's a sad and devastating segment.

Unfortunately, during the most critical part of the story of all, in which Bilton finally "finds Waldo" and is granted an audience with Stanislaw Burzynski, Bilton came across (to me, at least) as rather unprepared. Fortunately for Bilton, Burzynski was his own worst enemy, smirking and behaving in his usual arrogant, dismissive manner to any sort of challenge. (You can see a sample of it here, towards the end of the promo.) If Burzynski were a bit less full of himself and the greatness that he thinks he possesses, he could have wiped the floor with Bilton. As it is, the interview was pretty much a draw. Burzynski claims that antineoplastons can cure cancer, but not for everyone. Burzynski smirks when asked how many patients he's treated and how many have survived, dodging the question by saying that the FDA won't let him until he's published his results. Bilton tells him that's not true; the FDA has told him that Burzynski can tell him as long as he doesn't promote antineoplastons. Burzynski asks Bilton why he doesn't have a letter from the FDA. Burzynski dismisses Bilton with dismissive retorts like:

You look like a bright man but you’re asking me the same question again and again. Are you catching Alzheimer’s disease or what?

As I said, Burzynski's arrogance, dismissiveness, and condescension make him his own worst enemy. Bilton was very, very lucky.

Burzynski also pulls out the old trope that, if the FDA has been letting him use antineoplastons for 20 years in clinical trials if they weren't safe and potentially effective, that the FDA wouldn't let him "sell hope without evidence." (Those of us following Burzynski for a while know, unfortunately, that that isn't necessarily true.) Burzynski then promises that antineoplastons will be approved "soon" (they almost certainly won't), after which he goes on to repeat the same refrain he's been repeating for the last decade or so about how he's on the verge of publishing all the results that will convince everyone. "Just you wait," Burzynski is saying, in effect, "I'll show them. I'll show them all!"

One notes that we're still waiting.

Ultimately, the Burzynski Clinic did release some results, stating that 776 patients with brain tumors were treated in trials and that 15.5% have survived five years. Of course, this is an utterly meaningless factoid (if factual it even is), because we don't know what kinds of tumors, what gradess, how they were treated beforehand, or any other confounding factors. Burzynski needs to publish, but I highly doubt that he will, at least not in a form that is informative to real oncologists.

Overall, the producers of Panorama did a decent, but flawed, job of taking on Burzynski. Part of the problem might have been that a half hour is just too short. It's really difficult to explain 36 years of history and the ins and outs of Burzynski's battles with the law and patients in just a half hour; so apparently Panorama didn't even try. That left it asking the question at the beginning of how Burzynski has gotten away with this for so long but not really even trying to give an answer at the end. It also might be that expectations were too high in the skeptic community, myself included. While I can understand the decision to concentrate on patients as the center of the story, the problem with that decision is that it it's a well-trod path that crowds out too many other important issues that ended up getting short (or, far more commonly, no) shrift in this Panorama episode. In the end, Panorama played it safe, and its report ended up being fairly unoriginal and guaranteed not to be the definitive look at Burzynski. It's a very good thing that Panorama decided to shine a light into the recesses of the Burzynski Clinic, but at best it's a first, flawed step. As good as much of this episode is, some of it is not, and I fear that an opportunity has been lost.

oracknows Mon, 06/03/2013 - 20:00

Tags

Categories

http://reg.tmb.state.tx.us/TMBPublicWebSite/BoardOrders/ViewBoardOrders…

The general reaction as it was airing, it seemed to me, was horror on the part of the British public, so I think there will be a disconnect between how most people will see the episode and how skeptics do.

I was surprised that it wasn't one of their occasional hour-long episodes. Maybe it was originally slated to be, and then cut down, hence all the cut segments?

This was actually one of the better episodes of Panorama. What was once a hard-hitting, investigative news programme, is now usually nothing more than half an hour of vague, watery pablum. That this episode contained any actual experts at all is what made it an unusually good effort. Also, the fact that they chose to go after an actual 'bad guy' rather than demonising or scapegoating vulnerable minority groups is a welcome change. Some of last year's episodes were basically thirty minutes of govt. propaganda.

Pete Cohen is barking up the wrong squirrel with his idea of trying to convince actual oncologists by taking them to the Ant(ineoplaston) Farm

. That's what supporters don't get. Science makes no character judgements or snap inferences. The cuddly, avuncular, gentle giant peddling snake oil, and the flint-hearted, puppy-munching, baby-punching fiend who can prove that he can save lives are not scientifically judged by the content of their characters, but by the content of their peer-reviewed, replicable research.

Mr Cohen can't seem to grasp that people aren't ignoring Scamleys "research" because they don't like him, but !that they don't like him precisely because of his research, or lack of, and the way it harms people.

. They're pissed off because he rides roughshod over the lives (and bank accounts) of the desperate. He could be the sweetest, kindest old man on the planet, but it wouldn't make him any less morally bankrupt.

I'm fairly pleased with how it turned out. A credible effort with several well-spoken experts who did an excellent job at critiquing Burzynski's claims.

Never underestimate the power of these sorts of documentaries. In 2010 the BBC Newsnight program aired an expose on companies selling pseudo-scientific and ineffective bomb detection devices to the Iraqi government. Last month the chief player in this racket was sentenced to 10 years at the Old Bailey. We can only hope.

You know, given the "craptastic" bad science that still manages to get published nowadays, how can Dr. B make any sort of excuse that he's been "unable to publish?"

Hell, there are dozens of "pay to play" medical journals, with fairly lousy peer-review standards.....he could just publish away...maybe his results are so bad that not even paying would get his stuff through the "shinning the turd" process.

@Lawrence - Exactly. Hell, there's nothing stopping him publishing his own journal, is there? He could rope in any supporters to help with capital (why change the habit of a lifetime?) and publis/distribution

I had all the same misgivings that you did about this programme, Orac. I felt that they had definitely pulled their punches in places, had fallen prey to false balance, and had probably taken a decision that minimising the risk of a libel suit should take precedence over exposing just how big a crook Burzynski is.

However, then I saw the reaction on Twitter. Watching the #burzynski and #bbcpanorama hashtags just after the programme aired was a truly heartwarming sight. The audience, at least the subset of the audience minded to tweet about it, had absolutely got it. The sentiment was absolutely overwhelming: the British tweeting public had seen this film, and were left in no doubt that Burzynski was a crook.

I don't know if the people who tweet about the programme are a representative sample of the audience in this respect, but if they are, then I think the programme, despite its flaws, was a great success.

Peer reviewed cookie, please.

Have you guys lost your minds? There is one MASSIVE flaw in your argument. They aren't offering Anteneoplaston treatment at the Burzynski clinic! Targeted cancer therapy yes, Anteneoplastons no. Do your homework boys and girls.

The good old British "tweeting" public eh Adam, truly a cast iron representative selection of the population.

Do you know what makes my blood boil, that skeptics and bloggers who have nothing better to do with their time other than refer to people like me (GBM 4) as "vulnerable". Arrogant is not the word! I'd like someone to explain to me why exactly I am vulnerable as a GBM stage 4 patient. Limited time yes, but any one of you may come across that problem crossing the street or driving to work today! I've been "vulnerable" every day for the last 15 years sat at the end of a runway with 2 big Rolls Royce engines strapped to my backside.

Programme a great success? What you have is tunnel vision! Have any of you considered what you are writing here may very well come back to haunt you if Burzynski's data is published?

I think that it is likely his data will be published and I hope it is proven as an effective cure for cancer FOR SOME. It won't work for all but nor does anything else.

Thanks

Martin if they don't do anteneoplastons what the hell is going on at around 21.15 of the Panorama programme. They seem to be manufacturing a hell of a lot of the stuff.

Have any of you considered what you are writing here may very well come back to haunt you if Burzynski’s data is published?

Heh. Taking into account his publishing history (what it is? three decades? - of pretty much nothing) I think it's pretty safe bet that it won't.

Martin Vizzard @9:

You personally may not be vulnerable. Other people, however, are.

Many people with terminal illnesses are desperate and grasping at straws and would do anything for a cure.

People like Burzinsky abuse this by offering false hope, scamming them out of their money and making the time they have left miserable when they should be spending it in a way that makes them happy.

Burzinsky does the equivalent of some guy conning an old woman out of her life savings by pretending to be her grandson. Only worse, because he convinces people to forgo actual treatment that is proven to work.

I SAY AGAIN.

YOU CANNOT GET ANTENEOPLASTON TREATMENT AT THE BURZYNSKI CLINIC AT THIS TIME!!!!!

How do I know, because I asked myself in person at the Burzynski clinic last Tuesday. I asked if it was available and was told from the horses mouth in no uncertain terms that it was not. Just incase some of you want to try and question my motive or agenda here, my name is Martin Vizzard, I'm a 38 year from Manchester UK and on 15/5/13 diagnosed with GBM stage 4. I came to the U.S because I was interested to discover if gene targeted cancer treatment (something not available in UK) could help. I have had my brain biopsy analysed and have an over expressing HER2 gene. I came here of my own free will understand there are no guaratees and my wife and I are happy with what we are paying, and have set down what service we expect. It's all very simple for the organised! I can have my brains blasted out and take Themozolomide when I get back if this doesn't work! Not that the Harley Street Clinic said that will do much other than an extra 3-6 months.

Back to the programme, basically what you are saying is this is a very interesting documentary about a doctor who is manufacturing a product he is not doing anything with? Now that's down to you skeptics to "deconstruct" why he may or may not being doing that (manufacturing). The fact is I am here in Houston and being treated by them and was told it is NOT available to ANYONE. It's a non story!

The reason I left the UK private system was because there are no options of targeted cancer therapy. I could have gone anywhere, I came here. Everyone is very nice and we are all open and honest about my predicament.

@puppygod: If he's manufacturing it but not using it there's no need for you to get so excited.

@pris: Please explain why other people are vulnerable and you feel placed to talk about mental state of anyone other than yourself?

Thanks

Sorry @puppygod that was supposed to be for @wrysmile!!

@Martin - except it has been available for the past three decades, used by an unknown number of patients (unknown, because Dr. B doesn't publish his studies), with unknown effect, again, because he doesn't publish his studies.

As for the "Targeted Gene Therapy) - there is also no evidence that what Dr. B does is a) Targeted b) Gene Therapy or c) Effective.....

So, get off your high-horse and start demanding real evidence from Dr. B, because his platitudes are going to kill you.

Martin, I'm sorry to tell you that what Burzynski claims is targeted cancer therapy is unlikely to be efficacious either.

@Martin - and I would suggest you read the stories posted over at "The Other Burzynski Patient Group" - as it includes a number of, now dead, patients who were on the "Targeted Gene Therapy" - which is nothing but an untested mix of various Chemo drugs.....

Is that really the way you want to go?

I watched the program with someone unfamiliar with the saga of Stan and both of us were left reeling at the end. In a weird way the fact that it pulled its punches and gave Burzynski every chance to offer a rebuttal made it all the more damning than a straight take-down. They gave Burzynski enough rope to hang himself, which he definitely did during his interview at the end - arrogance personified. His body language and demeanour really gave the impression he couldn't care less about his patients. This section coming after the interview with Dr Graf from the Texas Children's Hospital really drove the point home. The stark contrast of the arrogance of Stan with compassion of the Doctor who has to clear up the mess he leaves behind says more to the lay person than any academic debate on whether he publishes or not. I think this is where the reaction on twitter stemmed from.

One thing that really stood out was the fact that he now uses the defence that he is working with the FDA approval process and is straight-jacketed by their regulations, rather than being persecuted by them. From a narrative point of view he is running out of places to hide. Hopefully there is an end game at play and his practicing days are numbered. Kudos to Orac and all the dastardly Sceptics for keeping a constant spotlight on this story. Just a pity it has gone on for so long.

@nastylittlehorse: Please elaborate using the details of my brain biopsy and my current medication.

@lawrence: I'm dead anyway my friend and just so you know I intend to be a nasty ass ghost so play nicely! At least I gave it a shot rather than putting all my eggs in the radiation
and Themozolomide basket.

I posted this the other day so if I'm repeating myself please accept my apols but it depends on how you are wired up. I have spent the last 15 years circumnavigating this planet as a captain, flying a beautiful aircraft quite possibly with some of you here down the back. For those of you about to embark on your holidays, you may be relieved to hear that if (for example) we have some major catastrophic failure mid Atlantic or way North over Canada then the rule book go's out of the metaphorical window. What you do is in the most urgent of cases is what is needed to be done to survive. Some survive, some don't that's life. However, you try everything no matter how untried it is. There are MANY examples in the flying world of how a proven method of operation has resulted in multiple fatalities and the unproven complete success.

I am far from saying aviators are superior creatures, however the medicine industry (at least in the UK) did adopt some of our most "basic" procedures so we must have been doing something correctly.

@Martin - it is certainly your money & your right to do what you will for your treatment. Of course, if you go to Dr. B, all you are going to get is a mix of untested chemo drugs & no actual evidence to show that it works.

You know, there are great Cancer hospitals in the States, even some right there in Houston. You might want to check them out first - at least they publish the results of their treatments, unlike Dr. B - so don't come here criticizing us for holding him to the same standards as every other Cancer researcher in the world.....

@Martin

Orac has done several dissections of Dr. B's ideas of targeted therapy. Perhaps take a look back through the blog if you want to read about them.

I wish you the best of luck, and I wholly understand that you would try anything you could, but I think there are probably better things to do with your money than throw it at a man with no record of publishing his results, let alone a proven record of actually helping anyone.

Your last paragraph (in my opinion) is exactly the problem and exactly what you clearly didn't grasp in my last post. And by the way I am free to express my own opinion on this subject just as you are, so don't tell me where to go and what to do. The undertones in your post speaks volumes.

Let me ask you, would you like me to start researching mid Atlantic with you and your family on board when the decision I make could end in disaster OR b save you all? No matter how improvising one has to be, you do what is needed to save life. If at the end you cannot then you cannot. At that second when the problem (whatever that example may be) occurs your fate is sealed.

You seem to have skimmed over what I said originally.
I was sat in one, if not the most prestigious clinic in London to be told I would receive standard treatment. I will try other methods then standard treatment, what's the big deal. At least I have people who seem half interested in what's making my cancer tick and I did not get that in the UK.

There is nothing advanced or complex about what I am doing and I know FOR A FACT I am getting what I would get elsewhere because I've checked.

So basically your problem is
A) Burzynski is making Anteneoplastons but not using them
B) Money

@Martin - for a seemingly educated individual, you're really not getting our criticisms......

Dr. B has been treating patients for over 35 Years now - in all that time, he has not proven (or fully published) his results, yet he continues to charge ludicrous sums of money to desperate people.

It would be easy for him to get us all to shut up. Just publish the results. Is that so hard? And why should he be treated any differently than anyone else that is pushing a Cancer treatment?

If you think Dr. B & his staff are interested in anything other than how long you can pay for the "treatments" you really are fooling yourself. Again, you really should read the patient stories available at "The Other Burzynski Patient Group" they speak volumes as to the efficacy of his treatments.

Martin, check out this page under SOAH Complaints for Burzynski, for the "appropriateness" of the other anti-cancer drugs that he prescribed for a variety of types of cancer.

I'm sorry that you have been diagnosed with cancer. I'm also sorry that you seem to think that your experience as an aviator in any way qualifies you to understand oncology treatments.

BTW, Burzynski has a slew of employees who cruise the internet for blogs written about the Clinic and Burzynski's "gene targeted therapies"...so he already knows you have a bundle of money to pay for his "treatments". Rest assured, he will string you along until your financial resources are depleted, prescribing the most expensive "traditional" anti-cancer drugs...whether or not those drugs have proven anti-cancer properties for your type of cancer...and, whether or not there are published case studies that show effectiveness when used as an "off label" treatment.

You're just lining the pockets of Burzynski.

@Martin Vizzard

There are a number of cancer institutes around the states that are doing clinical trials (i.e., experimental treatments) for various cancers, likely including yours. The difference between them and Burzynski is that they will not charge you for the experimental portions of the treatment. They also publish their data, unlike Burzynski.

Please understand that when we advise you to go elsewhere it is not because we don't want you to try everything possible, but that we want you to try those things that a) have an actual chance of working and b) are ethically run.

As for myself, I truly hope that you fare well, regardless of what you try. But I also hope that you will direct your efforts to areas that are more promising. To use your flight analogy, try adjusting the flaps (i.e., legitimate research centers) instead of hopping around the cockpit on one foot while rubbing your belly (Burzynski).

@Martin:

"At least I have people who seem half interested in what’s making my cancer tick"

Has it occurred to you that that is exactly what Burzynski wants you to think? In reality, all he's interested in is your money. If he were truly interested in cancer, he would participate in the scientific method.

I appreciate that it must be devastating being in your position and hearing doctors telling you that there's little they can do for you. It's absolutely not what you want to hear. Burzynski understands that. That's why he's prepared to tell you "yes! I can help you!", even though he has to be completely dishonest to do so.

Sometimes the truth is unpalatable. But in the end, it's always better to face it.

Martin - you are receiving standard treatment. Burzynski's "targeted therapy" is nothing of the sort, it's just a cocktail of the same chemotherapeutic drugs you can get here, in the UK.

Oh, and there's almost certainly some phenylbutyrate chucked in. Have a guess what that is? If you are on that, then I can tell you that you're paying way over the odds for it.

The only reason antineoplastons aren't available at the moment is because the FDA have finally stepped in. If Stan had his way he'd still be selling his stinking bags of false hope to dying children.

Also, I'm not quite sure what your history as a pilot has to do with being able to tell if you're being swindled. I think I'll trust the oncologist and the assorted science professionals on that one.

I know it's hard to come face to face with your own mortality, and harder still to think that the "treatment" you've been sold (at enormously inflated costs) is a con, but don't shoot the messenger. I hope you're one of the incredibly rare lucky ones who escapes this experience alive.

Martin, we all understand that you feel angry at being told you're probably making the wrong decision. As a highly qualified professional who is daily responsible for peoples' safety, you prefer to think that you make the right decisions all the time. And, when you're piloting an aircraft, you undoubtedly DO make the right decisions. After all, that's what you spent years being trained for. It's your job and you're right to be proud of your skills.
However, you're not medically trained; in the field of medicine, you have to take the experts' advice and guidance. The writer of this blog is an expert in the field of cancer - he's a cancer surgeon and researcher, with at least as many years of training and practice in his field as you have in yours. Why can't you trust his judgement in the matter of Burzynski's treatment?

Martin, the reason they are not using the AP therapy right now is that SB was allowed to use them exclusively for clinical trials - something he's done for decades now. It has been noticed on this site before that a lot of his clinical trials seem to have disappeared from the clinic's website, probably for legal reasons. He might just not have any FDA accepted clinical trials left to enroll people in to legally use the AP.
If you truly believe in is you can have your UK practitioner give you phenylbutyrate, that's one of the 2 compounds he seems to like. It's an orphan drug, and costs about $60 a kg, so you'll be getting a slightly better deal than with the B clinic.

Martin,

What you do is in the most urgent of cases is what is needed to be done to survive. Some survive, some don’t that’s life. However, you try everything no matter how untried it is.

In the event of an unexpected midflight emergency, I'm sure you make some assessment of the likely efficacy of the "everything" you try "no matter how untried it is". From what I have read, most of Burzynski's successes are the equivalent a passenger desperately flapping his arms during an engine failure, and then claiming he saved the day, when it was actually down to the skill of the pilot performing an emergency landing.

I doubt there is very much any US hospital can do for you that the Radcliffe or the Royal Marsden couldn't do on the NHS. If you want US treatment, you would be far better off going to the University of Texas M.D. Anderson Cancer Center than Burzynski's clinic, or to the Australian surgeon Orac mentioned.

To be clear, the Australian surgeon isn't in the US.

I SAY AGAIN.

YOU CANNOT GET ANTENEOPLASTON TREATMENT AT THE BURZYNSKI CLINIC AT THIS TIME!!!!!

Yes, Mr. Vizzard, we know that. However, when the FDA put a hold on antineoplastons at the Burzynski Clinic, it allowed Burzynski to keep treating clinic patients who were already receiving antineoplastons. It only dictated that he could not enroll any more patients in clinical trials and could not start treating any new patients with antineoplastons. That's still a lot of antineoplastons. I do admit, however, to some surprise that Burzynski's manufacturing facility is still apparently going full steam and producing 300 L of antineoplaston solution a day. I would have thought that the demand would be steadily falling since the clinical hold was placed on antineoplaston use back in January.

At least I have people who seem half interested in what’s making my cancer tick and I did not get that in the UK.

I'm sorry you have cancer. I really am. But I highly doubt that Burzynski really cares all that much about what makes your cancer tick. He's just good at using the latest buzzwords in oncology to put a glossy sheen on incompetently administered chemotherapy.

Look at it this way. Despite his presenting himself as being some sort of genius who dreamt up the idea of cutting edge gene-targeted therapy, he is not. He is a guy in a clinic who uses a commercial test from Caris that anyone else can use if he wants to. He then basically mindlessly does what the test tells him, even though there is as yet no good evidence that using the test to guide therapy improves outcomes, without considering synergistic toxicities that could result from throwing together various witches' brews of very expensive targeted drugs willy-nilly just because the Caris test said the tumor might be responsive to individual drugs in the cocktail.

Real cutting edge researchers don't do that. They develop their own tests. They or their collaborators take next generation sequencing results and interpret them themselves to come up with new therapies. Burzynski is about as far from "cutting edge" as you can be.

As for his antineoplastons, they're a 46 year old idea (at least) that he's been treating patients with for 26 years and doing trials on for nearly 20 without publishing any complete clinical trial results. He's had more than enough chances to prove they work. Indeed, in the late 1980s and early 1990s the NCI bent over backwards to try to help him determine whether they work but failed because Burzynski was too intransigent to cooperate and collaborate.

Martin,

I don't know what kind of airliner you drive, but with a good altitude at flameout, you may be able to glide for a hundred miles. That doesn't give you a whole lot of time to think about it, and all the time you're losing options along with your momentum. Cancer, meanwhile, seldom kills people that quickly. A day or two to review the literature will not usually affect the outcome. So I'm not really sure you picked the best comparison there. Cancer treatment, even for advanced cancer, isn't usually a panic-mode situation.

You are definitely entitled to your opinions, and your choice of treatment. But so is everyone else. You will encounter people who disagree with you and who may even think you have made a poor choice; try not to take other people's opinions too personally. It'll go a long ways towards getting your own opinions respected.

It is true that Burzynski has never published results from his clinical trials of antineoplastons nor from his targeted cancer therapy. Targeted cancer therapy is actually offered by many clinics; Burzynski has never adequately explained what makes his different. He claims it's different. He just doesn't really explain why.

@Martin - if you read only one more site, then read this:

http://burzynskiscam.com/

That covers the experience of someone who went to the clinic expecting cutting-edge targeted therapy.

BTW, I tend to think of Burzynski as a modern version of Dr Brinkley, though Burzynski is more qualified and probably directly kills fewer patients than Brinkley did. His marketing practices are eerily similar, and like Brinkley, he has a devoted legion of fans who are convinced the he helped them or their loved one. I doubt he'll get as far as Brinkley did; few quacks are so bad that shutting them down eventually requires creation of a new agency (the FCC) and an international treaty. He was a spammer extraordinaire, long before the Internet, blasting radio waves from Mexico so powerful you could pick them in Canada. He'd have loved working with someone like Eric Merola.

@Martin. I too am stage IV (but with renal cancer). I used to fly planes as well. My drug therapy has grounded me - thanks to the FAA which appears (on the surface) to be more concerned about my health than the FDA - at least when it comes to Dr. B.

If you are truly willing to go slightly outside the box I suggest contacting Dr. Thomas N. Seyfried up at Boston College. Read his book, "Cancer as a Metabolic Disease" wherein he describes both the theory and ongoing clinical trials that have resulted in some remarkable results for GBM patients.

Thanks for that Neil. I'll certainly have a look at that.

I can tell you this Adam, for the brief period I saw Dr Burzynski he said nothing of the sort. He never said he could help, he said there are drugs which MAY help me but it was by no means guaranteed. You all seem very interested in all things factual so let's keep it factual. He pointed out to both me and my wife I am in a very bad position and he came up with a very clear plan to try the FDA approved medication based on my biopsy but if that didn't work " i needed to return straight home for radiation" That is word for what I was told. Yes, disappointing to be clocking out at 38 (hopefully 39) but I can assure you I'm not devastated. I'll let you into a little secret, it will happen to you all as well. It's just how you deal with it!

I was offered Standard treatment ONLY in the UK as a private patient of the Harley Street Clinic. This is what I am annoyed about. Come on boys, think outside the box.

I am taking FDA approved cancer drugs in the States. Also just as an aside I am absolutely stunned that educated people will get on a public forum and say that already approved and widely used cancer drugs DO NOT WORK! Please don't second guess what I'm taking, it's all approved and being used widely.

You are correct I am not trained in the field of medicine. It is even more complex than the basic situations I have described to you. This in turn would demand a more inventive solution than "standard care". I said this on an earlier posting but I was told anything other than standard may "harm" me. Hmmm bit late for that.

Also is anyone interested in how my GBM was found? I have an acoustic neuroma treated with Gama Knife in 2010. Glioma missed in 2011, 2012 and finally picked up on 2013 scan. Right to question the medical profession? I'll leave that open.

@Martin

Nobody is saying that approved medication doesn't work (well, except things like phenylephrine...), just that it is very unlikely that Dr B has anything useful to give you here. If you feel the UK system has failed you and you could get better treatment in the US, then why not engage withg the mainstream US system instead of someone who shows all the signs of being a quack?

Come on boys, think outside the box.

You have already had Charles Teo suggested to you.

Martin, you don't seem to be getting this, but I know that there's bound to be cognitive side-effects with your type of tumour, so I'll explain it again.

All you are getting at Burzynski's "clinic" is standard chemotherapy. That's it, that's all, end of. It's bog-standard chemo, the same stuff you could be prescribed by any oncologist. The only differences are that Stan isn't an oncologist, he's using the drugs off-label and apparently at random, oh - and he's charging way over the odds for them. Getting cancer treatment from a noncologist like Stan is like going to your dentist for a broken leg, then being charged two grand for him trying to repair the fracture with dental amalgam.

The problems with his approach are legion, but one of the most common results of being prescribed his Chemo Colada is an ineligibility to enter into any other clinical trials run by actual oncologists.

You're not the first person who's said "Chemo? I don't want that! I'm going to fly across the world to get Burzynski's 'Gene-targeted therapy' instead", without realising that chemo and GTT are the same thing. Sadly, you won't be the last.

WRT costs - he overcharges for every drug he prescribes. His phenylbutyrate costs about $300 a bottle at any pharmacy, but his patients are only allowed to buy it from him for thousands of dollars. One woman got a drug company to waive the fees for the chemo that Stan was using on her, and had them shipped directly to her. Guess what? She was still charged tens of thousands ed dollars per month for "case management" and "drug storage and administration", even though they were neither storing nor administering the drugs.

Sorry, but it's a racket. They'll wring you out until you're dry, and then throw you out into the street.

There are only two possible scenarios with regard to Burzynski.

1. He has the cure for cancer. It's effective against a number of cancers, but he won't publish anything that will allow the scientific community to replicate his success and develop treatment programs that will save lives. He's keeping it to himself instead and denying the chance of a cure to millions of people, forcing dying cancer patients to spend their final months schlepping to Texas.

That would make him an amoral scumbag.

2. He knows he's lying and that his treatments are bogus, and that's why he won't publish trial data and commence Phase 3 trials. Instead he's stringing along the families of terminally ill kids (some of whom are only infants), and he's fleecing dying adults up until the moment of death, knowing that it's all a sick lie.

That would make him an amoral scumbag.

Oh, and BTW, there are no "boys" here. Just grown men and women. Some are scientific/medical professionals, others are just lay people, but we're brought together by our desire to stop charlatans like Burzynski taking advantage of the desperate and the dying. You're not telling us anything we haven't heard before, and we all hope you'll survive your brush with this conman.

And I thanked him for the suggestion. Already in contact and MRI scans on the way to Oz.

@Martin

If you were told that there are no ANPs involved, then it would appear that SB is lying to somebody. He's telling his patients "no ANPs" (according to you), but telling the medical community that ANPs are the answer, that he's been doing successful trials with ANPs and he's ready to publish and he has all the answers. Also, if he's not using ANPs, why is his website plastered with ANP propaganda and studies that he has done?

If I were you, I'd go down the road to Texas Children's Hospital and see some of his ex-patients for myself before committing myself to his hands!

"... 776 patients with brain tumors were treated in trials and that 15.5% have survived five years."

Hmmmm - Is that better or worse than the Gerson protocol?!

Elburto, how can you possibly make any comment on the cognitive impact my tumour is having? You are just guessing in a pathetic attempt to strengthen your arguement. You know nothing about size location etc.

What I am getting here is not standard in the UK. How many times do I need to repeat that? It may be standard here but not at home and they point blank refused to do it. Also you do not know the exact medication I am on OR if this is the same as I would get in the U.S mainstream system. All I would say is I am a VERY proactive person and check everything, then check again.

Just grown men eh. That made me laugh you thought the need to point that out. Embarrassing.

As for the last bit, you clearly have zero sense of humour and frankly what you posted was embarrassing.

Let's see.....776 patients.....$100k a pop......that comes to $77,600,000.

$77 million???
No wonder the guy has a house that looks like Wakefield's.

Just grown men eh. That made me laugh you thought the need to point that out. Embarrassing.

There's women here too, you know. Interesting you left that out. You're the one who called us all 'boys,' remember?

All I would say is I am a VERY proactive person and check everything, then check again.

I would keep very detailed records of all of your financial dealings then. Make sure you get hard copies of everything as each document is issued. Burzynski is notorious for financial trickery:

http://theotherburzynskipatientgroup.wordpress.com/2013/01/18/burzynski…

Adrian,
Just to clarify what I said earlier. I have been told very clearly that Anteneoplastons are NOT available at the Burzynski clinic.

The inference I was making earlier is that in my opinion he is continuing manufacturing them for a reason. That reason I do not know. I'm not sure why that would be a lie. He clearly believes in it but and is "selling" it to the medical community but not administering it to new patients. Big difference.
I'll let you guys (happy elburto) slog it out here or in the medical journals as the the effectiveness of Anteneoplastons. I admit I'd like to see some more numbers, we'll see I suppose.

Just to clarify what I said earlier. I have been told very clearly that Anteneoplastons are NOT available at the Burzynski clinic.

He can still use phenylbutyrate, though, which is in effect "AS2-1."

Wow, a lot of sense of humour failures here. Adam, it's not about the money. I paid a lot of money for private treatment in London. Basically it was crap.

Checking. I'm not talking financial.

@ Martin: Elburto is one of our most respected "RI Regulars", who posts from the U.K., and is one of our "experts" about the NHS.

I believe you stated up thread that you are seeking treatment (a "traditional" anti-cancer drug?), that is not available in the U.K. My question to you would be, why did you chose Dr. Burzynski, who is not a trained oncologist, who has no hospital affiliations whatsoever and who...will get those "traditional" anti-cancer drugs from his family-owned Southern Family Pharmacy/Southern Family Pharmacy IV Infusion Company...at inflated prices?

If there is such a "traditional" anti-cancer drug that is licensed in the United States and not in the U.K., every oncologist in the United States who is affiliated with large cancer treatments in the United States, can easily prescribed that drug and will not charge you at exorbitant prices.

Elburto also mentioned a woman who successfully sued Burzynski (Lola Quinlan), to recover damages for the poor quality care she received and for using her as an ATM...depleting her life savings ($60,000 USD)

Scroll down to see the lawsuit and other lawsuits brought by patients of Burzynski:

http://josephinejones.wordpress.com/2012/04/29/if-the-media-care-about-…

Sorry, I must go offline for now.

@Martin - then you'll enjoy paying even more for crap treatment here in the States....have fun!

Narad, is that medication illegal in the U.S?

Nasty ghost Lawrence! I've told you already

@martin

The MD Anderson Centre (Houston) is world famous for all the right reasons. Like the Starship Enterprise compared to Burz's broken horse cart.

Please check them out first. Good luck from a fellow Manc.

PS. Burz would not be allowed to do what he does anywhere but Texas - and maybe Nigeria. He also claims to have invented anti-cancer toothpaste and miracle anti-aging cream... Total charlatan.

Martin, you saying that the treatment you are getting is not standard in the UK is like saying deploying the landing gear during cruise isn't standard for pilots.

Burzynski uses known chemotherapy agents in a way that has no justification and charges a mint for the privilege. Unless the clinic has changed its SOP you can also expect him to disclaim any responsibility for your treatment if anything goes wrong (see reports on the clinic's past legal troubles).

Narad, is that medication illegal in the U.S?

No, nor did I suggest that it was. Sodium phenylbutyrate is an orphan drug, and it's orally metabolized into PAG ("AS2-5") and PA, which in combination are "AS2-1," viz., "antineoplastons."

I'm not a man Martin, and I am British, not American.

I know what Burzynski uses because that information is available all over the place, posted by hopeful patients. It's been discussed here on this site too, and others. It. Is. Chemotherapy,

You could have asked:

-Maria V

-Janet E*

-Kathy B

-Kenneth J

-Denise D

They're all dead. All victims of Burzynski's lies and his "Gene-targeted therapy' scam.

I notice you've nothing to say about the woman charged tens of thousands of dollars for drugs she'd obtained for free from 'evil' Big Pharma.
Are you getting sodium phenylbutyrate as part of your "treatment"? You can get that over here for standard prescription cost, about £8**

*Janet's husband Dave was doing exactly what you're doing now. Defending Burzynski to the hilt, railing against actual oncologists, claiming that Burzynski had all the answers to his wives problems, and claiming that anyone who was against Burzynski was a shill, or evil, an agent of Big Pharma, trying to hide the truth, etc.

Now he's a widower. A penniless widower, who spent his wife's last months chasing a fantasy and being force-fed lies

Here he is in the same position you're in now:

skepticalhumanities.com/2011/11/26/stanislaw-burzynskis-public-record/
(ctrl+f for the word 'Janet')

They comment for a while, insisting that Janet is healthy thanks to the GTT.

Here's Janet's story:

theotherburzynskipatientgroup.wordpress.com/2013/05/17/burzynski-patient-janet-e-s-story/

We just don't want to see 'Martin V's Story' on TOBPG. None of us know you, but we don't want you or anyone else to throw every penny of your hard earned savings making Burzynski richer, while leaving your family grieving and destitute. It's so sad to see yet another obviously intelligent, hard-working person being victimised by someone who's either holding back the cure for cancer, or is just pretending that he is, for financial gain.

You'd be better off buying 30,000 Euromillions tickets.

Bonne chance.

**Not sure of the exact cost, mine are free so I'm not up to date on the standard fee.

Martin, permit me to make an observation, one that I have picked up on in over 30 years of clinical practice observing how terminally ill patients react and respond to bad news, and how they react when they are then "sold hope" through the back door.

I can tell you this Adam, for the brief period I saw Dr Burzynski he said nothing of the sort. He never said he could help, he said there are drugs which MAY help me but it was by no means guaranteed. You all seem very interested in all things factual so let’s keep it factual. He pointed out to both me and my wife I am in a very bad position.

That's how they hook you in. Classical tactics direct from the pseudoscience playbook, following behavioural psychology 101.
First thing is to drive you down to rock bottom. Pull no punches, and make sure to extinguish all hope. Basically, you are as good as dead. Then, when you are truly in despair, let a little chink of light shine in, and suggest there is just a tiny possibility of a glimmer of something which might occasionally help. Which only they can provide, of course.
Human nature being what it is, you grasp at this straw for all it's worth - it really is your one and only chance of life. Once you are hooked, you are cleverly played. They give you stories of patients "surviving", and before you know it, you start down the path they want you to follow. Once committed, they make sure you know that to stop now would make you end up in a worse place than you were to start with. You can't risk any deviation from their agenda. They are home and dry. On your part, no cost is too prohibitive, no effort too much. You want to live, and you need to believe, and part of your subconscious way of coping and surviving is through eliminating any suggestion that you might be making the wrong decision. Cognitive dissonance can often be the most powerful driver of irrational human behaviour, and it seems to be so wrt Burzynski.

"you guys (happy elburto)"

Just checked, still not a bloke. Happy? Given my situation yeah, as happy as I could be.

If you feel cheated by the "crap" you were charged for here in the UK, you won't like the Burzynski clinic. They'll bill you for every syringe, every sticking plaster, infusion bag, cotton ball etc.

If you don't care about the money, then fair play to you, must be nice, but be warned - the more money you've got, the more Scamley will squeeze you for.

It can't hurt to pay a visit to MDA.

@Dingo - Don't forget that Burzynski (and other charlatans) have one final song in their playbook - if the treatment works it's all down to them, and if it doesn't? That's the patient's fault for not following the protocol/following the right diet/being positive enough.

That lets other patients believe that they'll be fine, it fulfills the 'Just World Theory'. They'll eat the right foods, follow the protocol to the letter, keep positive and keep praying for a miracle, and they'll live. The others, the ones who died? They must have done something wrong.

He also claims to have invented anti-cancer toothpaste and miracle anti-aging cream…

Let's not forget the proposed prophylactic cigarette (PDF).

@ Martin Vizzard:

I truly hope that there is help for you but I doubt it will come from Dr B.
Being a psychologist, I'm not expert in cancer therapies, but I do survey alt med / natural health and their methods of inveigling patients away from SB care. I can second Dingo199's excellent presentation of how charlatans work.

You are obviously intelligent and accomplished but that is no absolute guarantee against being fooled especially when you are facing such a dire situation: emotions can and do affect our judgment. No one is immune.

If you were not helped at Harley Street, there are other reasonable places and clinical trials. I am glad that you are following up on the Australian surgeon. The suggestions for American clinics like MDA or SK are also wise.

Whatever happens, I sincerely hope that you are amongst the fraction who do survive despite the odds.

@Denise - I agree. I wish Martin nothing but the best & do hope that he finds a treatment that at least helps him prolong was seems like a very interesting a fulfilling life.

I also hope that he doesn't get swindled by Dr. B & spend whatever remains of his life under a quack treatment that has no good evidence to show that it will do anything other than empty his bank account (for whatever loved ones he leaves behind).

Martin Vizzard - this is meant in all seriousness and with no agenda. What evidence (besides a few patient testimonials) has the Burzynski Clinic given you on the effectiveness of their gene targeted therapy? If he's actually getting better than standard results, it would be good to know.

Thanks.

BTW - I think you have exaggerated the General Prudential rule. I understand that when you're in (or approaching) an extremis situation then you cannot stick to all the published flight rules if doing so will cause an accident. On the other hand, you cannot go outside the envelope (outside the box, maybe, but not outside the envelope). You don't pull Gs that would rip your wings off; you don't open the cabin door at 30,000 feet, you don't try to extend landing gear at mach, etc. You never throw away all the rules.

My apols Elburto, it was the name the foxed me. Trying to be a PC as possible but had you down as small, maybe slightly tanned with a small handle bar moustache. It's the interwebs fault, all these user names, that's why I just use my name, less confusion.

Allow me to assure you all that I am no shrinking violet. Some may even go as far as saying gobby Northerner. However I will not be railroaded by anyone. I have been "shopping around" and am fully aware of all my options. I have been in contact with numerous facilities who if I think can help will be helping me.

Try not to worry too much about Mrs V, she'll be more than alright!

Have any Anteneoplaston patients ever been on here? My goodness I bet you lot pull them to shreds!

Martin,
Just to be clear, I am interested in your well-being, and that is my only motivation in trying to persuade you to seek better medical care.

I was offered Standard treatment ONLY in the UK as a private patient of the Harley Street Clinic. This is what I am annoyed about. Come on boys, think outside the box.

"Standard treatment", as you put it, is the best available, as assessed by NICE. I have worked in NHS hospitals and in a BUPA hospital in the UK; private treatment may allow you to jump the queue, and you may get a nice private room, but you will generally get the same treatment you do on the NHS, often from the same doctors. There are some cancer drugs that aren't available on the NHS, but they are mostly very expensive and unproven. There are doctors and scientists worldwide thinking outside the box and looking for safe and effective treatments, but conventional treatment is the best we have at present.

What I am getting here is not standard in the UK. How many times do I need to repeat that? It may be standard here but not at home and they point blank refused to do it.

If they refused point blank to do it, they must have had very good reasons for doing so. The point is that Burzynski, who is not a trained oncologist, uses these drugs in combinations and doses that have not been tested, for types of tumors they were not designed to treat. That's a dangerous and cavalier way of going about clinical innovation. Unexpected side effects are far more likely than unexpected benefits.

Yes you can. The aircraft manufacturers do not issue guidance on all events. It would get very boring very quickly if I started war stories but let me assure you overspeeding the flaps or gear or exceeding any limitation when you have a cockpit full of smoke. And I have had a cockpit full of smoke, amongst other things. At that point it is basic survival mode. I have friends who have done strange things and lived. Others stuck to the rules and have died. Allow me to point you to the Swissair Canada accident as an example of how NOT to do things. I am not being over the top with that in any way.

Hell, there’s nothing stopping him publishing his own journal, is there? He could rope in any supporters to help with capital (why change the habit of a lifetime?) and publis/distribution

If burst ski (that's what autocorrect gave me and I think it's better than his actual name), anyway, if Burst Ski genuinely wants to publish, all he has to do is stick his data up on the interwebs. He's very keen to exploit modern media modalities when it suits him. The FDA could do absolutely nothing to stop him presenting all the objective data for his competently performed controlled trials that he has filling up his filing cabinets after all these years.

For Burst Ski to say he'll be publishing "soon" after decades of supposed trials, hundreds of patients and tens of millions of $$ is pathetic.

@Martin - I know, that if you'd look, you'd see that we have nothing but the greatest sympathy for the patients....and unfortunately, we've seen few, if any, because the vast majority of those who received Dr. B's treatment are now dead.

Again, if you want to see how the clinic operates, all you need to do is take a look at the patient histories posted on "the Other Burzynski Patient Group." The final quality of life of those individuals is not something I would wish on my worst enemy.....

It would make all of us extremely happy to be proven wrong, that Burzynski actually does have an effective treatment, but unfortunately, because of the way he operates & refusal to make any of his results / trials known, it is impossible to know what is effective....but in light of the results that are seen (the dead children, husbands, wives, mothers and fathers) and the same sickening descent and progression of diseases, with the same platitudes, like read from cue-cards from the clinic, it really doesn't look good, not at all.

You've been pointed in much more promising directions, to organizations and researchers / oncologists that actually publish results and stand behind them - which Dr. B does not....in situations where people are desperate, it is horrible that all he offers is empty hope.

Please take our advice in the manner in which it is intended, to prevent you from making a grave mistake with what remains of your life.

Lawrence, that's cancer isn't it and that's the hand I have been dealt so I need to play it now. Be assured I will not be wasting any time (please no-one mention money AGAIN) in having my treatment analysed (and not by the Burzynski clinic) and if it doesn't work I'll shake their hands thank them for trying and move on to my next option.

He’s very keen to exploit modern media modalities when it suits him.

I imagine that a lot of red arrows drawn all over the page could go a long way.

You clearly are more experienced than I am. It was drilled into me that the emergency procedures and system specs were written in blood. I withdraw my comment.

However, if you do find some information from the Burzyinski clinic that shows that their techniques are more effective than the current standard of care, please do let us know.

You know what BSM - I never even thought about the straight-to-web route. Couple of mouse clicks and it would all be there, all that lovely evidence.

@Martin no 'tache I'm afraid. Tried it, couldn't pull it off. If I can't have a perfect Poirot 'do, then I'm not bothering!

We've had Burzynski families here. We don't shred them at all. We're scared, sad, worried for patients and their families, the only people we're angry at are Stan's Scam Clan. They lie, and wheedle, and spin fantasies and false hope. They show people who are in a dark tunnel a bright light. Unfortunately it isn't a beam of hope, it's an oncoming money train, bearing down at full pelt.

That's why we're angry at him. Every single person here has lost someone to cancer or fought it themselves. We know how easy it is to be manipulated when you're that desperate. Even Orac himself has been there, watching someone die, knowing that even as an oncologist at the bleeding edge of cancer research, he couldn't help.

I know that if I was offered a cure my my problems I'd desperately want to grab it with both hands, I would do almost anything to get out of this room, but "almost" is that key word. If there's no evidence that it will help, then I can't put Other Mrs elburto through that out of false hope, she's got enough on her plate.

Working for the NHS I heard heartbreaking stories from people who were trying to come to terms with imminent death. I saw my own grandmother aggressively resuscitated over and over, because nobody wanted to let her go. As I lay holding her, telling her it was ok to just let go, that wasn't because I didn't love her. I told her to let go because I loved her to death, literally. I didn't want any more pointless pain, but at the same time I was desperate for a last minute breakthrough.

We know what it's like.

If you check out The Other Burzynski Patient Group (links upthread) you'll see in Amelia's Story that her dad, Richard, came here because Orac had explained that Burzynski's claim that little Amelia's tumour growth was "cysts forming as the tumour dies", a lie that made the family ecstatic with hope, was just that. A vicious, wicked lie. One that's told to every brain tumour patient at the clinic.

Orac recommended that. Richard get a second opinion from a real oncologist. Amelia died soon after, and in the second Burzynski film Merola implies that her death was because the ANPs were stopped.

She was a beautiful little girl whose parents did what they thought was best, who fought to keep their precious child alive. They were sitting ducks for the Burzynskiites, who bombarded them with success stories, and love-bombed them during a dark, bleak time. They were conned into taking that poor kid halfway round the world, and having her pumped up with stinking, toxic infusions around the clock, while being told that a few months of discomfort were worth it, because she'd have so much time left after the treatment.

I've cried real tears over Amelia, and over little Luna Petagine who suffered so horribly, while her parents were being told to stick with the treatment because it was working. Tiny little Luna, slobbering and urinating constantly, desperately trying to chug water, her little face bloated and distorted. That image haunts a lot of us.

I truly, honestly hope we never, ever see 'Martin V's Story' on TOBPG, and that you have years ahead of you you.

Gan canny man.

and if it doesn’t work I’ll shake their hands thank them for trying and move on to my next option.

Aren't you worried that they'll give you inaccurate interpretations of your tests in order to retain you as a patient? How can you make sure you're not being lied to, given that you aren't qualified to analyze the test results yourself?

Couple of mouse clicks and it would all be there, all that lovely evidence.

And this is the central issue. It's not that Buttinski's treatments definitely don't work; they probably don't work. The real issue is that he clearly holds in his hands plenty of evidence by now that would show whether his treatments might work. The resolution to this is entirely in his hands. The only fact we know about his treatments is that he holds data and will not release it.

As you have said there are only two scenarios available to us and both lead to the same conclusion.

That was a really nice post Elburto, thankyou. I realise that most contributors here are either involved in treating or developing new treatments in the U.K and U.S and it certainly isn't my intention to be disrespectful. I understand your pain with the loss of your Grandmother, I have seen that first hand also.

I have read a lot on these pages but not really looked at patient testimonials. My treatment is my treatment, it mind sound cold but I'm not interested, especially in those who have recovered. I'm not going to be conned into thinking all will be well by my mind. Why? Because all is not well and the odds are complete crap.

All I wanted to do is get a multiple option plan which included off label drug use then chemo and radio if appropriate followed by a couple of other options I've been chasing up both in the UK and US. Not just one option. Option B is at a world class establishment with a new plan c of Australia (scan dependant). Other options in place also.

To be honest I feel a little annoyed by the UK system. I have been scanned 4 times since 2010 (right Acoustic neuroma) and this was picked up early Feb 2013. Early 2011 find and it's a different scenario (but not ultimately). Going back and reviewing the scans I was told sorry we missed it. It's abit unusual really, I've no headaches, seizures, blackouts, numbness, tingling, nothing. I was in Queens Square having function tests before the biopsy and the doc was saying "your stronger than me". Cognitive, seem ok but after today some here may say I've lost the plot. The scans say something different though. Until 7th May flying around, high speed decision making, co-ordination fine. It is really strange, feel like I should be at work!

However I'm aware the onset could be rapid, that's why I won't have anyone waste my time. Simple question, 3 weeks, is it changing? No I'm gone, Yes look closer, independent check, review implement continue.

Adam G, I won't be analysing, that will be done by someone very qualified and totally independent, in the UK.

I have friends who have done strange things and lived. Others stuck to the rules and have died.

I imagine that it is difficult to design a double-blind random controlled trial for different approaches to cockpit emergencies.

herr doktor bimler - they generally frown upon blind pilots. But then, those pilots don't notice the frowns.

Mephistopholes - nor does smoke impede their vision.

Your quite correct, it doesn't dingo. Nice post Herr Doktor by the way, thanks for that.

Best wishes, Martin.

Thanks.

Best of luck Martin - if you do end up with more interactions with Dr. B, we'd love to get a full report (since there is no other way to get information out of that man, it seems).

Martin, I second everyone else. Best wishes to you.

In case you haven't seen this, one man's successful experience with DIY glioma treatment. Some of the parents of children (who else) with recent experience may help extend BW's effort to the most current opportunities.

Don't expect many positive recommendations here. MOB@65 is correct about distinguishing "the box" and "the envelope" but you probably knew that. Personally my own effort with other refractory material has been to develop multiple trendlines and data from tests as fast as possible, recognizing problem components, trialing strong, low toxicity candidates asap. False positives are not our friends, so objective attitude and data gathering are very important to success.

Beyond a certain amount of initial learning, traditional oncs weren't a lot of use or hope, and even the surgeons agreed. Beyond the MD, PhD, PhD-MDs that one can "consult" in the literature, I have had help with specific recommendations, research and tasks from MD and PhDs from places like UCSF, Stanford, Berkley, Illinois etc as well as more international ones doing uncommon things where average is a nonstarter. Not just Dr Google. This site discusses some of the natural adjuncts proposed for brain tumors.

I followed the link to the second site linked in PRN's post. It was at least composed in standard English and in a reasonable sounding tone, with citations to one or another study. One might think it worth trying...buying some of the supplements coincidentally available there.

But it's actually a reading comprehension test: there's a helpful note at the bottom of the page, which is an image rather than html text. Should you continue reading that far, it says in effect

"April Fool's, the fool is you!"

FDA disclaimer short" src="/images/mercury/template/hg-footer-disclaimer.gif"><img width="955" height="92" alt="FDA disclaimer long" src="/images/mercury/template/hg-footer-disclaimer-information.gif

I have a genuine question -- if antineoplastons are decidedly ineffective, why has the cancer division of the NIH supposedly received 11 patents for similar drugs?
Any info would be appreciated. Thanks.

In case you haven’t seen this, one man’s successful experience with DIY glioma treatment.

I've also followed the link and read what Ben Williams wrote.

His points about the limitations of RCTs seem to be reasonable, but he doesn't really present any meaningful alternative. His idea of using small weak studies and historical controls simply opens the door wider for false +ve results. It's the perpetual trade-off. Which error do you want to live with?

The other problem is that he speaks from the relative comfort of having survived 17 years after his diagnosis. But he describes studies that really only demonstrate differences in survival measured in modest numbers of months over typical survivals of a small number of years as if these small differences in some way have contributed to his very lengthy survival.

All over the Burzynski saga we have Survivorship Bias writ large. We get to see the outliers and those outliers comment either on their own behalf or let Burzynski use them as if they tell us what happens to most patients. It seems to me that the piece by Ben Williams does the same.

We get to see the outliers and those outliers comment either on their own behalf or let Burzynski use them as if they tell us what happens to most patients.

Perhaps, with Martin in this thread I need to put that another way. The formulation I just used focuses on averages and typical and mean outcomes. That's not what matters to Martin. But the problem is the same even if we cast it in terms of a single patient. Outliers tell us nearly nothing about what the single patient in front of us can expect for their personal disease outcome nor whether any of the various strategies they might pick from this weakly-evidenced cocktail approach will provide any benefit that exceeds the harms even if that patient is prepared to expect high risks of harm and severe side effects for small pay-offs.

Sorry, one last thought. The whole problem is that every cancer patient wants to be told there is a way to live their full span of life as if they'd never had cancer. The big horrible truth is that for many cancers that is absolutely out of reach for us at the moment. We don't want to be discussing increases in survival expectation from 18 months to 22 months but that's where we are and for someone who is quite young this is unavoidably catastrophic.

Middle of the night cookie please.

As with any choice, people fundamentally decide to go down the Burzynski path for a reason. They do it because they find the expense, pain and risks of Burzynski preferable to the alternative, which is facing the reality of their imminent deaths. And I'm not going to judge them for that because I can't guarantee that I wouldn't be the same way, if I were in their position. So, much as I may deplore Burzyski for making such obscene profit exploiting people in extremis, the Hannah Bradleys and Martin Vizzards of this world must gain something, on some level, from the process, or they wouldn't be doing it. And I don't think it's that they don't know that it's bogus, they have seen all these well qualified people explain it at length. It's that they choose not to acknowledge it.

It's the Amelia Saunders and Luna Petagines, on the other hand, who are vulnerable in every sense of the word. They don't choose to go half way around the world, undergo invasive and painful procedures, be hooked up to a medication pump for months on end, and be exposed to toxic drugs, with often horrific side effects, so that their parents can be temporarily shielded from the reality of their prognoses. No child likes undergoing medical procedures and will often have to be coerced into submitting to them. The coercion is justified by the benefit the child will gain from the treatment, but isn't capable of understanding. Burzysnki and his staff victimise these children, by subjecting them to what is in essence an assault on their persons, without any realistic prospect of helping them.

@andrew s:

Sorry, not sure exactly what you mean? The cancer division of the NIH is not the Patent Office, and as far as I know, they don't "receive" patients. Could you maybe explain a little more about who exactly took out the patents and what for?

Sorry, I mean "patents", not "patients"

@ andrew s

if antineoplastons are decidedly ineffective, why has the cancer division of the NIH supposedly received 11 patents for similar drugs?

Disclaimer: not a lawyer, not even in the US.

That being said, here are my two cents:

It depends a lot on what the patent is about.

If it's a patent on a production process (i.e. how to make tons of ANP), it doesn't matter one iota what pharmaceutical efficiency ANP have, if any. Here is how to make them, what you do with them is your own business.
By the same token, you can find patents for creating perpetual motion machines, not a single one of them actually working perpetually.
As a less extreme case, my former university lab registered a patent on a series of biomolecules naturally found in all humans, in the case one or more of them ends up being used as part of a new chemical/immunological diagnostic kit. Some preliminary experiences lead us to believe that these specific molecules could be worth monitoring in a clinical setting. However, that any of these molecules could be useful still remains to be proven - we only did pilot studies, and we were betting on our results being confirmed and used to market a new diagnostic tool. I may be overly negative, but I doubt very much that we would ever earn a single kopeck from this patent.
That uncertainty on our molecules' usefulness didn't stop anyone from writing and registering our patent.

Next, there is this whole off-label issue, i.e. drugs being used in a different medical setting than the original one they were registered for. ANP could have been patented/registered for a perfectly valid application. Simply not as all-purpose anticancer drugs.
As an example, vitamin C has perfectly valid applications as food additive/conservative/treatment of scorbut... But evidence for its efficiency as a cancer-killer is still lacking.

My only comment on the Anteneoplaston debate is that the National Cancer Institute did the study a long time ago (1991).
No motive in this comment but 22 years is a long time, is there a new trial on the horizon from them? Have become intrigued by this whole ANP debate. Is the following (NCI website) not enough to trigger a full scale trial by them? And I'm meaning in combination with other treatments?

The patient with anaplastic astrocytoma received antineoplaston AS2-1 in addition to other chemotherapy and radiation. An MRI 6 weeks after diagnosis showed a 50% reduction in tumor diameters.

http://www.cancer.gov/cancertopics/pdq/cam/antineoplastons/healthprofes…

@Martin - why not ask the folks at Burnzynski's clinic? They have been "conducting" over 60 different clinical trials, but don't seem to be able to publish any final results from any of them......

For those of us in North America who have not been able to see the Panorama episode yet, the entire 30-minute segment has just been posted on YouTube:

http://www.youtube.com/watch?v=GdZf5_El1Pw&feature=youtu.be

Elihphile, that was good.
If I had GBM just maybe I'd opt for sequencing (and measuring about 20000 mRNAs) and doing off-label treatments "for dummies" (as Orac so often claims about SB). What docs would I go see if I wanted to try that?
Would it work? Probably not. Will it be just a waste of time and money? Probably so. But if that's what a person wants to try, where do they go? Folks will increasingly want to try this.
Is there off-label use of targeted agents that isn't "for dummies"? Some, often as part of a new trial, but usually not of use for your particular situation. Trials and docs trying truly wild-west attacks are hopefully rare - I actually consider most to be unethical and what should or should not be allowed as part of research is very much in debate (I hope - but I fear it isn't debated enough because it's too complicated). It's a very detailed matter, which we rarely get to the kernel of even in the cancer community. I usually start the story with a famous von Hoff paper, which is the first targeted-therapy-for-dummies paper I know of. Very briefly, my objection to such trials is that I don't learn what I wanted to know from them, which is what therapies or combinations work best in particular tumors with specific genetic alterations. I want highly-stratified medicine, not personalized.
Anyway, for GBM I don't think it crazy to study what hedgehog inhibitors you could currently get your hands on, and trying to figure out if addition of trastuzumab would increase the toxicity, and perhaps try it on yourself, even though you'd know it probably won't work, and may make you very ill. Yes, personally, I'd try to put myself on a relevant clinical trial first - even just to have my death 3 months later or earlier informs future care. Perhaps that's cause I used to research GBM, and have a deep hatred of it. When I die, let it be for a cause worth dying for, like data, believe it or not. Other folks may not feel that way though.
PS: I am not trying to defend Burzynski by any means - clearly too many additional problems. I'm trying to explain the situation of the patient.

Andrew, ANP-like molecules have been patented because someone, at some time, thought that they might possess some monetary value and wished to secure exclusive rights to their production or use. Whether they were right or wrong-whether they actually are valuable commodities--remains to be seen.

And given that phenylbutyrate, the pro-drug molecule that metabolizes to phenyacetate, one of BZ's antineoplastons, is marketed as Buphenyl to treat urea cycle disorders, they might even be right. Maybe one of these other ANP-like molecules would also be effective at treating urea cycle disorders. Or athlete's foot. Psoriasis. Warts. Something.

But until such time as someone conducts clinical trials and publishes their results, we won't know.

What we do know is that Burzinski's clinic has published no results demonstrating that as claimed antineoplastons are effective at treating advanced stage cancers, despite initiating more than 60 Phase II trials over the past couple of decades.

Why do you think that is?

I have little to add to the dialog between commenters and Martin V., except that while it seems that for MV, money is no object and Mrs. V will be provided for no matter how much is spent at B's clinic, so therefore, it's not an issue. Not for him, perhaps (and I understand that at this point he is only concerned for himself, really I do) but what about the people who had to do fundraising to get to Houston and the "treatment"? What about all the compassionate people who gave money to those fundraisers thinking they were helping some poor little child get treatment, which only magnifies the idea that governments are conspiring to keep "miracle" treatments from their citizens?

It's debatable whether or not Martin has any moral responsibility beyond his own predicament and wallet, but I think this presents an opportunity for all of us to think about such moral dilemmas.

Martin, if I'm on a plane going down, my hope is for a calm and rational pilot who presents the situation truthfully, thus perhaps allowing me some meaningful goodbyes. Yes, I want someone brave enough to break some rules, but only within the bounds of reason. As someone said above, I do not want the hatch opened at 30,000 ft. in some vain hope of saving me.

I have only one thing of substance to offer here. I am aware of a couple, friends of a friend, who went to the Burzynski Clinic. During the initial evaluation, they were able to figure out that they were being scammed. When they raised objections in front of other patients, they were summarily ejected from the office (by the way, I think that says a lot).

If Martin is willing to listen, I am willing to attempt to get an e-mail address so he can talk to them. No guarantees. I really do not know if they would be willing to talk to him. Martin, if you are willing to listen to them, and I mean really listen, please contact me via Orac.

Yes Lawrence, I know that, it might of been mentioned a couple of times yesterday. Please assume from this point forward I am fully aware of that.

My question still stands. I assume a complex trial to arrange, but achievable?

There are some flying machines around where the bomb removal technique at high level is descend to FL250 depressurise the hold and eject the object. So maybe in some cases you do want a hatch opening. I am not making irrational decisions. I have other plans lined up and will follow through with them. I'm surprised no one has analysed correctly exactly what my mode of operation is. I've said it a few times now.
Thanks Michael, help is appreciated. All options being looked at.

The results from the earlier studies, however, don't support the need for additional investigation, much less full scale clinical trials, and in the 22 years since no new results have been published altering that assessment.

With respect to the patient who exhibited a 50% reduction in tumor diameter, it's impossible to attribute the outcome to the co-administration of ANP's. The reduction could be due to the chemo they also recieved, or the radiation, or even something else entirely. There are rare instances of spontaneous remissions, after all--no way to tell if this result isn't one of those outliers.

But one thing is pretty much a certainty. With 60+ Phase II trials later and hundreds of patients treated at his clinic, Burzynski must have sufficient data to accurately assess whether or not ANP's are effective at treating advanced --but he refuses to share that data with anyone.

Why do you think that is?

I think what makes Luna Petagine's case even more tragic than the typical childhood cancer stories is that her mother seems to blame herself for her daughter's condition.

Lucy Petagine is under the impression that it was her faulty breast implants leaking while she was breastfeeding Luna that might have resulted in her daughter's cancer.

Lots of stories from the British press here:

http://www.google.ca/#q=lucy+petagine+breast+implants&spell=1&sa=X&ei=F…

It's bad enough and unfair when a child gets cancer for "no good reason" but when a parent thinks it was her fault, whether real or imagined, well, I can't possibly imagine that guilt. and the lengths to which she'll go to try to help.

I noticed when I first watched the GOSH doc on Luna that her father never said one word, either to the cameras or to any doctor, about Luna's prognosis or treatment options. Her mother was clearly the one making all the decisions, and maybe that's because she felt responsible.

I take your point JGC. So basically the situation is that if a substance is looked at as a possible treatment is discounted (not sure if that was a numbers thing but I've seen it posted here that you need a decent size) then it never gets looked at again? Also worth combining with other treatments?

I cannot comment on the contents of Burzynski's data, but then again no one can. An assumption it is not favourable can be made but until the numbers are published it simply not fact. I've been asked "why I think that is?" about 10 times. Just as you guys don't know neither do I.

All I was asking was about the theory of a new study. Would put things to bed.

It gets looked at again once there's a valid scientific reason to do so--if new results suggest efficacy with respect to the original indication, if similar molecules show efficacy for different indications, etc. But if it showed no promise, and has not since showed any promise, there are always other candidates with evidence suggesting greater potential for success which are better investmenst of the limited resources we have available for study.

If Burzynski has evidence of efficacy and published it that would be a game changer, and other labs/companies would start running studies. As he hasn't, we're 'put to bed' with results from early studies failing to support a need for further study.

None of the results since though are valid because they have not been published. I'm talking about Burzynski there. Also that may cause future debate about data collection etc etc etc. So is it not just a case of forgetting about Burzynski for the purposes of a new trial. If you are saying his data is not valid, it shouldn't be used as part of any test.

It's put to bed because the study of the nine patients? Someone earlier said it needs to be a large (ish) number to get reliable data. 9 doesn't seem that many.

It's not that none of the results are valid because they haven't been published but that there are no results to consider in the first place, because they haven't been published. Only after they're published can anyone assess their validity or lack there-of.

ANP's haven't been 'put to bed' on the basis of any single study, but upon consideration of all evidence speaking to their potential as a therapy--in vitro and animal studies, mutliple human studies looking at multiple ANP's (A, A10, AS2-1, A5, etc.). There simply isn't enough evidence in their favor to warrant large scale trials.

If there were compelling evidence ANP's could treat or cure cancer, believe me: Pfizer or Glaxo or Wyeth--a big pharma company with deep pockets--would have a dedicated antineoplaston program going as we speak.

Martin,
It's worth noting that most of the patients held up as Burzynski successes had conventional treatment, including surgery and radiotherapy, before seeing him. It is only in recent years that we have begun to understand how tumor necrosis after RT can look like tumor growth on CT and MRI. I strongly suspect that this explains many of the patients with brain tumors that were still apparently growing after conventional treatment, who went to Burzynski, and whose tumors subsequently shrank and disappeared. If that is the case, delaying RT may be a serious mistake. Whatever course you pursue, I sincerely hope it proves to be the best one for you.

JGC, this is a very simplistic view on things. Wipe the slate clean and forget Burzynski and the treatment and any stories that come with that. There is obviously a lot of history and "my opinion" is he shouldn't be involved. There is a few cases on the NCI website that look curious though. Tumour remission, all spontaneous? Now I'm not saying its ANP, nor am I saying its spontaneous because there is no evidence to support either. You cannot help but wonder though if cases like Hannah Slater have seen success based on a combination of treatments? Worth a look, I think so!

Now I will almost certainly get jumped on but big institutions make decisions based on numbers. Why bring a drug to market to treat a few people if you've already got a drug approved? Would I do it? Nope.

@Martin Vizzard

There is a claim that ANPs can treat inoperable brain tumors that have failed all other standard treatments. Do you really think that a Big Pharma company would not scoop that up and charge insurance companies a bundle if the claim were supported by good evidence? If the drug can only be given to a small number of people, then you can jack up the price to make it worthwhile. If the condition is so rare that it meets the criteria for an "orphan" condition, then there are government incentives to pursue a treatment.

Martin Vizzard, best of luck to you.

By the way, how would you feel about Boeing and Airbus deciding that they no longer needed a airplane validation and test program? Essentially just building the plane, and just letting the airline fly them out without any checking by very expensive flight test engineers and pilots. If car manufacturers can do it, why shouldn't aircraft manufacturers?

Especially if they changed the design, like replace the oval windows with square windows, to get back to that classic the De Havilland Comet. Would you be willing to fly it?

That is what you are doing when you put your health in the hands of Burzynski. He just mixes up some kind of treatment out of the blue, and has never published any results.

@Todd: I cannot say what a big pharma would or wouldn't do.

@chris: When the test crew get hold of the aircraft they are not expecting a hull loss. Work already done. A few examples of loss of control/stall in minimum speed conditions but that doesn't mean it is unsafe. That's an example using the population, based on the fact most people get in a car or aircraft at some point, whereas most of the population don't have cancer.

Burzynski has never made it onto the slate in the first place in order to later be wiped clean--he never published results from a completed trial.

What we're left with at the end are no studies where ANP's alone have been found effective, and some studies with small sample numbers (and high drop out rates) involving patients who received ANP's in combination with convential treatments (surgery, chemotherapy, radiation, etc.). It's impossible to attribute outcomes in these studies to the co-administration of ANP's.

Add to this the fact that phenylbutyrate, the pro-drug for one of Burzynski's preferred ANP's, AS2-1, was previously investigated pretty thoroughly as a possible cancer treatment without success and I really don't see evidence sufficient to justify further large scale study.

As to "Why bring a drug to market to treat a few people if you’ve already got a drug approved?", economically it would be because there's a profit to be made, and it's done all the time (why do you think you can choose between Alegra and Claritin for allergies, Viagra and Cialis for erectile disfunction, etc.?) But the fact is that at this moment there isn't an effective drug approved for treatment of the diffuse intrinsic brainstem gliomas Burzynski claims ANP's can cure, so it wouldn't be a case of bringing a drug which would compete with one you're already selling--we're talking being not only first-in-class- but first-to-market..

Martin Vizzard:

A few examples of loss of control/stall in minimum speed conditions but that doesn’t mean it is unsafe.

Ah, I see you did not get the big hint with the window redesign. Obviously you have no clue that changing a structure without test validation can cause catastrophic failure.

Seriously, you have never heard of the first jet liner, the De Havilland Comet? Yikes!

Perhaps you'd be happy if the landing gear metering pin was changed without test and validation, or if the tires were filled with plain air. Perhaps if they decided the gear should actually also be made out of aluminum, without any testing. Or perhaps if the electrical system was installed without checking to see if the wires were connected properly.

Because Mr. Vizzard, depending on Burzynski is just like getting in an airliner that has skipped basic analysis and testing. You might has well be flying a home built experimental made by reading plans written (or more accurately "drawn") by Ikea.

Humans are more complicated than flying tubes of aluminum. You should expect more exactness in the results of clinical trials done over the past thirty years.

You might has well be flying a home built experimental made by reading plans written (or more accurately “drawn”) by Ikea.

Something something John Denver something.

Narad, one Monday I came into work and found out a co-worker had died in his home built over the weekend.

Chris how do you know what I have and have not heard of? Your just guessing! Is that what your all about Chris, trying to discredit people based on guess work? We can make this about flying if you want. I didn't answer the window design because it is such a crap example I couldn't be bothered typing a full response. All your other examples are also bad.

I bet your a CRM gem!

Mr. Vizzard, all Burzynski has is guess work. He claims to have thirty years of research, but none is properly published.

And it is not guessing when you did not realize the significance of square windows and metal fatigue. You don't have be a structural dynamics and loads engineer to click on a wiki link.

I am constantly amazed at how little evidence people are willing to accept when they buy into certain medical claims.

Narad, one Monday I came into work and found out a co-worker had died in his home built over the weekend.

John Denver is definitely not a good example of the way to determine where a bad place to put the tank switch is.

So in your world Chris because I don't make a statement it means I don't know. Don't tell me what I did and did not realise. Please explain how over the Internet you can possibly tell what I know and what I'm thinking.

GUESSWORK CHRIS!!!!

You also don't know what other plans I have made so please limit your guessing. Are you in the medical profession?

As a mental health provider and a skeptic in training, please remember Martin when you feel you can not be fooled is when you are most susceptible to being fooled (Daniel Kahneman “Thinking Fast and Slow”). We must remind ourselves that our brains are deception engines and none of us are immune to magical thinking.

Cancer is the number one cause of mortality on both my mothers and fathers side of the family. I have had family members fooled into believing an unscientific method would work for them. I’ve tried to help them as best I can and assist them in educating themselves what their options truly are. Unfortunately for some there was no option and they went under care of Hospice.

Science is emotionless, cold, and logical. It tells us what is regardless of our desires. As human beings we are full of emotions, warm (some more or less than others) and like to think we are mostly logical. Pseudoscience likes to tap into our emotions and give us answers, even if those answers are fractally wrong.

I work in the dialysis field and deal with end of life issues frequently. It is a difficult topic for most of us to talk about. All life is finite. Some of us have more time than others. No one knows when the end will come. The best we can strive for is determining if we have accomplished all we wanted, did we do all we could. My patient’s have the option of deciding to discontinue dialysis and how they will leave this earthly plane of existence. In the end what we have left is dignity and quality of life. Each person must decide for themselves what this means. We have to remind ourselves that our best is good enough.

For you I would say come to an informed decision. This means gathering all the credible information you can and deciding for yourself what it is you want to do. Unfortunately Stanislaw Burzynski does not practice evidence based nor science based medicine. In my opinion he is a vulture preying on the weak and vulnerable. His motivation appears to be both financial and delusions of grandeur. He is credulous in his opinion on how his technique works.

I in fact have a patient who has decided due to her advanced age to not seek treatment for the type of cancer Orac treats as for her the side effects to not outweigh the benefits for her. Each person must make this decision but the bottom line is make sure it is an informed decision

I am shocked that a pilot is so unconcerned about the structural integrity of aircraft. Yet I am being accused of guessing. Which is exactly what Mr. Vizzard is doing about Burzynski.

You just cannot stop guessing can you! That is the worst possible sort of decision maker. You've taken a fact that you have assumed from a question I chose not to answer and trying to use it. So I am unconcerned about structural integrity why? Because I didn't answer a pathetically crap question on oval windows. If you did know anything, you'd realise why that is such a bad example.

I am not on ANP and will not be, I am taking off label medication and if that shows no signs of assisting I'm on my way back to Manchester. If it works it works, if not I've not lost anything.

If it works it works, if not I’ve not lost anything.

Well, you will have handed over quite a bit of money to an organization dedicated to scamming other innocent, less well-off patients. So there's that.

If it works it works, if not I’ve not lost anything.

Not necessarily true. In the worst case, if it doesn't work it makes you worse. If it merely doesn't work, you've lost time and have less of it to get a solution that does work.

MSII: Thanks for the link.

Rork: When I die, let it be for a cause worth dying for, like data, believe it or not.

Agreed. If they can't use my organs, I'd like to know my body could be used for a greater cause. You remind of a story I read a few months back: a little girl, not more than eight, died of a glioma. Her family donated her brain, in hopes th

That a cure could be found. I'll post links later.
Hit submit too early darn it!

Martin,
Are you aware of this clinical trial? It's in Texas, you appear to fulfil the inclusion criteria (if you are CMV +ve, which most people are) and it's currently recruiting.

Mr. Vizzard:

I have spent the last 15 years circumnavigating this planet as a captain, flying a beautiful aircraft quite possibly with some of you here down the back.

I am surprised that someone who makes that claim does not understand the analogy of testing basic aircraft structural criteria in regards to testing of cancer treatments. Both for safety and efficacy.

The reaction is baffling, and the reply that included crew response management, which has nothing to do with catastrophic structural failure, is odd. It is like something is fundamentally wrong, like not understanding airframe vocabulary.

Well of course you're not on ANP, Martin. Burzynski is not presently allowed to prescribe it, because he's being investigated by the FDA over it. He's not allowed to write any new ANP prescriptions until the investigation is complete, so he's taking great pains to make it clear he's complying. But the ongoing production suggests he fully intends to resume. Either that, or he's got a hell of a lot of old prescriptions to keep filling.

I can understand your frustration at the Comet thing. The deHavilland Comet is a much maligned aircraft; the well-publicized structural failures early in its history completely destroyed its reputation, even though the fuselage was redesigned and it went on to a very long service record. Today, people only remember the square windows on the first few Comets. The last of the Comet lineage went out of service in 2011: the venerable Nimrod.

Still, I see Chris' point. Commercial airliners, like medicine, are regulated, and those regulations require extensive testing prior to certification. I work in the aerospace industry, so I have first-hand experience with some of this testing, even though my company doe snot make airframes; we make things that go into the airframes. ;-) We spend a great deal of time testing.

So Chris' point with the question isn't really to test your knowledge of aviation history. It's to ask if you'd be okay with abandoning this level of rigor and regulatory oversight in the aviation industry, and adopting a level of rigor more comparable to Burzynski's.

Thank you, Calli. That is precisely my point.

And I only chose switching from oval back to square windows as a simple change that has some very serious ramifications, which would require a great deal of analysis and testing.

I added some more "simple" changes that would have serious consequences thinking that a pilot really does not understand metal fatigue and fracture. There is a very important reason why a jetliner's tires are not filled with air. I would hope he knows that.

Perhaps it is Mr. Vizzard's mindset that he does not want to understand the analogy. In real life he would probably not attempt to fly an experimental airliner, but is perfectly happy to be given an experimental cancer treatment. Airliners go from "experimental prototypes" to certified in less than three years, but Burzynski had had more than thirty years.

Perhaps Mr. Vizzard would be interested in Alternative Flight:

Do not worry. While the FAA prohibits the testing of these airplanes at US airports, there are many testimonials that these planes work, that they will transport you safely to your destination. The wisdom of past generations, which have used these modalities for air travel, ensure their effectiveness and safety.

Crew RESOURCE Management reference was a reference to you personally Chris. Because I think you an autocratic guesser!

I understand the testing system and need for testing. Chris needs to actually read the points I was making earlier in this thread. Chris very lamely seized on a more complex problem than windows that I described to call into question my knowledge, which, I can assure you is far from lacking!

Thankyou

Again Chris your guessing again on the tire issue. Do I REALLY need to tell you everything I know?

Shall we talk contingency on NAT tracks, EROPS 180 procedures or something else of your choice?

I tell you what lets make it Pacific crossing procedures. So let me ask you this, is it RNP 1-5 or 10 in the PAC? Where does RVSM start and end and is longitudinal separation a)10 mins -/+. 0.1 or b) 20 minutes. Is SLOP recommended? Should we use standard weather avoidance?

How many fixed and how many transition routes on the NOPAC and where does it run from and to?

When does my window of suitability open at my first suitable diversion? Oceanic clearance required in WTRS area just off New York?

Dude, cool it. The analogy went over your head. You are trusting your life to someone who has had thirty years to prove his magic cancer cure. Yet, you would not fly in a plane that has not gone through rigorous flight testing, including structural tests. I'm sure that you would be most unhappy if a jackscrew failed or the nose gear shimmied you off the runway.

But you are willing to bet your life on someone who just gives promises instead of evidence. Burzynski has had thirty years to prove his magic formula works, but he has produced no evidence.

You are just mad at me because I showed your hypocrisy. I am sure it is cognitive dissonance, but you need to recognize that if you are willing to depend on the hundreds of engineers (like me) to make a safe plane, you need to ignore one man's empty promises.

Should I use VNAV in Russia for a non prevision approach? I'm sure your aware Russia is not WGS84 compliant, Jump to South America and South Africa should I?

Martin,
I want to be sure you didn't overlook my comment at #133 above about this clinical trial: It uses T-cells with HER2 antibodies attached, along with a protein called CD28, which will attack HER2 positive GBMs. I think it is well worth looking at.

Your questioning my professional credentials. I hope that has now been put to bed. Now lets leave that subject and we can move on and I can explain again what I was saying earlier.
That ok?

Hi Krezbolen,

Me and my wife are sat looking at it now and I do thank you very much. I always admit when I didn't know something and I didn't know about it.

Martin - I hope it proves helpful.

Your questioning my professional credentials. I hope that has now been put to bed.

I'm inclined to concur that this analogy has run its course. And to wish Mr. Vizzard well, as strongly as I would echo the profound concerns about Burzynski's operation.

Ok, deep yoga breath (that's the Mrs)
What I was saying earlier is that there are certain things in this world that things are designed to do certain things. Of course they need to be tested and safe. For normal use!

My point (much) earlier was that sometimes in a dire emergency unproven techniques MAY yield successful results. Having been dragged around the space centre by Mrs V just a few days ago I cannot help but give the Apollo 13 event. Pure improvisation which could so very easily resulted in loss of life.
There are multiple examples (unfortunately in flying) where doing the standard thing killed everyone. By the way we have some good idea's. I have on my days off been involved in giving CRM lectures, and not to other crew. The medical profession did also adopt some very basic procedures from the aviation industry and had fabulous results.
This was my whole point earlier. As well as curiosity as to why you can't all get together, be nice and try and work out if this ANP stuff does work in combination etc.

Tiring work this posting business! Still no one has twigged how I'm playing this! I find that worrying!

Martin:
I think your analogy fails at a very fundamental level. You describe your situation as being that of a pilot who is in a crisis and must throw the book away in order to save lives.
In fact, a more accurate analogy would be that you are a passenger on a plane which is out of control and must select a pilot to save the plane. Your choices include trained pilots on the type of plane on which you are flying, other pilots who are certified on different, yet similar, planes, and one guy who hasn't flown since his service in the Falklands War* but says he has a radical new way to save a plane in crisis.

Looks like the old dude is getting the job, based on your comments above.

* The Falklands War was roughly contemporaneous with SB's discovery.

So I was curious about the 5-year survival rate for his brain cancer patients and went to GoogleU for a reference baseline (warning - this is gleaned from the internet and may contain errors).

Here's one very interesting statistic:

Patients with some types of tumors have relatively good survival rates. Five year survival rates for patients with ependymoma and oligodendroglioma are, respectively, 85% and 81% for people ages 20 - 44, and 69% and 45% for patients ages 55 - 64. Glioblastoma multiforme has the worst prognosis with 5-year survival rates of only 13% for people ages 20 - 44, and 1% for patients age 55 - 64.

So Burzynski's all-type 5-year survival rate is only slightly higher than the standard rate of the worst type for adults of child-bearing age* (15% v 13%). Unless he treats a lot of senior citizens with GBMF, this is not impressive at all.

*children have an even better prognosis according to the article

Ok Opus we can work it that way. It is very very likely that the old boy's skill level is far superior in terms of crisis management and is less likely to make a rash decision. Young guy, rule based decision making until he realises he's really in the shit then he may well panic. That's when you could end up in real trouble.

Mr. Vizzard:

Your questioning my professional credentials.

True. At first, when you did not understand the comparison between analysis/testing of aircraft and clinical trials. But I looked you up and your are legit.

A hint for the future: you can make people doubt you through your "I am smarter than you" arrogance. Because you are a pilot does not make you better at judging medical protocols, nor does it make you immune magical thinking. You are not unique, and there are a few mentioned here like this neuroscientist.

I am now of the opinion that your desperation is clouding your judgement. So I wish you the best, and hope that you would choose from a wide selection of cancer research organizations that employ many skilled researchers and actually publish their results instead of one lone maverick who has not published any results in thirty years. Two have been suggested to you, one in Australia and one in Houston.

By the way, since I was a minority among aerospace engineers my credentials were often questioned. Usually by those who had no clue that nonlinear second order multivariable differential equations exist, much less how to work with them. I was used to getting insults by those who have no idea how to pronounce Euler, nor know that there were several Bernoullis. I learned to ignore it over thirty years ago.

I am in no way desperate, that's why I made the comment earlier about CRM. Your assuming I'm desperate. Did you read the whole thread, including the treating clinic in London? Not setting any alarm bells off?

You can think what you like about my state of mind, but let me assure you I am perfectly in control. And i never said I was smarter than anyone. Certainly not amongst some of the boffins here (mean that nicely)

Have a look back a couple of posts, and let me know what you think. You keep ignoring things I'm posting.

Not getting involved in arguments about planes, of which I know nothing, but there are a couple of points that I thought should be made:

First, prn suggested, and Martin appeared to concur, that the way to do this is to try things and if they don't work, try something else. I am not in any medical field, but reading on this site I have seen numerous mentions of delayed responses to chemo or radiation. Thus, if you stop a treatment because "it isn't working", and you try some other treatment and "it works", you can't really be sure which, if either, actually produced the effect. That's one of the problems that researchers tackle with their careful experimental design. I bring this up just as a warning that the body is very complex and often you can't really tell what's working and what isn't.

Second, Martin asks why antineoplastons haven't been studied. Well, new treatments tend to be studied by companies that expect to make a profit on them. It's probably uncommon for a company to accrue thousands of patients for Phase II trials, but in at least one case it seems to have been done. Unfortunately it appears that the results in that case were so uniformly disappointing that the company never published its results or placed its products on the market.

I refer, of course, to antineoplastons. If Burzynski has not managed to prove any benefit despite thirty-five years of effort and thousands of patients, why exactly should anyone else suppose there was a benefit there to investigate?

+1 to Bruce Martin #126. I also recently read "Thinking Fast and Slow". Have also read a lot of other books in a similar genre (Gladwell, Pinker, Tavris, Schulz).... Which proves nothing other than I've read a lot of books.

Uh, huh. Sure, whatever you say. It is just that this reads as arrogant:

I have spent the last 15 years circumnavigating this planet as a captain, flying a beautiful aircraft quite possibly with some of you here down the back. For those of you about to embark on your holidays, you may be relieved to hear that if (for example) we have some major catastrophic failure mid Atlantic or way North over Canada then the rule book go’s out of the metaphorical window.

And exactly how many times have you had to throw out the rule book?

Actually, read what Opus wrote. That is more accurate. Foks like Orac and the researchers at MD Anderson Cancer are the skilled pilots. Burzynski is a former crop duster.

And as far as Apollo 13 goes, those astronauts were well trained, both as engineers and flight test pilots, they knew how to do the calculations. In that analogy, Burzynski would have been stowaway tourist who read Heinlein and imagined himself the hero.

Try some better reading: Emperor of All Maladies.

Sorry about that...

Not sure where "Child" came from. Should be "BS ChemE here - I can do this!"

But it kinda illustrates the point. Nothing worse than being blindsided with something out of your control. So, you scrabble around for something in your control to try and fix it.

Martin,

Still no one has twigged how I’m playing this! I find that worrying!

I'm guessing that you want to try trastuzumab, perhaps in combination with pertuzumab. If were in your position I might think that worth a try, though I think the enhanced T-cell trial I suggested looks more promising. Assuming I'm correct, what reasons did the UK oncologists give for not trying that?

Martin, one more caveat regarding "If it works it works, if not I’ve not lost anything." Having taken chemotherapy medications at all, let alone off-label, is often enough to disqualify as a suitable subject in other clinical trials. This has happened to some of the patients who were receiving Burzynski's targeted-therapy-for-dummies treatments, who were justifiably upset that they had never been warned of this possibility. In such a case if it it turns out not to work you will have lost something--the opportunity to enroll in a trial that might have been beneficial.

Chris, you misunderstand my use of the English language, lets just leave it at that. Design and testing for safety different than operating in certain circumstances. I didn't realise the Apollo guys were involved in the design and testing of the machine as well. Not what it was designed to do, what it can do! I think that line made it into the film.

Krebiozen:- It is so very basically simplistic. All I have heard on here is "people go there who are desperate". Do I sound desperate? I may in the future be desperate, however being from the UK and having basically having an unlimited budget (not that helps one scrap) where do you think I'll be getting treatment?

Actually, the Apollo astronauts did have some input, especially after the Apollo 1 fire. Which is why they knew what was on that craft. The important thing is that they had the engineering skills to do the fixes, and knew how the equipment worked. Plus they knew how to do the orbital calculations.

Plus they had military backgrounds and NASA training includes all sorts of scenarios. You should check out some of the training exhibits at NASA. Those are actually more interesting than the movie. (it is at this point where the resident NASA buff, Calli Arcale, needs to chime in)

Ugh, I am sleepy, "orbital calculations" should be re-entry calculations, they had to hit the atmosphere at a certain angle.

He's still sending ANP to patients who were already on treatment. There are no new patients on it.

Recommended reading on NASA. The first 3 provide special insight into safety, testing, and training.
Flight, Chris Craft
Failure Is Not An Option, Gene Kranz
Apollo 13, Jim Lovell/Jeffrey Kluger
For more information on the Apollo program, see Man on the Moon, Andrew Chaikin
My Gemini info comes from Gus Grissom’s book; for Mercury and prior Tom Wolfe’s the Right Stuff
Sorry about no links - I'm actually looking at that bookshelf (and no, that's a complete list of the books)

If it's going to go this way, I feel obligated to put in a recommendation for E. Myles Standish, long the steward of the JPL ephemerides.

Chris:

There is a very important reason why a jetliner’s tires are not filled with air.

Do tell, because actually jetliner's tires *are* filled with air. ;-) You're probably thinking that they'd explode at high altitude, but actually, even the Space Shuttle had air-filled tires. Air-filled tires work really well, and honestly, something pressurized to 300 PSI at the 14 PSI of sea level is not going to mind the outside environment dropping down a few PSI. Even dropping to vacuum is just not significant at that point.

Regarding Apollo, yes the astronauts were involved in the engineering of the spacecraft. The idea was that in addition to giving them important familiarity at deep levels (though not as exhaustive as you may be thinking; some things you don't learn until after the engineering is over, which I'll get to in a minute), it would also enable them to provide essential input on human interface issues and also make safety a far more personal thing. It worked. It also helped that nearly all of them were test pilots, and that is also a job that requires a bit of an engineering background, at least if you want to do it really well, and of course these were the best of the best.

Now, this is not to say they could solve all problems themselves. They were trained on navigation, and even carried that quaint old navigational aid, the sextant. (And used it, particularly on Apollo 13, where it was used to plot out lines on the window that could be used as aids to the pilot conducting the engine burns.) But they had a lot of help from the ground, which could simulate things for them. It was folks working on the ground, including astronauts, who worked out the precise sequence of events needed to revive the Command Module without draining its meager battery reserves prior to reentry and leaving it unable to steer the reentry within the tight envelope of safety. And it was folks on the ground who worked out the CO2 scrubber kludge. And then there's a more famous example still....

Apollo 11. As the LM descended to the lunar surface for the very first time, and the world watched breathlessly, several things happened. The first thing was that Armstrong, one of the world's great pilots, had already noticed that their retrofire came slightly late, and so they'd overshoot the landing site. Not a huge problem . . . yet. Then they noticed their velocity was wrong, so they corrected that. And then they got a 1202 alarm, and then immediately a 1201. These are computer codes; they meant the computer was being overloaded. Armstrong and Aldrin had no idea what to do; Flight (Gene Kranz) had no idea what to do; CAPCOM (astronaut Charlie Duke) was freaking out . . . but the guidance officer knew, because he'd seen this happen once before during a training simulation. Only once. But he knew what it meant, and more to the point he knew it was a spurious indication. They were experiencing an unexpecting timing issue due to the phasing of the radar pulses used to measure their altitude. GUIDO knew that if the messages didn't come up again, they'd be fine, so with moments to spare before an abort would be commanded, he urged Flight to press on. Flight accepted his call, CAPCOM passed it along, and they kept going. Then the next big deal -- as a result of the first big deal, Armstrong could see they weren't going to get the nice smooth landing area that had been planned. It was a boulder field. So he took over and directed them downrange, concentrating hard, too hard to explain this to the ground or even his copilot. The LM was not an easy vehicle to fly. CAPCOM started reading off the number of seconds remaining in the fuel before abort would become impossible; they were only able to bring 120 seconds worth of extra fuel, so the atmosphere in MCC was doubtless very tense. Armstrong brought her down safely with just 18 seconds of margin left; CAPCOM famously radioed up that "you've got a bunch of guys about to turn blue down here."

So the Apollo missions had plenty of examples of quick thinking by astronauts, both on the ground and in the vehicle, and by non-astronaut flight controllers. But that quick thinking wasn't just guesswork; they were based upon exhaustive work

There have been lots of other close calls in spaceflight, but that was the most widely broadcast one. ;-) And there have been calls made where to this day nobody knows whether it was the right call, and calls that ended up disastrously wrong. But I like the stories of clever saves much better. ;-)

Just for fun, here's Akin's final Law of Spacecraft Design:
"Space is a completely unforgiving environment. If you screw up the engineering, somebody dies (and there's no partial credit because most of the analysis was right...)"

Okay, I was wrong. I was told they are filled with nitrogen to prevent fire on landing. Lots of heat, which combined with oxygen and rubber is bad news.

And, I knew Calli Arcale would have the goods!

Wait, I am not wrong:
http://www.b737.org.uk/landinggear.htm#Tyres

Chemmomo, here are a couple of other good books about some of the hidden history of NASA:
The Mercury 13 : the untold story of thirteen American women and the dream of space, by Martha Ackmann
and
Promised the moon : the untold story of the first women in the space race by Stephanie Nolen

I use the library, so I keep a record of what I check out and read on a spreadsheet. It helps me remember, and keeps me from checking out a book twice. Like the book above those, Astro Turf: the private life of rocket science. It had such an impact on me that I read it twice, and still can't quite remember it (I believe it was the author's relationship with her father).

Why are we discussing the design/piloting of aircraft on this thread? I believe that Martin Vizzard first brought up his job as a pilot and his belief that the knowledge he has about aircraft should serve him well, as he investigates treatments for his brain cancer.

Here's the deal Martin. None of you book-learning, none of your training...and none of your work experiences qualifies you as "an expert" in cancer treatment. And, IMHO, were it not for the fact that you have been diagnosed with a brain tumor, your utterly off-topic, thread derailing statements, would meet with more opposition from other posters here.

(hint) I am a retired public health nurse-epidemiologist with a huge knowledge base about communicable diseases, immunology and vaccines. I readily comment about my field of science, but rarely comment about chemotherapeutic cancer treatments. I leave that to the experts (Orac and other posters who are doctors and scientists involved in cancer treatments).

In spite of your first post upthread which slammed Orac and others who comment here, Orac did provide you with the name of a surgeon in Australia who has successfully treated some people who have been diagnosed with the cancer you have been diagnosed with.

May I make a suggestion Martin, that you take some time to read the comments and the links to other blogs that have been provided to you...before you post more off-topic comments.

We all have great empathy for you and your situation.

Um, kind of my fault. Sorry.

I kind of thought that he might actually appreciate all of the analysis and testing that goes into the machine that is his "office." And compare it to the lack of analysis and testing done by Burzynski.

@ Chris: IANA psychologist, but I think Martin is using some defense mechanisms and discussing extraneous topics, because at this time, he needs to focus away from the serious cancer that he has been diagnosed with....a very natural reaction.

I certainly did not mean to chastise you or Martin for your comments, but I have seen patients and people who are close to me, engage in elements of intellectualization to avoid thinking about the difficulty road ahead and their possible demise from their illness.

Chris, I do have Ackman's book, and I'm adding the other two to my summer reading list. Thank for you this and all other great suggestions you've given me over the last few years.

I do visit the library regularly, but for some topics I like having the actual book on hand.

Chemmomo, I have been known to actually buy a book after checking it out of the library. I actually did that yesterday with a book about local city stairway hikes (I was surprised to learn that Los Angeles had more public stairways than San Francisco!).

Another book on a similar vein is Managing Martians by Donna Shirley. It is her autobiography. It sadly does not include her accepting a job at Paul Allen's Science Fiction Museum to be near her daughter.

(Um, I feel embarrassed that you look at me for book suggestions. Some I have gotten from the JREF forum "What are you reading" thread.)

Thanks for the online assessment lilady but I can assure you I am perfectly aware of my situation. As I said earlier although disappointed its an early "clock out" for me any one if us here may experience that today crossing the road or in our cars. Referring to something you are familiar with and drawing parallels is not uncommon ref my job. Also i thanked Orac for the information by the way, AND have acted on it. I suppose I need to tell you the secretary is Scottish/British as well in advance of being quizzed to see if I'm being truthful.

Calli's post is great. Putting it into my example then, I was told "standard treatment" Themozolomide and Radiation based on testing trials etc which I am sure took many years and is safe. 3-6 months extra. Going back to Calli's post the Apollo guys built the scrubber! Was that standard, tested checked, double checked? Did it work? Yes.
Is my "scrubber" out there? Who knows, but I certainly intend to look! I'm trying off label medication to see if it works "for me". However I think the problem here is who I have selected to do that.

lilady:

Why are we discussing the design/piloting of aircraft on this thread?

Because it's cool. ;-)

Chris:
I misunderstood what you were implying about aircraft tires. It's true they aren't always filled with breathable air, but they are filled with gas, and that's what I thought you were saying. I've run into a lot of people who think tires would have to be solid to not explode, and thought that was what you were getting at. (Admittedly, these were often Apollo hoax proponents, who thought the LRV wouldn't work on the Moon because of exploding tires, which betrays a rather serious depth of misunderstanding.)

Martin:
Actually, yes, the scrubber was checked! The movie "Apollo 13" does a fair job of showing how rapidly the engineers in Houston devised the kludge and documented it, but because of time contraints of course they can't show you everything. NASA is a stickler for details. (Believe me, I've worked with them!) They don't just rapid prototype something that people's lives will depend upon. Overnight, they not only devised the scrubber adapter built from stuff in the launch manifest, they also tested it, documented it, and sent up stepwise instructions for constructing it. In a high-maturity organization, once you get into the habit of doing that, it doesn't really take that long. Something that always puzzles me when I meet cowboy engineers who insist that process will just slow them down unacceptably. I tell them that hey, if NASA engineers could design, build, test, and document a CO2 scrubber adapter made from common household items *overnight*, you can damn well put in a comment when you check in your code changes. ;-)

"Overnight, they not only devised the scrubber adapter built from stuff in the launch manifest, they also tested it, documented it, and sent up stepwise instructions for constructing it."

Yes and it was marvellous work. But from what you have said not at the original design stage. Probably because they did not expect the event. It's not the scrubber, it's the theory that it was not done at design and test but ultimately successfully done when needed. If they hadn't needed it they wouldn't have done it.

I'm mindful this is way off topic. Just a reminder of what I was trying to suggest to Chris yesterday that yes new medicines and drugs need testing but further down the road different applications are found. Hence use off label, which is what I'm doing. I cannot add any further comment or my wife's going to string me up!

No, not at the original design stage, of course. ;-) It was designed to fit the CM, not the LM. And I doubt very much they went to the trouble of giving the adapter kit a part number and bill of materials and everything. But I am still in awe of what those guys did.

There was one thing the movie did a great job of showing the testing effort for: the Command Module restart procedure. They ran it over and over and over and over again, because they did not want to give an untested startup procedure to the astronauts -- the stakes were far too high.

That's another example of where the comparison to cancer treatment breaks down, really. Modifying the CO2 scrubber was a matter of immediate life-and-death, with a very real and very imminent deadline. The CM restart procedure had a bit more time, but was more difficult to work out. It's deadline was fixed by Newton; they would reenter at exactly the same time no matter what they did, but the work being done in the simulator would determine whether or not they'd survive the experience. Either they'd have enough electrical power, or they would not. It was the 11th hour when they finally worked the precise sequence that would squeeze *just* enough power out of the battery to do what needed to be done.

Cancer is different. If you're to the point where a decision made today will decide if you're alive tomorrow, either the decision is going to involve surgery or the thing that's going to kill you isn't cancer. If you're still at the point where chemotherapy is relevant, then you're probably not in danger of dying tomorrow. You have a little more time. And there is also the matter that the human body is not as well known as the Apollo spacecraft. Finding the ideal bootup sequence for the command module was a deterministic problem -- you have X amount of power, you need this set of functions available, you know how much power each of those consumes . . . there is a finite and comparatively small number of options to try out. In a pinch, you could theoretically brute force the solution. And you have simulators. With cancer, there is no simulator, it isn't deterministic (not the way a computer is, anyway, being made of logic gates), and the set of possible course of action is nearly infinite. So what do you do? This is a more difficult question than any which the flight controllers of Apollo 13 faced. At least, until they themselves got cancer. Jack Swigert, CM pilot and replacement for Ken Mattingly. (The prime crew had been exposed to rubella, and Mattingly was not immune. In case of him developing rubella in flight, he was pulled and Swigert flew instead.) He died of cancer in 1982.

One last aeronautical reference/question:

When the squadron of clues flew over Martin's head was it
a. going less than Mach 1
b. flying at exactly Mach 1
c. exceeding Mach 1

Martin, I hope things go well for you. However, I also hope that doing well is not dependent on your ability to make well-reasoned decisions when faced with cancer. Someday, if all goes well, you'll look back at this thread and shake your head in the realization that it was not your finest moment.

I truly hope that you have years - or decades! - to chuckle over it.

@ Martin: When you came here with statements about Burzynski's *treatment*, you stated that we were unaware that Dr. B. is not, using antineoplaston for patients...as *if* we didn't know that. It was pointed out to you that he hasn't prescribed antineoplaston for new patients, since January 2013, but is still prescribing and dispensing them to patients who had started that treatment prior to that date. He is using a proprietary drug in its place and *traditional* anticancer drugs for his supposed "gene targeted therapies"....a virtual kitchen sinkful of them.

I provided a link to the Texas Medical Board and the SOAH cases against him that describe the consequences of Burzynski, an untrained oncologist, prescribing multiple *traditional* drugs and off label *traditional* drugs at jacked up costs to patients.

Let me repeat my statements.

Off label prescribing is used quite frequently by cancer specialists in the USA; Dr. Burzynski is not an oncologist....

http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes…

"...Is off-label drug use legal?

The off-label use of FDA-approved drugs is not regulated, but it is legal in the United States and many other countries. An exception to this is the use of some controlled substances, such as opioids (pain medicines like morphine and fentanyl). These drugs cannot legally be prescribed in the United States except for approved purposes.

While it’s legal for doctors to use drugs off label, it’s not legal for drug companies to market their drugs for off-label uses. Off-label marketing is very different from off-label use."

and,

"...How common is off-label drug use?

Little information is available on off-label prescribing in oncology in the US. Off-label use can vary greatly from one doctor to another, depending on doctors’ preferences, knowledge, and past patient experiences. A 2008 study found that 8 out of 10 cancer doctors surveyed had used drugs off-label. Off-label drug use is well-documented and very common in certain settings, such as pediatrics and HIV/AIDS care.

Studies have reported that about half of the chemotherapy drugs used are given for conditions not listed on the FDA-approved drug label. In fact, the National Cancer Institute (NCI) has stated, “Frequently the standard of care for a particular type or stage of cancer involves the off-label use of one or more drugs...."

Oncologists have hospital affiliations, with hospitals; Burzynski has no affiliations.

Dr. B. is clueless about interactions and monitoring patients for those interactions with the drugs he prescribes, as evidenced by the frequency of his patients ending up in hospitals with hypernatremia and other serious side effects.

Dr. Burzynski has a history of lying to his patients about the efficacy of his *treatments*, by falsely interpreting the results of brain scans...thus continuing to screw patients out of their financial resources...and raising false hopes for the patient and the patient's family (See all the links provided to you by other posters and see Orac's prior posts).

So yes, I am concerned when patients chose the Burzynski clinic, rather than a cancer treatment center with trained oncologists.

I've been waiting for Narad to provide this link...he posted it on Orac's NSSOB. Here, we have a *picture* of how Stan sucks patients in...and the sheer crazy megalomania, when he is interviewed about his *treatments*:

http://www.houstonpress.com/2009-01-01/news/cancer-doctor-stanislaw-bur…

BTW, What about those supposed case studies that Stan submitted to medical journals...which were rejected because he didn't provide "scans"? How did Stan happen to omit those *scans*?

lilady,

Coincidentally, I posted the link on Josephine Jones's site yesterday, blockquoting the paragraph where he calls the reporter "a little man," and "a sh!t" with a "liitle brain" and where he claims he' might win a Nobel Prize "in three years." (The interview was done back in 2008, so we're five years later and still no closer to him getting that Nobel Prize. I'm not holding my breath...) Oh, and the classic "I came to this country with $15 in my pocket..."

Funny how five years have passed and nothing has changed: he's no further along with the clinical trials, the FDA approval,etc.

@Chris, WRT homemade aircraft - my late father-in-law was an engineer. He was a bit crazy in the Fifties, he was a speedway racer, did the wall of death on his Triumph, but he and his friends were mostly obsessed with flying.

Their gang had four members; all scarily intelligent single blokes, with access to the sort of stuff that would get them arrested today. Dad had been the artillery engineer on his base during national service, two of his friends had been engineers in the RAF, and the final one had been involved in designing some sort of defence barriers I believe.

Anyway, their dream was of personal flight. You know the sort of thing, jet-propulsion, powered hanggliders, and their favourite? The gyrocopter. The personal, one-man, lightweight gyrocopter.

First flight was to be after two years of tweaking by B, the scary genius of the group, a complete savant who could barely speak to humans, had obsessive rituals, and liked to dismantle guns and explosives at his mother's kitchen table.

They used to go onto the local airfield and test their bizarre flying machines. Out of the four of them B was the only one not maimed in their experiments. A certain person shot himself through his own scrotum by accident...

So the big day came, they gathered at the airfield, and watched as B pulled off a perfect flight and landing. It was running really hot, but buoyed by the first success he attempted take-off again. It flew alright, fast, high, and straight into the side of a hangar. B's body was incinerated, two local airfield staff were burned trying to put the fire out.

Dad and the other two burned all of the plans, he even sold his bikes, settled down and married, and became a complete speedphobe.

He often used to wonder how the world might have looked if he and B had perfected the design, and gone on to make it a mass market device,

Can you imagine airfields letting young lads play about there with fuel, explosives and bits of sheet metal now?

They'd be in Gitmo!

Something that always puzzles me when I meet cowboy engineers who insist that process will just slow them down unacceptably. I tell them that hey, if NASA engineers could design, build, test, and document a CO2 scrubber adapter made from common household items *overnight*, you can damn well put in a comment when you check in your code changes.

As a technical writer, this, this, this, this, this.

Please specify a Ship To address for your internets, and tick the box to receive an optional side of fries.

As someone who lives and dies by making information available to others for their use (and hopefully not abuse), Burzynski's lack of publications distresses me, and makes me on the face of it pretty near convinced there's no there there, never mind the whole scientific plausibility issue. Unfortunately, he manages to make a pretty good living off the gullible rubes, so, short of legal action, he has no incentive to change.

Unfortunately, he manages to make a pretty good living off the gullible rubes, so, short of legal action, he has no incentive to change.

Indeed--at this point I don't see that he would have a lot to gain by publishing, even if the results do indicate efficacy.

- Don't forget to check the comments on Orac's next page Odds and ends left over after the Panorama Burzynski Clinic report
- I added some commenst for Martin there

Martin,

The patient I mentioned has since died. I have given Orac the cell phone number of a friend of hers who was on the phone with her during the incident at the Burzynski Clinic. Hopefully you will be hearing from him soon.

Good luck.

This page is now top of the google rankings for Dr Stan.

I thnk that should help to counter the new film...

I'm not sure what the hell is going on here or why you people are so against Burzinsky. Cancer kills people. Not Burzinsky. Burzinsky's treatments are a tiny fraction of the price of the extremely toxic and statistically less effective radiation and chemo therapies currently accepted. A friend of mine with a rare form of brain cancer ended up paying over 1.2 million for a combination of surgery, radiation and chemo. Her insurance only covered about half so she and her family were out of pocket over $600,000. She died from liver failure induced by the chemo.

The real question is, do you believe in corruption? Do you believe that oil companies are involved in coverups? Well Pfizer, the top grossing drug company, profited 14.6 billion in 2012. I can promise you, big pharmaceutical companies control the FDA and pay big money to confuse the public. I see over and over, people on this blog stating that Burzinski's treatments are not effective. We'll guess what, they are in phase III of FDA testing which means they have been proven by the FDA to be both safe AND effective (phase I and II). If the FDA had something concrete on Brizinsky, why have they failed to convict him of any wrong doing after taking him to court five times?

Brizinsky is a victim, but the real victims are those who have been mislead or are unable to take advantage of brizinsky's breakthrough because of the FDA's global influence. Something to keep in mind... For you bloggers out there who are getting paid to bash Brizinsky, you could very well be killing every person you convince that Brizinsky is a quack.

Mr. Hubbard,

I am not being paid by big pharma to write these posts. I do it because I believe in what I'm doing.

Just so you know.

Orac

@Logan - does that word salad mean anything?

Ever read "The Other Burnzynski Patient Group?"

He's an extremely wealthy man, and yet all of those patients are dead.....care to explain why the Phase III study you mention hasn't accrued a single patient (in over a couple of years or more)?

Mr. Hubbard:

I’m not sure what the hell is going on here or why you people are so against Burzinsky. Cancer kills people</blockquote.
And Burzynski makes them die faster and in more pain. Perhaps you would know "the hell is going on here" if you had actually read the articles. At least you would have spelled the quack's name correctly.

And if you had actually read the articles you have known that your statement " We’ll guess what, they are in phase III of FDA testing " is false. A search at clinicaltrials for "Antineoplaston" and "phase 3" reveals exactly one study:
http://www.clinicaltrials.gov/ct2/show/NCT01260103?term=Antineoplaston+…

Where it says "This study is not yet open for participant recruitment. ", even though lower on the page it says it was supposed to start December 2011, over a year ago.

Blockquote fail, on the the first paragraph is supposed to be in italics.

@Logan Hubbard

they are in phase III of FDA testing which means they have been proven by the FDA to be both safe AND effective (phase I and II)

This is wrong. First off, the FDA does not "prove" anything. Second, Burzynski's nonsense is not in phase III trials, as shown by Chris. Third, drugs may make it through phase I and phase II trials and still fail in phase III.

If you believe that Burzynski is not a quack and that his treatments actually work, then pressure him to publish the results of his completed phase II trials. He has yet to do this. The only thing he has offered are case reports from selected cases, no controls, and enough room to suspect the results are due to previous conventional treatment or chance alone.

Pete Cohen, speaking on behalf of the clinic on BBC radio June 3 (the day of the Panorama debut, said he doubted the Phase III trial would ever begin, due to the high cost of running trials. Money that Burzysnki apparently just doesn't have.

It was supposed to have reached its midway point by 2013 according to the document Chris linked to. And yet they're still not even open.

Make that Primary Completion Date for the Phase IIITrial which is coming up Dec. 2013. Think they'll make it?

Logan Hubbard

Lets begin at the beginning shall we:

"I’m not sure what the hell is going on here or why you people are so against Burzinsky"

Well there is a search tool here and I advise you to use it with Burzysnki as the search term. You will then find out quickly why regulars here feel like they do and hopefully your efforts will supply you with enough knowledge to make meaningful comments here in future.

"Cancer kills people. Not Burzinsky"

A hint. In trying to develop a logical argument you need at least two propositions. "Heart attacks kill people, not my Dad" is not a logical defense of my Fathers character.

"A friend of mine"

Blah blah blah we have heard it all before. You are arguing from Anecdote. I See your Anecdote and raise you one. I know lots of people with Cancer. Hundreds in fact. A majority of them are in the US. None of them have spent anywhere near that sort of money not even those who took off label cutting edge pharmaceuticals and paid out of pocket. As for the fabled land of Oz we pay bugga all.

"She died from liver failure induced by the chemo."

Oh that's a no no around here. You cannot make a statement without offering some proof. If you can convince us that you were her treating physician then your statement may have some gravitas with us.

"The real question is, do you believe in corruption"

Typical loaded question. The inference is that if I believe in corruption that proves that company X is corrupt. For further proof of this corruption you pointed to their profits. Too many logical fallacies to even start adding them up here.

"I can promise you, big pharmaceutical companies control the FDA and pay big money to confuse the public" Ipse Dixit ...look it up

"Brizinsky is a victim"

Is this the same guy or one of Stans relatives that Lives in Brisbane? Your meaning of the word victim is something far removed from what I understand as being the definition, if indeed you are referring to Stan.

"For you bloggers out there who are getting paid to bash Brizinsky"

This is reserved for Orac then ? As this is not the blog of any minion here then I can just ignore that. Orac BTW does not require money, just a steady stream of electrons.

"you could very well be killing every person you convince that Brizinsky is a quack."

You base this in the fact you believe Stan to be the brave maverick doctor. However your statement contradicts itself especially if I can prove Stan is a quack.

Now Logan read a bit and next time try to present a cogent argument that we can follow and try to avoid getting myself playing logical fallacy bingo with your posts.

Well done Martin Vizzard....they tried to be negative...and you were having none of it Great.

What works, works....achievement is it's own chronicle....not the paper its written on
wish you a great recovery.

Sheila Jones: "What works, works….achievement is it’s own chronicle."

Well, we don't know if it works. Burzynski has not published any results, and he has thirty years of data. Perhaps you should go and offer to write up the results for all of those clinical trials. Or at least see why so few were completed.

In which the latest movie about Stanislaw Burzynski's "cancer cure" is reviewed...with Insolence

oracknows — Sun, 02 Jun 2013 22:08:08 +0000

In which the latest movie about Stanislaw Burzynski's "cancer cure" is reviewed...with Insolence

Well, I've finally seen it, and it was even worse than I had feared. One might even say that watching it was like repeatedly smacking my head into a brick wall. It felt so good when it finally stopped.

I'm referring, of course, to Eric Merola's latest cinematic "effort. Ever since it was revealed that ric Merola's planned to make a sequel to his 2010 propaganda "documentary" about Stanislaw Burzynski, Burzynski The Movie: Cancer Is Serious Business, whose rank stupidity provided me with copious blogging material, I've finally actually seen the finished product, such as it is. Of course, during the months between when Eric Merola first offered me an "opportunity" to appear in the sequel based on my intense criticism of Burzynski's science, abuse of the clinical trials process, and human subjects research ethics during the last 18 months or so, there has been intense speculation about what this movie would contain, particularly given how Merola's publicity campaign involved demonizing skeptics, now rechristened by Merola as "The Skeptics," a shadowy cabal of people apparently dedicated (according to Merola) to protecting big pharma and making sure that patients with deadly cancers don't have access to Burzynski's magic peptides, presumably cackling all the way to the bank to cash those big pharma checks. I suppose we're also twirling our moustaches as well, especially the women, who according to Merola probably have moustaches too.

The movie, Burzynski: Cancer Is A Serious Business, Part 2, was released to online sources on Saturday and will be released on DVD on July 1. As much as I detest Eric Merola and don't want him to profit from his deceptions, I also wanted to see what the finished product actually looked like. So I swallowed hard, paid, and watched. It was probably the worst $15 I ever spent, but at least it's tax-deductable for this blog. Of course, from my perspective, actually seeing the movie is almost anticlimactic, given that we've had detailed reports from screenings of the movie by skeptics (excuse me, Skeptics) who attended, replete with conspiracy mongering, repeating claims to the movie to an echo chamber, and even Fabio Lanzoni.

However, there are things one can't adequately evaluate using second hand reports. Moreover, it just so happens that tonight the BBC will be airing an episode of its long-running news series Panorama about Burzynski. The episode is entitled Cancer: Hope for Sale? Although I fear the producers falling into the trap of false balance, I've heard enough from my connections to suspect that Burzynski won't be happy at all about the story. After all, his minions have been preemptively attacking Panorama since Burzynski patients have let it be known that they had been interviewed for the report. Now, if we "Skeptics" were the all-powerful, overarching, nefarious force that Burzynski's acolytes paint us as, one might think that we had planned it this way, to have the BBC Panorama episode come out the Monday after the release of Eric Merola's movie. I'll let Eric Merola puzzle over that one. No doubt he'll build another one of his—shall we say?—imaginative conspiracy theories over this.

So what about the movie itself? First, let me point out that, after having seen the movie (which I will henceforth call "Burzynski II", to distinguish it from the first Burzynski movie, which I will call "Burzynski I"), there's nothing I would change in my original discussion of it. Burzynski II really is just like Burzynski I, only more so. I refer you to the link for my discussion of many of the problems with the movie. Here I will concentrate mainly on issues that I haven't discussed before, because actually seeing Burzynski II was a revelation. (Yes, I put that sentence there on purpose, Eric Merola; quote mine it if you have the cojones!) First, as a movie, Burzynski II is at least as bad as Burzynski I. No, it's even worse.The narration is done by the same creepy-sounding narrator and recorded in a way that sounds like a low bit rate MP3. (Maybe it is a crappy 32 kbps MP3.) certain medical terms are mispronounced; there are lots of errors; and Merola demonstrates the same tendency to switch back and forth between camera angles in which the subjects of his interviews are looking at the camera to angles where they are not. The effect, I'm guessing, was intended to be edgy. What it ended up being (to me, at least) was irritating as hell, like a squirrel with ADHD. Finally, the music and cheesy graphics are also much the same as they were in Burzynski I, although slightly better done, like putting a coat of glossy paint on a turd.

The other thing that I wasn't prepared for was just how unrelenting Burzynski II was in its propaganda. Burzynski I was one-sided to the point of sheer ridiculousness, but Burzynski II takes that ridiculousness to the next level, much as each sequel to the original Transformers or The Fast and the Furious movies tends to be bigger, louder, and dumber than its predecessor. This is not a good thing. Unfortunately, in Burzynski II, the messages are even less subtle (if that were possible) than in Burzynski I. Whereas Burzynski I hit you over the head with its messages repeatedly if they were a series of 2 x 4s, in Burzynski II the 2 x 4s have bricks attached to their ends. No doubt Merola's intent in doing so is to have the same effect on your brain's rational processes as that of the man wielding the 2 x 4s is.

Burzynski II does have a slightly different structure than Burzynski I, however, although overall it's very similar in many ways. Burzynski I spent the first 30 minutes or so discussing patient anecdotes to "prove antineoplastons work," and then spent most of its last hour or so lambasting the FDA, the Texas Medical Board, and big pharma. Burzynski II, on the other hand, although it begins similarly with some text declaring just how incredibly awesome Burzynski is and how incredibly evil the FDA, the Texas Medical Board, and big pharma are, followed by a montage of news and TV segments extolling Burzynski and/or attacking his critics, is a bit more free-form, interspersing patient anecdotes with attacks on big pharma, plus a truly bizarre segment attacking "The Skeptics" near the end. I've already dealt with at least four of these anecdotes before, those of Laura Hymas (whose anecdote is the main one), Hannah Bradley (who gets surprisingly little screen time), Tori Moreno, and Amelia Saunders (whose anecdote is perhaps the most heart-wrenching if you know what happened—more on that later); so I won't dwell on these anecdotes again here except for aspects that I haven't discussed before that seeing the actual finished movie bears light on.

An ethical conundrum dealt with correctly

One of the things I wondered about last time was a segment in the movie in which Laura and and her fiancé Ben Hymas, having decided to go to the Burzynski Clinic, met with Ms. Hymas' NHS oncologist to try to find out if the NHS would continue to cover her MRI scans, blood tests, and other medical "necessities" once she returned home to the U.K. Ms. Hymas, as you might recall, is a young woman who developed a brain tumor, underwent conventional therapy that only had limited success in slowing the tumor, and ultimately ended up deciding to go to the Burzynski Clinic. It is revealed in the movie that Ben Hymas had decided to record the conversation with the oncologist, and Eric Merola decided to include the recording in his movie. The results are not exactly what Merola intended. Merola clearly intended it to be damning of the NHS; in reality what I saw was a clinician desperately trying to do the right thing and dissuade Laura from a course of action that he considered to have almost no likelihood of helping. For instance, when Ms. Hymas says that the oncologist (who is not named) would not treat her if she went to Burzynski, here's what he said:

Oh, no, no, no, no, no. Let's make it very clear. Dr. Burzynski is a person who provides "private care," in a non-conventional way—that we do not quite understand, or would condone.

Later, he says:

It's not just his antineoplaston approach, which is controversial to say the least. I've had patients there who got cocktails of medications that could have a rationale to work in brain tumor patients but have never been tried and tested in this excessive combination.

The oncologist tries to point out that Burzynski's clinical trials are not supported by the NHS or his hospital and explains that Ms. Hymas can't expect the NHS to pick up the tab for tests required by Burzynski for a clinical trial not sanctioned by the NHS. He goes on to explain how the trial is not ethically approved at any NHS hospital and that because he's not convinced that this is a useful therapy he can't treat her according to Burzynski's protocol and that he can't provide care to her as long as she is under Burzynski's care.

And here's where the FDA's failure has put doctors like this one in a bad position. Ms. Hymas' mother keeps harping on how if the FDA approved these trials they must be legitimate and can't be unethical. You know and I know that that's not necessarily true (and, in fact, I've recently learned a lot about how and why these trials were originally approved by the FDA despite the lack of adequate preclinical evidence, but that's a topic for another post). Another doctor at the NHS also apparently did agree to such an arrangement, which also put this poor oncologist on the spot in talking with the Hymas. Still, in the end, this oncologist said point blank that he does not feel it would be right of him to take instructions or even advice from Burzynski for what is and is not required, although he did appear to indicate a receptiveness to ordering Laura's scans.

I keep thinking of what I would do if I were in that oncologist's shoes. I don't know. I do find it despicable that Merola would use an apparently secret recording of a private conversation and put it in a public movie. This should serve as a warning to all cancer doctors: If you have a Burzynski patient, expect to be taped and conduct yourself as though your words could show up in the next Merola infomercial.

The patients again and an ethical conundrum dealt with incorrectly

To the old familiar anecdotes are added new ones. I'm going to start with the one that is both new to me and most horrifying to me as a cancer surgeon, even more so than the cases I've discussed before, such as Amelia Saunders or Hannah Bradley. I'm referring to Chris Onuekwusi, a man who was diagnosed with stage I colon cancer. Yes, you read that right. I'm referring to a patient with a stage I colon cancer. You should know that stage I colorectal cancer is very, very treatable. Resecting the involved segment of the colon or rectum containing the cancer has a high probability of curing it. Assuming it really is stage I, chemotherapy might not even be needed. (We don't know for sure that Onuekwusi's cancer really was stage I, because often surgeons don't know the full stage of colorectal cancer until after surgery.) Instead of undergoing straightforward surgery that we know to have a high probability of success (which, I'll also point out, can be done these days through minimally invasive laparoscopic techniques), Onuekwusi balked, as described in more detail than in the movie in this article on the Burzynski Patient Group website. He had even gone for a second opinion at one of the leading cancer centers in the world, the University of Texas M.D. Anderson Cancer Center, where the surgeon told him the same thing. He needed surgery first.

So what did Burzynski recommend instead of surgery? He recommended a cocktail of three drugs given off-label: Zolinza, Xeloda, and Avastin. Zolinza is vorinostat, a histone deacetylase inhibitor; Xeloda is capecitabine, which is a prodrug for 5-fluorouracil (5-FU), a pyrimidine analog that inhibits the enzyme thymidylate synthetase and thereby inhibits DNA synthesis to toxic effect in rapidly dividing cells; and Avastin is bevacizumab, a humanized monoclonal antibody directed against vascular endothelial growth factor-A (VEGF-A). As I described in a previous post about Burzynski's "personalized, gene-targeted cancer therapy," apparently Burzynski sent Onuekwusi's tumor to Caris for testing. Caris generated a report, as it always does, and Burzynski came up with a witches' brew of new expensive targeted agents, all said to be "off-label." Well, not exactly. One of these drugs is just an old chemotherapy drug in a new form. Xeloda is, in essence, 5-FU, a chemotherapeutic drug that has been used to treat colorectal cancer, both as adjuvant chemotherapy and first-line therapy for metastatic disease, for over 40 years. There's nothing really "targeted" about the drug except that it inhibits an enzyme, the way that many drugs do and have been known to do for decades. The advantage of Xeloda is that it can be administered orally, which is a good thing. Similarly, Avastin, although relatively new, is also commonly used for colorectal cancer, albeit usually for metastatic disease and not as adjuvant chemotherapy. That leaves Zolinza, which is an HDAC inhibitor used to treat cutaneous T cell lymphoma. One wonders if Burzynski included a second HDAC inhibitor, his second favorite drug after antineoplastons, sodium phenylbutyrate.

So why was I so horrified by this anecdote compared to others? The reason is simple. Onuekwusi appears to have had a relatively easily curable cancer with standard surgery, and that surgery is usually not particularly morbid, given that the scans shown in the movie indicated that it was a right colon lesion, as opposed to a sigmoid or rectal lesion. It is, in my opinion, medical malpractice to treat such a patient first with chemotherapy (and yes, what Onuekwusi received was chemotherapy, as Xeloda is basically an oral form of one of the workhorses of chemotherapeutic drugs, 5-FU). We know that chemotherapy usually doesn't do a lot of good as primary therapy of solid tumors like colorectal cancers, although as adjuvant therapy it is quite effective at decreasing the risk of recurrence after surgery. In contrast, we know that surgery is highly effective for stage I colorectal cancer. We even know that if this really were stage I colorectal cancer, Onuekwusi wouldn't even have even needed chemotherapy! Surgery alone is the treatment of choice. So, by Merola's own description, what Burzynski did was to administer a toxic form of treatment that was probably not needed (chemotherapy) using drugs that were not approved for that indication, and apparently didn't insist that the patient needed surgery. Now, it's possible that the combination of drugs did eliminate the tumor. It's also possible that the tumor was very small and completely removed with colonoscopic biopsy, leaving an inflammatory reaction behind to be imaged on the PET-CT images shown in the movie, a reaction that subsided over three months. Either way, Onuekwusi (and Burzynski) might have gotten lucky. But they both took an enormous gamble that could well have cost Onuekwusi his life. In my opinion, Burzynski deserves to have his medical license taken away on the basis of how he treated Chris Onuekwusi alone, not even considering all the other dubious things he's done.

The rest of the "new" cases (i.e., cases I hadn't been familiar with) followed a similar pattern to cases I've discussed before, wherein it's impossible to tell whether the patient's good fortune is due to Burzynski's treatment or not. That includes the patients with brainstem gliomas. We are told repeatedly by the narrator that spontaneous remission of a brainstem glioma has never been documented in the medical literature, despite an exhaustive search. All I can say is that Merola and Burzynski must not have searched very hard, because I quickly found a few, for instance, of pontine glioma (and two more)and a brainstem cavernoma. Remember Tori Moreno? She is a teenager who was diagnosed with a brainstem glioma as a neonate who features prominently in this film as a Burzynski success story. Despite what Tori's father and Eric Merola claim, it's quite possible that she underwent a spontaneous remission. True, such remissions are rare, but it's not correct to say that they never happen. Truly, Merola's "exhaustive" research skills need some upgrading. It took me two minutes to find those articles. No, I'm not saying that that's definitely what happened; I'm merely pointing out that it could have happened, which is why clinical trials are so important.

Among the "new" patients is also a woman named Patricia Clarkson with multiple myeloma, who is filmed with her husband in front of large windows with the sun shining in. Yes, they are mostly backlit; one would think that Merola could have found a better, less distracting room to interview them in. Be that as it may, the segment is introduced with in essence a rant about the FDA requiring that patient fail standard therapy before they can have antineoplastons. That is, of course, a standard requirement for new cancer drugs because on an ethical basis doctors can't administer experimental therapy whose efficacy is unknown if there are treatments whose efficacy is known. Another common design for a clinical trial is to compare standard of care treatment against standard of care treatment plus the experimental therapy.

This segment is introduced by a black screen of white text that says:

Even if the FDA's prerequisite if fulfilled, the FDA holds full dictatorial rights to refuse patients' access to antineoplastons if they choose.

Merola says that as if it were a bad thing. It's a rule designed to protect patients. Merola makes it sound as though this is an arbitrary rule designed solely to keep patients from getting antineoplastons. Mr. Clarkson, of course, rails against the FDA for making it so difficult for his wife to be treated with antineoplastons. What is not shown is that Burzynski did treat her with sodium phenylbutyrate, the orphan drug that is a prodrug for one antineoplaston. As is the case with nearly every Burzynski testimonial, it's impossible to tell whether Burzynski's treatment has done any good due to confounding factors. In Clarkson's case, multiple myeloma tends to be a disease that has a highly variable clinical course and can take years before it can kill, sometimes several years. In other words, its survival curve tends to have a long tail. Mrs. Clarkson was only diagnosed in 2011 It's also a drug that almost always seems to be included with Burzynski's "personalized gene-targeted cancer therapy regimens.

Seeing is believing?

I can't do a review of this movie without revisiting stories we've seen before. Even though I've extensively covered the cases of Laura Hymas and Amelia Saunders before, to me seeing is knowing just how intellectually dishonest Eric Merola is. For instance, seeing the Saunders family, rather than just hearing about them from second hand reports, was truly heart wrenching. They are such a caring family who were so desperate to do anything for their daughter. Worse, however, is the way that Merola makes it sound as though the reason that Amelia Saunders ultimately did not survive her tumor is because her parents decided to take her off the antineoplaston therapy. I've discussed this issue before several times. Briefly, in November 2012 it was noted that Amelia's tumor had started to develop cystic regions. Burzynski told the Saunders that this was evidence that the tumor was dying. As I pointed out at the time, this was almost certainly nothing more than the tumor outgrowing its blood supply and developing necrosis in the center, not evidence of antitumor effect. Sadly, two weeks later, pediatric oncologists at the Great Ormond Street Hospital told the Saunders the same thing and that they thought Amelia was in the end stage of her disease. It was at that point that the Saunders made the completely reasonable decision to take Amelia off the antineoplastons.

This is how Merola describes it:

Two months after this interview, Amelia's brain tumor began to swell and fill with fluid. There was confusion and disagreement between their local radiologists and the radiologists in Houston about why this was happening—so her parents decided to discontinue antineoplaston therapy. Amelia passed away with her parents at her side on January 6, 2013.

Merola then opines:

Brainstem glioma is as rare as it is deadly. Approximately 500 children a year in the United States and 40 a year in England are diagnosed with it. An exhaustive search spanning 27 years of all available medical literature worldwide reveals the absence of any patient ever being cured or living five years after diagnosis.

As I said before, Merola's research skills leave much to be desired. True, five year survival is very uncommon, but not so uncommon that it can't be studied. Similarly, as I pointed out before, it's not true that spontaneous remission of brainstem tumors in children "never happens." It's rare, but it does happen.

Seeing The Skeptics

Eric Merola's attacks on skeptics have been a frequent topic in the skeptical blogosphere, in particular his misinformation and paranoid conspiracy mongering. He goes out of his way to portray us as either incredibly misguided ("they mean good but do evil!"), hopelessly in the pay of big pharma, or so evil that we, as I put it before, cackle with glee as we condemn cancer patients to certain death by taking their antineoplastons away. It's so heavy handed that even Leni Reifenstahl would turn away in embarrassment if she were alive today and subjected to a viewing. (Some of that would also be due to her recognition of Eric Merola as a talentless hack when it comes to being a filmmaker.)

Particularly seemingly damning are a series of Tweets flashed on the screen saying things like the Hope for Laura fund (the fund set up by Laura Hymas to pay for her treatment at the Burzynski Clinic) "appears to be just a money laundry for a lying quack fraud" and "when Laura dies #Burzynski will just move on to his next mark if she doesn't run out of money first." I think I know whose Tweets these were. In fact, I'm sure I know whose Tweets these were, and all I can say to that person is this: Zip it. Stop it. Put a sock in it. In fact, if I'm correct about whose Tweets these are I think I have already done so on Twitter when I've seen this person getting too close to attacking cancer patients. Still, as utterly insensitive and "dickish" as those Tweets were, they do not represent the majority of skeptics, but rather a few jerks. However, we as skeptics need to remember that a few jerks perceived (or painted) as attacking cancer patients can do immeasurable damage to the cause of science-based medicine. So if you're one of those skeptics making comments like that, knock it off. If I see you doing it again, next time I will call you out publicly.

In contrast, I find it very hard to believe that any but the most deluded hard core Burzynski believers will find the segment in which Bob Blaskiewicz, creator of The Other Burzynski Patient Group and the force behind the idea of promoting donations to a real cancer charity and challenging Burzynski to match it, anything but completely risible. His voice is electronically altered to make it sound ominous and evil; his face is blurred out, and the Virtual Skeptics podcast in which he discussed Burzynski is represented as a "Skeptics' teleconference," in which it is implied that Merola somehow obtained a secret discussion. It's all very silly. I'd say it's almost Monty Pythonesque, except that Monty Python were brilliant and produced such effects on purpose. Merola is a hack and is only funny by accident because he has no filters that tell him when he's going way over the top.

So is Merola's treatment of yours truly. There's a hilarious picture of my "About Me" page at my not-so-super-secret other blog, with my picture partially blurred out, onto which Burzynski places marks for emphasis that I've been funded by the DoD (past tense, Eric, not the present tense that you used), the NIH, ASCO, and other organizations (as if getting peer-reviewed research funding were a bad thing). Then there's the bit about my former funding, a small grant that's been expired nearly a year now from Bayer Healthcare. Then, of course, there's my not-so-super-secret other blog, which—gasp!—accepts advertisements from pharmaceutical companies. I knew about all of that before, but actually seeing it onscreen was rather bizarre. I can only wonder what it would have been like to be sitting at a screening of this movie and seeing it.

Then, there was the kicker.

Eric Merola and Laura Hymas' fiancé Ben Hymas called me a liar. Based on this particular blog post about an MRI Ms. Hymas underwent in 2011, they claim that I intentionally linked to an older blog post and ignored a more recent MRI result. This is patently untrue. Note the date of the post in question: November 30, 2011 at 1 AM. (Yes, as is my frequent custom the post was written on November 29 and set to go live at 1 AM the next day or 6 AM in the U.K.) Now note when Ms. Hymas underwent that other MRI scan: November 29, 2011. Finally, note when Ms. Hymas posted the results of that scan? November 30, 2011, almost certainly after the blog post in question went live. I suppose the accusation is that I am not psychic and there fore couldn't anticipate that there would be an MRI scan. Moreover, I agree with a commenter who showed up on January 8 and pointed out:

He never claimed they were the November results. He was analyzing the October vs. September results. In fact, the October vs. September results are more significant (in terms of size) than the November vs. October results. Laura is misrepresenting the report.

I'm afraid that was true. Moreover, I do not recall either Ben or Laura Hymas ever contacting me to let me know that Laura had had another MRI.

My post from November 30, 2011 was correct as written at the time it was written. Ben Hymas is quite mistaken in saying about me, "He's lying to them." Moreover, if I had screwed up, I would have admitted it. Indeed, part of the reason I looked into this so closely was because I wondered if somehow Merola had actually found a mistake I had made. You know the saying about the proverbial blind squirrel occasionally managing to find a nut? It's possible, albeit unlikely, and in fact there was no mistake. Well, that's not entirely true. I did misspell Ms. Hymas' name; it's a mistake I went back and corrected when I discovered it. (You'll have to forgive me, as it was the first time I had read about the Hymas case.) In any case, the only reason I didn't post an update was because the commenters had done such a good job addressing the criticisms that showed up a couple of days later. Whether you think that I should have posted an update or not, one can't help but note nowhere does Eric Merola mention that I wrote a much more recent analysis of Ms. Hymas' clinical situation in February 2013 that incorporates all updates. It also pains me that Mr. Hymas would take Merola's explanation at face value. I feel nothing but sympathy for relatives and friends of cancer patients, and I want Ms. Hymas to do well, but it hurts to hear Ben Hymas repeat Eric Merola's demonstrably false accusation against me.

In case either Hymas sees this post, let me briefly repeat my most recent assessment of Ms. Hymas' history as described online, my basic conclusion about Ms. Hymas' case in February was this:

Laura Hymas is different in that she provides somewhat more suggestive evidence for a possible antitumor effect from antineoplastons, given the longer period of time since she finished her radiation therapy and since her still being in complete remission five and a half months after her first scan showing no residual tumor. However, her case is by no means the slam-dunk evidence that Burzynski supporters claim it to be (or, for that matter, that Merola touts it as in his upcoming movie), given that it has been less than six months since confirmation of a complete response. Moreover, given that HDAC inhibitors do seem to have some efficacy against glioblastoma, it is not unreasonable to expect that antineoplastons might actually have had activity in Laura’s case. Making claims, as Burzynski does, however, that his antineoplaston therapy is more efficacious than conventional therapy is unwarranted based on a single patient. Conventional therapy can produce durable remissions and complete responses, too, and, although they are still rare, they are becoming more common. That’s why legitimate randomized clinical trials are needed to determine if PB/antineoplastons have antitumor effects in humans; which tumors are sensitive; if there are any biomarkers of sensitivity; and to separate the signal from the noise. Anecdotes like those of Hannah Bradley and Laura Hymas can be suggestive, but in and of themselves prove nothing.

There is nothing in Merola's deceptive movie to change my assessment of what happened in the case of Laura Hymas' brain tumor or my opinion of Eric Merola. If anything, having seen Burzynski II, my opinion of Merola has plummeted even further, something I hadn't thought possible. I suppose I shouldn't expect any better from someone who thinks nothing of referring to me as a white supremacist and claiming that I like to eat puppies.

Evidence, evidence, wherefore art thou, evidence?

Another section of the movie that I was highly interested in, having discussed it before twice, was Dr. Hideaki Tsuda's antineoplaston research in Japan, which Keir Liddle characterized as underwhelming, and rightly so. This segment came near the end of the movie, right after the segment on The Skeptics and obviously meant as a retort to Burzynski critics.

What I learned about the trial was this. The trial was of a design like what I mentioned above, chemotherapy alone versus chemotherapy plus antineoplastons. Specifically, the trial tested 5-FU infused directly into the hepatic artery for liver metastases versus 5-FU plus antineoplaston A10 and AS2.1. A10 was administered intravenously for one week, and AS2.1 was given in the form of capsules for at least one year. Dr. Tsuda takes pains to insist that he got no advice or assistance from Burzynski, but that protocol is very specific. Why antineoplastons A10 and A2.1? Why A10 for only one week? Why A2.1 for a year? I also note that this is a rather old technique. Back in the 1990s, intra-arterial chemotherapy for liver metastases was all the rage, but these days, because of more aggressive resection of liver metastases and newer, more effective chemotherapy regimens for metastatic colorectal cancer, intra-arterial chemotherapy is seldom used anymore, much less intra-arterial 5-FU. That's not even considering the technical complexity of placing the intra-arterial infusion pump and the potential complications from having a catheter in the hepatic artery. Dr. Tsuda is behind the times. Indeed, one notes that the CT scans shown from Dr. Tsuda's group purporting to demonstrate responses to his combined regimen all date back to 1999, which makes me wonder just when this trial was done and, if it was done so long ago, why it hasn't been published already.

As for the trial, were 65 patients, 33 in the control group and 32 in the antineoplaston group. Dr. Tsuda reported in the movie that the median survival for the control group was 36 months (which is actually rather long for liver metastases treated with intra-arterial 5-FU alone) and that the median survival for the 5-FU plus antineoplaston group was 70 months. Again, all I can do is to emphasize the usual things. This study is not published in peer-reviewed literature, and it was, in my estimation, highly irresponsible of Dr. Tsuda to promote it in a propaganda film before he actually published the results. We have no way of knowing whether the two groups were well-matched or if there were other methodological problems with the study. Let's just put it this way. It's way premature of Dr. Tsuda to proclaim that it's "obviously not anecdotal any more." Publish first, and let the scientific community be the judge of that.

There was also another part that makes me wonder whether this study will ever be published. Right after Dr. Tsuda proclaims antineoplastons not to be anecdotal any more, we're treated to this quote from him:

We can't go any further with these clinical trials allowing antineoplastons to gain market approval exclusively for the Japanese people—due to the Unites States FDA and the power they have over the world market.

The FDA would retaliate against any Japanese pharmaceutical company who would try to get antineoplastons approved in Japan by no longer approving their other drugs for the market in the USA.

It's the perfect conspiracy theory. Dr. Tsuda claims to have data from a randomized clinical trial that's good enough to use to gain approval for antineoplastons from Japan's equivalent of the FDA, but he says he can't because the FDA would retaliate against Japanese pharmaceutical companies. As I said, one wonders whether Dr. Tsuda will ever publish the results of his trial.

That leaves us with John James, who is listed as a research scientist with Targacept Pharmaceuticals, ranting about how cancer is profitable, how pharmaceutical companies have no incentive to find cures for cancers, instead preferring chronically administered drugs, and telling the sheeple (OK, he doesn't actually use that word, but the meaning is clear) to "wake up." What's not pointed out is that Dr. James no longer works for Targacept and instead has started working for Healing Seekers, a group that does expeditions to remote areas of the world looking for "natural" cures. In fact, he appears to have left Targacept in October 2012, which makes me wonder whether if his participation in this movie had anything to do with it, as the timing fits. Or perhaps he was just a victim of the wave of layoffs coming that hit in October in the wake of the failure of Targacept's two ADHD drugs in recent clinical trials. After a similar round of layoffs earlier in 2012, perhaps James saw the writing on the wall.

No, none of it is particularly convincing if you know anything about cancer research. I could change my mind if Dr. Tsuda actually published his results and it turns out that his trial was very well designed, but from seeing him describe them in a propaganda movie like this? Not so much.

In the end, if Burzynski had the evidence, he would have very likely published it by now. Through other skeptics who attended a screening of Burzynski II in the San Francisco area, I've learned that Ric Schiff, whom we've met before and who is now, according to reports I've been getting, really peeved that I questioned his claim that he is an "expert" in detecting medical fraud when as a cop he views himself as a "fraud expert," is claiming that all the phase II studies recently wrapped up and are being prepared for publication. I have my doubts about that, but let's assume it's true for the moment. If that's the case, then I submit that Merola should have waited until after some of those complete phase II have been published in the peer-reviewed literature to release his movie. Data talks. BS walks. And there's no doubt that Burzynski II is pure BS. In fact, I think I'm being too kind.

oracknows Sun, 06/02/2013 - 18:08

Categories

http://www.bbc.co.uk/radio/player/bbc_radio_five_live

Epic.

Thanks for taking the pain for us. Your pharma $hill millions will ease the suffering, and heal your poor, battered brain.

Now, I'd call you a prince among men, but you've disappointed me. Not only are you a puppy-munching neo-Nazi, but now you tell us you're not psychic?

Feet of clay.

Next you'll be telling us that you're not a supercomputer.

Seriously, Merola is clearly unhinged. Casting you and Bob Blaskiewicz as supervillains is hilarious. He might as well have Photoshopped horns onto you both, and a background of flaming brimstone behind you.

@Bob - How does it feel to be portrayed as a demonic agent of Big Pharma?

I've said it before and I'll say it again, TOBPG is an amazing compilation, and you have my utmost respect for creating it.

I know it's hard on you, it must be so emotionally draining seeing the same old lies and false promises endlessly repeated, and then writing it all up. Hopefully tonight's Panorama will lead curious googlers to your site, and they can see the shamefully repeated scenarios of people handing over their life savings, being pumped up with false hope (even at the point of near-death), and then cruelly let down. He needs to be exposed as the monstrous charlatan that he is.

If the recording of the conversation with Laura Hymas' NHS clinician was passed on to Merola without his consent, then he almost certainly has a case for legal action under the UK's privacy laws. I'd love to see that happen, because Merola's only possible legal defense would be that broadcasting the conversation was in the public interest.

BBC radio on Burzynski right now:

Dr. B. clinic's statement to BBC claims he treated 776 brain tumour patients last year; 15% survival rate. Nothing published of course.

British pediatric oncologist Dr. Walker ripping Dr. B's ethics to shreds on BBC.

BBC teaser video has Burzynski himself telling journalist FDA won't "allow him" to report any results. Total BS.

Supposedly it's now available on BBC iPlayer, but unfortunately I can't watch because it's geoblocked, and I'm in the States.

I was able to see it earlier here in Canada. Burzynski cackled like a madman after each question and told journalist to look around the room at all the research. "You might need it one day if you get cancer."

I just checked: video still works here:

http://www.bbc.co.uk/news/health-22717245

More on Burzynski coming up now (6:35 a.m. ET) on BBC Radio with Pete Cohen from the Merola movies and "Team Hannah" fame:

http://www.bbc.co.uk/radio/player/bbc_radio_five_live

BBC radio asked Burzynski's clinic for an interview. They declined but offered Pete Cohen as their spokesman. Wonder where Dolcefino, Azad, et al. are?

Pete Cohen says Phase III trials will probably "never happen" due to cost.

Looking at the BBC new's teaser article (linked above at #10 by Marc) on tonight's Panorama episode gives me confidence that this may actually have true, as opposed to false balance.
At the very least, Panorma has a strong reputation in the UK for not pulling its punches.
Now if only my firm didn't insist on routing all our internet via Germany and I could actually access listen to 5live.

I listened to the last 10 minutes of the Radio 5 Live interview with Pete Cohen, and he was very articulate and persuasive, unfortunately (because cancer patients hearing him may be persuaded that Burzynski's treatment works), though he floundered a bit when trying to explain why Burzynski has failed to publish complete reports of any of the many Phase II clinical trials he has conducted. If he can publish selected bits and pieces, including case histories, from the trials, why can't he publish any of them in full? Does it really take 6 years to process a completed clinical trial for publication?

Interestingly, I think Pete said that Hannah was completely cured, and that there was no longer any sign of a tumor on her latest scans - did anyone else hear this? I can't find anything on the Team Hannah website about this, the last vlog was in April, which seems a bit odd. I'm really hoping that this is true, although I'm not at all convinced Burzynski's treatments had anything at all to do with it. It looks quite plausible to me that surgery and radiotherapy were responsible for any improvements. It can take several months for the effects of RT to become clear, and pseudoprogression can be mistaken for tumor growth.

I do find it despicable that Merola would use an apparently secret recording of a private conversation and put it in a public movie.

As sophia8 points out, unless that doctor explicitly consented to allowing that footage to appear in the movie, it's probably illegal, in the US as well as the UK. In some states, Mr. Hymas would have been breaking the law by recording that footage without the doctor's consent. Unfortunately, it's not necessarily easy for the doctor to collect damages from Merola if he sues in the UK, because he'd also have to prove it would have been illegal in the US (otherwise, the UK judgment would not be enforceable in the US). That's collateral damage from the UK's ridiculously plaintiff-friendly libel laws.

While we're on the subject of Burzynski and UK TV, now's probably the time to repost another BBC documentary about child cancer patients, that featured a Burzynski patient (in fact the patient mentioned in the link in #10) and showed some of the horrific side effects she suffered.

http://www.youtube.com/watch?v=wbpikTuoLB0
(the relevant parts are at 28.10, 39 and 52.50 mins)

That child sadly, subsequently died, but the other little girl featured in the documentary, who I believe was also mentioned on the blog as a prospective Burzynski patient, never did go to the Burzynski clinic and is now in remission, the last I heard.

The UK doesn't have specific privacy laws, at the moment.

Brilliant review of Burzynski II, Orac.

It appears that the Panorama Show reporter did not give the movie a thumbs up review.

Peter Cohen is already attempting some damage control:

https://www.facebook.com/TeamHannahB

"Hi everyone. This Pete Cohen here.
I wanted to let you know that Hannah continues to do really well and make great progress.

Tonight the Dr who treated her is being featured on BBC's Panorama.

This is not going to paint him in a positive light.

All I can tell you is that this man and his treatment has saved Hannah's life.

We are forever thankful for all the support that everyone has given us and we will continue to update you on Hannah's progress."

Congratulations to you Orac, Bob Blaskiewicz, Josephine Jones and the many other bloggers for your extensive reporting of the Burzynski *treatment protocol* and his maneuvers through the regulatory system and courts.

I really hope Pete's right about Hannah doing very well, but one can't help but wonder why it's been over 2 months since her last blog and why Pete hasn't shown any of her scans since fall 2012. I have a very bad feeling about this...

Supposedly it’s now available on BBC iPlayer, but unfortunately I can’t watch because it’s geoblocked, and I’m in the States.

This three-minute clip isn't blocked.

If antineoplastons actually did work as claimed Burzynski would need neither patient testimonies nor serial infomercials disguised as documentaries to attest to their efficacy: he'd have intead the results from the 60+ phase II clinical trials he conducted over the past several decades demonstrating effectiveness.

The fact that patient testimonies and video programs are the best he can offer as proof of efficacy is in itself sufficient to completely undermine confidence in antineoplaston therapy..

Or this two-minute one that starts right with Scamley.

Elihphile@ The UK *does* have privacy laws. It has the Data Protection Act (which is mainly concerned with information held on individuals) plus the Right to Privacy section of the 1998 Human Rights Act

Elliphile @18 -

We do have privacy laws. We don't have an overall privacy act, and GB didn't sign on to the new EU social networking privacy laws, but there are a number of specific privacy laws here.

There's a list available:

www.yourrights.org.uk/yourrights/privacy/

Sophia beat me to it!

Same thing just happened on Orac's friend's blog. Stupid slow thumb, haha.

Ah, here it is:

" Person to Person
Between two private individuals it is not prohibited to record conversations. The problem arises however, if that conversation is then provided to a third party for whatever reason, without the consent of both parties. Consent can be obtained retrospectively or by arguing it to be within the publics interest. As an example, reporters frequently record conversations covertly, but their defence is that the content is in the public’s interest and should be disclosed; in that knowledge of the recording would alter the content of the conversation significantly."

So, if the recording is not in the public interest, it cannot be used legally without the consent of all parties.

Sceptics, pardon me, "The Skeptics" are tarred with the very same brush ritualisically employed in woo-based expert bashing- sceptics being a sub-group of the powers-that-be: those compromised merchants of autocracy- governmental agencies, institutions, universities, corporations, the media.

"Don't trust THEM!", they shriek,"Trust ME!"
Why?

I've noticed- over the past several years- that woo-meisters spend as much time ( and electrons) on expert-abuse as they do on explicating their natural health mythos. These two sets of disinformation are intrinsically interwoven and symbiotically co-dependent: woo needs conspiracies to explain why its brilliance has not become the status quo.

They want to control their audience's access to information- as any cult would-
because if their followers were to read sceptics, some might be convinced and thus, cross over to the Dark Side.

So, calling us "puppy-eaters" or "mustache-twirlers" and "investigating" the sources of our ill-gotten monetary gain are merely ways to make what we have to say un-attractive ( by contagious magic) and thus, to be shunned as a source of contamination.

Intriguingly, the "women with mustaches" meme reminds of a 1970s study wherein "successful women"/ "number one in her medical school class' often were considered to not be "real" or "real women".

Are smart women not really women? Apparently to some people they aren't: and yes, that was 40 years ago.

You'll also notice that when *ne plus ultra de* woo, Gary Null, describes his opponents ( pharma black ops guy, pharma rep, etc) they are "fat, bald" and usually sweating profusely, crammed into tiny expensive cars.
The "beauty" of Jenny and her cohorts is often displayed.
Critics of woo are pictured in the least flattering photos available.
I could go on.

I will leave the developmental significance to this tendency to your imagination.

@23: Wow, it appears that Burzynski isn't very used to being crossed.

BTW, Arize (Chris) Onuekwusi, the Stage I colon cancer patient is listed as "a cast member" for the 2010 Burzynski movie:

http://www.imdb.com/title/tt1632703/fullcredits?ref_=tt_ov_st_sm#cast

I viewed Burzynski I last night and Onuekwusi's interview, along with other patient interviews, did not "make the cut". The list of the patients and their diagnosis, who didn't "make the cut" appear at the end (1:46:55) of the Burzyynski I video:

http://www.youtube.com/watch?v=rBUGVkmmwbk

Burzynski confidently tells us that the Phase II results will be published "very soon" (when doctors will be coming to him to learn at his feet). Call me cynical, but that seems like Burzynskispeak for 10 more years of seeing no complete results because BigPeerReviewedJournal is obstructing his brilliance.

Are smart women not really women? Apparently to some people they aren’t: and yes, that was 40 years ago

Misogynists hold that "real" women should be satisfied with a man, having that man's babies, and living out a life of domestic bliss.

Don't want a man? Not a real woman.
Don't want kids? Not a real woman.
Want to devote yourself to academic or to a profession? You've guessed it!

Think about how gay women are described. We must have been molested, or had a bad time with men, or just not met "Mr Right". We must be faulty or broken, we can't just have no sexual interest in men, there must be some reason.

So it goes for doctors, always described as "lady doctors", or women without kids who are described as childless. Always reminded of their status, or that something is "missing".

Are smart women not really women? Apparently to some people they aren’t: and yes, that was 40 years ago

Misogynists hold that "real" women should be satisfied with a man, having that man's babies, and living out a life of domestic bliss.

Don't want a man? Not a real woman.
Don't want kids? Not a real woman.
Want to devote yourself to academic or to a profession? You've guessed it!

So it goes for doctors, always described as "lady doctors", or women without kids who are described as childless. Always reminded of their status, or that something is "missing".

Hmm. Duplicated my comment with one screen tap, weird!

You’ll also notice that when *ne plus ultra de* woo, Gary Null, describes his opponents ( pharma black ops guy, pharma rep, etc) they are “fat, bald” and usually sweating profusely, crammed into tiny expensive cars.

You will also notice if you do a GIS for "Gary Null" that his photos present a Senior Stud image. Looks pretty hot, apart from the "not found in nature" hair colour..

@ TBruce:

While there is absolutely nothing wrong** with either men or women dying their hair - or not dying it- there is an ethical problem when you tell customers that it is 'all natural' and due to a vegan diet, supplements, exercise et al.
And then sell supplements, foods, books and high-priced retreats.

-btw- I just spent a few months convincing a guy to NOT dye his two-tone hair whilst tinting my own- it's purely aesthetics.

** although it is an affront to my artistic sensibilities. OUCH!

I can spot bad henna jobs, face peels and eye lifts a mile away. What's next for Null...a surgical procedure to remove his turkey waddle?

^ photo of Null...

http://www.nypost.com/p/news/local/death_is_now_null_and_void_vyaG1Y990…

You will also notice if you do a GIS for “Gary Null” that his photos present a Senior Stud image.

It was better when he let his freak flag fly.

Narad @39 --

...when he let his freak flag fly.

Thanks a lot. Now I have "If 6 was 9" playing in my head.

(And of course, it's great.)

I remember when it came out that Michael Jackson had died from a propofol overdose given at home. And I kept thinking to myself..."boy is his doctor going to get in big trouble for giving a medicine for use only in ORs and ICUs simply to help the KOP get to sleep."

But, no. Dr. Conrad Murray didn't have his license to practice cardiology suspended in California until he was INDICTED and ordered to stand trial for the death of MJ (http://www.popeater.com/2011/01/11/conrad-murray-license-suspended/ , sorry for the huff po) .

Where was the CA medical board on this, when it was well known before the indictment that Murray had obtained the propofol by lying to those he bought from. Heck, Dr. Murray only got 4 years in prison for what he did.

I wish doctors had more guts (like you, Orac) to call out those among us who are liars, cheats, scammers, quacks, charlatans, etc. Sadly, bad physicians can still flourish in this day and age, and Burzynski represents yet another scoundrel.

But it is only by exposing them that there is any chance for things to change.

Wow. Panorama was pretty good tonight. It's often sub-par and sensationalised, but it was decent tonight.

Seeing those poor little girls, Luna and Amelia, and their devastated families was awful.* The doctor from the hospital that treats child victims of Stan's "All natural, non-toxic therapy" pretty much said it all, "I haven't seen a survivor yet"

Oh, and a note to Hannah Bradley- saying "Radiotherapy doesn't work for everyone" does not mean that Burzynski's PPP** works at all.

Could someone more qualified tell if Hannah's stilted speech and apparent difficulty grasping words seem like a medical issue? She doesn't seem as fit and well as her partner claims.

Nice to see Wayne and Lisa Merritt too, I wish them well. It was nice to put faces to the names.

* playing 'Cold Water' by the Reindeer Section in the background destroyed my already limited ability to be unemotional.

*" Piss Poor Protocol.

Just watched Panorama as well. Pretty good on the whole, I think they got the message across although I would have liked to see it stretched to an hour.

Probably a cheap shot but seeing the Burzyinski "team" together for the interview brought the Adams family strongly to mind. Why folks don't run a mile at the sight is a mystery. Burzyinsky himself came across horribly, arrogant and evasive.

Elburto
@ 32 &33
When I was in high school, my counsellor (a nun), upon hearing I wanted to be a veterinarian, told me that "ladies don't become veterinarians." I replied, "That's okay, I hadn't planned on being a lady."
I got detention for a week. :)

@23: Wow, it appears that Burzynski isn’t very used to being crossed.

Burzynski is well known for being arrogant and quick to anger when he is criticized. You should see some of his quotes from articles in the 1990s. You don't dare criticize the Great and Powerful Oz Burzynski. :-)

Nice one Janet! A teacher once told me I shouldn't drink alcohol because it would destroy my ovaries. She wasn't happy when I replied with "In that case, Miss, mine's a pint!". I was sent to the Head of Year for "insubordination and stubborn insolence".

Some things never change.

@ Chris: Michael Jackson had the financial wherewithal to hire his in-house drug (Propafol) pusher. At the time of Jackson's death, I recall an interview with an anesthesiologist, who described reports from patients who underwent surgery while anesthetized on Profafol....

http://abcnews.go.com/Health/Drugs/michael-jacksons-death-propofol/stor…

One could surmise that Jackson had experienced those *pleasant effects* while undergoing those multiple plastic surgeries (that never happened, according to Jackson).

The Jackson wrongful death case was a high profile case, as were the multiple deaths caused by injected intrathecal medications, which were caused by bacterial and fungal contamination from the New England Compounding Pharmacy, where the FDA ( finally) "fast-tracked" their final investigation of that compounding pharmacy:

http://www.cbsnews.com/8301-204_162-57579835/report-reveals-fda-knew-of…

Meanwhile, the FDA, which conducted an extensive audit of the Burzynski clinic, months ago...has not fast-tracked...or reported...on the results of that audit. You have to wonder why, in spite of multiple investigations, and, in spite of the recent spate of unfavorable publicity about the Burzynski Clinic and antineoplastons, we are still awaiting the results of that FDA audit.

@Chris - that footage of him on a witness stand (from the 80s by the looks of things) was just so over the top. No wonder the TMB don't like dealing with him.

^ my last post directed at Dr. Chris Hickie (Too many Chris's posting here) :-)

Modesty, humility, altruism and empathy. Just some of the words Burzynski has yet to look up the meaning of in a dictionary.

Regarding privacy laws, it's probably more accurate to say that unlike, say, France, the UK doesn't have a specific privacy statute (which is what I initially thought Sophia8 was suggesting), that's easily actionable by most people, against private individuals and organisations. You can argue a civil case for protection of privacy, based on the Human Rights Act, if you have the resources to go all the way to the High Court to argue over the meaning of public interest, and potentially lose with crippling costs depending on how the judge is feeling that day. Certainly Naomi Campbell and Max Mosley have successfully pursued that route. Most people do not, hence the fact that our press feels free to publish intrusive and prurient information with merry abandon, and hence the argument over Leveson.

There's little or no realistic prospect of an ordinary Oncologist pursuing privacy action against Burzynski, Merola et al.

Getting back on topic, I watched the Panorama documentary, and it was pretty devastating for Burzynski, with a queue of doctors denouncing him and his methods. The testimony of the doctor from his local children's hospital was particularly devastating and even Luna Petagine's mother admitted that the hospital hated him and saw themselves as continuously "clearing up his mess." The Saunders' were also interviewed, apparently before Amelia died, and appear to have completely turned against him even then. It's interesting that the private experiences of the families are often very different from the image they try to project publicly.

Merola's feeble attempts at damage control on Twitter remind me how scientology tries to deal with bad publicity on the myriad critical articles that have appeared lately. A scientology sock puppet keeps posting "we're the fastest-growing religion in the world" and then links to a scientology propaganda website. Merola keeps linking to his own self-serving movie website or a bogus "movie review" site he has just set up, whining to all detractors "you've been duped by the BBC; here's the truth."

Burzynski and scientology: two destructive cults that suck their victims dry of their life savings.

I almost gagged: Merola has just claimed on Twitter that his first film is in "100 million homes." And since it "won" a viewer's choice award on the Documentary Channel it can't possibly be an infomercial.

Look what Merola recently added to the "FAQ" section on the film's website.

14. Is it true that Eric Merola's cousin, Domenica Prescott, was treated with Antineoplastons? Yes, it is true. Shortly after the original documentary was released in 2010, Domenica was diagnosed with a Glioblastoma Multiforme brain tumor. Even though Eric Merola had been investigating Antineoplastons and Burzynski since 2007, and even though the film was available to be seen at the time her her diagnosis, the remainder of the family wasn't easily convinced that trying anything "alternative" would be a good idea for Domenica. After Domenica underwent 2 surgeries, a full round of chemotherapy (Temodar) and over 6 weeks of radiation—all of which failed her, Domenica began Antineoplaston therapy (ANP) in early 2011. After only 8 weeks of ANP therapy, her tumor decreased in size by nearly 30%. A few weeks later, Domenica died of a fatal seizure—where she suffered massive head injuries and excessive bleeding. By the time Domenica's father found her on the bathroom floor, it was too late to save her. Seizures are very common with inoperable brain tumors like a Glioblastoma or Anaplastic Astrocytoma—in fact, that is usually how people discover that have a brain tumor in the first place. While this is extraordinarily sad, since Domenica did not die of her cancer being uncontrolled—but instead one of the common side effects of this tumor type—all while she was one of the lucky ones where ANP was showing efficacy. Many paid "Astroturfing" bloggers (people who have never met Mr. Merola or Domenica Prescott—who ironically have chosen to identify themselves as "The Skeptics") ignore this reality—and wrongfully write and blog that Domenica died because Antineoplastons were unable to control her cancer.

I am certainly very saddened by what happened to Domenica Prescott. I fail, however, to understand the logic of the statement "... Domenica did not die of her cancer being uncontrolled—but instead one of the common side effects of this tumor type...".

M O'B:

And this latest claim from Merola contradicts what had been posted online for a few years about Domenica (I'll try to find the link, but I'm sure Merola has had it taken it down by now to avoid to looking like the liar he is).

From what I remember, she was also told the tumour was disappearing, only to die about 11 days later. Never was there any word about a seizure until now.

Many paid “Astroturfing” bloggers

Projection? The man is practically IMAX.

It is possible Merola is telling the truth about his cousin's seizure, but that doesn't mitigate the fact there's no reference to her death on this web page over two years later. In fact it looks like they're still trying to raise money for her treatment:

http://www.concretemadenew.com/settingthemfree/Domenica_Prescott.html

Who is more likely to be doing any "duping": the BBC, without any dogs in the race, or a professional liar (AKA advertising veteran) who has been shilling for Burzynski for over three years?

And I don't believe for one second that he "almost went bankrupt" making the films. Maybe the idea for the first one really was his idea, but once Burzynski saw how effective a tool it was for generating business the second was almost certainly funded by the clinic.

They are low-budget films anyway, with a crew of one. Merola couldn't even be bothered paying for a real narrator; either his ego or his budget (or both) dictated that he "hire" himself, which was a major mistake. His monotone, expressionless delivery almost lulled me to sleep. But then again his brother's crackpot conspiracy films espouse the same piss-poor production values.

100 million homes? According to the US Census Bureau...

Oh, screw it. It's too easy to dispel anything the guy says. But that's me. I'm not suffering from a condition that might make me find an answer, any answer, and hope with all my heart that it works.

It is my sincere opinion that there is a special kind of hell/afterlife for people who prey on the innocent, the weak, and the hopeless.

I am going to try to see the free version..for me it is not tax deductible...Having only seen I, and read some anti-testimonials on line, I think that this man is DANGEROUS.. the sodium intake with some of his compounds are borderline lethal. One major point that the public does not understand is that it is because of the still open NCI clinical trials that he can offer these compounds. And "targeted" therapy is a nice buzzword, but the is really offerening these type of agents. Thanks for making this clear and also that often he pretreats with a conventional agnet, and then his own stuff. Given the times we are living in the best we can do is "caveat emptor"

100 million homes? According to the US Census Bureau…

Oh, screw it.

The Nielsen 2014 HH universe is 115.6 million.

@ MSII: Quite often a seizure is the first indication that someone has a brain tumor http://www.nbcnews.com/id/24730317/ns/health-cancer/t/kennedys-tumor-wa… or a congenital brain blood vessel, (AVM), malformation:

http://www.mayoclinic.com/health/brain-avm/DS01126

So, it is plausible that Merola's cousin did die from a seizure, even though the tumor surgery debulked/removed the gliomablastom.

(The other nonsense about shrinkage of her tumor after undergoing antineoplaston treatment...is just that...nonsense).

BTW, anytime a person suffers a traumatic brain injury, or has surgery to remove a blood clot or remove a benign brain tumor, they are prescribed anticonvulsant medication(s), which may, or might not, be gradually titrated down/withdrawn.

The FDA would retaliate against any Japanese pharmaceutical company who would try to get antineoplastons approved in Japan by no longer approving their other drugs for the market in the USA.

So ... the FDA would retaliate against any Japanese pharmaceutical company that produced a drug competing with drugs produced by US Big Pharma? Is that what that means? Are there then *no* drugs produced by Japanese pharmaceutical companies that compete with drugs produced by US pharmaceutical companies? Does this apply to pharmaceutical companies worldwide, or is there special animus against Japanese pharmaceutical companies?

This claim is too stupid for words.

He didn't specify that those 100 million homes were in the US, so he most likely meant worldwide. Here's how he probably arrived at that number: since the movie is on YouTube, he's taking the total number of homes that have Internet access and claiming that figure.

After all, he said the movie was "in" 100 million homes, not that it's been watched. So if you have Internet access, technically the movie is "in" your home.

His approach to honesty with statistics is the same as Burzynski's. Neither can provide any basis for their claims.

Does anyone have a reliable method of estimating how many people saw the original fiasc... film? Or the new one?

Indeed, how widely seen are ANY of these epics - anti-vax's "The Greater Good" or cancer cure tales like "The Beautiful Truth"?

Woo-centric films may appear to be a trend but I sincerely wonder if anyone is turning a profit on them.

Many paid “Astroturfing” bloggers

It took 42 minutes between Xeni Jardin posting on the BBC documentary and the appearance in the comment thread of the first spammed advertisement [since moderated] for Merola's fillum.

MSII,
Just as we learn to recognize AoA trolls, the Scientologists often dispatch cheery, upbeat OSA Ronbots to combat entheta online. They all sound vaguely the same and usually dispense bland platitudes and avoid being snarky (which fails since they are utterly humor-impaired), but something really creepy and dark happened over the weekend regarding The Hollywood Reporter's coverage of the total meltdown of closet Scientologist Will Smith's After Earth at the box office. Instead of defending the movie or inviting people to "read Dianetics" for themselves, they started race-baiting flame wars. Volleys of ugly comments against blacks and liberals flooded the thread. This is a totally new tactic for OSA, pretenting to be far-right, racist teabaggers and derailing the comments that way. It got so bad the THR had to scrub all the comments, only to have the horde return the next day to try again. I'm a creative director in an agency, I review copy to make sure that pieces we create maintain their "voice." I will swear that most of those comments came from the same writer, or at least the same talking points. So much for moderation over at THR, they could use a little Orac of their own.

Woo-Cinema shows up on Netflix pretty much right out of the can since it dies in the the theaters pretty quickly. Who knows what the figures are for viewing? I've seen several of the ghastly things, so viewership certainly is no indicator of concordance. I imagine that they must track downloads at the Netflix bunker in it's undisclosed location, deep below the Nevada (or Utah) desert.

Pareidolius,

Yes, I've been following the fun at THR since Tony Ortega tipped us off about Marc Headley's review. I have seen OSA attempt to derail other comment threads in a similar manner, but this really sinks to a new level. And you are probably correct that most of the comments come from one of a handful of writers (Louanne, Marcotai, etc.) who are ordered by their Sea Org superiors to post comments without being allowed to read the original posts (might be entheta)
or understanding what they're posting.

The racist (anti African American) comments are especially ironic considering Miscavige has been in bed with Nation of Islam for some time now.

Merola's distraction tactics ("Look over here! Don't look there! Ignore those lies!") reminded me of the usual, more mild-mannered comment strategy to which you alluded. And Burzynski has a lot in common with David Miscavige.

@Andrei Laszlo - You may be interested in this link:

http://theotherburzynskipatientgroup.wordpress.com/

Bob Blaskiewicz is tirelessly piecing together the stories of the real Burzynski patients, as opposed to the cherry-picked testimonials available on the Burzynski Patient Group marketing machine site.

You can see just how badly most people are affected, but if you read only one story on there then read the one second from the top, that of little Luna Petagine. She was the toddler featured on tonight's Panorama, and an earlier documentary about Great Ormond Street Hospital.

Reading her story, and watching the video clips therein, will give you a glimpse into the sheer hell of the level of hypernatraemia inflicted on Burzynski's victims.

MSII @58

It is possible Merola is telling the truth about his cousin’s seizure, but that doesn’t mitigate the fact there’s no reference to her death on this web page over two years later. In fact it looks like they’re still trying to raise money for her treatment:

I suspect the Setting Them Free website has been abandoned. The copyright is 2010 and there is no link to it from the hosting Concrete Made New website. I suspect all the patients whose success stories are on there are now dead.

Watch the *whole* Great Ormond St. documentary if you can. It'll take you about 4.5 hours, as I recall, but well worth it. The episodes are up on YouTube.

I really felt sorry for Luna P's oncologist at GOSH. He seemed like a very ethical, very humane person trying to do his utmost in a set of horrible and heartbreaking circumstances. I really can't say enough good things about the focus on medical ethics in the series. If I were teaching a course with an ethics unit, I'd have my students watch it.

STF is still current, I think - see the date of this event: http://settingthemfree.org/arizonas-rockin-with-talent/

"women without kids who are described as childless"

I prefer to think of myself as motorcycle-ful.

An interesting read for sure - now I'm off to the Panorama review...

I find this title to be particularly amusing given that in his last salvo, Squiddles forgot to double-check when temozolomide actually received accelerated approval. (Hint, DJT: It wasn't actually January.)

Deconstructing another Stanislaw Burzynski cancer "success story"

oracknows — Thu, 09 May 2013 02:00:27 +0000

Deconstructing another Stanislaw Burzynski cancer "success story"

A key pillar of the Stanislaw Burzynski antineoplaston marketing machine, a component of the marketing strategy without which his clinic would not be able to attract nearly as many desperate cancer patients to Houston for either his antineoplaston therapy (now under a temporary shutdown by the FDA that, if science were to reign, will become permanent) or his "personalized gene-targeted cancer therapy," which Burzynski represents as a discovery of his that large NCI-designated comprehensive cancer centers like M.D. Anderson or Memorial Sloan-Kettering are only now starting to copy, is the collection of patient testimonials that are used to sell Burzynski as able to cure cancers that no one else can cure. Of course, as someone relatively knowledgeable about the state of personalized cancer therapy, I can't help but wonder why the Burzynski machine never mentions Moffit Cancer Center, which has a very active genomics program and personalized cancer therapy initiative itself, or Mt. Sinai or Cornell, both of which are engaged in a genomics "arms race." Maybe he isn't as knowledgeable about personalized cancer therapy and targeted therapies as he claims. (Oh, wait. He isn't!) In any case, lacking any compelling clinical trial data (or at least, never having published a completed phase 2 clinical trial), despite having registered over 60 such trials, all Burzynski has is patient testimonials, what his propagandist Eric Merola likes to tout as patient success stories, patients like Hannah Bradley, Laura Hymas, Mary Jo Siegel, and Tori Moreno, all of whom featured prominently in one of Merola's movies promoting Burzynski. The problem is, although these cases seem compelling on the surface, when you look at them in more detail inevitably they turn out not to be very good evidence that Burzynski's antineoplastons or "personalized gene-targeted cancer therapy" can result in better outcomes than the existing standard of care.

So it was that when I wrote about Fabio Lanzoni teaming up with Eric Merola to promote Stanislaw Burzynski, multiple people asked me about a new patient, one who appeared for the first time in a Burzynski advertisement—excuse me, Q&A by Eric Merola. This is a patient who of late has been very active on Twitter both attacking Burzynski critics and singing the praises of Stanislaw Burzynski, all the while touting how Burzynski cured her stage IV triple negative breast cancer. She has also recently become one of the main users of the @BurzynskiSaves Twitter account, which formerly was run by someone whom many Burzynski critics suspected to be an employee of the Burzynski Clinic but was recently apparently handed off to a cadre of Burzynski patients, as revealed in Merola's last video. Clearly, she is a new recruit to the patients whose testimonials Burzynski and Merola use to promote the Burzynski Clinic. Her story, that Burzynski saved her from stage IV triple negative breast cancer, seems very compelling at first glance. But is it?

It is with a bit of trepidation that I tackle this case, because, no matter how careful, respectful, and nuanced I am, I can reasonably expect that I will be accused of "attacking" this patient. It is even possible that someone will call my university again to complain about me. Of course, I'm doing nothing of the sort and have no doubt that this patient genuinely believes that Burzynski saved her. My analysis of her anecdote, however, leads me to believe that she is probably not correct in attributing her survival to Burzynski. I also know that to a patient who is not an expert in cancer, a story like hers can seem all the world as though Burzynski really did save her and realize that I'm not going to change this patient's mind, no matter what I say. I do, however, want to critically examine her story, as told on various pro-Burzynski websites, because her story is being touted by Burzynski and Merola as yet another "success story" that proves that Burzynski can cure cancers that others can't.

The patient, Sheila Herron, touts her experience as a nurse for over 30 years and is a passionate defender of Burzynski, so much so that she sometimes gets a bit—shall we say?—carried away, invoking stormtrooper analogies and calling Burzynski critics "fascists," then trying to make nice with them not long after. She was diagnosed with triple negative breast cancer three years ago, and that happens to be my area of specialty. Triple negative breast cancer is an aggressive subtype of breast cancer that lacks hormone receptors or the HER2 receptor. Stage for stage, it tends to have a worse prognosis, with a higher recurrence rate and lower survival rate. Worse, contrary to hormone receptor positive breast cancer, which can be treated with Tamoxifen or aromatase inhibitors (drugs that block the action of estrogen) or HER2-positive tumors, which can be treated like Herceptin, triple negative breast cancer has no molecular targets for therapy that have been identified and validated yet. As a result cytotoxic chemotherapy is the only systemic treatment. It turns out that triple negative breast cancer is often very sensitive to chemotherapy—more so than estrogen receptor-positive cancers, by and large; the problem is that it rapidly develops resistance.

So what's Ms. Herron's story? The official version is recounted at—where else?—the Burzynski Patient Group's website. There's also a version of her story on Cancer Compass, which touts itself as a website that advocates the use of alternative cancer therapies. (No kidding.) On the Burzynski Patient Group website, the story is told thusly:

In Nov. 2009 I developed pneumonia and had a chest x-ray which showed a mass on the left upper lobe of my lung. This proved to be cancer. The PET scan leading up to the lung surgery, showed masses in my breasts. I had a left upper lobectomy in Nov. 2009, and bilateral mastectomies with reconstruction in Feb. 2010. I chose to take the holistic route, as I have seen the ravages that traditional chemotherapy inflict on the human body in the patients I have cared for. I will attach the link to the "Cancer Note" I wrote on Facebook which describes the steps I took to build up my immune system. (Let me know if the link doesn't work, and I will cut and paste it to you. A few weeks ago I had a local recurrence of my breast cancer and had surgery to remove it. This led me to call the Burzynski Clinic

It's not entirely clear from the account above (at least not to me) whether Ms. Herron had an early stage lung cancer successfully treated surgically and then was soon after diagnosed with breast cancer (in other words, had two independent primary tumors, each successfully treated with surgery) or whether her lung cancer was actually a metastasis from her breast cancer that was resected, followed by her diagnosis with breast cancer and successful surgical treatment (i.e., stage 4 disease). Her Cancer Compass account doesn't help in this regard, as it concentrates only on her treatment with Burzynski (and, as we will see, a whole lot of other woo), and her initial treatment was before she found her way to the Burzynski Clinic, although she does say she has "thanked my cancers (lung and breast) for all they have taught me, and have told them they can leave now," which sounds as though she had a lung cancer and a breast cancer. A little deeper digging was required.

It turns out that there is more information on this part of Ms. Herron's treatment odyssey on Facebook, contemporaneously dated April 2010. In a comment, she writes:

My cancers were discovered in Nov. 2009.

By MIRACULOUS good luck I got the flu (probably H1N1). I got pneumonia, went to urgent care and they did a chest x-ray, which showed a mass on my left upper lobe. I had a CT the next day, a thoracic surgeon consult 3 days after that, then a CT guided biopsy, a PET scan and a pulmonary function study done in the 3 days after that, and the next week had a mediastinoscopy/bronchoscopy and video assisted left upper lobectomy (12 days after the first x-ray- an example of the allegedly "terrible" healthcare system we have. In Canada I might just now be seeing the thoracic surgeon or having the PET scan. I am SOOOOO grateful to live here!!!). The PET scan I had (where they inject radioactive sugar and do a CT looking for metastastis) showed no lung metastasis, but a weird area on my left breast. After I recovered from the lung surgery, I had a mammogram, and an ultrasound guided biopsy (it turned out to be another, seperate cancer from the lung). I then had an MRI and underwent bilateral mastectomies with reconstruction in Feb...

My final reconstruction surgery will be May 4th- the new and improved me, breast cancer free.

What a miracle that flu was!!!!! I would have been walking around oblivious to both cancers if I hadn't needed that initial chest x-ray for the flu. My breast cancer turned out to be in both breasts as well. Amazing!! It never showed up on mammograms, (35% of breast tumors don't- surprise to me!)

I am taking the naturopathic route vs/ chemo/radiation and am doing great. There is SOOOOOO much we can do to help our incredible immune systems heal our bodies and/ OR (preferably) STAY healthy!! I was certainly not paying attention, or taking care of my body before this happened.

I AM now.

In a comment made on the Burzynski Scam blog, Herron writes (you'll need to scroll down a bit):

I was diagnosed with Adenocarcinoma of the left upper lobe of my lung in Nov. 2009, and had a lobectomy. The pre-op PET scan found my breast cancer, which turned out to be Stage III triple negative invasive ductal carcinoma. I went the naturopathic route vs/ chemo and radiation, because as an RN for 34 years, I have seen the ravages the traditional route can cause.

This clarifies things. Up to this point, these accounts are most consistent with two separate primaries, one an adenocarcinoma of the lung, which was resected thoracoscopically, and a second cancer in the left breast, arising from the breast. Consequently, up until this point, what we most likely have is a woman who was unfortunate enough to have two different cancers in two different organs, but fortunate enough that both of them were sufficiently early stage that they could be successfully resected surgically. Like so many testimonials I've discussed before, she refused chemotherapy and radiation in favor of lots and lots of woo, including naturopathy, massive changes in diet, green tea, juicing, Resveratol, reiki, "detox," and acupuncture. (And that's not all.) As is so frequently the case, by refusing adjuvant chemotherapy and radiation, which are the "icing on the cake" for surgery in breast cancer that decrease the chance of recurrence, she decreased her chance of survival. I did a bit of prognosticating using Adjuvant! Online, which allows me to estimate 10 year survival rates for cancers with various characteristics. If Ms. Herron had a stage III cancer, that means it was either rather large (greater than 5 cm), had a lot of positive lymph nodes, or both. According to Adjuvant! Online estimation, a patient with a stage III triple negative cancer treated with surgery alone has, depending on the specific features of the tumor, between a 24% and 57% chance of being alive in 10 years. (I ran the estimate using the worse features I could think of consistent with a stage III triple negative cancer, ran it again with the most favorable features I could think of, using an estimate of Ms. Herron's age to be around 58 based on her time in nursing.) Sure, those odds aren't fantastic, and I doubt she's at the 57% end of the scale, but even though Ms. Herron's odds were most likely less than 50-50 without adjuvant chemotherapy, they weren't so horrible that it would be considered highly unusual or rare for her to have survived.

So why did she go to the Burzynski Clinic? She tells the tale in multiple places. First, here's a continuation of the account on the Burzynski Scam blog:

I developed a small localized recurrence in Aug. 2011. After surgery, I went to the Burzynski Clinic in Sept. 2011. They ordered a PET scan which discovered my T-2 spinal metastasis. I started on his treatment and was followed up by an oncologist near me who works with Dr, Burzynski for my monthly labs and an injection. Twelve weeks, almost to the day of starting his treatment, my cancer was gone, as verified by my follow up PET scan Dec. 22, 2011. The radiologist had the before and after films up and showed me that it was all gone and that “there is no active cancer anywhere”. This treatment had no side effects, I did not lose my hair, and my monthly labs remained normal. How many other cancer treatments out there can say this? NONE!!!

And on the Burzynski Patient Group website:

I was encouraged to stay a few more days. A whirlwind of actions occurred the next 2 1/2 days. I had thorough blood and urine work-ups, as well as an echo-cardiogram and a PET scan, which was miraculous, for the PET scan showed a metastasis to T-2 on my spine. I was started on his medication on the first day and then low dose chemo for my metastasis and an injectable to keep my bone strong and prevent further metastasis. It is a miracle!! I would not have known about this situation until it had spread further, or until, possibly, my spine had a pathological fracture, which, that high up, could have caused quadriplegic, so I can, and I DO, say that Dr. B and his team have already saved my life by finding this tumor and getting me on their gene targeted regimen to remove it.

So about a year and a half after Ms. Herron's radical surgery rendered her disease-free, she developed a local recurrence. This is unfortunate. We also don't know for sure whether she underwent radiation therapy, although the story sounds very much as though she did not. Radiation therapy is indicated after surgery for a stage III breast cancer, because that can greatly decrease the risk of a local recurrence, even after a mastectomy. In any case, this recurrence must have been small, localized, and amenable to resection with a wide margin. In this, Ms. Herron was again fortunate, because all too frequently chest wall recurrences like hers presage metastatic disease, and all too often they tend to be too extensive to be amenable to a simple surgical excision.

But, wait, you say. Wasn't the spine lesion on PET metastatic disease? The answer to that question is: Maybe. We don't know. Why do I say that? The reason is simple. As far as I can tell, there was never a tissue diagnosis to prove that that T2 lesion was in fact metastatic disease to the spine. Most oncologists will not treat a breast cancer patient for metastatic disease without first doing everything within reason to obtain a biopsy and thus proof that the lesion is a metastasis. Just as important, tissue allows the oncologist to look at markers; sometimes estrogen receptor-positive tumors turn negative as they metastasize or sometimes the HER2 status changes. Such information is very useful for planning therapy, rather than just basing additional therapy on the original surgical specimen. I've looked around, and nowhere have I been able to find an account of Ms. Herron's treatment in which Burzynski got a biopsy of the spinal lesion before initiating treatment. PET scans can be misleading; they can have a not insignificant false positive rate. Actually, in fact, depending upon the clinical situation, they can have a high false positive rate. There are lesions on PET that can mimic metastasis. For instance, fibrous dysplasia of the bone can mimic skeletal metastases, as can osteonecrosis, inflammatory lesions, and others. Quite frequently, these lesions disappear when a patient is rescanned a few months later.

True, there are exceptions to the "tissue rule," such as if it's unsafe to biopsy due to location or patient comorbid conditions or if the lesion is so characteristic on an MRI or CT of the involved vertebrae that there is no doubt. (One notes that no mention of imaging of the spine is made other than the PET scan.) Even accepting those exceptions, a tissue diagnosis would still be essential, especially in this case, before starting treatment of bone metastases. Remember, this is a patient who apparently had two different cancers diagnosed three and a half years ago. Although less likely than breast, the spine metastasis, if it was real, could have been lung cancer. However, despite every indication for obtaining a tissue diagnosis, as far as I can tell Burzynski apparently never got a biopsy of the lesion detected on PET scan before beginning treatment in order to confirm metastatic disease and identify tissue type. In retrospect, given the clinical behavior of this "metastasis," most likely what happened is that Burzynski treated a false positive PET lesion, and it did what nearly all false positive PET lesions do: It disappeared within a few months.

Alternatively, it is possible that this lesion was a metastasis and that the chemotherapy that Burzynski administered shrank the tumor to microscopic disease, but, most likely, did not eliminate it entirely. Personally, I'd prefer the first possibility over the second. No, the reason is not because it would mean that Burzynski's "personalized gene-targeted cancer therapy" doesn't work, but because the first possibility would imply a good chance of long term survival for Ms. Herron. The second possibility would be much less favorable for her; it would mean that, sooner or later, her cancer will likely recur. I do not want that to be the case. Regardless of my wishes and whatever the case really is, without a report of a tissue diagnosis, it's impossible to distinguish between the two possibilities. The point, of course, is that Ms. Herron's case, like virtually every other Burzynski patient case I've analyzed, is not convincing evidence for an antitumor effect due to Burzynski's treatment, although it is also possible that her story could mean an antitumor effect due to Burzynski's "everything but the kitchen sink" approach to combining chemotherapy and targeted therapies. As is always the case whenever Burzynski mixes and matches chemotherapy and targeted therapies, he might have gotten lucky, and Ms. Herron's tumor was responsive to the cocktail. Without a lot more information, we just can't tell which possibility is most likely. We can tell, however, that it's unlikely that Burzynski is the cause of Ms. Herron's good fortune.

Finally, Ms. Herron is not undergoing antineoplaston therapy, but rather Burzynski's "gene-targeted therapy." This led me to wonder: On what basis is he "targeting" his therapy? As I've recounted before, Burzynski usually sends off blood and tissue samples to Caris for testing. The Caris Target Now™ test, which since my discussion of Burzynski's "personalized therapy" appears to have been renamed Caris Molecular Intelligence and is now available at more levels of service (although its reports look much the same to me), is nothing unique to the Burzynski Clinic. Anyone who is willing to pay for it can have it, and the report will be the same. Given that Burzynski appears not to have gotten tissue before treating Ms. Herron, what did he send to Caris for testing? Maybe he sent blocks from her original tumor. Who knows? In any event, there is as yet no convincing evidence that the Caris tests (or any of the other competing tests) result in better outcomes.

I'd like to conclude by saying that I wish Ms. Herron well. Really, I do, despite her intemperate behavior on Twitter. That's actually why I hope that Burzynski really did treat a false positive PET lesion, because that explanation for her good fortune would be most consistent with its continuing indefinitely, in contrast to an actual treatment effect, which would imply eventual relapse. When it comes to Burzynski, on the other hand, I'm not nearly so benevolent. In my ever-Insolent opinion, he and his propagandist Eric Merola are cynically using patients like Ms. Herron as human shields to deflect criticism. I can put up with a lot from cancer patients, even Burzynski cancer patients, and never respond in kind. Burzynski's activities I cannot countenance.

oracknows Wed, 05/08/2013 - 22:00

Tags

Clinical trials

Skepticism/Critical Thinking

http://scienceblogs.com/insolence/2013/05/08/eric-merola-and-stanislaw-…

I don't know, but it seems to me that a complete spinal cord lesion at T2 would lead one to be paraplegic not quadraplegic as the nerves to the arms would not be affected. I know I am nitpicking but it always bothers me (as a physical therapist) the way people will inflate the possible damage that could be done.

It is not hard to imagine the psychological stress of finding a lesion on the PET scan and then the overwhelming sense of relief once it was gone. Considering that Ms Herron had undergone and recovered from at least 3 surgeries and was not subjected to a fourth, it is no surprise that she is psychologically vulnerable. Let's hope that the last lesion was just an artifact. The effect of recurrence in this manipulated patient is likely to be devastating. Of course for Dr. B, the patient will have become old news and a new "miracle" will replace her. Thanks for keeping a spotlight on this lowlife.

Another reason to biopsy the T2 lesion (aside from confirming malignancy) might be to differentiate lung from breast metastasis, assuming therapy would differ depending on the primary site. If Burzynski's chemo cocktails are "individually" prepared, this strikes me as a possibly essential step.

I can reiterate what Orac said about false-positive PET scans. We see this quite often. It would certainly be a more impressive testimonial if there was proof that the spinal lesion was metastatic tumor and not an unrelated, benign anomaly.

It's puzzling that Ms. Herron recounts having gotten part of her left lung removed, when a PET scan had also showed a "weird" breast lesion. You'd think someone would have wanted to biopsy that first to exclude the possibility of a lung metastasis from the breast.

*In case anyone is wondering, adenocarcinomas of the lung and breast (invasive ductal carcinoma is a form of adenocarcinoma) can be differentiated under the microscope, frequently on the basis of their morphology but also due to differing expression of markers that can be evaluated through routine immunohistochemistry.

This is why you're such an invaluable asset in the fight against cancer (and other) quackery. You critically examine and dissect the available evidence using every possible tool available, and give thorough explanations as to why the claims cannot be trusted.

What's interesting is how these "survivors" (or even family members of dead patients who still shill for Stan) alter their accounts over time. The internet remembers everything, and in some cases stories told in 2013 will differ markedly from earlier versions.

I just hope she is cancer-free and remains so, given the type of recurrence she's likely to have.

In Canada I might just now be seeing the thoracic surgeon or having the PET scan. I am SOOOOO grateful to live here!!!).

Oh, bullshit.

As a canadian, I am so freaking tired of hearing that crap.

1) Cancer patients receive treatment as fast in Canada as they do in the US, and I know a number of cancer patients who can testify to that

2) They receive the same standard of care as they do in the US

3) The only difference is that don't check your credit line before they do

4) Its major failing with regard to cancer patients, at least in quebec is that it is difficult for them to enrol in clinical studies, or to get approval from the government to pay for a drug with no demonstrated efficiency. But nothing keeps you from buying it yourself.

If Burzynski’s chemo cocktails are “individually” prepared, this strikes me as a possibly essential step.

Unless "individually" means according to the person.

Burzynski doesn't strike me as understanding either the biology of cancer or genomics. It wouldn't surprise me in the least that he considers "cancer" to be a single entity, like a lot of cancer quacks.

Fantastic post. That answered a lot of my questions.

@Kemist - it's the same here with the NHS. You get whatever the current best practice is, but you're free to pursue private health.

Also, not sure what it's like in Canada but here in the UK, even private care is nowhere near as expensive as care in the US. I have private, comprehensive coverage for £40 a month. No excess, no co-pay.

@elburto

There is no "private care" here for things like cancer.

What you can get are things like medical imaging, plastic surgery, family medicine and orthopedic surgery in private clinics - low-risk stuff, even if some people have ended up dead from low standards in private plastic surgery clinics.

Private plastic surgery clinics exist because the RAMQ (the organism that oversees our single payer health care) won't cover expenses that have nothing to do with health per se.

Private orthopedic clinics have opened due to long waiting lists for orthopedic surgeries, and (borderline illegal) private family practice because rich suckers think their little snowflake's sore throat is more important than a poor person's heart attack*.

It is illegal in Quebec to sell private health insurance, except for drugs, dentists, and secondary care like physiotherapy, ergotherapy, consults with psychologists, ect.

It is however legal in Alberta.

*No, I am definitely not a proponent of private healthcare systems.

@Kemist #10:

"It is illegal in Quebec to sell private health insurance"

Translation: It is illegal for a middleman to profit from the misfortune of others.

I like the sound of that.

Personalized gene-targeted cookie, please.

This treatment had no side effects, I did not lose my hair, and my monthly labs remained normal. How many other cancer treatments out there can say this? NONE!!!

And that's another canard that I'm definitely fed up with.

Most people have a very simplistic notion of what constitutes "chemotherapy", and that's understandable. I understand however that this lady was a nurse for 30 years, so she definitely should know better, especially if she has worked with cancer patients.

"Chemotherapy", like "cancer", is not a single entity.

No, most types of chemotherapy are not pleasant. But not all of them make you lose your hair. Not all of them are even given intravenously. Some have minimal side effects - at least, side-effects that are much less severe than what Burzynski patients describe.

Burzynski fools patients by simply renaming what he gives them as "not-chemo" or "gene-targetted chemo" (whatever that might mean when you don't even understand, or even less study what you're supposed to be targetting) and by trivializing side-effects which are not what anyone sane would call mild.

I'm embarrassed that this woman is a nurse. Orac needs to share the brown paper bag mask with lilady and me.

I hope she recovers. I hope the chemotherapy that Count Stan has her on cures her. I've actually reviewed medical records from patients on his protocols. He uses FAR more chemotherapy, and in stranger combinations, than most trained oncologists. And his "non-toxic" antineoplastins -even orally - need to be slowly ramped up, and patients are questioned regularly for side effects and toxic levels.

But I wish harm to no one. Not even those whose charts I reviewed - who had relapses, died, or stopped his treatment due to the toxic effects (I honestly can't recall 1 chart I reviewed where the person was cured...and most had had conventional treatment also. Those who hadn't...didn't recover).

I only feel sorrow for them.

Kemist - Not a fan of private healthcare either, but I'm not the one paying for it. It's an employee spousal benefit provided by OME's employer.

Also, private care here is an adjunct to the NHS. You still have to be referred by a GP for consultation for your hip replacement/MRI scan/sigmoidoscopy or whatever.

The only exceptions are for cosmetic procedures. Often care is still provided in NHS hospitals by NHS doctors working outside of their contracted NHS hours. The fees they pay to the NHS to be able to do that can seriously help out a unit that's [CONTENT DELETED DUE TO EXCESSIVE POLITICAL RAGEWANKING].

Hi all you commentators on my life. I have enjoyed reading your comments, as well as the BLOG. Thought the BLOG is well written in the word department, it truly misses the mark in the accuracy department, and since we are obviously not on the friendship level, I will not make the effort to correct the errors. Suffice it to say, Dr. Burzynski HAS saved my life and my mobility, and continues to work on my behalf to keep it so. I don't care what the physical therapist here nit picked about, I am not paralyzed from my T-2 level down. I am alive. I am active. I am happy. I am well. My whole medical team, which, by the way, contains 2 other traditional oncologists outside of Texas who work with Dr. Burzynski, agree. I must truly have gotten under your skin to have warranted this much effort, and for that I am truly pleased. Your attacks on this wonderful man, who none of you have met or know, based purely on BLOGS, etc.. is shockingly unscientific, and would make me ashamed to be a part of. Since none of you have my medical records, op reports, scans, etc... all you can do is guess, other than reading dated entries on Facebook. But hey, go for it.

Thanks, Kemist. You beat me to it.

When my mother was diagnosed with possible breast cancer (turned out to be a DCIS, don't remember what stage, with some involved lymph nodes), she was in the oncologist's office the next week after seeing the GP. The elapsed time was something on the order of five days, including a weekend. Contrast with all the Americans I know who don't even have a regular doctor...waaoh.

By the way, thanks, Orac, for all your writing here. All your informative essays on cancer over the years (I've been reading since I haven't got a clue, but long before Scienceblogs was a thing) really demystified the process for me and helped me stay sane and hopeful while my mom (and, let's be honest, my late cat who died of lymphoma) was going through all that. I owe you one. If I ever meet you, allow me to buy you a beverage of your choice.

"They call me an anecdote," she complains on Twitter.

But that's the whole point...! One person's story is always an anecdote, by definition. She lived, good for her. But other Burz patients have died. Which is more common? Who's the anecdote?

All Burz has to do is post his 35 years of patient data online (which could be done in a week), thereby proving beyond doubt that his patients have better survival rates than normal, and he wins.

The skeptics would be silenced. The supporters vindicated. Millions of lives would be saved. Burz would become a billionaire and win the Nobel prize, his place in history assured.

Yet he doesn't do this because...?

Anyone?

I see nurses who peddle woo stories as quite dangerous, possibly even more so than doctors who do. Doctors have a reputation (earned in some cases) of being distant and remote, whereas nurses are seen as being much more directly involved in caring for patients. So when someone makes a statement like "because as an RN for 34 years, I have seen the ravages the traditional route can cause" people tend to pay attention. I mean, she's a nurse! has been for 34 years! She's probably seen lots of cancer patients!

But the trouble is, she possibly hasn't. What most people don't realise is that nursing can be just as specialised as doctoring. I just did a quick search online of vacant positions in the Health organisation that employs me - and most of the nursing positions in specialised fields (eg emergency, ICU, obstetrics) require formal nursing qualifications in that field. I couldn't find any open oncology or related positions, but I have a friend who happens to work at my region's main cancer treatment centre, and I know she had to go through quite a bit of training when she got the job (and before she got the job),

So if someone claims health expertise based on their nursing experience, my question would be, "have you worked in that field? Because if you haven't worked as an oncology nurse, don't insist you know all about cancer treatment, COS YOU DON'T."

Did you have the lesion on your spine biopsied, Sheila?

She's filed a complaint against Orac with his state medical board and his employer for being "unethical."

Hey Sheila,

Don't forget to read more about you on the second Fabio post. More fodder for your complaint.

Well, I did some more processing and reflecting since my first comment and have come to the decision that this is something that warrants being submitted as an official complaint to your State Medical Board. I have been on the cancer ride, have had to look potential death in the eye and then get to read a BLOG like this, written from a foundation of prejudice and bias right out of the gate. By making medical status and care assumptions based on dated postings I made in Facebook, with which you missed the accuracy mark repeatedly and big time, you crossed the line. And, based on some of the comments I read here, your posse bought it as fact. This is very revealing to me. I feel offended by this, for myself, as a person fighting for her life, and for my Dr. who you have again and repeatedly attempted to mock and demean, when you have none of the facts right. This really crossed the line. If I had asked for your medical opinion, if you had all my records and scans, this would be one thing, but you had none of those. This is unethical behavior for and MD. An official complaint is pending. I hope this will make you think before you do this to another patient, and that you use some real scientific reasoning, not just arrogance and your MD as credentials.

She’s filed a complaint against Orac with his state medical board and his employer for being “unethical.”

If having a Twitter meltdown constitutes "filing" something, I suppose. What's she on about with the "Wow, my comments are gone ... Whassup" routine?

Just typical paranoia. She doesn't realize that everyone's first comment here is moderated and approved. It's simply to prevent spam, not to censor anyone's free speech. After that her posts will appear immediately, unless they contain more than two links. Again, simply to prevent spam.

Wow, Sheila is popular today:

http://www.skeptical.gb.net/blog/

I remain curious as to what acronym the insistent full caps on "BLOG" is meant to denote. Anyway...

Well, I did some more processing and reflecting since my first comment and have come to the decision that this is something that warrants being submitted as an official complaint to your State Medical Board.

I suppose it's too late to move to Texas in order to immediately neutralize this threat.

I suppose it’s too late to move to Texas in order to immediately neutralize this threat.

Best Comment of the Day Award goes to Narad.

Sheila forgot to end her threat comment with the phrase "govern yourself accordingly."

Since I unfortunately share the diagnosis of triple negative breast cancer with Sheila, I'm particularly interested in this discussion. As you mentioned, Orac, we TNBC patients have an especially high risk of recurrence and not a great prognosis, so I'm acutely aware that at any point I may need additional treatment for my own life, so I'm always on the lookout for new developments or options. If Dr B really has the cure they claim, I'd be first in line to spread the word. Unfortunately, I think Mark McAndrew nailed it:
"All Burz has to do is post his 35 years of patient data online (which could be done in a week), thereby proving beyond doubt that his patients have better survival rates than normal, and he wins.
The skeptics would be silenced. The supporters vindicated. Millions of lives would be saved. Burz would become a billionaire and win the Nobel prize, his place in history assured.
Yet he doesn’t do this because…? "

For me, the bottom line is why all the dishonesty? Why won't he publish? Why aren't patients like Sheila pushing for him to document their miracle cures so other patients can benefit? Why does Sheila bother to pretend outrage (just moments after she was all giddy about being written about?!) instead of offering more information and details about her case and answering questions? I'm all for patient privacy but for crying out loud, if you're going to put yourself out there as a spokesperson to promote a miracle cancer cure, you damn well need to show some evidence and facts. Bah!

Oops, forgot to say thanks to Orac for all the detailed explanations you've shared. Breast cancer patients like me appreciate your willingness to help deconstruct dangerous quackery like this, and our lives depend on honest, accurate, and complete information. Thanks again!

thenewme,

I thought of you yesterday as I read Sheila's Cancer Compass page (Orac has the link above in the original post). A list of pretty much everything except black salve..

thenewme,

According to some Twitter fans, Burzynski has all the evidence and has even given hard copies to some patients. (One fan even said testimonials are more important than trial data.) I guess you play to your biggest strength.

Maybe that evidence is contained in the "two-and-a-half-million pages" of trials he submitted to the FDA.

#16 We are very glad to hear you're healthy! I for one hope you will remain so.

Please tell Burzynski to publish his clinical trial results in a reputable, peer-reviewed journal, if you believe in his work! Then we will all begin to believe in his work.

Seriously, it is that simple.

@MSII,
Yeah, I saw her Cancer Compass page with her laundry list of Woo. I also noticed all the affiliate links to more woo. The more I'm around this stuff, the more cynical I become about the ratio of those who actually believe in woo versus those who pretend to believe it in order to sell their crap to others.

Among their thousands and thousands of miraculously cured patients and millions of binders full of evidence, not one single complete clinical trial publication is to be found? Hmm. I'd be happy to publish it for everyone to see if I were a success story. Who wouldn't?

@Khani,
Absolutely. I think we're all happy she's doing well but baffled why she doesn't want the same result for others.
If she really cared about others, instead of playing her Jekyll-Hyde Twitter games she could scan and upload the evidence she claims to have.

Poor delusional Sheila. She put her anecdotal cancer survival story "out there" and now is indignant that science bloggers have analyzed the partial medical history she provided. How about proving that Orac is wrong, by "filling in the blanks", Sheila?

When you made that complaint to the medical board, did you enclose your testimonial, along with the medical advice you are providing on the internet i.e. practicing medicine without a license? You really should be concerned about your nursing license, because nurse licensing boards are far more strict than the Texas Medical Board.

http://cancercompassalternateroute.com/testimonials/healing-with-dr-bur…

this is something that warrants being submitted as an official complaint to your State Medical Board

How do I go about filing a counter-complaint? Seriously.

I hope this will make you think before you do this to another patient, and that you use some real scientific reasoning, not just arrogance and your MD as credentials.

Please don't heed this threat. I, for one, appreciate these "case studies." It's helpful for non-physicians like me to understand how what appears to be evidence for a cure is, in reality, something else entirely. Maybe future reexaminations of patient testimonials can be written without naming names (but still providing relevant links). That way, people who Google themselves won't immediately know when you're writing about them, and they therefore cannot complain, issue childish threats, and harass you and your employer -- well, at least not right away.

Dear Sheila.

I hope you continue to do well with your health. Really I do. You have seemingly managed to reach that upper echelon of individuals who have apparently done well from the Burzynski clinic.

You are the famed 1% of the 99% confidence interval. The outlier in the data - the most improbable of the improbable. Someone that has managed to survive despite being treated by the clinic.

Of course, given the extensive laundry list of alternative medicine treatments you've tried - I don't see how you can attribute any success to the clinic - too many confounders exist. But that's what the clinic hopes for.

Burzynski is a charlatan. He refuses to release his 'data' from the 'clinical trials' that he's been pursuing for at least a decade. Why is that? What is he hiding? The fact that his 'treatment' is bunk?

Couldn't have said it better, Darwy.

Sheila, it's really simple, there are only two possible scenarios at play here:

Either, Burzynski is a lying scam artist preying on the vulnerable and the dying, and profiting from their desperation

He truly does have the cure for hundreds of types of cancers*, but he's keeping it to himself so that only he can profit from it, and only patients with wads of cash can afford it. This means he's content to let millions of people die every year, unless they can get to his clinic.

Either way the chips fall, he's filth. It's lose/lose for the terminally ill, and win/win for Stan.

* I presume you know that they're all different diseases, with different causative agents and different responses to treatment?

Christine - Sheila is currently a perioperative nurse. Of course this proves nothing about her experiences. I offer it only as an answer to a question. She's been a nurse a long time and no doubt has had many valuable experiences.

I'd like to to know however when Sheila decided that the "naturopathic" route was no longer the right one for her, and decided that chemotherapy by Burzynski's hand was ok? What changed her mind?

It would probably have more impact were Sheila to prove Orac wrong than make a complaint. However, since the response is another attack and no correction I guess all we can do is presume that he is closer to the truth than she'd like.

This by the way Sheila, is how evidence works. You're saying that your testimony is enough to prove Burzynski's treatment works. Above you see your testimony interpreted by someone with a lot of knowledge and experience with your disease. You say that Orac's interpretation is incorrect, but offer nothing to back up that assertion. Yet you want us and more importantly desperate cancer patients to accept your anecdote and others like it as proof, and eschew proven treatments in favor of Burzynski's. If your anecdote should be enough to prove efficacy, then Orac's account of it shouldn't be as full of errors as you suggest.

The clinical trial system is the only way we have to protect patients against dangerous or ineffective treatments. It's not perfect. It's difficult to negotiate. Without it we lay vulnerable to an unstoppable flow of vultures ready to take advantage at sick people when they are at their lowest. But until Burzynski is prepared to present his data for scrutiny, he will continue to invite this level of opposition, because some of us do care about quality medical care. We're concerned about the proliferation of vultures that prey on the unwell. The published data may not stand up to the scrutiny, but at least it was presented. Instead, it's hoarded, with patients and their anecdotes thrown up as shields in an attempt to absorb and deflect the scrutiny that rightfully should be on Burzynski and his trials alone.

To be honest, I fail to see how discussing and analyzing information publicly posted on websites and blogs is in any way an "attack" or "unethical." I've done this with cancer cure testimonials from a number of patients, and not just Burzynski's. In fact, I've been doing this sort of thing intermittently with cancer cure testimonials of many sorts for years, since 2004:

http://oracknows.blogspot.com/2004/12/understanding-alternative-medicin…

So have other physicians:

http://www.cancerwatcher.com

My readers recognize this as a valuable service, because it helps them to understand why such stories are usually not the slam-dunk evidence of a cancer cure that they are being presented as.

Most such testimonials get their persuasive power from the passionate belief by the person telling the anecdote that she was cured of a hopeless cancer, lack of understanding of cancer biology and treatment, etc. In any case, I simply looked at how Ms. Herron told her story and suggested that it isn't the slam-dunk evidence that Burzynski cured her that it is being advertised as by Eric Merola. Certainly, it's possible that Burzynski cured her, but there is also considerable doubt to me that he did, based on the timeline of events told by Ms. Herron herself. None of this means that Ms. Herron is lying (as she might claim I'm accusing her of). It simply means that she has drawn conclusions from her experiences that are not supported by science, in my opinion.

Now, as I said before, I understand that she's really passionate about believing that Burzynski saved her. I also understand that she views criticism of Burzynski as personal attacks on her. That is, of course, her right, but that doesn't mean that they are.

It is not my intent to attack Ms. Herron in any way, nor, do I believe, have I. In fact, I bent over backward to be civil and take her beliefs into account. Nor have any of her comments been blocked. The first one went into moderation, as comments from all commenters who have never posted a comment here before do. I approved it as soon as I saw it.

Also, if I have made any errors, Ms. Herron is, of course, free to point them out, and I will correct them. I assumed that her postings about her battle with two cancers on various websites provided the information she wanted to provide.

I have to say it mightily p!sses me off when people place a testimonial, especially for cancer, in the public domain and then complain when it gets analyzed. Testimonials of this sort are clearly intended to persuade people to pursue a particular treatment, and it is important that they are open to criticism, especially informed criticism such as Orac's in this case. People with cancer have a right to accurate information to enable them to make an informed decision about what treatment they wish to pursue. It seems to me that the sort of censorship Ms. Herron appears to wish to apply would take this right away from other cancer patients.

Sheila, you are actively promoting an unproven treatment using your details, and those of others, in a PUBLIC place. This means that people have the right to discuss those details. If you are happy to have your case used to publicise Burzynski and try to persuade other patients to go there, then others have every right to challenge those details. I'm sure your regulator would be fascinated to hear how you've behaved, but we won't go there because that would be stooping to a level that only Burzynski and his team use.

Not once have you even attempted to address the very real and sensible criticisms of Burzynski. I understand that you're probably not able to understand the issues, but your time would be much better spent persuading him to publish the data from his trials rather than abusing his critics.

There's another patient testimonial on that Cancer Compass page (on the right side) that, while not relating to Burzynski, illustrates to me how self-deluded alternative devotees can be.

A woman with breast cancer used black salve (ugh!) to "remove her tumour" (there's a gross photo that accompanies the narrative) and then she adopts a Robert O. Young alkaline diet accompanied by live blood analysis. Quackery squared.

Anyway, after a year or so (I forget the actual timeline) she updates the story by saying her latest live blood tests are "bad" and she has to "fight this thing," implying there are signs the cancer has returned. She blames this on the fact that she lapsed from the alkaline diet, not because of the fact that the damn black salve didn't work, and never works, in the first place. The tenacity to the belief in the black salve is similar to the tenacity of belief that Burzynski's protocol cures.

Cognitive dissonance or simply a refusal to admit she was wrong about the black salve (bs, appropriately)?

I have to say it mightily p!sses me off when people place a testimonial, especially for cancer, in the public domain and then complain when it gets analyzed.

That's how I used to react, but not so much anymore. Now I react more with resignation, because I've seen it so often. People who believe an alternative cancer cure has cured them of an incurable cancer seem to conflate what they write on the Internet with their private medical records, when the two are not the same. I would never, ever write about a cancer patient's clinical records without express written (and notarized) permission to do so. They are private, and I am both honor- and HIPAA-bound not to do so. However, a description posted on the Internet in a public forum is another beast entirely. It is not medical records. It is public speech, and the First Amendment allows me to bring my medical knowledge to bear in discussing it. Nor is it unethical because I have not breached patient confidentiality (there is none for information posted on the Internet), and I'm very careful to point out (repeatedly, in fact) the limits of what we know from these accounts. You will note that I spun alternate scenarios based on what might have happened one way or the other and hedged my speculation very carefully, liberally using words like "probably" and "possibly." Even in the case of patients who have allowed actual medical records to be posted on either Eric Merola's website or the Burzynski Patient Group, I realize that those records are most likely carefully chosen to support the message being promoted. I also note that discussing such medical records similarly is not a breach of HIPAA, privacy, or doctor-patient confidentiality because they were posted in a public domain accessible to anyone.

Even though I've seen it again and again, although I no longer become angry at how some people post their cancer stories on the Internet on a public forum and then become enraged when someone like me discusses them critically, I must still confess to not a small degree of puzzlement. If you don't want people talking about your medical history, then you shouldn't discuss it on the Internet in a public forum, where anyone from anywhere in the world can read it. Once your story is out there "in the wild," so to speak, you can no longer control what people say about it. That's just common sense.

I rather expected that Ms. Herron would eventually find this post, which is why I mentioned my trepidation about writing it. She has complained to my university in the recent past. Fortunately, the dean on whose desk the complaint was social media-savvy and recognized immediately that I had done nothing wrong, as did the university attorney. However, as has been pointed out above, Ms. Herron is using her story to promote Dr. Burzynski. That is her choice, and she has every right to do so. Analyzing her publicly posted story is my choice, and I have every right to do so, as I have made it my mission to try to get solid, science-based information out there about alternative cancer therapies, and part of my approach has been to analyze publicly posted patient stories to see if they are persuasive evidence that the alternative cancer cure in question works.

Some examples of patients who were not Dr. Burzynski's:

http://scienceblogs.com/insolence/2012/08/21/yet-another-dubious-breast…
http://scienceblogs.com/insolence/2012/10/12/a-slightly-different-alter…
http://scienceblogs.com/insolence/2011/04/12/yet-another-misleading-alt…
http://scienceblogs.com/insolence/2010/09/28/the-testimonial-of-hollie-…

I'm sorry if my careful analysis of her Internet postings upsets her, but Ms. Herron does not have is a right to try to control how her story is discussed after she has made it publicly available. Again, that's just common sense.

I'll conclude, once again, by pointing out that, if there are any errors of fact in my account, Ms. Herron is more than welcome to correct them. That has been my policy for over eight years now.

Maybe that evidence is contained in the “two-and-a-half-million pages” of trials he submitted to the FDA.

As someone who has published papers in peer-reviewed journals, I would seriously question the competence of someone who cannot put his data in an easily understood one- or two-page table.

And I would probably not waste my time reading two-and-a-half million pages from someone who pretends to do clinical reasearch but can't be arsed to learn statistics or to hire a statistician.

@MSII #46: "Anyway, after a year or so (I forget the actual timeline) she updates the story by saying her latest live blood tests are “bad” and she has to “fight this thing,” implying there are signs the cancer has returned. She blames this on the fact that she lapsed from the alkaline diet, not because of the fact that the damn black salve didn’t work, and never works, in the first place."

Live blood tests are utterly meaningless. It's like predicting the future by looking at tea leaves. The results will be nothing to do with whether she's followed the "alkaline" diet or used black salve, except presumably beforehand, she told the practitioner all about what treatments she'd used, what diet she'd followed and about any symptoms she might have noticed. I expect there were other more meaningful signs that the cancer had returned.

It's uttterly heartbreaking to hear about people putting themselves through this, to have such faith in utter quackery, and dangerous quackery at that. Even worse when they deny themselves effective treatment. As far as I can tell, the people who use black salve tend to be the ones who have fallen hook, line and sinker for the big pharma cancer conspiracy nonsense.

Even after all this time, I still find it odd to see Burzynski alongside such "alternative" and "natural" treatments and lauded by people who mistrust conventional medicine. How can they not recognise that his treatments are medicines? Does it make it any better that he has a tendency to sidestep regulation? Or that he owns the companies which make the medicines?

Cognitive dissonance or simply a refusal to admit she was wrong about the black salve (bs, appropriately)?

I unfortunately understand how someone would choose to go that route, and also why they'd blame themselves when it fails.

My best friend died from ovarian cancer about 2 years ago*.

Despite being involved in cancer research herself, and being sometimes more informed about the biology of her cancer and the different treatments than her doctor (she asked for a sample of her tumor to be tested for ER before accepting to take premarin post-surgery, and it turned out positive), she did favor some (relatively harmless compared to black salve) woo along with her chemo.

She also blamed herself when she had (expected as the normal course of her disease) recurrence. For stupid things like "negative thoughts" and "eating sugar". I raged inside against the well-meaning idiots who'd told her those things mattered when I saw her like that. To see someone you love, sick and vulnerable, be crushed by such meaningless guilt, for the crime of being human....

But the well-meaning idiots (or heartless crooks) are convincing. They tell you what you want to hear about your chances. I too wanted them to be right. My friend would still be here today.

Chemo possibly gave her five more years - her disease was very agressive, and it most probably would have killed her within months of her sugery had she chosen the full woo route.

* The cancer killed her, not the chemo. Her oncologist had refused to give her further chemo when her tumor stopped responding. Believe me, chemo can be unpleasant, but the natural course of cancer is even less pleasant.

Live blood tests are utterly meaningless. It’s like predicting the future by looking at tea leaves.

There's a YouTube video of live blood slowly drying out on a slide under the hot lights they use, with a voiceover of Robert O. Young describing what he sees, none of which bears any relation to reality (he claims that white spots on red blood cells are them fermenting, which is what causes diabetes), and there's another of him describing what are actually various bits of debris moving in and out of the focal field as bacteria pleomorphically changing into fungi, or some such impossible transmogrification. It would be hilarious if so many people didn't believe it. There are good reasons for hematologists using dried stained blood.

#42 She chose to go public with elements of her story, and she is being used as a publicity tool by Burzynski. Presumably, if she had not wanted to publicize Burzynski, she would not have agreed to this.

I'm glad you were civil to her when you did the analysis. She may feel like she's under attack; she is not.

We all want her to be healthy and cancer-free.

We all want Burzynski to release his data in a good journal.

We all want more good cancer treatments. If he has one, releasing the data will show it and we could all get behind him, Ms. Herron. Truly.

In these straitened economic times, I doubt the Michigan Department of Licensing and Regulatory Affairs enjoys the level of funding that would permit its staff to launch a full-scale investigation every time they receive a rambling screed that boils down to "I feel offended." The complaint form assumes that the doctor involved actually treated the complainant, obviously not the case here. Further, the complainant is expected to sign a waiver allowing the investigator to obtain relevant medical records. As Ms. Herron seems to prefer mysterious references to unspecified factual errors to actually providing facts, she may decline to sign the waiver. Should she follow through on her threat, her complaint is unlikely to go anywhere.

Second verse, same as the first.

As usual, the quacks (and their associates) can't bring science and facts to the table, so they have to attack the messenger, by filing bogus complaints or lawsuits.

Black salve? Is that the stuff that "works" by burning away tissue? If so, why on earth don't these people instead use battery acid or caustic soda? They're way cheaper and they do exactly the same job!

JJ,

Yes, I'm very aware of the live blood scam. I've been following your battles with that "Harley St. (not a physician." Is he the reason Keir decided to shut down The 21st Floor? I know he threatens and accuses bloggers and cites copyright infringement to try to shut you guys in the UK down.

I guess in the testimonial I cited I should have realized there were some other diagnostics she underwent to confirm the cancer had returned; that the live blood test would not have been able to tell her anything. I like your tea leaves analogy too!

This is what she writes about her initial experience with the live blood test:

It was during the time that I was extracting the first tumor that I met with Caroline Carter, a micro-biologist* (sic), who could do live blood analysis with a dark field microscope. Caroline tested my blood and saw that it looked bad. She said there are 10 stages to cancer cells…..I was at level 8, which she ranked as a stage 3 or 4 cancer. Right away she put me in a sauna box to have ozone therapy.

Stage 3 or 4 cancer...isn't that a little vague? Aren't there a lot of "steps" in between each stage? Why are people so willing to belive this crap?

*Is a "micro-biologist" a very short biologist? :)

Right away she put me in a sauna box to have ozone therapy.

A sauna box instead of an Orgone Accumulator? Obviously a quack.

Cookie please.

One more biscuit please...

I may have missed something here, I'm skimming and on my mobile, but if Ms Herron has been 'cured' by Our Man Stan (sorry, the Slade reference just popped into my head!), why does she write in her last post;
"I'm fighting for my life".
If this has already been discussed my apologies. Scrolling down on here is rather a pain

For those old giddy duddies who didn't understand my Slade reference;
http://en.m.wikipedia.org/wiki/My_Friend_Stan

I wanted to let you all know that the delayed BBC Panorama investigation on Burzynski will finally air on Monday June 3. Several Twitter skeptics in the UK will be live-blogging at #burzynski and #bbcpanorama.

Let's hope the episode will be posted on the BBC website shortly after airing, for all of us outside the UK.

Apparently it's a 30-minute segment but Rhys Morgan just Tweeted that his interview has been cut from the final episode (he was interviewed about the initial threats from my namesake and the worldwide Streisand effect that resulted).

Disgruntled former patient Wayne Merritt will be featured along with another prospective British patient who is currently raising money to make the trip to Houston.

I am utterly shocked by comments on this article. Let me ask you all this. How many of you have sat infront of a Neuro oncologist and have him tell you that you have 15 months to live? They can probably extend that by 3-6 months in the UK with Themozolomide and Radiation? Oh and by the way notify your life insurance company because that isn't a cure!

I'm guessing not many! I say that because what many comments here demonstrate is such a shocking lack of empathy for people who have had their lives changed by a horrible illness it makes me angry. Allow me to explain!
My name is Martin, I'm a 38 year old airline captain from Manchester in the UK. 9 days ago I had a brain biopsy and was
Diagnosed 15/5/13 with a grade 4 GBM. You cannot even begin to fathom the effect this has on your life until it happens.
Until very recently my wife Emma and I lead a normal life. All the aspirations of a young couple, both career minded pilots but also keen to have a wonderful home for a young family. Love holidays, friends, socialising and life and making a stable home into which to bring children. All of that has gone. Every last bit of hard work, testing, checking studying to become a very young Gulfstream Captain, every one of the many hours helping to build our home. All the dreams of a family, holidays with friends. Gone!

My name is Martin Vizzard, please scribble that down somewhere because i will very active in the UK from here on supporting the medical innovation bill in the House of Lords in the UK.
My fate was sealed on the 15/5 however if that can somehow be changed WHY would anyone want to deny anyone that hope. And if it doesn't work well I tried everything but that will in NO WAY change the outcome for me. However if I get an extra second with my 36 year old wife it would be worth every penny.
Will I be going to see Doctor Burzynski, you bet your life I will. I will be seeing every person who I think may be able to help me.

It sickens me to the pit of my stomach that such public insensitivity can be displayed by fellow planet dwellers.
I really do think you skeptics need to get out more and live your lives, you never know if you 15/5 will come for you as it came for me!

Just as an aside peebs, if someone is given a grade 4 GBM diagnosis i would assume from that point their fight and existence is a fight for life! Every second of every day!

Martin,

I am very sorry to hear about your diagnosis. If I may offer some advice should you go see Burzynski.

Based on looking at literally hundreds of patients and putting them up at theotherburzynskipatientgroup.wordpress.com, I recommend a few things for your protection:

1) Tell the clinic staff that you are making an audio recording of all dealings that you have with them. Then make those recordings, especially when you are in consultation with the doctors and ABOVE ALL when you are meeting with the staff who deal with patient accounts. Don't allow what happened to Kathy B. to happen to you.

2) Get everything in writing. Do not accept verbal agreements. Do not allow what happened to Denise D. to happen to you.

3) Demand and keep a running copy of itemized charges. Do not ever leave the office without the most recent one.

Burzynski has nothing to offer but false hope and poverty. But if you end up in his offices, and I truly hope you do not, please protect yourself.

Hi Bob,

Thanks for your kind words.

Finance wise I've always been a planner and from the early days in our working lives made huge insurance provisions (critical illness we call it in the uk) for eventualities like this. I then made further provisions if we used that money and it didn't work. Then life insurance. So it's not really about money for us. It's about life. I think once money gets dragged into an argument of life and death credibility of an argument can become diminished. People see others looking in and question if it is "the green eyed monster" (Brit term)

At the moment I am symptom free and will be going to see every doctor who I think can help me. That includes standard treatment in the UK, U.S or anywhere else in the world. I will do it in the the order I decide based on my assessment, and if I mess it up, well, I know the consequences. Not based on ANYONE else's success or treatment but on MY assessment of what may give me a chance. 0.0000001% chance of it working, lets give it a whirl then! I'm sure you get the idea.

I need to explain to you all though how exasperating it is to be sat in an eminent oncologists office in one, if not the, most famous establishment in the world to be told. These are the rules of the treatment. Nope, I don't think so. I will be trying Burzynski and if it doesn't work we will move on.

When and if I finally look into my wife's eye's for the last time we can say we tried everything. Keep money out of it guys. Your miles ahead of the UK over here, why not embrace that!

Martin,

Have you looked at the difference between what Burzynski says publically, what his promoters say (and he does nothing to counter), and what dispassionate observers such as the American Cancer Society and Cancer Research UK say?

There's nothing wrong with using an unproven treatment with no demonstrable chance of success, as long as you are completely clear that is what you are doing. The people who offer these unproven cures are vermin in my view, but it is certainly understandable why people faced with no realistic prospect of cure from the world of medicine might be tempted. It's not just Burzynski, there are a legion of them. Gerson, Hulda Clark, Hoxsey - the FDA has a list of 187 fake cancer "cures": http://www.fda.gov/drugs/guidancecomplianceregulatoryinformation/enforc…

I cannot think of a shittier situation to be in. I like to think that if it were me I would show the kind of equanimity that Iain Banks has shown, but I bet I could not.

I'm terribly sorry for your situation. Really, I am. As I have pointed out time and time again when blogging about Burzynski, as a cancer surgeon who watched his mother-in-law die from a particularly nasty form of breast cancer four years ago, I understand the family's desperation. I hope I never understand from a first person standpoint the patient's desperation, but I'm human and there is no guarantee that it won't happen to me someday.

That being said, I would strongly advise you against going to Stanislaw Burzynski. There is no evidence that his antineoplastons are any better against brain tumors (or any other tumor, for that matter) than standard of care. He's had 61 clinical trials registered on ClinicalTrials.gov since the 1990s, and he's thus far published the complete results of zero of them. Here's my take on that:

http://scienceblogs.com/insolence/2013/02/20/a-brief-fable-about-a-phar…

And here are some things to consider if you found Burzynski through one of Eric Merola's movies:

http://scienceblogs.com/insolence/2011/11/29/burzynski-the-movie-subtle…
http://scienceblogs.com/insolence/2011/12/05/personalized-gene-targeted…
http://scienceblogs.com/insolence/2011/12/12/what-dr-stanislaw-burzynsk…
http://scienceblogs.com/insolence/2013/03/14/five-things-i-learned-seco…

Not the least of which is Burzynski's abuse of the clinical trial process and playing fast and loose with laws and regulations governing human subjects research:

http://scienceblogs.com/insolence/2013/03/26/stanislaw-burzynski-versus…

The reason I am so critical of Burzynski is because, as hard as it is to believe, it is possible for things to get worse for patients like you. You could suffer complications from a treatment with such a minimal hope of success, or you could find your bank account drained with nothing to leave to your wife and family. You could even potentially shorten the time you have left. As Guy said, if you still want to try, please be aware of what, exactly, you are trying.

Martin Vizzard,

I can completely comprehend that you want to try every doctor and every treatment that you think can help. What criteria are you using to determine which treatments are most likely to help and which are not?

Martin,

I wish you well but are you aware that Burzynski cannot give you antineoplastons anymore? You will be receiving regular chemo with a fancy and expensive name.

@ Martin: Please be assured that everyone who regularly posts here, and on other science bloggers' websites, have great empathy for you.

IIRC, many of us first became interested in Dr. Burzynski's treatment of a variety of cancers with Antineoplaston, when a teenage science blogger located in the U.K. wrote an excellent post about Dr. B's treatment protocols. For that excellent post he was targeted and threatened by one of Dr. B's public relations person, who, masqueraded as an attorney. Not only was the bogus "attorney's letter" threatening, he posted a picture of the young man's residence.

Quickly, the phony attorney, sent threatening legal letters to Orac and every other science blogger....which (eventually) caused his dismissal from the Burzynski clinic.

The ONLY bloggers on the internet who support Dr. B. are snake oil salesmen and a few medical doctors, who themselves practice their own forms of quackery and/or sell useless supplements and vitamins to credulous people.

Dr. B has no training as a medical oncologist and has no hospital affiliations in Houston Texas...or anywhere in the United States. He's been promoting antineoplastons for more than thirty years for every type of cancer imaginable, yet has never completed or published a Phase 3 Clinical trial:

http://en.wikipedia.org/wiki/Phases_of_clinical_research

I hope you take what I have posted and what others have posted, in the spirit that these posts were directed at you.

Thanks everyone for coming back to me. I think my initial post was maybe a little aggressive and apols for that. It wasn't my intention to offend. I am not here to argue, far from it. Never been an arguing type. What I am is a calculated thinking type able to look at a subject and be confident about making a sensible assessment of risk then activating my plan. You'll be all pleased to know that anyone sat at the controls of a passenger jet crossing the Atlantic or Pacific doesn't just have a plan A or B. If things go wrong, rule book out of the window and do what is needed to survive. Probably plans A to Z.

As it stands, every single facet of my life has changed. Nothing and I mean nothing will escape my attention. How can anything possibly harm me? If someone wants to give me a spinach and apricot enema I'd ask what time they wanted to do it? Some may say that's desperation but to be honest I feel far from desperate. I really honestly do feel like my life has taken a turn in a good direction. I'm certainly not scared and I am so positive that it really feels good.

I sat for an hour in Harley Street in London being told doing anything other than standard can harm me! I think the Oncologist was a little confused when I started laughing.

So to answer the question of one of the last posters the criteria I will apply is just common sense.

I've heard of ANP but not intending to have it in Houston.

I wish you well but are you aware that Burzynski cannot give you antineoplastons anymore? You will be receiving regular chemo with a fancy and expensive name.

Good point. The FDA investigated the Burzynski Clinic from January to March, and until it issues a report no new patients can be enrolled on protocols to receive antineoplastons. Existing patients continue to receive antineoplastons, but if you go to the Burzynski Clinic you will be offered his "personalized gene-targeted cancer therapy," which consists of a very expensive cocktail of chemotherapy and newer targeted agents whose selection Burzynski bases on a commercial gene test available to anyone. It's explained in this post:

http://scienceblogs.com/insolence/2011/12/05/personalized-gene-targeted…

I've been meaning to update that post, because the gene test he uses has changed, as I mentioned above in the post to which you responded.

One last thing. Before you conclude that your tumor is truly inoperable, you might want to consult with a neurosurgeon in Australia named Charles Teo. Reportedly he is able to resect some brain tumors that other neurosurgeons cannot.

http://scienceblogs.com/insolence/2011/12/27/on-leaping-to-conclusions/

Corpus callosum! I will certainly dig his details out and get the MRI scans down to him.

Thanks again for all the comments. I will most certainly keep you all updated.

Best wishes, Martin.

Sorry lillady, should have replied to you. I absolutely take that on board and in the spirit it is intended. I have made a note in the Vizzard grey matter (good part!) and it will form part of my decision making process.

Thank you for taking the time to impart your knowledge. I am here without motive or agenda and thank everyone for their good wishes and idea's.

Not sure if that link was meant for me or not! Thanks anyway!

Again, i'm not here for an argument and without motive or agenda. I have not been put under any pressure by any marketing person at the Burzynski clinic, i honestly have not. I looked around around an stumbled across his clinic and called them for information. I actually had to call them back to say "can you get a move on please because I will not be waiting for you". They will also be told in NO uncertain terms of my rules. Yes they are treating me but I'm paying and I'll call the shots. I always found that a good strap line when talking about money. Before any other discussion I've always said " let's get the awkward conversation out of the way, agree exactly on what we are doing and everyone will be happy!" I find that works very well. As long as it's documented of course.

Also I said yesterday I am far from desperate and it is nothing to do with money. My wife and I are interested in ME and finding help. Not based on someone else's treatment that has worked for them. I couldn't think of anything worse to do than follow someone else's lead because it may or may not have worked for them and although I wish anyone with Cancer well, their experience is of little consequence to me. And if at the end of the day the Burzynski clinic does not work I have many many other irons in the fire which I will look at and bid them farewell thanking them for trying to help shake their hands and leave.

Something I'd say though guys and something you cannot legislate for is how a person can change in a situation with let's say a GBM grade 4. I thought I'd be scared to death, crying, emotional wreck etc etc etc. I am stronger than I've ever been in my life. Nowhere near desperate, but calculating planning and VERY straight with people who don't do or say exactly what I want. I was chatting to Mrs Viz last night and said I hope I'm not coming across as arrogant because I never liked that.

It is MY search for MY possible cure. Wherever that may be!

No, that link wasn't meant for you. It's just a crank who used to flood the comments here with rants to the point that he drowned out a lot of reasonable conversation. i had to ban him, and he decided to go off to WordPress and blog about how nasty Burzynski critics are. When he posts something new, it leaves a trackback here. I let his trackbacks through only because I think it's far more useful to let his nuttiness speak for itself. Also, they amuse me, because they are so bizarre.

I must be honest, though. I still think you're making a huge mistake and sincerely hope you reconsider. As I documented in the links I posted a few comments up and several others have also documented, Burzynski's claims are not supported by anything resembling good science or clinical trials, and IMHO he plays fast and loose with the clinical trials system and regulations designed to protect human subjects. His antineoplaston therapy is chemotherapy with significant toxicity. I refer to his "personalized gene-targeted therapy" as "personalized gene-targeted therapy for dummies," because he just uses a commercial test available to anyone and then, without much thought or consideration of potentially synergistic toxicities, prescribes a witches' brew of chemotherapy and very expensive targeted therapies. Moreover, he also tries to make you, the patient, buy these drugs only from a pharmacy that he owns at inflated prices. I'd just like to warn you: You can't trust anything the clinic tells you.

Martin,
Money may not be in short supply, but time may well be. Please don't waste what may be the last months of your life on Burzynski. My advice would be to get the best conventional care you can afford, and if they truly can't help you, accept it with dignity and wring the last drops of joy out of your life with your loved ones.

Is Burzynski charging people money to participate in "clinical trials"? Presumably that's how he's getting rich. Clinical trials should be conducted with volunteers and it should be illegal to ask them to pay anything. The trials should be funded by investors. That would ensure that charlatans could not get rich off desperate people. It would also ensure that there would have an incentive to complete the trials and publish the results so that they can move to production of successful therapies and recoup their costs.

So, does the Myriad decision moot whining about Scamley's piss-extract patents?

This blog is full of bull shit!! I don't know why do you spend so much energy to heat people who are trying real hard to make a break truth.Someone is paying you?????? I had people with cancer in my family and unfortunaly I did not know about Burzinsky at that time.They died, of course.The standart care means death!!! But they did not die before spending all their money and family money.What do you have to say about this?????

Paulo, if Burzinsky has an effective treatment for certain cancers, why doesn't he publish it in the medical literature so everyone can benefit?

Well, Paolo, if you want to trade anecdotes, my mother was diagnosed with breast cancer back around 1980, and received standard care, and survived the cancer with no re-occurrences. She died about 9 years ago, but that was from heart disease, not cancer.

As others have indicated, all Burzinsky has to do to be taken seriously is to publish his findings.

I don’t know why do you spend so much energy to heat people who are trying real hard to make a break truth.Someone is paying you??????

Given that there have been, out of the blue, two Burzynski necromancers in the past day, this question might better be asked of you.

I don't understand the anger and negativity. Let me get treatment where I want to get treatment and you get treatment where you want. If you think chemo and radiation work better go for it.

Is Eric Merola issuing bogus DMCA takedown notices against critics of Stanislaw Burzynski?

oracknows — Fri, 19 Apr 2013 06:30:25 +0000

Is Eric Merola issuing bogus DMCA takedown notices against critics of Stanislaw Burzynski?

If there is one aspect of cranks that is almost universal (besides the aforementioned tendency to want to prove themselves through things like "live televised debates"), it's a tendency to want to shut down the criticism of its opposition. True, such a tendency is a human trait as well and used far too often by, say, corporations, but it's one that seems to be cranked up to 11 and beyond, as they say, in cranks.

We've seen it time and time again. Most often, it takes the form of some sort of legal bullying, such as when the British Chiropractic Association bit off more than it could chew by suing British writer Simon Singh in essence over his use of the word "bogus" to describe chiropractic. Fortunately, they were ignominiously defeated and had to retreat like the scum that they are. Sometimes the legal thuggery takes the form of going after the ISP of whomever the crank doesn't like, such as when quack extraordinaire (in my not-so-humble opinion) Joseph Chikelue Obi temporarily silenced Andy Lewis of The Quackometer. Other examples abound, such as when the Society of Homeopaths forced Andy Lewis to take down an article criticizing homeopaths in the U.K. for claiming that homeopathy can treat malaria. And don't even get me started on the vacuous legal threats by a man associated with the Burzynski Clinic, legal threats so hilariously over-the-top and embarrassing that even a man with no shame (Stanislaw Burzynski) was forced to disavow Marc Stephens, the man making the threats against a teenaged U.K. skeptic.

Over and over and over and over again, the story is the same. A skeptic aims the light of reason and science into a crevice of unreason and pseudoscience, the target of that light doesn't like it and, instead of slithering back under the rock from which he came, decides to try to abuse the legal system to get back at the skeptic. Legal thuggery is a feature, not a bug, of crankery and quackery. Perhaps the most popular new mechanism for silencing opponents, be it by cranks, quacks, or even big corporations, is the Digital Millennium Copyright Act. About three months ago, I linked to and embedded an excellent YouTube video by C0nc0rdance. Go to my link right now and try to play the video. What do you see?

This video is no longer available due to a copyright claim by Merola Productions, LLC.

Yes, apparently Eric Merola has issued a DMCA takedown notice against C0nc0rdance, and Google, as it so often cravenly does, simply complied. At least, that's what C0nc0rdance has stated, and I have no reason not to believe him. The problem with the DMCA, of course, is that once a takedown notice has been issued, it's devilishly hard for the YouTube user to contest it, which has led to a cottage industry of bogus DMCA takedown notices. Punishment of issuers of abusive DMCA takedown notices is rare, and ISPs and other web hosts often have little choice but to take DMCA notices at face value because of how the law is written. In fact, C0nc0rdance posted a brief video explaining what was going on, but if you go to that link you will rapidly find this notice:

This video has been removed as a violation of YouTube's policy against spam, scams, and commercially deceptive content.

Gee, I wonder who complained to YouTube about that video so rapidly, given that it hadn't been up more than a day or so before it was taken down? Could it be...Eric Merola? That would be my first guess, of course. This is, after all, a man who complained to Bob Blaskiewicz's university about his online activities opposing Burzynski, an act that was so reminiscent of the Jake Crosby-inspired attempt to get me fired from my job as surgical faculty at my current university three years ago that I completely related to Bob's discomfort.

Amusingly, though, the Internet, being the Internet, does not react well to bogus DMCA takedown notices. Already, C0nc0rdance's video about the Burzynski Clinic has been mirrored here, here, and here. I'll embed one of these mirrored versions of the video for your viewing pleasure. It's really worth taking a look at because it explains the essence of skeptical objections to Burzynski concisely and clearly, so that everyone can understand:

No doubt Mr. Merola will take the mirroring of C0nc0rdance's video as "evidence" of some sort of grand conspiracy by "The Skeptics," given that he has repeated claims about such grand conspiracies at both of his Q&As after screenings of his new movie. Mr. Merola, assuming he really was the one issuing this DMCA takedown notice, should Google the "Streisand effect." It really is applicable here. There's no grand conspiracy. There never has been, as getting skeptics—excuse me, "The Skeptics"—to paddle in the same direction on anything is much like the proverbial herding of cats. Mirroring like this and more people writing about the criticisms that Merola has tried to suppress is just what happens on the Internet, in particular on social media, whenever a person being criticized tries to use legal thuggery to silence or eliminate that criticism. The examples are legion and include the ones I briefly mentioned at the beginning of this post. There are more, of course. Many more. In an case, although I'm not a lawyer there was nothing in C0nc0rdance's video that I could see that was anything more than obvious fair use. Early in the video there was a scene showing a shot that included a low resolution shot of the poster for Eric Merola's Burzynski propaganda movie. Later, there was another shot with that poster, and some random images associated with Merola's filmmaking business as well as a photo of what looked like him. Quite honestly, if I were C0nc0rdance, I'd just re-edit the video to remove the Burzynski Movie poster and any images of Merola, replacing them with either cartoons or a blank screen with a notice that the images had to be removed because Merola had issued a highly dubious DMCA takedown notice.

Let me also say this. I know that Eric Merola obsessively reads pretty much everything I write about Burzynski; so I know he'll see this. I also know that @BurzynskiSaves (whose identity I now think I probably know with around 95% certainty) and Didymus Judas Thomas (whose identity I'm probably about 75% sure of and whose Twitter handles mutate as fast as the genome of cancer cells) also obsessively read anything posted about Eric Merola or Stanislaw Burzynski on any social media. Finally, I believe that people like Eric Merola are hypocrites, feeling free to paint "The Skeptics" as "white supremacists" and puppy-eating evildoers to their heart's content (from what I've heard about Merola's second Burzynski movie, in it skeptics are all but portrayed as Satan Incarnate) but running like whipped puppies to the DMCA when either they or Burzynski are criticized, no matter how civil, reasonable, or science-based that criticism is (and C0nc0rdance's video was all of the above). The reason is, of course, clear. Having no convincing science, no convincing medicine, and no convincing evidence to support their hero's antineoplastons or "personalized gene-targeted therapy for dummies," they resort to legal thuggery, the difference being, of course, that puppies are cute, lovable, and of great comfort to many people.

Same as it ever was.

One more thing: If Eric Merola, Stanislaw Burzynski, and his crew of sycophants, toadies, and lackeys are offended by my opinion, my characterization of them that I have based on analyses of Burzynski's claims and observation of the behavior of Burzynski and his propagandist Eric Merola, they should try something different to shut me up. I have just the thing, too. Publishing the results of some of Burzynski's allegedly completed phase II trials for the scientific community comes to mind first. If Burzynski really has the goods, as Merola and company claim, then he can best shut up critics by bringing the science—solid, convincing science, that is. I've said it before many times, and I'll say it again: I can be convinced by strong preclinical and clinical evidence. I have yet to see anything resembling strong evidence from Burzynski. At least, if he has such evidence he hasn't published it yet, preferring to publish a mixture of case reports, tiny case series, unimpressive basic science, and the like in bottom-feeding journals, some of which aren't even indexed in PubMed. A conspiracy among editors of journals is not the reason, contrary to the claims in the second Burzynski movie. Nor is a conspiracy of skeptics—excuse me, "The Skeptics"—the reason why trying to suppress criticism will boomerang on Merola. It's all because of Burzynski's own behavior and Merola's willingness to distort, misinform, and slime Burzynski critics.

ADDENDUM: C0nc0rdance has now posted a "scrubbed," "Merola-friendly" version of his original video. It's well worth watching:

Go. Spread the word (and the link)!

oracknows Fri, 04/19/2013 - 02:30

Tags

Skepticism/Critical Thinking

https://www.techdirt.com/articles/20130419/02554422762/takedown-non-dmc…

Categories

The guy clearly cannot tolerate any criticism of either his video or his beloved hero on YouTube. He routinely blocks users and removes their posts if they are critical or negative. It wouldn't surprise me in the least If he has taken to abusing the service in other ways through the DMCA.

Simply put, he is an intellectual coward. Of course I doubt YouTube takes kindly to people making false claims and could give him the boot. Wouldn't that be funny?

Also, users who are blocked can file a counter notification for fair use reasons. So if they're using clips of his video for critique or his interviews they should do that.

This video has been removed as a violation of YouTube’s policy against spam, scams, and commercially deceptive content.

IANAL, but C0nc0rdance may have grounds for a slander suit against the person who made that complaint.

DMCA is bad law, full stop. Services like YouTube could not exist without a safe harbor provision; the problem is that the law presumes takedown notices to be valid, and forces the service provider to comply promptly in order to preserve the safe harbor defense. The law presently allows someone to plagiarize your content and then file a DMCA takedown notice on the grounds that your publication of the material they plagiarized from you infringes their copyright. That needs to change.

This sounds like a job for PopeHat....

My thanks to you, Orac, for bringing this to light. The outpouring of support in the form of YouTube mirrors is very heartening. I have, as you suggested, re-uploaded a "Merola-friendly" version of the video. Rather than making a point about censorship, I wanted to make sure that it served its original purpose of raising the level of critical thinking about the red flags at the Burzynski Clinic.

Challenging this DMCA would require disclosing my home address, phone number and legal name to Merola (and likely then the Internet at large). Someone who exploits cancer patients for profit would have no ethical quandaries in harassment and intimidation tactics. It's for that reason that I will probably not counter the original DMCA. That doesn't mean I lack the will to fight... but I will not let it intrude into my real-world life. Streisand Effect is a powerful thing, and a lesson to censorship thugs to beware a skeptical community united.

My initial reaction was shock that Merola was the one to try to silence me. I assumed the attack would come from the Burzynski clinic PR/social media department itself, though I suppose they may have learned a lesson from Rhys Morgan.

Thanks again.

This sounds like a job for PopeHat….

Indeed. I'm pretty sure he probably already knows about it, but in case he doesn't...

My initial reaction was shock that Merola was the one to try to silence me.

I'm afraid Merola is pretty thin-skinned; so I can't say I'm as surprised. As you say, the Burzynski Clinic's PR department, once burned by hiring Marc Stephens, is probably now twice shy about this sort of thing. At least, I hope so. Merola, however, totally convinced that he's a crusading documentary filmmaker exposing the depredations of the FDA and big pharma persecuting poor, poor Stanislaw Burzynski and the evil machinations of "The Skeptics" trying to attack Burzynski patients for going to Burzynski (which we do not do) and him for trying to let the world know about a "cancer cure that The Man Doesn't Want You To Know About," is more likely to plunge bravely ahead into such stupidity that has already burned Burzynski. Whatever you say about Burzynski (and I say a lot), he is not stupid and he can learn from experience, at least tactically. I'm not so sure the same can be said about Eric Merola.

It says it has been removed due to Google's policy on scams. I wonder if there are any other videos on YouTube that could fairly be described as promoting a scam? I do hope Merola doesn't suddenly get flooded with down votes and people flagging his propaganda...

@ Guy Chapman:

Regarding those I survey, I could name you a bunch that would be in the same boat as Merola if truth be told.

Not You-Tube, but Woo-tube.

C0nc0rdance, I published your original video. I'll see how long it stay put.

Alain

Did you change the headline, Orac? I could have sworn it was different when I clicked on it about 10 minutes ago.

Challenging this DMCA would require disclosing my home address, phone number and legal name to Merola (and likely then the Internet at large).

Oh, I will. Filing the counternotice is trivially easy. Merola then has 14 days to bring a bona fide infringement suit, or it goes back up and the "strike" is taken off the YouTube account (note that three "strikes," and it sounds like c0nc0rdance now has two, will nuke all of your YouTube accounts; you should definitely protest removal of the second video, although there doesn't appear to be a formal procedure).

One thing to note is that I cannot for the life of me find a registration for any of Merola's material, so his recoverable damages are sorely limited, and 17 USC §§ 411–412 [and posters are explicitly not works of visual art for the purposes of 17 USC § 106(a)] may in fact preclude such a suit in the first place in certain jurisdictions.

Furthermore, by failing to take into account fair use, Merola opens himself up to claim of failure to act in good faith (Lenz v. Universal Music Corp., 572 F. Supp. 2d 1150 (N.D. Cal. 2008)).

IANAL, but C0nc0rdance may have grounds for a slander suit against the person who made that complaint.

No, this would come under section 512(f) of the DMCA.

I do hope Merola doesn’t suddenly get flooded with down votes and people flagging his propaganda…

They're all right here. Feel free to flag anything that's misleading; they're not in short supply.

Get a life, Orac.

Wow, Sandrop, that was a scorching retort. Can "so's your old man!" be far behind?

Techdirt has the Twitter where Eric Merola gives people detailed marching orders on how to falsely report the video as harassment against disabled people.

Sandrop is the new Marg!

@Scote

Wow. Somehow I missed Merola's marching orders to intentionally try to get "The Skeptics'" Facebook accounts yanked for hate speech. What a despicable little turd.

@Orac

Yeah. I wonder what he'll do next? Falsely report people as drunk drivers? Maybe some swatting (false calls to 911 to elicit a SWAT response)?

(And I missed that the instructions were for Facebook...doh..)

Methinks somebody needs to look into Google's violations of copyright and trademark law.

Made a few copies of the movie from the mirrors and stored them on a few online sites as well as on a few hard drives on my computers.

Have emailed a few friends links to the mirrors as well as send them links to merola's actions.

Also have a few video sharing accounts too to post the video if necessary.

It's a small thing, but I will do what I can.

What would be of use here is copies of the second video. (Paging c0nc0rdance.) The first one appears to have nearly two dozen repostings up on YouTube already. Given the method used to take down the second one, this seems like the place to focus further Streisanding effort.

One of the Skeptical OB's critics did something similar - practically invited her to copy and paste a photo from her blog, then used the DMCA to shut her site down with two successive ISPs for supposed copyright infringement, and asked her readers to try the same, with the express goal of shutting down the criticism rather than protecting her copyright. Dr Amy returned with a lawsuit alleging bad faith, and now it's somewhere in legal wrangleville.

Whether this is a good idea for other cases depends upon everyone's resources.

It doesn't get much better than this: http://i.imgur.com/I7cdq49.png

I’ve been in touch with Eric Merola by email, and he’s agreed to retract his copyright claim if I can get his email removed from all the mirrors. That seems a reasonable request to me. If you would check to see if you have his email disclosed and remove it, I would appreciate it. Thanks, -C.

Just to reiterate, IANAL, but it strikes me that Merola has now admitted in no uncertain terms that the claim is frivolous.

They never learn, do they? The Skeptics have enough Pharmacom lucre to respawn every time someone like Merola tries to take them out.

@Sadflop - no doubt your devastatingly cutting blow has left poor Orac mentally exsanguinated. Must you be so incisively cruel?

Does anyone know why the 21st Floor is offline again, another DMCA claim? It's becoming a regular occurrence.

Thank you Orac, and others at RI, for continuing to speak out against the charlatans. Today, one of my mentors, a former professor when I began my academic career, lost her life to cancer. She was 37. Her original prognosis was 6 weeks. She was lucky to have access to the best evidence and science based treatments in Australia which gave her nearly three years to spend with her children and new husband.

Thank you again for keeping the true victims of scum like burzynski in your minds.

Dr Amy returned with a lawsuit alleging bad faith, and now it’s somewhere in legal wrangleville.

I'm having trouble seeing the tactical rationale for this preemptive move on Tuteur's part.

As publicized by Merola, The New York Times in 2010 posted a review of Burzynski the movie, in which a gullible Jeannette Catsoulis wrote:

"Topically Fertile" "Tickles the Mind"

However, that isn't exactly what she wrote:

"Plain, plodding and relentlessly expositive, “Burzynski” tries to wrestle medical clarity from a snarl of science and human suffering. The price paid, however, is a documentary as visually arid as it is topically fertile."

"Mr. Merola’s ferocious commitment to documentation may bolster his argument, but it destroys his film. Clogged with court transcripts,
medical records and repetitive (if moving) patient testimony, “Burzynski” tickles the mind only at the cost of trampling the eyes."

The reviewer in the Village Voice did a much better job of providing quotes for Merola's movie poster:

"..."Burzynski" violates every basic rule of ethical filmmaking..."

"...why is this conspiratorial rubbish being released into theaters?"

I'll bet THEY didn't get a takedown notice.

Burzynski crowd is out in force commenting on Peter Lipson's article in Forbes. Could use some balance over there.

Here's the link
http://www.forbes.com/sites/peterlipson/2013/04/19/a-film-producer-a-ca…

is a documentary as visually arid as it is topically fertile.

A kind of fertiliser, then?

I’ve been in touch with Eric Merola by email, and he’s agreed to retract his copyright claim if I can get his email removed from all the mirrors. That seems a reasonable request to me. If you would check to see if you have his email disclosed and remove it, I would appreciate it. Thanks, -C.

No, that is not a reasonable request. Either the use is fair use or not. It does not hinge on some demand by Merola. As to trying to get an email recalled from the web, that just isn't going to happen, more reason why it is an unreasonable, Marc Stephens-style request.

"The Net interprets censorship as damage and routes around it." -John Gilmore

No, that is not a reasonable request.

I suspect it's a fatal request, but as c0nc0rdance has stated, he doesn't want to out himself over the matter, which is perfectly reasonable. However, if Merola has the balls to send similar claims to other uploaders of the video and is so stupid as to initiate a federal infringement suit in response to a counter-notice, in which his possible recovery is almost certainly actual damages (i.e., zero), rather than statutory, it will come in quite handy.

Narad,
Your post fail to compute; are you saying if he sue us, that the actual damage he could win is zero?

Alain

IANAL

but

Merola/Burzinksi have deeper pockets than most here, pockets which depend on continued faith of their followers and laxity from the law, and thus much more to lose. They are skating just outside the jailhouse gate, you are not.

If the clinic has in some way sponsored the film and has a business or legal relationship to Merola perhaps there is joint liability.

Being sued by Merola is
i) probably an empty threat
ii) possible a substantial win for the target is s/he wise about how to deal with it.

Hint: Agreeing to anything which appears like an admission of fault for exercising free speech, exposing fraud or stating truth is going to come back and bite. Having some 2nd hand exposure to slippery characters, I can confidently state that one is a fool to offer them wiggle room as if they deserve a gentleman's agreement.
Think of it like alligator wrestling, but with a small, oil coated 'gator.

Perhaps we should find individuals +/or groups which will pledge assistance should the rabid toy poodle attempt to bite?

"possible" ==> possibly is==> if

And consider that this is free legal chatter from a non-lawyer, YMMV

Alain
April 20, 2013
Narad,
Your post fail to compute; are you saying if he sue us, that the actual damage he could win is zero?

Alain

IANAL. However, I think that is both true and false.

I believe that you generally can sue for copyright infringement but only for actual damages, damages which have to be proven in court. However, if you register the copyright you can sue for statutory damages, arbitrarily and legally **presumed** damages, of up to $150,000 per work if the work is infringed *after* you register the copyright.

Hilariously, Squidymus has check in late on the Forbes piece.

^ "checked in"

Your post fail to compute; are you saying if he sue us, that the actual damage he could win is zero?

Alain, nothing that I say should be taken as legal advice. Moreover, you're not in the U.S. However, since he has not registered the copyrights, it appears likely that he could not recover for statutory damages or attorney's fees, just actual damages, which are zero. This is crucially dependent upon whether he submitted an application far enough in advance of the alleged infringement, as some jurisdictions might recognize this.

In other words, he would likely being paying out to bring a federal suit with nothing to gain aside from costing the defendant to defend the case. Personally, I'm willing to try to seek out pro bono representation if he tries pulling this shıt on my copy.

http://www.ageofautism.com/2013/04/weekly-wrap.html#comments

Measles outbreaks are the fault of the CDC!

Anj, it is not off topic on the article just before this one:
http://scienceblogs.com/insolence/2013/04/18/andrew-wakefield-wants-a-l…

Oh, I do like this phrasing:

crew of sycophants, toadies, and lackeys

This comment was posted in the guest book of the Healey family website, New Providence, NJ. Their young daughter has been diagnosed with DIPG and they are looking for a clinical trial. So..this Melissa Szpala calls herself a friend? Really? Wasting the family's time, money and giving false hope. Nice friend! It is amazing just how many people are brainwashed by this Stan B. Hopefully the parents know better and don't follow through.

Melissa Szpala said: April 22nd, 2013 1:21 pm
"Hello stef and ateve... attached is a link to a WONDERFUL cancer center that i think would at least be worth a call to if you have not done so already... Just a suggestion.. but it comes highley reccomended.. xoxoxo http://www.burzynskiclinic.com/"

I think I will own up to being part of a conspiracy... a conspiracy of people who prefer truth and free speech to legalistic chilling effects.

and Didymus Judas Thomas (whose identity I’m probably about 75% sure of

So do I get a prize for guessing that Squidy was only playing dumb and can actually be well-spoken when he wants? Honestly, he makes a good parody of cranks, even if he is one himself. If his brother, then it also makes it clear that the trolling was indeed aimed at baiting people into making parodies of skeptics too.

@AdamG

Sandrop is the new Marg!

Ah man, I've been missing all the fun!

Melissa Szpala said
Ah. Reiki, bodywork, raw-food vegetarianism, meditation teacher and now cancer-quack shill. Truly a versatile person.

I realized I posted these comments in the wrong Count Stan thread.

I haven’t paid any attention to the lunatic rantings of DJT for weeks, but Guy Chapman just updated the list of his sockpuppet Twitter spam accounts (he’s on his 10th account)so I checked out his latest incarnation. He’s now been reduced to writing poems and limericks about the Forbes article and his “free speech” being censored by Dr. Peter Lipson. This is truly hilarious. The man has deep, deep psychological problems:

https://twitter.com/QbertQbert

From what I can glean from his incoherent babble, he posted a comment on the Forbes article that purported to have uncovered some conspiracy that Dr. Lipson and Orac are friends (or “buds”) and that prompted Dr. Lipson to delete the comment. As far as I know, the authors of Forbes articles doen’t even have the power to delete comments, so maybe Forbes smelled the crazy and deleted the comment themselves.

It’s not quite along the same lines as Alex Jones’s conspiracy rantings about the Boston bombings, false flag attacks and “The Craft” but loony tunes nonetheless.

Since DJT has already proven to be a 9/11 truther, he probably also believes that Navy Seals planted the Boston bombs with the cooperation of the FBI and the two brothers were just “patsies” who were set up and/or framed.

Well, actually Peter and I are buds. There's no secret about that.. :-)

If your going to get cancer - you will die because no treatment works.

save your money, seek alternative treatment and when all else fails, get heavy painkillers and say goodbye

jin hason

If your[sic] going to get cancer – you will die because no treatment works.

That's not what my boss found, when he had standard treatment for his prostate cancer. That's not what other boss's GF found when she had standard treatment for her breast cancer. That's not what my wife found when she had surgery for her intestinal cancer.
Those examples were seven to ten years ago, and all the patients are still around – no alternative "treatment" or painkillers.
My father, OTOH, didn't have time for any treatment, standard or alternative, for his brain cancer – six weeks from way-too-late diagnosis to expiration. My daughter-in-law is a year into her (standard) treatment for GBM – she's fairly stable, prognosis indeterminable at this point.
I'm pretty sure the cancer survivors around here would like to spit (or worse) upon your lies. The friends and relatives of the victims of "alternative treatment" would likely have the same response.

@jin

[citation needed]

Let's make Dr. Stanislaw Burzynski do something good for cancer patients for a change

oracknows — Mon, 07 Jan 2013 00:41:43 +0000

Let's make Dr. Stanislaw Burzynski do something good for cancer patients for a change

Today's post will be relatively brief (for an Orac post, that is). The reason is that it's some very sad news that depresses me greatly. It's also because I don't want to distract too much from the announcement I'd like to highlight. About a month and a half ago, around the same time that Stanislaw Burzynski managed to get off on a technicality, with the Texas Medical Board agreeing to dismiss its case against Burzynski because it apparently couldn't go after him for treatment decisions made by doctors he hired, I met an unfortunate girl named Amelia Saunders. Amelia had been diagnosed with a brain tumor back in February, specifically an inoperable grade 2 diffuse astrocytoma. Somehow, Amelia's parents found Stanislaw Burzynski, as so many cancer patients do. Given the massive costs associated with Burzynski's antineoplaston treatment, using a combination of the Amelia's Miracle website and impressive hustle and marketing, Amelia's family managed to raise £250,000 to travel to Houston and begin treatment at the Burzynski Clinic with his "antineoplastons," a treatment that, as I've explained, has no convincing evidence supporting its efficacy.

In one of my posts, I explained how Dr. Burzynski's explanation for cysts that formed in Amelia's tumor in which he claimed that this was evidence that his treatment was working was completely off-base. This resulted in Amelia's father commenting on my blog, a comment that I couldn't ignore and had to respond to. So I did. Unfortunately, Amelia was clearly getting worse, and I feared that the end was near. Knowing what the Saunders family would go through made that knowledge even more painful, and it was clear that even the Saunders were coming to the realization that Amelia was getting worse.

Unfortunately, yesterday the end came, and Mr. Saunders posted this to Amelia's facebook page:

This is the update we hoped we would never have to write.

Amelia, our beautiful little girl, left us this morning at 9.50am, holding both our hands as she took one last breath. It was peaceful, quiet and without pain or suffering. Chantal and I had told her only minutes before that it was OK for her to go, to be free.

Now she is.

Although there is a huge hole left in our lives, Chan and I will be strong and support each other through this awful time. Charlotte will have all our love as our daughter, and when she is older we can tell her about the amazing big sister she once had.

Our hearts are shattered into a thousand pieces.

Thank you, everyone, for your love and support. Our lives will never be the same again.

Take care

Richard (Amelia's dad) x

There's nothing to say other than to offer to the Saunders my sincerest sympathy. I have only the vaguest inkling of how horrible it is to lose a child, and there's nothing that can be said to ease the pain right now. I also realize that this was inevitable and would have happened even if the Saunders had not sought out Stanislaw Burzynski. None of my anger or contempt is directed at the Saunders. In fact, contemplating the pain they must feel breaks my heart. On the other hand, contemplating the man who gave them false hope and enticed them into spending so much time raising money and subjecting their child to antineoplaston infusions fills me with outrage. That's right. I'm talking about Stanislaw Burzynski.

That's why I like the idea of the campaign that Bob Baskiewicz has come up with to wish Dr. Burzynski a happy birthday this year, skeptic style:

In honor of Dr. Stanislaw Burzynski’s 70th birthday on January 23rd, 2013, the Skeptics for the Protection of Cancer Patients are fundraising for St. Jude Children’s Hospital. Our goal is to raise at least $30,000 by Burzynski’s birthday, the approximate cost of entering one of his clinical trials of antineoplaston therapy. On his birthday, we will deliver a present to the Clinic, a challenge to Dr. Burzynski to match the total sum donated by skeptics, science advocates, and others who value good research into devastating forms of childhood cancer. The more you give, the more we ask of Burzynski.

Please visit http://www.crowdrise.com/fightchildhoodcancer/ and donate to St. Jude, a fantastic organization that does not turn away patients who cannot pay.

As I've heard it said, if Burzynski actually agreed to do this, it would be the only good thing he's ever done for cancer patients in his entire miserable career. Do it in Amelia's memory. Do it in the memory of all the patients over the years for whom Burzynski has promised to do so much better than conventional therapy and has never succeeded.

In the meantime, for those who come across this blog, remember that I'm not doing this to attack patients or their families. I'm doing it because, as a cancer surgeon and researcher, I hate it when patients are charged tens or hundreds of thousands of dollars to be enrolled in dubious phase II clinical trials that he never publishes in a form that has enough detail for scientists to tell if there is any evidence of efficacy. I can't stand it when someone like Burzynski holds out false hope. That's why I'm joining P.Z. Myers in asking you to help make Stanislaw Burzynski pay cold hard cash to a worthy cause.

He won't, of course. He has no shame. But at least we can raise money for a worthy cause while at the same time bringing attention to Stanislaw Burzynski and what I consider to be his incredibly unethical behavior.

More on Burzynski:

oracknows Sun, 01/06/2013 - 19:41

Tags

Quackery

antineoplastons

http://skepticalhumanities.com/2013/01/07/burzynski-filmmaker-contacts-…

Categories

Brain and Behavior

I can't imagine how painful it must be to lose your child and I have a "moton" (sp?) in the throat right now just thinking about them.

Richard, please have my best wishes and I wish I could say more but I can't.

Alain

Amelia's parents are damned heroes. Richard has been eloquent and honest and I've learned a lot by reading him. My deepest sympathies. Amelia's story touched us all.

Interesting to note that Eric Merola complained to professor Blaskiewicz's employer a couple of weeks ago about his anti-Burzynski activities online. The e-mail from Merola is included is this link:

Devastating news.

My heart goes out to the Saunders family, and I hope that in time the happy memories outnumber the painful ones.

In related news, abcnews.com is running a story about a young woman who is in long-term remission from a glioblastoma after chemo and radiation. Speaking about this remarkable outcome, the patient credits God and her team of doctors, and also says this:

"The mind is so much more powerful than anyone can imagine," she said. "People believe that when they get cancer, it will kill them. But I never once thought that."

I truly wish the reporter had asked her whether other glioblastoma patients die because their minds are weaker.

h_tp://abcnews.go.com/Health/mom-stuns-doctors-beating-deadliest-brain-cancer/story?id=18135106#.UOrK96xSOSp

Of course, you have to fight for your right to survive cancer. The Lance Armstrong school of surviving cancer. If you die, you lost the battle. It's always the same, blaming the victim.

@MSII

So Merola is obviously searching for material to pad out his mockumentary.
Merola's email to the university gives away the intended framework of the forthcoming 2nd part of the "hagiography" of the brave maverick. I predict that the documentary will focus on the tormenting of a genius, how "the establishment" has banded together to persecute the god-like Burzynski, and to thwart Stanislaw's plans to rid humanity of the curse of cancer forever because treatment of said disease is a major revenue stream for the Big Pharma industrial complex.

If it were not for the credulous and desperate marks of this swindle lapping up such twaddle, Merola's claims to be a documentary maker and investigative journalist would be laughable, as he is so obviously either an obsequious, toadying shill for the Burzynski clinic, or another rapacious con-artist who sees an opportunity to raise his own profile and turn a buck from the back of the misery of friends and family of Burzynski's many now deceased ex-patients.

My condolences to the Saunders family.

I predict that the documentary will focus on the tormenting of a genius, how “the establishment” has banded together to persecute the god-like Burzynski, and to thwart Stanislaw’s plans to rid humanity of the curse of cancer forever because treatment of said disease is a major revenue stream for the Big Pharma industrial complex.

But that's what the first movie concentrated on...

Orac,

Second verse, same as the first, a little bit louder and a little bit worse, perhaps?

Orac,

But that’s what the first movie concentrated on…

Part one "proved" Burzynski has the cure. After all, a dozen people said so, so it MUST be beyond doubt.

Part 2 will reveal the network of evil Big Pharma shills and corrupt scientists/academics/government types (no doubt all doing the bidding of alien vampire shape-shifting lizard-men??) oppressing the brave maverick.

I hope Merola is about to move into grand conspiracy theory territory. It wont rid us of Burzynski, but it will reveal to all but the most paranoid what a load of claptrap Movie 1 was.

Burzinski is a ghoul. plain and simple. he lives off the suffering of others. A man whose funeral I would be glad to attend.

MarkL,

Merola and his brother have already done three conspiracy films, under the series title "Zeitgeist." True crackpot territory. They use fake names on those movies (how many credible documentary makers need to use phony names?) but it's Merola and his bro.

Merola's day job is an art director making commercials for Campbell's soup and Old Navy. Burzynski's "services" are yet another product he's paid to promote to the unsuspecting public.

@DLC

Burzinski is a ghoul. plain and simple. he lives off the suffering of others. A man whose funeral I would be glad to attend grave I would gladly piss on.

FTFY

MSII - Do you have a reference link for Merola being the "Zeitgeist" whackaloon?

He uses the name Eric Clinton or Eric Joseph (Peter Joseph is his brother) for the Zeitgeist films. I'll try to find some links, but I know I did see plenty of references when I first started researching Merola.

Did you know his first cousin died as a Burzynski patient? Her fundraising page hasn't been updated in two years, and there's no reference she has died. I postulated that Merola's motivation initially was to make the movie to pay off his cousin's bill.

Militant,

Here's one blog called "Who Is Peter Joseph?" that covers his real name (PJ Merola) and lots of stuff about his brother Eric. It's definitely the same whackaloon.

http://anticultist.wordpress.com/2010/02/10/who-is-peter-joseph/

MSII, now that Marc Stephens seems to have been swept into a dustbin somewhere and Merola's activities, you may just have to change your 'nym.

I wonder if Burzynski will distance himself from Merola like he did to Stephens.

Here's the direct link to Bob Blaskiewicz's fundraiser. It is at $1,800 as of this writing (Jan 7 2013 at 12:35 pm PST)

http://www.crowdrise.com/fightchildhoodcancer/

Nice if we could get to $5K by the afternoon.

I feel like maybe this could have been two articles. One to offer condolances. The other to highlight a worthy cause.
No big deal I guess.
I was in awe this week. I was asked for an opinion on Burzynski. I gave as much as I could. Referenced this blog and Neurologica to fill in my gaps. My friend took a whole day to consider the arguments and had a bitter sweet reaction.
Yes. Burzyski is a horrible human being. That doesnt mean his treatment doesnt work. Blah blah blah. Cos. Y'know. Big pharma. Duh.

Dear Orac, I’m a director of a cancer charity in Australia. I have a story I think you’d like to know about – almost as big as the Lance Armstrong ruse – with coercion, intimidation and deception on a grand scale and one negatively impacting millions of cancer patients
Would you please get in touch?

You can find my contact information here:

http://scienceblogs.com/insolence/author/oracknows/

I tried to donate at the linked site...and was unable to.

Dear hubby promises he will assist me tomorrow.

Here are 36 studies on antineoplastons providing support: http://www.greenmedinfo.com/substance/antineoplastons

For a "Science Blog" it really is amazing how rarely you acknowledge the peer-reviewed, published evidence that runs counter to your narrative ORAC.

Thank you for the refreshing post Ben - and great site! Instead of ad hominem attacks, why not discuss the research itself on GreenMedInfo.com ORAC. Can you really write off 20,000 MEDLINE-sourced abstracts as "quackery" because you clearly have an agenda to push that is diametrically opposed to evidence, truth, rationality?

It does not surprise me at all that a website supposedly devoted to naturopathy, herbal cures for HIV, the healing quality of natural seeds, bastardised Yoga and anti-vaccine crankery will also spam some bullsh1t in support of Burzynski's drugs.

Sayer Ji will promote whatever he is paid to promote.

Ben,

Here are 36 studies on antineoplastons providing support:

All those studies have been discussed here, and when examined closely they do not support the clinical use of antineoplastons.

For example, probably the most impressive-sounding study on the webpage you link to is one it calls 'Antineoplaston A10 and AS2-1 compares favorably to radiation therapy and chemotherapy in patients with recurrent diffuse intrinsic brain stem glioma', though the actual title of the study is Phase II study of antineoplaston A10 and AS2-1 in patients with recurrent diffuse intrinsic brain stem glioma: a preliminary report.. This was a preliminary report on a Phase 2 trial that states, "The study continues with accrual of additional patients".

Whatever happened to this promising trial? It started in 1998 so it must surely have finished by now, but Burzynski doesn't appear to have published the results. You can see this for yourself on the Clinical Trials website where clinical trials should be registered and their progress recorded: here. Why didn't Burzynski ever publish the results of this trial?

Nearly all Burzynski's patients have had previous conventional treatment, and many of the patients in those studies had conventional treatment along with the antineoplastons, so we don't know what contribution, if any, antineoplastons made to any improvements in those patients. That's why clinical trials are needed, but Burzynski has failed to complete and publish any Phase 2 and 3 clinical trials, so despite thousands of patients being treated we still don't know if the treatment is effective.

Here are 36 studies on antineoplastons providing support: http://www.greenmedinfo.com/substance/antineoplastons

A quick skim of the titles and abstracts doesn't provide any evidence that runs counter to my narrative. I have to go to work now; so looking through them in more detail will have to wait until tonight or later this week. On the other hand, click on the links to my past posts on Burzynski that I provided at the end of this post, and you'll see that I've discussed some of this already. Also, thanks for a convenient listing of the studies Burzynski points to. It'll be useful to me as I write the definitive analysis of Burzynski's dubious treatments.

Also, thanks for a convenient listing of the studies Burzynski points to. It’ll be useful to me as I write the definitive analysis of Burzynski’s dubious treatments.

I look forward to it. It's easy to imagine a lot of Burzynski trolls would take a shine to using such a list for hit-and-run comments, so it'd be convenient to have a one-link response ready.

*scratching my whiskered chin and contemplating what a comparison of IP addresses for Ben & young Robertson (and perhaps our old friend Merola) might show* :-)

Now, now, folks. Don't diss GreenMedInfo.com. The founder, Sayer Ji (to whom the site is registered, along with Cameron Fillers), has been featured on such stellar science-based web sites as mercola.com, naturalnews.com and garynull.com! With credentials like that, how could we not bow to the wisdom to be found there?

it's only worth something if it it has also be featured at Whale.to

Sayer Ji of GreenMed is a subsidiary of Mercola,* not Merola.

The Google reveals a steady trickle of flying monkeys reading something about Orac over at GMI and following the links to leave a dropping here.

The principle seems to be that anything Orac argues against, must therefore be right. GMI have even jumped aboard the climate-change-denial bandwagon -- carbon-emissions control is just part of the evil plot for world domination!! Because Nature.

Here is an amusing webpage in which their contributor "GMIReporter" attempts to use some of Orac's favourite tropes against another skeptical blogger:
http://www.greenmedinfo.com/blog/science-blogs-pseudo-skeptics-crave-sc…
------------------------------------------------------------
* As "Research & Editing Support at Mercola.com".

A meta-analysis published in the cancer journal Clinical Oncology shows that the success rate of chemotherapy is 2.1%: http://www.ncbi.nlm.nih.gov/pubmed/15630849

Ben,
Orac has tackled that paper here.

And here.

!st link fail, but 2nd link works and is more relevant anyway.

Here is an amusing webpage in which their contributor “GMIReporter” attempts to use some of Orac’s favourite tropes against another skeptical blogger

Note that the link back to Cliffy Miller actually is a subscription confirmation link (and doesn't even deliver the original, which has moved or been disappeared outright; here one gets the delicious original comments).

(In which comments Clifford delves into general relativity.)

Regarding this: http://scienceblogs.com/insolence/2011/09/16/two-percent-gambit-chemoth…

Is this criticism, or anything like it, in a peer-reviewed journal? Otherwise, it's not worth responding to.

Also, if there is a criticism in a peer-reviewed journal, it would be interesting to see a response from the author of this meta-analysis: http://www.ncbi.nlm.nih.gov/pubmed/15630849

Keep in mind that it's in a high quality, mainstream journal, and a conclusion like this would be bound to raise a storm, so it would be checked by reviewers for accuracy.

Nevermind, that response is here: http://www.ncbi.nlm.nih.gov/pubmed/15997929

Is this criticism, or anything like it, in a peer-reviewed journal? Otherwise, it’s not worth responding to.

Feel free not to respond to it.

Ben,

Is this criticism, or anything like it, in a peer-reviewed journal? Otherwise, it’s not worth responding to.

That blog post supports its criticism with references to information from peer-reviewed journals. For example it refers to this letter in Clinical Oncology criticizing the paper:

The authors omitted leukaemias, which they curiously justify in part by citing the fact that it is usually treated by clinical haematologists rather than medical oncologists. They also wrongly state that only intermediate and high-grade non-Hodgkin’s lymphoma of large-B cell type can be cured with chemotherapy, and ignore T-cell lymphomas and the highly curable Burkitt’s lymphoma. They neglect to mention the significant survival benefit achievable with high-dose chemotherapy and autologous stem-cell transplantation to treat newly-diagnosed multiple myeloma [4]. In ovarian cancer, they quote a survival benefit from chemotherapy of 11% at 5 years, based on a single randomised-controlled trial (RCT), in which chemotherapy was given in both arms [5]; however, subsequent trials have reported higher 5-year survival rates. In cancers such as myeloma and ovarian cancer, in which chemotherapy has been used long before our current era of well-designed RCTs, the lack of RCT comparing chemotherapy to best supportive care should not be misconstrued to dismiss or minimise any survival benefit. In head and neck cancer, the authors erroneously claim the benefit from chemotherapy given concomitantly with radiotherapy in a meta-analysis to be 4%, when 8% was in fact reported [6].

The authors do not address the important benefits from chemotherapy to treat advanced cancer. Many patients with cancers such as lung and colon present or relapse with advanced incurable disease. For these conditions, chemotherapy significantly improves median survival rates, and may also improve quality of life by reducing symptoms and complications of cancer.

Either way, what's it got to do with Buzynski being a fraud?(he asks him knowingly...)

Either way, what’s it got to do with Buzynski being a fraud?(he asks him knowingly…)

Especially since Burzynski uses conventional chemotherapy as well as his p!ss-panacea.

Ah, Ben's using the 2% gambit. One of my favorite quack gambits designed to scare people away from chemotherapy. It works, too, because people fall for it. No one says chemotherapy is some sort of miracle cure, but, fortunately, when used for appropriate indications chemotherapy does work. Whether Ben is a quackery apologist pushing this nonsense or an innocent who's fallen for this particularly pernicious quack gambit, I don't know. It is, however, nonsense nonetheless.

I predict the DOCumentary will focus on Biased individuals who are supposed to be in charge of Net-Neutrality & Non Fact-Based Pos(t)ers who haven't yet met a Fact they didn't enjoy ignoring. ;-)

I made reference to this response that challenged the meta-analysis: http://www.ncbi.nlm.nih.gov/pubmed/15997929

@Ben

Please clarify your position here for me, I wouldn't want to be accused of mocking you without just cause.

You are saying that because a meta-analysis of current chemo-therapy initially indicates only a small (but still statistically significant) contribution to 5 year survival rates, you are supporting Burzynski, who wont publish ANY data at all?

Hahahahahahahahahahaha!

I gave Bruzynski's studies. That's all. I looked at the criticisms, and will investigate further.

@Ben

None of the links are to completed trials. The few that are not toxicology reports, case studies, in vitro studies etc. appear to be abstracts presenting a mish-mash of preliminary data drawn from various phase 2 trials dating to the 1990s or earlier. As none of the results of the trials that these "best case scenarios" were drawn from were ever published, I think it is safe to say that this provides NO evidence in favour of Burzynski's magic bullet, but rather reinforces the impression that the brave maverick is manipulating the trials process to feather his own nest.

You say: "I also realize that this was inevitable and would have happened even if the Saunders had not sought out Stanislaw Burzynski"
Thus, your whole post becomes meaningless in light of the above statement.

@Feli - except the families would not be out of hundreds of thousands of dollars for a treatment that doesn't work.....

"@Feli – except the families would not be out of hundreds of thousands of dollars for a treatment that doesn’t work….."

And they wouldn't have wasted precious time fundraising instead of being with their child. And the child wouldn't have been put through the side effects of Burzynski's "treatment". And they wouldn't have had their hopes raised by Burzynski's standard lie ("Dr. Burzynski’s explanation for cysts that formed in Amelia’s tumor in which he claimed that this was evidence that his treatment was working") and then had their hopes crushed by reality.

MarkL, still refusing to read I see.

Is that Lawren or LW? Or LW or Lawrence? Or do you have multiple personalities?

@Diddums

Ok. I will try one last time.

You keep talking about the phase II results that show Burzynski is on to something. Indeed you are now claiming (on Pharyngula's thread) the Chinese have completed a phase III trial demonstrating the efficacy of an ANP-like treatment. You have been asked countless times to provide a link to the published results of a completed trial that supports your position, but you never do, you just post gish gallop after gish gallop, spattered with dozens of links to anything you can find, but NONE of the links leads to published phase II trial results.

Now is your big moment. Forget all the bullsh*t you normally post. Just give us the link to ONE completed trial conducted by Burzynski that shows ANP works better than current conventional treatment.

Just one.

A single link, unadorned by your feculent nonsense.

MarkyLMark,

Why give you just 1 link?
Non-SRB history:

1995 – Antineoplaston (Ap) - Japan - CLINICALLY TESTED
Kurume Medical Journal
J-STAGE, Japan Science and Technology Information Aggregator, Electronic
http:// www. ncbi. nlm. nih. gov/m/pubmed/7474850
The effect of Antineoplaston, a new antitumor agent on malignant brain tumors

Antineoplaston (Ap), a new antitumor agent, clinically tested for effects on malignant brain tumors

3 cases of glioblastoma (G,B)
2 cases of anaplastic astrocytoma
1 case of pontine glioma
2 cases of metastatic brain tumor
1 case of medulloblastoma

All patients underwent radiochemotherapy & surgical resection of tumors except cases of
pontine glioma:
metastatic brain tumor
anaplastic astrocytoma

For gliomas, radiochemotherapy was used with Hu-IFN-beta

Ap was administered at a dose a day in combination with remission maintenance therapy of gliomas

1 - Complete response obtained in anaplastic case - M/35 - 330 days

2 - Partial response obtained in cases
pontine glioma:
metastatic brain tumor:
M/53 - 360 days
M/ 7 - 257 days (pontine glioma)

2 - No change observed in cases:
anaplastic astrocytoma - M/35 - 1115 days
multiple brain metastasis - F/48 - 510 days

4 - Disease Progression observed in cases:
3 glioblastomas:
42/F - 720 days
41/F - 90 days
36/M - 180 days
1 medulloblastoma, which showed continuous increase in tumor size - 40/M - 150 days

effects of Ap on malignant brain tumors were considered due to synergy, since administered with other drugs & acceleration of tumor cellular differentiation

Ap is useful as approach to remission maintenance therapy for brain tumors
https:// www. jstage. jst. go. jp/article/kurumemedj1954/42/3/42_3_133/_pdf
(PDF - 8 pgs.)

1995 - A10 & AS2-1 - Japan
Kurume Medical Journal
http:// www. ncbi. nlm. nih. gov/m/pubmed/8667595
Toxicological study on antineoplastons A-10 & AS2-1 in cancer patients

conducted toxicological study of A-10 & AS2-1 in combination with other anticancer agents or radiation in 42 patients, 46 tumors with terminal stage cancer

14 - A-10 was administered to
25 - AS2-1 was administered to

longest term of administration was:
14 - A-10 - 610 days
25 - AS2-1 - 67 days

AS2-1 was administered in:
33 - oral
10 - injectable

longest term was:
33 - 1070 days
10 - 25 days

major adverse effects that may have been related to these agents used in combination with other conventional chemotherapeutic agents or radiation were general weakness, myelosuppression, & liver dysfunction, but effects not seen when Antineoplaston was administered alone

minor adverse effects observed in single use of A-10 or AS2-1 were excess gas, maculopapullar rash, fingers rigidity, reduced cholesterol, reduced albumin, increased amylase, eosinophilia, increased alkaline phosphatase, headache, hypertension, palpitation, peripheral edema but adverse effects didn't limit continuation of either agent

evaluation of usefulness of Antineoplastons in combination therapy based on findings during course of treatment revealed disappearance or measurable shrinkage of tumor lasting more than 1 months was seen in 15 tumors (32.6%)

No increase in size of tumor for more than 3 months was observed in 8 (17.4%)

mean survival time of patients significantly longer than patients with tumors showing progressive increasing (17.52 + 3.31 months vs 4.80 + 0.65 months, p < 0.005)

A-10 & AS2-1 less toxic than conventional chemotherapeutics & useful in maintenance therapy for cancer patients

J-STAGE, Japan Science and Technology Information Aggregator, Electronic
https:// www. jstage. jst. go. jp/article/kurumemedj1954/42/4/42_4_241/_pdf
(PDF - 9 pgs.)

1996 - A10 & AS2-1 - clinical experience found antineoplaston A10 & AS2-1 had an inhibitory effect on human hepatocellular carcinoma - Japan
http:// www. ncbi. nlm. nih. gov/m/pubmed/8755117
Inhibitory effect of A10 & AS2-1 on human hepatocellular carcinoma

hepatocellula carcinoma (HCC) patient whose tumor, after incomplete (TAE) for HCC, has been stable for more than 15 months during which time he has been taking AS2-1 continuously without any serious adverse effects

AS2-1 induced gradual disappearance of viable part of tumor & no metastases of HCC was seen after 13 & 20 months

Patient has been working without any limitations on his normal activity

J-STAGE, Japan Science and Technology Information Aggregator, Electronic
https:// www. jstage. .go. jp/article/kurumemedj1954/43/2/43_2_137/_pdf
(PDF - 11 pgs.)

1997 - AS2-1 - phase I clinical trial - Japan
Oncology Reports
http:// www. ncbi. nlm. nih. gov/m/pubmed/21590224
Antineoplaston AS2-1 for maintenance therapy in liver cancer

AS2-1 showed minimum adverse effects in a phase I clinical trial

2 clinical cases of liver cancer (hepatocellular carcinoma & multiple liver metastases from colon cancer) in whom we believe A2-1 was useful as a maintenance therapy after (TAE) & (MCN)

The 2 patients have continued to be in good condition for more than 2 years without limitation of their normal activities

AS2-1 may be effective & useful as maintenance agent after TAE & MCN in patients with liver cancer

5 - 6/1998 - A10 & AS2-1 - Japan
Oncology reports
http:// www. ncbi. nlm. nih. gov/m/pubmed/9538158
Quick response of advanced cancer to chemoradiation therapy with antineoplastons.

A10 & AS2-1 exhibit growth inhibition of cancer cells by diverse modes of action

observed antitumor responses within 2-3 weeks of combination treatment of chemoradiation therapy & A10 & AS2-1 in phase I clinical study

3 clinical cases of advanced cancer (multiple metastatic lung cancer, thalamic glioma & primary lung cancer) in which we believed A10 & AS2-1 may be contributing to rapid antitumor response

11.- 12/1998 - A10 I - Japan
Oncology reports
http:// www. ncbi. nlm. nih. gov/m/pubmed/9769368
Antineoplaston treatment for advanced hepatocellular carcinoma

A10 injection (A101) showed minimum adverse effects in phase I clinical trial

2 cases of advanced HCC treated with A10 I

Both cases showed interesting responses to A10 I.

1 showed massive coagulation necrosis of tumors after intra-arterial infusion of A10 I

other showed resolution of portal vein tumor thrombosis with systemic infusion of A10 I

6/2000 - M/40 - ascending colon cancer with multiple metastases

7/6/2000 surgery
Numerous metastases in & on surface of liver...

7/7/2000 treatment 5 days on/5 off 3 times

8/3/2000 exhibited progression of disease with increased values of tumor

Treatment with A10 5 days, 3 times month

9/1/2000 exhibited reduction in size & # of metastatic tumors in liver

10/5/2000
Combination A10 & AS2-1 continued

12/5/2000 confirmed partial remission of metastatic liver tumors

12/5/2000 AS2-1 administered as maintenance therapy

1/12/2001 after combination therapy. Size & # of metastatic tumors decreased over 1 month & continued decreasing over 6 months. Liver volume reduced as size of tumor decreased - showed a further reduction in size of metastatic tumors in the liver and of the liver itself

showed marked response to combination therapy, despite failure of initial chemotherapy without A10 or AS2-1. enlarged liver returned to normal size as metastatic tumors shrunk

7/1994 - M/61 - treated by PEI, MCN, & TAE for frequently recurrent hepatocellular carcinoma

3/1997 - 5 tumors

TAE & A10 for 3 weeks

4/1997 AS2-1 maintenance therapy

Other treatment 5 days a week for 2 weeks

9/25/1997 detected multiple lesions, increasing in size & # rapidly over 2 months

12/2/1997 numerous lesions & numerous tumors. A marked reduction in size & # of multiple tumors was observed in 3-4 weeks

Other treatment 5 days a week for 3 weeks with A10 for 4 weeks. AS2-1 were continued during treatment. Patient tolerated procedure well

12/22/1997 showed marked decrease in size & # of multiple hepatocellular carcinomas
http:// www. burzynskiclinic. com/images/Pub_Indep_2002_Novel_Strategy_for_remission_Oncology_Reports.pdf
(PDF - 4 pgs.)

7/3/2000 - A-10 - Egypt
Cancer Letters
Potential utility of antineoplaston A-10 levels in breast cancer
potential utility of A-10 as a predictive test for breast cancer

A-10 level was measured in urine of 31 breast cancer patients & 17 normal women

Significantly lower A-10 levels were detected among patients with breast cancer

data suggest a strong inverse association of urinary A-10 level with breast cancer

Such finding was the stimulus for further investigations of A-10 levels in some benign as well as other malignant diseases to determine utility of this approach as predictive test for women at risk of developing breast cancer.
http:// www. cancerletters. info/article/S0304-3835(00)00408-0/abstract

8/31/2000 - A-10 - Egypt
Cancer letters, Elsevier
Immune modulatory potentials of antineoplaston A-10 in breast cancer patients

Women between 30 & 67

Histologically confirmed diagnosis of breast cancer

Only those with no prior treatment for breast cancer were chosen

All age-matched controls had no history of cancer or any other breast disease
28 patients
28 controls

Immune defects among patients with breast cancer
http:// dr-labouzeid. webs. com/A10-Cancer%20Letters%20157.pdf
(PDF - 7 pgs.)

2002 - A10 & AS2-1 - Japan
Oncology Reports
A novel strategy for remission induction and maintenance in cancer therapy
Kurume

4/12/1999 - M/44 - multiple hepatic metastases (possibly from pancreatic cancer)

4/16/1999 Metastatic / Inoperable

Underwent chemotherapy 5 days
2 weeks non-antineoplaston treatment

6/23/1999 some metastatic tumor size reduction over 1 month

1 week treatment along with A10 for 10 days & AS2-1 for 10 days

Marked reduction in size of metastatic tumors continued for 18 months

8/25/1999 after combination therapy sizes of metastatic tumors reduced markedly by combination therapy & continuously decreased over 1 year

Treatment stopped 8 - 11/1999

12/5.- 25/1999 A10 tolerated very well, only some nausea & appetite loss

Reduction of tumor size

Survived 21 months since initial diagnosis without limiting usual activities

responded quicker & better to combination therapy with A10 & AS2-1 than to previous chemotherapy alone

effect of previous chemotherapy may have been sustained by combination therapy but response to combination therapy was much quicker

Considering that it's very rare that pancreatic cancer with multiple liver metastases responds to chemo- therapy, & this patient responded to combination therapy twice, A10 & AS2-1 contributed to marked response
http:// www. burzynskiclinic. com/images/Pub_Indep_2002_Novel_Strategy_for_remission_Oncology_Reports.pdf
(PDF - 4 pgs.)

2002 - A10 & AS2-1 - Japan
Oncology reports
http:// www. ncbi. nlm. nih. gov/m/pubmed/11748457
A novel strategy for remission induction and maintenance in cancer therapy.

Antineoplaston A10 & AS2-1 are chemically identified & synthesized antineoplastons proven to inhibit cancer cell growth by arresting cell cycle in G1 phase & inhibiting tumor growth by reducing mitosis

These agents are thought to be good candidates for clinically easily applicable non-toxic p53 gene activators

cases of advanced cancer responded well to combination treatment using chemotherapeutics & irradiation with A10 & AS2-1 in clinical trials
http:// www. burzynskiclinic. com/images/Pub_Indep_2002_Novel_Strategy_for_remission_Oncology_Reports.pdf

2003 - AS2-1 - Japan
Oncology Reports
The preventive effect of antineoplaston AS2-1 on HCC recurrence

designed phase II clinical trail to clarify whether AS2-1 prolongs recurrence- free interval of HCC patients who undergo frequent treatments for recurrence

10 patients enrolled in this trial
at initial diagnosis
2 in stage I
6 in stage II
1 in stage III
1 in stage IV-B

10 patients experienced 35 recurrence- free intervals

Recurrence-free intervals during anti- neoplaston AS2-1 administration were significantly longer than those without antineoplaston AS2-1

(16.19±15.916 vs. 5.05±2.897 months: p<0.01)

Patients who experienced recurrence-free intervals with & without AS2-1 showed longer intervals during anti- neoplaston AS2-1 administration than those before & after antineoplaston AS2-1 administration

(14.47±13.821 vs. 5.07±2.989 vs. 5.02±3.009 months: p<0.05)

2 patients in stage I showed longer recurrence-free intervals than those in more advanced stages

AS2-1 prolonged recurrence-free interval between regional treatments & improved survival rate of patients
http:// www. burzynskiclinic. com/images/Pub_Indep_2002_Preventive_effect_of_ANP_Oncology_Reports.pdf
(PDF - 7 pgs.)

6/2003 - A10 & AS2-1 - Japan
Surgery Today
http:// www. ncbi. nlm. nih. gov/m/pubmed/12768372
Long-term survival following treatment with antineoplastons for colon cancer with unresectable multiple liver metastases: report of a case

report a case of survival for nearly 8 years after treatment of unresectable multiple liver metastases from colon cancer, using microwave ablation & nontoxic antitumor agent, the antineoplastons

72-year-old man diagnosed with adenocarcinoma of the ascending colon & 14 bilateral liver metastases underwent right hemicolectomy combined with microwave ablation of 6 metastatic liver tumors

decided to give antineoplastons to inhibit metastatic tumor growth & recurrence

A10 was given intravenously, followed by oral AS2-1

CT scans done 1 & 4 years after the initial diagnosis showed recurrent tumors in S(4) & S(7), respectively

patient underwent a 2nd & 3rd microwave ablation of recurrent tumors, & has survived for nearly 8 years without suffering any serious adverse effects

He is currently free from cancer

case report demonstrates potential effectiveness of nontoxic antitumor agent, antineoplastons, for controlling liver metastases from colon cancer.
http:// link. springer. com/article/10.1007%2Fs10595-002-2503-2

http:// www. springerlink. com/content/b48ch3ha165nbrqp

http:// link. springer. com/content/pdf/10.1007%2Fs10595-002-2503-2

http:// link. springer. com/article/10.1007%2Fs10595-002-2503-2?LI=true

A single link, unadorned by your feculent nonsense.

Clearly this is not a feasible request.
Didy only speaks one language: feculent nonsense.

Suppose someone, let's call her Jeanne, claimed to be able to foretell the future more than half the time, and she asked me for $30K up front to use her powers on my behalf. I say she was either lying or deluded and I certainly will not hand over $30K to her. Then along comes someone else, let's call him Diddy, who throws out reams of unformatted copy-pasta of articles which allegedly report successful predictions by Jeanne, and asserts that I cannot possibly express an opinion as to whether Jeanne can foretell the future until I first find, read, and refute each and every article he can find about Jeanne's alleged abilities.

But I don't need to read the articles. Actions speak louder than words. If she really could foretell the future more than half the time, she'd beat the stock market and be a billionaire. She wouldn't *need* my $30K. If she's trying to get me to pay $30K, then she cannot foretell the future. Period. I don't know if the articles saying she can are mistaken, lying, cherry-picking, or what; I know she can't foretell the future by her actions.

Which brings me to Burzynski. I've only skimmed the iDJiT's copy-pasta, but I don't need to do more. Burzynski with his six million dollar house was squeezing a dying woman who worked as a waitress for more and more and more money. Everything she did to allow her to get the medication he prescribed, without pouring money into his pockets, he countered by throwing in more charges and holding up the drugs she thought she needed, until she paid up. That is vile. That is loathsome. That is nauseating.

But it is also the act of someone so greedy for money that he will stop at almost nothing to get it. If he had an effective cure for cancer, he would prove it and make it available to the world at the highest cost the market could bear. He wouldn't be messing around squeezing waitresses for cash; he'd be putting the squeeze on people like, say, Steve Jobs.

One of Burzynski's victims described on The OTHER Burzynski Patient Group had pancreatic cancer. If Burzynski could cure pancreatic cancer -- if he even had a good track record on pancreatic cancer -- wouldn't Jobs have been the ideal patient for him? Jobs had plenty of money; Burzynski could have charged anything he wanted and Jobs would have paid it -- if Burzynski could have delivered the goods.

But Burzynski didn't treat Jobs. The Japanese researchers of whom the iDJiT is so fond, didn't treat Jobs. The Chinese researchers that the iDJiT is now bringing up didn't treat Jobs.

Actions speak louder than words. Burzynski does not have a cure for cancer.

you are now claiming (on Pharyngula’s thread) the Chinese have completed a phase III trial

Chinese scientists are part of the FDA's paradigm of Phase I, Phase II and Phase III trials? The FDA is bestowing "Phase III" status upon a trial in China? Really?

@herr doktor bimler: "The FDA is bestowing “Phase III” status upon a trial in China? Really?"

Well, yeah. Everybody knows that the FDA controls all medical research and treatment everywhere in the world and possibly everywhere in the universe. That's why all these cheap, all-natural, 100% effective cures languish in obscurity (despite being widely published on the Internet) instead of being adopted by the numerous non-America countries that have people dying every day for lack of hard currency to pay for Big Pharma treatments.

I am frankly amazed at Diddums stupidity. He has already posted this cr@p over on Pharyngula and has been answered there.

All the links are bogus (surprise, surprise), none lead to trial results with the exception of the Japanese trial into an ANP & Hepatocellular carcinoma recurrence that concludes (and I quote) :

. Antineoplaston
AS2-1 could not prevent recurrence

The Chinese trial he is waffling on about has absolutely nothing to do with Antineoplastons, it is looking at a combination Cytidine Deaminase 2/standard chemo treatment.

Because CDA2 can be found in urine, Diddums thinks it MUST be the same as Burzynski's ANPs.

I get the feeling that Diddums is not quite right in the head!

Chinese scientists are part of the FDA’s paradigm of Phase I, Phase II and Phase III trials? The FDA is bestowing “Phase III” status upon a trial in China? Really?

He actually managed to f*ck it up in multiple ways. This is the original assertion:

Phase III Clinical Trials in breast cancer, NSCLC, & primary hematoma reported 6/2005 by China/Taiwan in the Chinese Journal of Clinical Oncology.

The only thing having even a tenuous relationship to Stanley's Magic Piss Infusion in that issue is this. Dilday silently (in the editorial sense) changes this later and diverts with the usual shrieking:

MarkLoser, too lazy to look up the Japanese Phase II Clinical Trial I already posted about on the Orac blog I was posting on previously, &/or do an Internet search like some of the other liars on this blog who have made factually inaccurate statements that I’ve caught them with their pants down under on? I thought so!!!

8/2005 Chinese Journal of Clinical Oncology.
Phase 3 clinical trials of cell differentiation agent-2 (CDA-2): [a urinary preparation, isolated from healthy human urine] Therapeutic efficacy on breast cancer, non-small cell lung cancer & primary hepatoma.

One now has this. Still CDA-2. The idea apparently is that because CDA-2 contains phenylacetylglutamine, this validates Burzynski. The first, and seemingly simple, problem is demonstrating that the putatively active "peak 23.2" of CDA-2 corresponds to A10. I can't even find a chromatogram.

The Chinese trial he is waffling on about has absolutely nothing to do with Antineoplastons, it is looking at a combination Cytidine Deaminase 2/standard chemo treatment.

Different CDA-2, MarkL. This is "cell differentiation agent 2."

Sorry - for Cytidine Deaminase, read "cell differentiation agent" .............its late here!

AdamGee, don't go away mad because you can't prove me wrong, just go away!!! ;-)

MarkyLMark, you're wrong, so wrong, because you fail to read & I've made it clear before that I am not a fan of Orac's web-site blocking - awaiting moderation feature, so I add spaces in the web-site addresses to prevent my posts from being blocked or held up. All the links are correct & work; unlike yourself. :-)
I just proved how wrong you are on the P-blogpost.

I’ve made it clear before that I am not a fan of Orac’s web-site blocking – awaiting moderation feature, so I add spaces in the web-site addresses

You left out "in blisteringly moronic fashion."

Hey LW, you can't cure insomnia!!! ;-)

MoroNaradic, I Stoop down to the STOOPID level for people like you & MarkyLMoronMark who are unable to draw the simple parallel between the Chinese "URINARY preparation, isolated from HEALTHY HUMAN URINE" & SRB's antineoplastons synthesized from HUMAN URINE.
Y'all are just "Piss-Poor" representatives of the denialist movement.

I take it that you are unable to respond to the observation that your tactic for working around automoderation due to inclusion of multiple links is shockingly stupid in execution.

I Stoop down to the STOOPID level for people like you & MarkyLMoronMark who are unable to draw the simple parallel between the Chinese “URINARY preparation, isolated from HEALTHY HUMAN URINE” & SRB’s antineoplastons synthesized from HUMAN URINE.

I further take it that you don't know the difference between "isolated," "synthesized," and "available at retail to start with," Piddles. But, please, I beg of you, show me photos of the piss donors lined up at the back of Burzynski's antineofactory.

@Didymus Judas Thomas: "At the Tu-Quack Center LW Lawrence Larry LarryWritus Library"

Yeah, iDJiT, you caught me. I am Lawrence. Transitively, I am also Brian Deer. And Bonnie Offit. And Kathleen. And Spartacus.

Did you actually read The OTHER Burzynski Patient Group? Did you actually read about the way Burzynski convinced a dying woman that she needed his nostrums to stay alive, then, when she found a way to get the real treatments free, added on more charges and held the nostrums hostage until she paid up?* Did you think about what kind of monster would do that? Did you ask yourself why a monster that greedy for money wouldn't prove his treatment worked and then put it on the market for all the market would bear?

I know you're math-challenged, so I'll work out the numbers for you. The American Cancer Society reports ( http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/docum… ) over 1.6 million new cancers in the United States in 2012. Lets say Burzynski's nostrums worked for just 1% of cancers. I'll help you out by saying that would mean his nostrums worked for about 16,000 people per year. If he proved his his nostrums worked, he could set the costs of treatment at, say $50K, which is less than he extracts from his average victim, and he would have an annual income of a cool $800,000,000 per year, just from patients in the United States. In the past 35 years, instead of pretending to run clinical trials in order to extract money from desperate dying people, he could have become by far the richest man in the world, not to mention being showered with praise and awards and going down in history.

Why hasn't he, iDJIT?

* If I'd been in her shoes, at this point I would have reported him to the Better Business Bureau and the Texas Attorney General as well as the Texas Medical Board.

Link to The OTHER Burzynski Patient Group:

http://theotherburzynskipatientgroup.wordpress.com/

It's been given before but might be overlooked. Anyone considering going to Burzynski should read it. And think about it: in thirty-five years, Burzynski has never managed to competently organize, execute, and report a proper clinical trial. It isn't that hard to do; I know a doctor in private practice who did exactly that, and in three years not thirty-five.

Why would you trust Burzynski to have a real cure, if he hasn't managed to competently organize, execute, and report a proper clinical trial to prove it?

Duddy has just one trick in his repertoire, and it's not even a good trick. I think I've come up with a good name for it, though.

Good drivers and bad drivers often distinguish themselves by how they use their horns. A good driver understands that the purpose of the horn is to alert another driver, to say "Hey, be aware! Be careful! You're doing something ill-advised!" Piss-poor drivers, by contrast, believe that the horn comes standard on the car as a weapon, used to punish other drivers for not doing exactly what the driver leaning on the horn wants them to do.

Duddy would love to be one of those clever people who can actually do things like think through an issue, employing logic. If he could do that, maybe he could win some converts for the wonder-working Mr. B! But since he's not clever at all, he settles for car-horning, trying to punish with his obnoxiousness anyone who dares to point out the flaws in his precious Mr. B's behavior.

@LW

I’ll help you out

Given Don't Know Diddly's mad math skilz that is definitely required.

@Antaeus Feldspar

Have you ever seen that bumper sticker that reads "Keep honking, I'm reloading"?

Nary-d-truth, was this post supposed to be addressed to anyone in particular?
.
"I take it that you are unable to respond to the observation that your tactic for working around automoderation due to inclusion of multiple links is shockingly stupid in execution."

Issue with reading comprehension, Piddles?

Narady, your friends at Quakerwatch:
.
"Tracing the biochemistry involved in Burzynski's synthesis of antineoplastons shows that the ..."

Antineoplastons were originally isolated from human urine but are now synthesized from readily available chemicals in the developer’s laboratory

http://www.cancer.gov/cancertopics/pdq/cam/antineoplastons/healthprofes…

Big Whoop.

Narady, don't comprehend how to address your Blatherposts to a particular individual?

You know, I've been wondering something. If antineoplastons are so great and miraculous and have been curing cancer for thirty-five years ...

Why is Burzynski prescribing chemotherapy?

My guess is that he can extract more money from his victims by extravagently marking up multiple drugs instead of just one, though it's possible that he's trying to get the mortality rate down so it isn't so obvious that antineoplastons have no effect.

Does anyone know his excuse?

Why is Burzynski prescribing chemotherapy?
He (or someone on his staff) can read a weathervane. "Personalised gene-targetted therapy" are the hot buzzwords, and you can't offer that with only concentrated urine.

Long-Winded, if you were actually paying attention & comprehending what has been posted on this blog you would know that I have already visited that other BlatherBlog & was immediately turned off by the author's inane sidebar commentary. Anybody can post GIGO on the net but where are they when it comes to backing up their assertions in a court of law? And I don't want to hear the old lame "they can't afford it" excuse or other "whine & cheese" excuses, because there are Pro Bono legal services for those who actually have a chance to win in a pissing contest. Gee, I wonder if we can start a blog for all the people who died while on chemotherapy or radiation or pick your choice cancer treatment & whine about all the "Quacks" out there who can't cure cancer with their particular treatment. Still ignoring the "fact" that SRB doesn't claim to be able to cure all types of cancers? Still ignoring how much clinical trials cost? Still ignoring that clinical trials require patients with a certain type of cancer? Still ignoring the National Cancer Institute at the National Institutes of Health cancer . gov web-site & cherry-picking what you like off of it & ignoring what you don't like? Still ignoring actual clinical trials & instead relying on the opinion of those who haven't don't a kick of actual research re antineoplastons & published it, including where it may be available to be found on PubMed? Still ignoring reality & instead focusing on non-fact-based opinion of those who whine & cheese about something they don't bother to research? Still ignoring when research by others re antineoplastic was started in other countries & how long it took them to do phase I & II & III clinical trials in their country as compared to the USA? Have you done a comparison study of cancer research & determined how long it took from initial research to market, & how it is that the FDA has allowed other cancer treatments to pass go & proceed to market while skipping certain trials, yet requiring SRB to continue on through phase III? Still ignoring that the USA is in debt to China, & maybe there's a reason why the USA is being passed in international rankings in a # of areas & maybe this trend is going to contine? Blah, blah, blah...

@herr doktor bimler

Why is Burzynski prescribing chemotherapy?
He (or someone on his staff) can read a weathervane. “Personalised gene-targetted therapy” are the hot buzzwords, and you can’t offer that with only concentrated urine.

Doubtless that's so, but I wonder what his excuse is to patients.

Narady, don’t comprehend how to address your Blatherposts to a particular individual?

I quoted you, shıtwit.

He is prescribing chemo because he makes a hell of a lot of money selling it to his marks. Read Denise's story on TOBPG site: when she managed to get some drugs provided free on compassionate grounds (she was unemployed, single, no insurance) from "Big Pharma", Burzynski's clinic suddenly tacked on a $1500 monthly service charge to compensate for revenue they were losing selling her the drugs. That's a hell of lot of profit to have to make up.

And of course while Big Pharma provided her drugs free, on compassionate grounds, Stan refused and continued to charge her for his ANPs.

This poor woman spent the last few months of her life battling cancer and not sleeping because she was so worried about coming up with the money to pay Stan.

@iDJiT:

Long-Winded

I'm guessing this is addressed to me.

if you were actually paying attention & comprehending what has been posted on this blog you would know that I have already visited that other BlatherBlog & was immediately turned off by the author’s inane sidebar commentary

Other BlatherBlog? The only other blog the iDJiT has mentioned is Pharyngula, and the only other blog I've mentioned is The OTHER Burzynski Patient Group (
http://theotherburzynskipatientgroup.wordpress.com/ . Here's the disclaimer on the sidebar of The OTHER Burzynski Patient Group):

Disclaimer

This website is NOT affiliated with the Burzynski Patient Group, the Burzynski Clinic, or the Burzynski Research Institute. Those are all awful. Nor does this site mean to represent the views of any of the Clinic's current or former patients or those of their families or loved ones. All information posted here was either freely available online or in the press at the time of writing. Please follow the links included and hear the patients' stories in their own words as well

I wonder why the iDJiT, who claims not to be a fanboy of Burzynski but just interested in seeing all sides of the story told, would be turned off by this. The blogger states very clearly that he is NOT affiliated with Burzynski or any of Burzynski's PR operations. He needs to state that so he doesn't get sued for infringement. The blogger observes that "Those are all awful." That's his opinion (with which I heartily agree), but it's expressed politely without cursing or gutter language. The blogger then goes on to say that he doesn't represent anyone else and that the information is freely available (i.e., that he didn't breach anyone's privacy, another statement he needs to make to avoid being sued), and he urges the reader to follow the links so they can see that he is not misrepresenting anyone.

No neutral individual would be turned off by that disclaimer, but the iDJiT was. No surprise there; the iDJiT's pretense of neutrality wore off a long time ago.

Anybody can post GIGO on the net

Witness, e.g., the iDJiT's blather.

but where are they when it comes to backing up their assertions in a court of law? And I don’t want to hear the old lame “they can’t afford it” excuse or other “whine & cheese” excuses, because there are Pro Bono legal services for those who actually have a chance to win in a pissing contest.

I'm guessing this is asking why Burzynski's victims don't sue him. Well, besides the fact that they're generally dead, probably for the same reason that victims of other conmen often don't sue. In this case it would be particularly hard because Burzynski seems to be careful not to make the extravagent claims himself; he leaves it to others. So victims come in believing that he's a miracle worker who can save them, but there's no statement by him that could be produced in a court of law, in the same way that he slithered away from the Texas Medical Board by asserting that he didn't actually treat patients or supervise the doctors who did, which may be a surprise to the patients.

Gee, I wonder if we can start a blog for all the people who died while on chemotherapy or radiation or pick your choice cancer treatment & whine about all the “Quacks” out there who can’t cure cancer with their particular treatment.

Yawn. Typical tu quoque from a quack supporter. Yes, people sometimes die while on chemotherapy. My stepmother did and I miss her every day. But real oncologists use real treatments that have been really tested and have real evidence of effectiveness. They don't always work, and in some cases they really only make passing less painful. But they're tested and we know what they do. Burzynski's nostrums aren't even tested.

Still ignoring the “fact” that SRB doesn’t claim to be able to cure all types of cancers?

Nope, I pointed out that he could have been the wealthiest man on the planet if he could cure just one percent of all cancers. If he could cure all cancers, his potential income could be measured in the tens of billions, not the hundreds of millions.

Still ignoring how much clinical trials cost?

I know a physician who ran his own clinical trial while he was in private practice (he's retired now). He could afford it. Burzynski is a whole lot wealthier than he was. Burzynski could afford it too. And even if he couldn't, what has he been charging his victims for? To be in clinical trials! So he's arranged funding for his clinical trials and there's no basis for your whining about the expense of clinical trials. He runs his trials, he watches his victims die, and he doesn't publish any results. That's what we object to the most! It's not just the charging to participate in trials, it's the charging to participate in trials that don't produce any results. My stepmother was in a clinical trial. We hoped she would be the lucky one who made it. She didn't, but at least we know that the results were published and maybe helped somebody else. Burzynski denies his victims even that.

Still ignoring that clinical trials require patients with a certain type of cancer?

What does that have to do with anything? Burzynski lures his victims in and charges them to participate in clinical trials. Whatever the trials require, he's obviously okay with it.

Still ignoring the National Cancer Institute at the National Institutes of Health cancer . gov web-site & cherry-picking what you like off of it & ignoring what you don’t like?

What are you babbling about now? I've pointed out that the Phase III trial isn't open for recruitment. What's cherry-picking about making that statement?

Still ignoring actual clinical trials & instead relying on the opinion of those who haven’t don’t a kick of actual research re antineoplastons & published it, including where it may be available to be found on PubMed? Still ignoring reality & instead focusing on non-fact-based opinion of those who whine & cheese about something they don’t bother to research?

Again what are you babbling about? Burzynski hasn't reported the results of his pretended trials. He's reported a few, cherry-picked, good results. Out of many thousands, a few will get better even with no treatment. So what? Is it your opinion that the only people who can critique Burzynski's lack of results are people actually researching his alleged cure? Is that your response to every critique of every Big Pharma drug too?

Still ignoring when research by others re antineoplastic was started in other countries & how long it took them to do phase I & II & III clinical trials in their country as compared to the USA?

What does that have to do with anything? Burzynski's had thirty-five years and hasn't produced a usable cure. Other countries have had the same thirty-five years and they haven't produced a usable cure either.

Have you done a comparison study of cancer research & determined how long it took from initial research to market, & how it is that the FDA has allowed other cancer treatments to pass go & proceed to market while skipping certain trials, yet requiring SRB to continue on through phase III?

Do you think Burzynski should be allowed to proceed to market without publishing a single Phase II trial? Is that what you really think? Do you really think it is unfair to demand that Burzynski at least show that his treatment works on something first?

Still ignoring that the USA is in debt to China, & maybe there’s a reason why the USA is being passed in international rankings in a # of areas & maybe this trend is going to contine?

What? Were we talking about global economics here, or Burzynski's pretended treatments?

Blah, blah, blah…

Yeah, that's a good summation of your comment.

I read on one of the other sites (Josephine Jones, perhaps?) that when a new Burzynski customer signs the reams of releases and papers on admittance, one of those releases concerns refunds of outstanding payments if (when) the patiend dies.

Apparently buried in that paperwork is an agreement that Burzynski can take two years to repay any balance owing, and he can stretch those payments out in installments.

Maybe Bob B. can help if he's reading this. I seem to remember seeing him tweet it somewhere.

LW,

DJT meant he was turned off by Bob B.'s very insightful commentary that illuminates each patient's case story.

Not that I would EVER claim to speak on his behalf. I just remember a comment he posted on the "Technicality" thread about being turned off by a comment about Hurricane Katrina or something and how it affected a Burzynski's patient's ability to secure a hotel room in Houston. He said he stopped reading after that.

@Marc Stephens Is Insane : the iDJiT said s/he "was immediately turned off by the author’s inane sidebar commentary". So I looked at the sidebar and all I found was the disclaimer. But perhaps you're right. Still, only a fanboy would be turned off by the commentary. I'm turned off by the horror of Burzynski's cruelty and his victims' suffering, but that's different.

Still ignoring how much clinical trials cost? Still ignoring that clinical trials require patients with a certain type of cancer?

So Stan can't afford the clinical trials that he is nominally running as the loophole for treating people, or isn't able to find the right kind of cancer, and is simply lying when he recruits people for clinical trials? And that the people who sign forms accepting that they are part of a clinical trial are the victims of that lie?

I don't see how this works as a defense of the guy.

Either Burzynski is conducting clinical trials or he isn't. If he isn't, then he is a liar. If he is, then he is suppressing the outcomes. Terence, this is stupid stuff.

LW, my theory would be that since SRB's publications indicate he's paying attention to the Japanese research, & he published re chemo in 1986, that he may be doing combination therapy.
.
BURZYNSKI SR. Altered methylation complex isozymes as selective targets for cancer CHEMOTHERAPY. Drugs Exp Clin Res. 1986; 12 (Suppl. l): 77–86
.
Quick response of advanced cancer to chemoradiation therapy with antineoplastons
Oncol Rep. 1998 May-Jun;5(3):597-600.
Department of Anesthesiology, Kurume University, School of Medicine, Japan.
Antineoplastons A10 & AS2-1 exhibit growth inhibition of cancer cells... We observed antitumor responses within 2-3 weeks of combination treatment of chemoradiation therapy & A10 & AS2-1... we believed antineoplaston A10 & AS2-1 may be contributing to rapid anti tumor response.

@Ditto - what the hell has Dr. B been doing for the last 13 years?

Naray, really? Really?? REALLY???
.
Where's that "quote?"
.
Narad
January 20, 2013
I take it that you are unable to respond to the observation that your tactic for working around automoderation due to inclusion of multiple links is shockingly stupid in execution.

LWhere?
.
Let me assist you:

Didymus Judas Thomas

Looking for a "FACT-CHECKING" Informed Patient Advocate
December 26, 2012
12/24 Comments:
.
Marc Stephens Is Insane
.
December 24, 2012
.
“I just found a new website by chance and wanted to pass it along.”
.
“Kudos to whomever put this website together.”
.
_____Yeah, I was SO impressed when right off the bat I read:
.
_____”They initially might have had a difficult time finding a place to stay because refugees from Hurricane Katrina had been arriving in Houston, but they were set up in an apartment:”
.
_____WHAT? Do we really need someone posting GIGO like that?

@iDJiT: "Let me assist you:"

Oh, so on Dec 26 (twenty-five days ago), the iDJiT looked at The OTHER Burzynski Patient Group ( http://theotherburzynskipatientgroup.wordpress.com/ ) and consequently should not be expected to ever look at it again. Nor should anyone suppose that the iDJiT could ever learn anything new from later posts on that blog.

Right.

That makes sense to me, actually. It explains a lot about the iDJiT.

LWhine & Cheese, "in the same way that he slithered away from the Texas Medical Board by asserting that he didn’t actually treat patients or supervise the doctors who did, which may be a surprise to the patients."
.
Whine, whine, whine & Cheese.
.
If the SOAH doesn't have lawyers that know the law & how to do legal research, shame on them.

@LW - wow, I think we may just have reached the ninth circle of the Internet, trying to decode / decrypt what the hell Ditto troll is supposed to be saying....

@ditto troll - so, if lawyers are able to convince a Judge that Dr. B isn't actually treating patients, but we see numerous examples of Dr. B actually participating in treatment discussions with "clients" - what exactly are we supposed to think?

I once sent complaints to the Better Business Bureau and the Texas Attorney General, and I got very prompt results, including a refund and an apology (and a very bogus explanation).

I wonder if Burzynski's victims -- or their survivors, usually -- could do the same. They seem to be under the impression that Burzynski was supervising their treatment, but he's now on record as saying he's not.

And adding new undisclosed charges because the victim is not paying his inflated prices -- and then withholding pretended life-saving drugs until the victim pays up on the new undisclosed charges -- that sounds like something law enforcement would be interested in. Unfortunately the victim in that case had no spouse, significant other, or children to follow up after she died.

Naray, really? Really?? REALLY???
.
Where’s that “quote?”

Piddles is correct; I quoted it in the immediately following and different comment, regarding its failure to understand the meaning of "synthesized." On the other hand, one might note that it recognized that it was being addressed, reducing this to yet another exercise in diversion.

LWho-Done-It, really? Really? REALLY???
.
"But they’re tested and we know what they do. Burzynski’s nostrums aren’t even tested."
.
I guess the National Cancer Institute at the National Institutes of Health (cancer . gov) [a part of the US Federal Gub-Ment] is lieing to us!!!
http://deainfo.nci.nih.gov/advisory/ncab/123_0902/Bell.pdf

LWu-quoqu, I love how y'all always pull your "tu quoqu" excuse out.

Following the iDJiT's latest link, I learned enthralling things like this:

Definition of a
Special Government Employee

• A Special Government Employee is an
officer or employee in the executive
branch of the Federal Government who is
appointed to perform temporary duties,
with or without compensation, for a period
not to exceed 130 days during any period
of 365 consecutive days

• As a Member of the NCAB, you are a
Special Government Employee

I found no mention of either Burzynski or his nostrums in that powerpoint presentation, which appears to be orientation for new employees.

I guess the National Cancer Institute at the National Institutes of Health (cancer . gov) [a part of the US Federal Gub-Ment] is lieing to us!!!

I take it that you missed the parts where (1) linking to a PowerPoint presentation to "demonstrate" what everyone knows in the first place is moronic and (2) that you're back to the fact that the NCI angle is weaksauce of the first water.

LWhere's the Beef, "I know a physician who ran his own clinical trial."
.
No cite?
.
"A" clinical trial?
.
Do you have the tax return / financial info for SRB & the BC?
.
Is this the best you can do?
.
Where are your references?
.
Maybe you should run over to some other site on the net & whine about Neutrality, because I enjoy trying to get y'all yo back up your statements with references. I don't care if you're WikiLeaks, I will call you out if you can't support your posts with correct info, pro or con.

So iDJiT, what's your view?

Is Burzynski unable to afford to run clinical trials with the tens to hundreds of thousands of dollars he gets from each victim, in which case he's lying through his teeth when he claims to be running clinical trials?

Or is Burzynski able to afford to run clinical trials with the tens to hundreds of thousands of dollars he gets from each victim, but he just doesn't bother?

I don’t care if you’re WikiLeaks, I will call you out if you can’t support your posts with correct info, pro or con.

I take it that you are still struggling with the concept of irony.

LWikiLeak, "he doesn’t publish any results.?"
.
So, the National Cancer Institute at the National Institutes of Health is lying to us?
.
"Published information includes results from phase I clinical trials, phase II clinical trials, and case reports."
http://www.cancer.gov/cancertopics/pdq/cam/antineoplastons/patient/page2
.
"Publications have taken the form of case reports, phase I clinical trials, toxicity studies, and phase II clinical trials."
http://www.cancer.gov/cancertopics/pdq/cam/antineoplastons/healthprofes…
.
"Table 2 summarizes the following clinical trials and appears at the end of this section."

LWhyCite, "What does that have to do with anything? Burzynski lures his victims in and charges them to participate in clinical trials. Whatever the trials require, he’s obviously okay with it."
.
No cites? Where are your references? You're like dust in the wind.
http://m.click2houston.com/news/Houston-cancer-doctor-draws-new-complai…
.
http://www.jag-lawfirm.com/burzynski-suit-kprc-02012012.html
.
http://court-record-report.com/record/591438/201203429

Randomized controlled trials give the highest level of evidence. In these trials, volunteers are put randomly (by chance) into one of 2 or more groups that compare different treatments. One group (called the control group) does not receive the new treatment being studied. The control group is compared to the groups that receive the new treatment, to see if the new treatment works. No randomized, controlled trials showing the effectiveness of antineoplastons have been published in peer-reviewed scientific journals.

In 1991, the National Cancer Institute (NCI) reviewed some of Dr. Burzynski’s cases and decided to conduct clinical trials on antineoplastons at cancer centers. By August 1995, only 9 patients had enrolled and the clinical trials were closed before being completed. The U. S. Food and Drug Administration (FDA) gave Dr. Burzynski permission to conduct clinical trials of antineoplaston therapy at his own clinic. Ongoing non-randomized clinical trials at the Burzynski clinic continue to study the effect of antineoplastons on cancer.

To date, no randomized controlled trials examining the use of antineoplastons in patients with cancer have been reported in the literature. Existing publications have taken the form of case reports or series, phase I clinical trials, and phase II clinical trials, conducted mainly by the developer and his associates. While these publications have reported on successful remissions with the use of antineoplastons, other investigators have been unable to duplicate these results [10] and suggest that interpreting effects of antineoplaston treatment in patients with recurrent gliomas may be confounded by pre-antineoplaston treatment as well as imaging artifacts.[11,14,16] Reports originating from Japan on the effect of antineoplaston treatment on brain and other types of tumors have been mixed, and in some Japanese studies the specific antineoplastons used are not named.[9] In many of the reported studies, several or all patients received concurrent or recent radiation therapy, chemotherapy, or both, confounding interpretability.

Looking at Table 2, I find two entries that are labelled "Phase II clinical trial"; they are footnoted to "Buckner JC, Malkin MG, Reed E, et al.: Phase II study of antineoplastons A10 (NSC 648539) and AS2-1 (NSC 620261) in patients with recurrent glioma. Mayo Clin Proc 74 (2): 137-45, 1999." -- in other words (a) they were in 1999 or earlier and (b) they were not conducted by Burzynski.

In Table 2, I find five entries labelled "Phase II study"; they are footnoted to three papers by Burzynski, in 2003, 2004, and 2005. From the descriptions, it appears there are actually only three studies (but apparently no clinical trials), "Recurrent and progressive multicentric glioma in children", "Recurrent diffuse intrinsic brain stem glioma", and "Primitive neuroectodermal tumor", and they total all of thirty-seven (37) patients out of the hundreds he presumably treated in those three years.

Finally, there is a "Summary of data, phase II trials" reported in 2006, covering just eighteen (18) patients, and a "Consecutive case series (phase II trial)" reported in 1990, covering fourteen (14) patients.

So out of the thousands "treated" by Burzynski in some sixty "clinical trials", we have a grand total of sixty-five (65)* whose cases were reported by Burzynski in anything that the NCI called a Phase II trial or study. That is an exceedingly meager output.

* Not 67 because the NCI says two were duplicates.

Both quotes above from Diddumb's own reference.

Actually I guess it's unfair to say " From the descriptions, it appears there are actually only three studies (but apparently no clinical trials)". Maybe they were clinical trials, but all three were "accruing additional patients" when reported between seven and nine years ago. No final results yet.

Of course, Burzynski is quite lackadaisical about accruing patients -- his Phase III trial isn't even open to accruing patients, and it's supposed to have preliminary results this year.

In short, according to the iDJiT's own reference, in thirty-five years Burzynski has not reported the final result of any Phas II trial. Well done, iDJiT!

LWhy, "Still ignoring the National Cancer Institute at the National Institutes of Health cancer . gov web-site & cherry-picking what you like off of it & ignoring what you don’t like?
.
_____What are you babbling about now? I’ve pointed out that the Phase III trial isn’t open for recruitment. What’s cherry-picking about making that statement?"
.
So, you completely ignored my previous posts about this subject:
.
Didymus Judas Thomas
.
Looking for Intelligent Life on a ScienceBlog
December 26, 2012
12/24 Comments:
.
LW
.
December 24, 2012
.
And then DJT refers us to this Phase III trial. Ah, yes, I remember it fondly. It seems like only a year ago we were talking about that trial … oh, wait, it was a year ago. I had fun posting progress reports on time remaining to enroll participants. And we find, a year later:
Estimated Enrollment: 70
.
Study Start Date: December 2011
.
Estimated Study Completion Date: December 2015
.
Estimated Primary Completion Date: December 2013 (Final data collection date for primary outcome measure)
.
And he still hasn’t enrolled seventy participants and started his study: “This study is not yet open for participant recruitment.”
*Yawn*. So much for that “evidence” of the effectiveness of Burzynski’s “treatments”.
.
_____YAWN! So much for you actually understanding the process:
.
_____And you continue to play ign’nt, or maybe you actually are!
.
_____Didymus Judas Thomas
.
Searching for the 0.02%
.
December 20, 2012
.
12/10 Comments:
.
_____ME: And if you were actually paying attention to what’s going on you would understand that:
.
1. There are costs associated with a Phase III Clinical Trail, and therefor funds have to obtained,
.
2. Patients of a sufficient number need to be obtained who specifically fit the “Children with Newly-Diagnosed Diffuse Intrinsic Brainstem Glioma” category,
.
3. Parents need to be convinced to allow their Children to have their Brains be exposed to Radiation,
.
4. And there may be other factors as well.
.
Do I need to repost my post about the Phase III Feasability Study also?

@LW: Buckner et al. is the zippo-bang in which Scamley wasn't able to... ¿cómo se dice?... get his shit together enough to demonstrate that he is a Great and Golden Polahamic bóg despite its having been funded to the tune of a new carriagehouse.

LWhatsit, "So what? Is it your opinion that the only people who can critique Burzynski’s lack of results are people actually researching his alleged cure? Is that your response to every critique of every Big Pharma drug too?"
.
I enjoy how some Tu-Quackers want to reply on opinions of people who have not done independent research on the subject-matter. I can run around postulating that this theory is questionable & that theory is not published in a publication published using "green" technology. I want to ignore any post that has already addressed this. So ... as I've posted before, if people can't remember what has been posted, maybe they're posting too much GIGO.

I do find it mildly amusing that Piddles, despite having latched onto the term like dog with a dead bird, still hasn't figured out that GIGO isn't a noun.

LWriteItOff, "Do you think Burzynski should be allowed to proceed to market without publishing a single Phase II trial? Is that what you really think? Do you really think it is unfair to demand that Burzynski at least show that his treatment works on something first?"
.
So, you read my prior post about what drugs had been allowed to proceed to market without going through phase III & what they were based on, & you had no problem with that, right?

LWhtCare, "What? Were we talking about global economics here, or Burzynski’s pretended treatments?
Blah, blah, blah…
Yeah, that’s a good summation of your comment."
.
So ... if we allow other countries to overtake us in the cancer treatment field because we are biased in our treatment of medical research in this country, thus causing a chilling effect like we've done with manufacturing jobs, no problems. Maybe we can ship SRB to Japan or China!!!

Marc Stephens Is Insane
.
January 20, 2013
LW,
DJT meant he was turned off by Bob B.’s very insightful commentary that illuminates each patient’s case story.
.
Yeah LW, THAT is soooooi incitefull!!!
.
”They initially might have had a difficult time finding a place to stay because refugees from Hurricane Katrina had been arriving in Houston, but they were set up in an apartment:”

LazyWawrence,"@Ditto – what the hell has Dr. B been doing for the last 13 years?
.
If you read his publications you'd know; you know, besides having to meet with RJ about all those frivolous nuisance lawsuits.

”They initially might have had a difficult time finding a place to stay because refugees from Hurricane Katrina had been arriving in Houston, but they were set up in an apartment:”

One month later and I still fail to see the problem with this sentence and fail to understand how it discredits an entire website full of true stories.

What does bother me is reading how Burzynski sucks his clients dry of every cent they have.

All the information on TOBPG site is taken directly from patients' blogs, websites, newspaper articles, etc. If the patient's family said they had trouble getting a room in the wake of Katrina, what's the problem? Please explain it to me.

Lu-Wuoque, "Oh, so on Dec 26 (twenty-five days ago), the iDJiT looked at The OTHER Burzynski Patient Group ... and consequently should not be expected to ever look at it again. Nor should anyone suppose that the iDJiT could ever learn anything new from later posts on that blog.
Right.
That makes sense to me, actually. It explains a lot about the iDJiT."
.
I actually have more important things to do than keep checking up on some web-site you may be plugging since the Society of Mutual Agrandizement needs someone to entertain them here where less thick-skinned individuals are run off by the non-fact cited tu quoque Tu-Quackers who pat each other on the head in mutual admiration thinking that if they post enough GIGO it will actually come true. Someone needs to give y'all a "reality check" & I'm happy to do it though I don't have the time to even address all the inaccurate statements on here. There are enough of you anti-antineoplaston bloggers that you need someone on here to remind y'all that there are actually resources available on the net which you can access before foaming at the mouth. So, has your pal stopped posting inane comments about people maybe finding room in the stable to stay because the inn might have been full?

Lawrence

January 20, 2013
@LW – wow, I think we may just have reached the ninth circle of the Internet, trying to decode / decrypt what the hell Ditto troll is supposed to be saying….
.
"Mene, Mene, Tekel, u-Pharsin."
http://en.m.wikipedia.org/wiki/The_writing_on_the_wall
.
Troll is a word that people like you; who are unable to hold an intelligent conversation, use as a crutch.

Lawhinencw, "@ditto troll – so, if lawyers are able to convince a Judge that Dr. B isn’t actually treating patients, but we see numerous examples of Dr. B actually participating in treatment discussions with “clients” – what exactly are we supposed to think?"
.
People with small troll-sized minds resort to calling others "trolls" to mask their inadequacies. No cite. Nice. How do you do it???

Maybe we can ship SRB to Japan or China!!!

Given that Scamley is of no scientific or other value at all to the human race, I think you're going to have a hard time finding takers.

(He doesn't look like he would fetch much for meat, either.)

NaraDetail, "I take it that you missed the parts where (1) linking to a PowerPoint presentation to “demonstrate” what everyone knows in the first place is moronic and (2) that you’re back to the fact that the NCI angle is weaksauce of the first water."
.
I take it you missed the 1st page so someone needed to remind you mnemonic
http://en.m.wikipedia.org/wiki/Mnemonic
.
& have you gone on cancer . gov & sent them one of your diatribes, or do you just "whine & cheese" herewith? Because I've actually sent them a suggestion.

LWillYouGiveMeACheeseburgerToday&IWillPayYouTomorrow, "LW

January 20, 2013
So iDJiT, what’s your view?
Is Burzynski unable to afford to run clinical trials with the tens to hundreds of thousands of dollars he gets from each victim, in which case he’s lying through his teeth when he claims to be running clinical trials?
Or is Burzynski able to afford to run clinical trials with the tens to hundreds of thousands of dollars he gets from each victim, but he just doesn’t bother?"
.
My view is that you should contact the BC & ask. Or is that taking you out of your comfort level of hiding behind your keypad?

Naradurinal, "I don’t care if you’re WikiLeaks, I will call you out if you can’t support your posts with correct info, pro or con.
I take it that you are still struggling with the concept of irony."
.
I take it that you are still struggling with the concept of Wiki "Leaks."

MarcyNCIan, "Both quotes above from Diddumb’s own reference."
.
Have you gone on cancer . gov & requested that they update their web-site to reflect SRB's & the Japanese publications after those dates?

LWehash, "No final result yet.
Of course, Burzynski is quite lackadaisical about accruing patients — his Phase III trial isn’t even open to accruing patients, and it’s supposed to have preliminary results this year."
.
Nice rehash of what you posted after you ran out of fingers & toes to count how many days ago.

I actually have more important things to do

Thank you, DJT; that made my day.

LWowUsWithYourWeticence, "In short, according to the iDJiT’s own reference, in thirty-five years Burzynski has not reported the final result of any Phas II trial. Well done, iDJiT!"
.
I'm sure you remember what I posted about this previously, because we all know you read every post on this blog & retain the gist of it.

wtf wow um ok

there's no real compassion or sympathy is there if It is willing to write off all those heart wrenching stories simply because someone had a hard time getting a room...

Um. I don't think DJT speaks English. I've seen some pretty questionable word salad before (and even read some Gertrude Stein) but nothing quite... like that.

Maybe we'd better just leave him alone. I don't think anyone's going to be convincing him of any sort of reality any time soon and I'm starting to worry that he'll hurt himself or someone else somehow.

So no answer on why the hotel room/Katrina story bothered you so much on TOBPG site? I asked you to explain it to me as I really don't understand the problem. So much for the "intelligent" conversation you're seeking. I tried to talk to you like a rational adult; I guess I should have known better.

Getting back to the original topic - I think it's great that people are raising money for St. Jude. It's a fine institution that does great work.

However, I personally don't believe that the appeal to Dr. Burzynski to make a matching contribution has any moral suasion. I think he would be perfectly justified in ignoring the whole thing, or saying words to the effect of "It's great you're supporting such a worthwhile organization; I choose not to participate."

I personally don't feel obligated to match the pot - or even contribute at all - when people in the office collect contributions to Komen, local orphanages, or other worthwhile causes. I contribute to charities based on my values, budget, and evaluation of need and don't make a big deal of telling people I've done so.

I do hope they raise a lot of money for St. Jude, and wish them great success. If Dr. Burzynski contributes, great. If not, that's his right.

What's really odd about the comment the iDJiT found so off-putting (”They initially might have had a difficult time finding a place to stay because refugees from Hurricane Katrina had been arriving in Houston, but they were set up in an apartment:”) is that it's just summarizing part of the history from the parents' own blog ( http://chasesammut.blogspot.co.uk/2005_08_01_archive.html?m=1 ):

In addition, as we were looking into accommodations for extended stays in the Houston area, we discovered that most hotels, residence inns, suits, etc were taken by people trying to evacuate outlying areas, including Louisiana, due to the hurricane. We were very lucky to get a furnished apartment,...

Like everyone else, I fail to see what is objectionable about this.

@Mo'B: "However, I personally don’t believe that the appeal to Dr. Burzynski to make a matching contribution has any moral suasion."

Burzynski convinced a dying woman that she needed his nostrums to stay alive, then refused to provide them unless she ponied up his new and undisclosed charges. I do not believe that anything has any moral suasion with a monster like Burzynski.

@Khani: "’m starting to worry that he’ll hurt himself or someone else somehow."

That's why I don't give more information about the physician I know who conducted a clinical trial. I think it's a very interesting and inspiring story, but I don't want the iDJiT or its ilk getting anywhere near him.

@LW - Touche.

LW,

I know! I told DJT that the information on TOBPG all comes from the patients' own blogs, websites, public newspaper articles, etc. Bob's comments are there merely to summarize and move the story along.

I gave DJT the chance to answer my sincere, genuine, civil question like a mature, adult human. Without the sarcasm, insults, juvenile puns and Tu-Quacking. Maybe if he did answer once in a mature, adult manner people would be more inclined to listen to what he has to say.

"Maybe if he did answer once in a mature, adult manner people would be more inclined to listen to what he has to say."

"If" being the operant word there.

@Marc Stephens Is Insane: "I know!"

I know you know, but the iDJiT seems to be under the impression that the statement about the Katrina refugees was some kind of editorial comment by the blogger. The iDJiT said,

So, has your pal stopped posting inane comments about people maybe finding room in the stable to stay because the inn might have been full?

I checked because I was quite certain that was not an editorial comment (though even if it had been, I'm not clear on what makes it objectionable).

MarcSIInsane in the Brain Membrane, "Marc Stephens Is Insane, ”They initially might have had a difficult time finding a place to stay because refugees from Hurricane Katrina had been arriving in Houston, but they were set up in an apartment:”
.
One month later and I still fail to see the problem with this sentence and fail to understand how it discredits an entire website full of true stories.
What does bother me is reading how Burzynski sucks his clients dry of every cent they have."
.
”They initially MIGHT HAVE had a difficult time finding a place to stay because refugees from Hurricane Katrina had been arriving in Houston, but they were set up in an apartment:”
.
So he specializes in postulating theories about someone who "MIGHT HAVE" or "MIGHT NOT HAVE" done.
.
I can understand why you love speculation, because that's what you specialize in. You're name says it all.
.
This is like me posting: "He might have taken a long healthy shat like a bear in the woods."
.
Where are your cites? No link to bank statement copies? How is it that the Tu-Quacker community raves about documentation, but then you don't want to provide it?

Marc Stephens Is Insanely in the Membrainly, "All the information on TOBPG site is taken directly from patients’ blogs, websites, newspaper articles, etc. If the patient’s family said they had trouble getting a room in the wake of Katrina, what’s the problem? Please explain it to me."
.
Where did it indicate this in the information from the actual individual(s) involved rather than your pal's speculation?

@iDJiT:

”They initially MIGHT HAVE had a difficult time finding a place to stay because refugees from Hurricane Katrina had been arriving in Houston, but they were set up in an apartment:”
.
So he specializes in postulating theories about someone who “MIGHT HAVE” or “MIGHT NOT HAVE” done.

Ah, so that's it. The iDJiT has trouble with idiomatic English.

The iDJiT continues to demand documentation about things that do not require documentation. The blogger was summarizing information that was on the parents' website. The reader could, and indeed was invited to, go over and read the website personally (I did). Why should more documentation be required? "No link to bank statement copies?" What kind of nonsense is this?

It's been determined, in one of the other interminable iDJiT threads, that the iDJiT is a creationist, so his/her behavior of demanding a statement from authority for any statement, including arithmetic, makes sense. Sadly, the iDJiT has clearly been trained never to engage in reasoned thought of any kind.

NaradGIGO, "I do find it mildly amusing that Piddles, despite having latched onto the term like dog with a dead bird, still hasn’t figured out that GIGO isn’t a noun."
.
I found it extremely amazing that the majority of your blatherskite is "Garbage In, Garbage Out.

The parents’ own blog ( http://chasesammut.blogspot.co.uk/2005_08_01_archive.html?m=1 ):

In addition, as we were looking into accommodations for extended stays in the Houston area, we discovered that most hotels, residence inns, suits, etc were taken by people trying to evacuate outlying areas, including Louisiana, due to the hurricane. We were very lucky to get a furnished apartment,…

In the disclaimer on the sidebar of The OTHER Burzynski Patient Group ( http://theotherburzynskipatientgroup.wordpress.com/ ):

All information posted here was either freely available online or in the press at the time of writing

But, of course, the iDJiT was just looking for an excuse to dismiss any information that put his/her beloved Burzynski in a bad light.

NaradBiased, "Maybe we can ship SRB to Japan or China!!!
Given that Scamley is of no scientific or other value at all to the human race, I think you’re going to have a hard time finding takers."
.
It's not like you would know, since you can't even cite any evidence that you've actually read all the publications from Egypt, Korea, Russia, Japan, China, Poland, & Taiwan. Reading an abstract doesn't count.

I found it extremely amazing that the majority of your blatherskite is “Garbage In, Garbage Out.

I take it that, in addition to failing to understand that it's not a noun, it is but you that is available to represent the "garbage in" portion of the construction.

Nara-d-Whine&Cheese, "(He doesn’t look like he would fetch much for meat, either.)"
.
Everytime I see one of your posts I think about how much Whine & Cheese you fetch.

It’s not like you would know, since you can’t even cite any evidence that you’ve actually read all the publications from Egypt, Korea, Russia, Japan, China, Poland, & Taiwan. Reading an abstract doesn’t count.

Leaving aside the fact that this is a complete non sequitur, you thus have granted, given that you sure as sh*t haven't, that all your invocations of such material are invalid by your own "standards."

al kimeeaCan'tRead, "wtf wow um ok
there’s no real compassion or sympathy is there if It is willing to write off all those heart wrenching stories simply because someone had a hard time getting a room"
.
You obviously didn't read the blog in question. Come back & try again after you back up your fluff by being able to show that you've.actually read the information that's being discussed.

It’s not like you would know, since you can’t even cite any evidence that you’ve actually read all the publications from Egypt, Korea, Russia, Japan, China, Poland, & Taiwan. Reading an abstract doesn’t count.

Burzynski isn't in Egypt, Korea, Russia, Japan, China, Poland, or Taiwan. If researchers in any of those countries ever manage to find something useful about the so-called antineoplastons, it won't be Burzynski's achievement.

Bemused, you should be, because you added exactly zip, zilch, nada, nothing, to the discussion. Opinion are like Puckers ... Everyone's got one.

Come back & try again after you back up your fluff by being able to show that you’ve.actually read the information that’s being discussed.

You are not engaging in a "discussion," you are jabbering like a neuropsych patient.

Marc Stephens Is Insane, "So no answer on why the hotel room/Katrina story bothered you so much on TOBPG site? I asked you to explain it to me as I really don’t understand the problem. So much for the “intelligent” conversation you’re seeking. I tried to talk to you like a rational adult; I guess I should have known better."
.
Get a grip.

Dude, could you just go away and let the adults talk?

LackadaisicalWeasoning, "What’s really odd about the comment the iDJiT found so off-putting (”They initially might have had a difficult time finding a place to stay because refugees from Hurricane Katrina had been arriving in Houston, but they were set up in an apartment:”) is that it’s just summarizing part of the history from the parents’ own blog ( http://chasesammut.blogspot.co.uk/2005_08_01_archive.html?m=1 ):
In addition, as we were looking into accommodations for extended stays in the Houston area, we discovered that most hotels, residence inns, suits, etc were taken by people trying to evacuate outlying areas, including Louisiana, due to the hurricane. We were very lucky to get a furnished apartment,…
Like everyone else, I fail to see what is objectionable about this."
.
Therefore, you just proved why there was no need for your pal's speculation.

Piddles, after all this time, is there some reason that you haven't successfully figured out how to use blockquote tags?

It's sad, really. One of my best friends is a creationist. So are other friends. They're really good people, polite, kind, intelligent -- but unfortunately the creationists who comment online are nothing like them. Witness the iDJiT, for a depressing example.

MarcySIInsaneInTheMembrain, "LW,
I know! I told DJT that the information on TOBPG all comes from the patients’ own blogs, websites, public newspaper articles, etc. Bob’s comments are there merely to summarize and move the story along.
I gave DJT the chance to answer my sincere, genuine, civil question like a mature, adult human. Without the sarcasm, insults, juvenile puns and Tu-Quacking. Maybe if he did answer once in a mature, adult manner people would be more inclined to listen to what he has to say."
.
Off your meds again? Can you please "Whine & Cheese" about this 500 more times???

LW, "“Maybe if he did answer once in a mature, adult manner people would be more inclined to listen to what he has to say.”
“If” being the operant word there."
.
Like you???
.
"LW

December 27, 2012
Quoth the iDJiT, “_____I doubt you could teach me anything, considering your past record.”
I enthusiastically agree as does, I am sure, every reader of this post who isn’t the iDJiT. Plainly no one has succeeded in teaching the iDJiT anything since third grade, and he is quite proud of that record."
.
I like how the Tu-Quacker Commune want me to read a blog of stories supported by newspaper articles, yet you then turn around & say, we can't believe those SRB patients & their blogs, or newspaper articles, or blah, blah, blah. We need "DOCUMENTATION." Where's your "DOCUMENTATION???"

herr doktor bimler, "I actually have more important things to do
.
Thank you, DJT; that made my day."
.
You must have me confused with Clint Eastwood, & I don't spend my time talking to a chair.

LW, "@Marc Stephens Is Insane: “I know!”
I know you know, but the iDJiT seems to be under the impression that the statement about the Katrina refugees was some kind of editorial comment by the blogger. The iDJiT said,
So, has your pal stopped posting inane comments about people maybe finding room in the stable to stay because the inn might have been full?
I checked because I was quite certain that was not an editorial comment (though even if it had been, I’m not clear on what makes it objectionable)."
.
Great job LW. For your next act will you be beating a dead horse???

As Piddles has apparently completely run out of things to even approximate coherent remarks, I'm SK. AR. 73.

LWhackedOnCreationism, "@iDJiT:
”They initially MIGHT HAVE had a difficult time finding a place to stay because refugees from Hurricane Katrina had been arriving in Houston, but they were set up in an apartment:”
.
So he specializes in postulating theories about someone who “MIGHT HAVE” or “MIGHT NOT HAVE” done.
.
Ah, so that’s it. The iDJiT has trouble with idiomatic English.
The iDJiT continues to demand documentation about things that do not require documentation. The blogger was summarizing information that was on the parents’ website. The reader could, and indeed was invited to, go over and read the website personally (I did). Why should more documentation be required? “No link to bank statement copies?” What kind of nonsense is this?
It’s been determined, in one of the other interminable iDJiT threads, that the iDJiT is a creationist, so his/her behavior of demanding a statement from authority for any statement, including arithmetic, makes sense. Sadly, the iDJiT has clearly been trained never to engage in reasoned thought of any kind."
.
You are so full of (shhhhhhh) "IT." It would be "idiotic" English.
.
The Tu-Quackers are the ones always requesting documentation & you know iit. You making a lame attempt at trying to turn it around shows have full of "IT" you are.
.
Creationism? really? Really?? REALLY??? NO CITE. NON-FACTUAL. Shows your comets lack of reading comprehension.

NaraDenialist, "I found it extremely amazing that the majority of your blatherskite is “Garbage In, Garbage Out.
I take it that, in addition to failing to understand that it’s not a noun, it is but you that is available to represent the “garbage in” portion of the construction.'
.
"Piddles, after all this time, is there some reason that you haven’t successfully figured out how to use blockquote tags?"
.
Still have me confused with your BEOTCH??? I'm not here to do what you want in case you haven't been able to get that through your numbskull yet.
.
LW, "It's not like you would know, since you can’t even cite any evidence that you’ve actually read all the publications from Egypt, Korea, Russia, Japan, China, Poland, & Taiwan. Reading an abstract doesn’t count."
.
"Burzynski isn’t in Egypt, Korea, Russia, Japan, China, Poland, or Taiwan. If researchers in any of those countries ever manage to find something useful about the so-called antineoplastons, it won’t be Burzynski’s achievement."
.
Thank you for just proving that you have NO KNOWLEDGE on the subject-matter, since if you did, you would know their publications specifically cite SRB's publications as references. Again, you are full of (shhhhhhh) "IT."

NaraDeNihilist, "As Piddles has apparently completely run out of things to even approximate coherent remarks, I’m SK. AR. 73."
.
Everyone knows what you are, & that's not it.

Politicalguineapig, "Dude, could you just go away and let the adults talk?"
.
Referring to LWheatChaff & NaraDenihilist by name wouldn't even help. So "Dude" is going to completely go over their heads.

DJT: You're willfully misreading my post. I respect LW and Narad enough to refer to them by name. You, however, are a human hot air balloon and a waste of space- which is the definition of a dude.

Does Orac ever ban people? It's getting hard to have an actual conversation here with this guy around.

Although I think he meant to insult me! Does that mean I'm one of you now? Do I get my sponge now that I'm a real philosopher?

yeah, OK, I didn't read several of the posts including the one in question

u r a waste of skin, conceived from a toilet seat and unknowingly birthed at the prom

@Khani: We accept you! We accept you! One of us! One of us!

Yay! When do I get hazed? Should I bring extra lipstick?

Should I bring extra lipstick?

Just don't bring dill.

Still ignoring the troll.

@ Khani: Don't listen to Narad. :-) Feel free to bring bundles of dill. :-)

Dill, got it! We're not gonna swallow live goldfish are we? It's awfully mean to the goldfish!

Everything is better with dill akvavit.

Happily soon this debate is dead forever .
The medical profession get one more new lesson about washing their hands ( and brains) This is repetition of an offence. The heavy road is soon at the finish line.
Please read:
" After a 15-year long battle, the Texas Medical Board has officially ended its crusade to revoke Dr. Stanislaw Burzynski's medical license in an effort to end the use of his pioneering personalized gene-targeted therapy for cancer
Evidence has shown in the past that the FDA has pressured the Texas Medical Board to revoke Dr. Burzynski's medical license—despite the fact that no laws were broken, and his treatment was proven safe and effective
The Texas Medical Board (TMB) has a long history of harassing doctors. The entire Board was sued by the Association of American Physicians and Surgeons (AAPS) in 2007, citing an “institutional culture of retaliation and intimidation.” Legislation was also drafted in 2009 in an effort to clamp down on the abuses by the TMB, but the bill failed to be passed into law
Dr. Burzynski’s treatment also includes antineoplastons, which are peptides and derivatives of amino acids that act as molecular and genetic switches. They turn off oncogenes that cause cancer, and activate tumor suppressor genes
Once they've determined which genes are involved in the cancer, after extensive third-party genomic testing on both the cancer tissue obtained during biopsy as well as the patient's blood, a custom formulation of FDA-approved gene-targeted drugs are then meticulously chosen to target that patients genes specially related to their cancer. Antineoplastons by themselves work on nearly 100 cancer-causing genes, while traditional gene targeted oncology agents like Avastin, are only proven to target a single gene. Typically, patients who participate in Burzynski's personalized gene-targeted regimen also receive Phenylbutyrate, a metabolite of Burzynski's original Antineoplaston invention."

The world love this....
Cincerely more brainwashing

Oh, goody. It's not as though I haven't addressed Burzynski's "personalized gene-targeted cancer therapy," referring to it as "personalized cancer therapy for dummies." See:

http://scienceblogs.com/insolence/2011/11/29/burzynski-the-movie-subtle…

http://scienceblogs.com/insolence/2011/12/05/personalized-gene-targeted…

http://scienceblogs.com/insolence/2011/12/12/what-dr-stanislaw-burzynsk…

http://scienceblogs.com/insolence/2011/12/15/burzynski-and-the-cult-of-…

Not to mention the only reason Stan got off the TMB charge was due to a legal technicality.

Please read:

http://scienceblogs.com/insolence/2012/11/26/significance-of-the-tmb-di…

Sorry after this Donald Duck is more credible ...

@ More Brain Dead Plagiarist:

Is that you Joe Mercola?

http://articles.mercola.com/sites/articles/archive/2013/01/19/cancer-do…

"Cincerely, lilady"

The entire Board was sued by the Association of American Physicians and Surgeons (AAPS) in 2007

That's proof that the Texas Medical Board is doing something right.

More brainwashing:

What's your problem with the links we posted? Everything is true. Do you know better? Please provide some evidence rather than idiotic, juvenile insults.

Why is "More brainwashing" spamming material from a Mercola column? Without even any attribution? I am shocked, SHOCKED by the lack of concern for intellectual property rights.
Young people today...

@Khani --

And you get to share in the obscene amounts of filthy lucre we get from Lord -- oops. I mean Big Pharma.

The entire Board was sued by the Association of American Physicians and Surgeons (AAPS) in 2007

Are you sure you want to ally yourself with that gang of neo-nazis?

@ Shay:

Be careful what you say: we 're being observed by Sayer Ji.

My most reliable cover story is to say that my expenses are being covered by my Uncle Rupert & News Corp.
Since that's so awful, people think I'm being honest.

And we don't mention you-know-who. AND you-know-what.

#194 MarcStephensIsInsaneInTheMemeBrain
.
"Not to mention the only reason Stan got off the TMB charge was due to a legal technicality."
.
I appreciate it immensely when the "Mighty Ducks" refer to it as a "technicality" when they don't approve of the decision. You remind me of the US Gub-ment lawyers who "Whine & Cheese" when the opposing party cites a case older than 50 years old, but when the Gub-ment cites a case older than 50 years old to support their case, suddenly it's somehow different. The law is the law is the law, & if you can't handle it, get over it. :)

@Herr Doktor

Being a shill ain't what it used to be.

#200 Yay! I can just run it through the washing machine!

I stumbled upon this article by happenstance and just happened to of had stage 4 throat cancer in 09 and subsequent major neck dissection and voicebox removal and I scanned clear as recent as 6 months ago,I apologize for my ignorance and with that being said,Why in the world wouldnt these poor folks have solicited MD Anderson in Houston Tx I was damn fortunate as they saved my life,They are the very best cancer treating hospital in the world and about 90 miles from Huntsville,Tx,My prayers and respects are with this family!

For you to attack Dr. burzynski is insane!! He has a !@#$#@! cure through our urine which may not be suitable for you but let one of your family generate this type of serious of cancer which only offers chemo-stupid radiation. He is a hero and anyone reading this should either do more research on him or email this idoit who posted this site making him out to be a criminal or even a bad person!! He probley works for the fda who could care less about you and your family. PINK SLIME ECOLI MADCOW NO RESPONCE TO ANTIBIOTICS how much will you trust someone who has no love for humanity only profit? This makes me so angry. Raise your own money you butt dont ask someone who has helped many familys from the saunders fate. Please people do your research and tell this ahole to recognize he is in no position to bad mouth this Dr. He is a great man who is persecuted by our government cause they cannot patent his cure for cancer so they make it almost illegal to practice. Just like marijuana. You my friend need to make a change!!! Thank you

This is the question for tonight!

Eric Thome: Poe or no?

@Chris

Judging by the overall general ignorance, as well as the overall lack of basic English grammar, I'd have to say not a Poe.

Which really is sad, since it seems like eric's education was wasted on him.

@eric

[citation needed].

eric’s education
Assumes facts not present in evidence.

"He is a great man who is persecuted by our government cause they cannot patent his cure for cancer"

Wasn't one of the complaints that the evil They had, in fact, patented his cure? Of course, at least some of his patents expired years ago so I guess that doesn't matter anyway.

For you to attack Dr. burzynski is insane!! He has a !@#$#@! cure through our urine which may not be suitable for you but let one of your family generate this type of serious of cancer which only offers chemo-stupid radiation.

If he did have a cure—if antineoplastons were actually effective at treating advanced cancers—after 20 years of clinical’ studies he’d have a large body of evidence proving it. Why does has withhold publication and rely entirely on patient testimony to support his claims of efficacy?

And if one of my family did develop cancer, I'd certainly advocate they receive standard of care radiation/chemo--unlike antineoplaston's these have been shown to work.

He is a hero and anyone reading this should either do more research on him or email this idoit who posted this site making him out to be a criminal or even a bad person!!>blockquote>
I’ve done the research—the only information I’ve not been able to examine and consider are the results of Stan’s 60+ clinical trials from the last two decades. Why is that? Stan refuses to publish.

“He probley works for the fda who could care less about you and your family.”

Pharma shill gambit noted and dismissed. (BTW, Orac isn't an employee of the FDA or other regulatory agency. Perhaps you should have done the requisite due diligence before posting?)

how much will you trust someone who has no love for humanity only profit?

Possibly the most succinct characterization of Burzynski I’ve seen this year.

Please people do your research and tell this ahole to recognize he is in no position to bad mouth this Dr. He is a great man who is persecuted by our government cause they cannot patent his cure for cancer so they make it almost illegal to practice.

Stop telling us to do the research, as if we haven’t: we have and find claims of antineoplaston’s efficacy entirely unsupported. Perhaps that would change if Stan actually published the results of his 60+ trials, but I’m not holding my breath.

As for ‘cannot patent his cure’, two points:
In the absence of any actual evidence that AN’s cure advanced stage cancers, there’s no reason why anyone would want to steal this ‘cure’, protected by patent or not. If the cure does work in the absence of patent protection there’s no barrier to anyone else—the government, Big Pharma, Walgreens for that matter—producing, selling and profiting from it. Patent protection isn't an absolute necessary togenereat revenues, after all--aspirin is no longer under patent and lots of companies profit from its sales

And as for 'great man', recall that only two possibilities exist:

Antineoplastons don't work, Stan's clinical trials demonstrate this, but he's withholding the results to continue selling false hope to desparate people for his own financial gain.

In which case he's a fraud.

Or antineoplastons do work, Stan's clinical trials demonstrate this, but he's withholding the results to maintain a monopoly on an effective cure for cancer and thereby denying millions of patients worldwide access to a cure for the disease that's killing them--again for his own financial gain.

In which case he's a monster.

And if the cure does work, in the absence of patent protection there’s no barrier to anyone else—the government, Big Pharma, Walgreens for that matter—producing and selling it. Aspirin is no longer under patent, after all, and lots of companies profit from its sales

Jeez, one thing is for sure, if Big Stan the misunderstood maverick ever gets his cancer clinic shut down (we can but pray), there is a fortune to be made opening a coffee shop/call in center for the scientifically inept and logically confused.

Donut Eric?

If he is a fraud then why has the board never been able to convict him? If his trials don't work then why has the FDA taken him to a grand jury 5 times only to have patients testify to the effectiveness of the treatments? Why are so many of you shills on here trying to lie for agency's that would lie to you about products known to cause cancer? Is Chemo a toxic chemical? Is radiation toxic to the body? Don't give me a bunch of BS like "Well in small doses it does no harm" that's like saying "Let me treat you with rat poison in small doses" Please clarify your positions because it seems that most of you have a certain agenda to sell to others.

No one disagrees with the very real issues with chemotherapy and radiation treatment. In fact, Burzynski actually uses chemotherapy, poorly. A good read on cancer and the development of treatments is: The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee.

Oh, and rat poison is used prevent blood clots in people. My dad takes warfarin, and jokes about having to take rat poison. And the dosage adjustments are very difficult to get right, he did almost bleed to death when it was too high. (another good book that includes discussion on the risks and benefits of blood thinners is Heart 411 by Marc Gillinov and Steven Nissen)

(also, the Pharma Shill Gambit is old and boring)

Chris - if he's right why doesn't he publish his data in a form that other scientists can read and say, "Wow! This stuff really works!"

If he is a fraud then why has the board never been able to convict him?

Burzynski's conviction for fraud is here:
http://www.ratbags.com/rsoles/history/2012/0324burzynskifraud.pdf

FDA taken him to a grand jury 5 times only to have patients testify to the effectiveness of the treatments?
When did patients testify to a grand jury?

Why are so many of you shills on here
Please, name the commenters who are shills.

Is Chemo a toxic chemical?

Sure. Maybe you should ask Scamley why he's doing it, and badly at that.

Just by the by, wouldn't a more accurate name have been "antineoplastoids"?

"Is Chemo a toxic chemical?"

"Chemo" is not a single entity. There are a number of chemicals used for chemotherapy, of greater or lesser toxicity and greater or lesser effectiveness. Antineoplastons are chemicals used for chemotherapy, are definitely toxic, and appear to be at the bottom end of the effectiveness scale.

Oh, and...

If his trials don’t work then why has the FDA taken him to a grand jury 5 times only to have patients testify to the effectiveness of the treatments?

The proceedings of a grand jury are, by definition, secret. I realize that you're reading from the Merola/Jaffe playbook, but how do you know who testified as to what?

The proceedings of a grand jury are, by definition, secret.
-- and the FDA does not convene them.
The secrecy of grand jury proceedings has the advantage that Merola can make up as many grand jury investigations as he likes, and who will prove him wrong?

" a treatment that, as I’ve explained, has no convincing evidence supporting its efficacy." other than x-rays, MRI, patient statements, and the fact the US Government apparently tried to steal his patents

@ran76 - how about peer-reviewed publications of his data, you know, like every one single medical researcher provides to show that any new (in Dr. B's case, old) treatments actually work?

x-rays, MRI, patient statements, and the fact the US Government apparently tried to steal his patents

These are all subjective, and give no indication as to whether the recipients of B's treatment live any longer for it. A petty question, I know, but it matters to some people.

ran76,

other than x-rays, MRI, patient statements, and the fact the US Government apparently tried to steal his patents

I think what has happened in some cases is that patients with brain tumors have had successful conventional treatment that was mistakenly thought to have failed. Post-surgical and post-radiotherapy inflammation can be mistaken for tumor growth in CTs and MRIs, and later when it subsides it can look like tumor regression. It is only recently that it has become clearer that the full effects of conventional treatment may not be seen until several months afterwards. When a patient is told their treatment has failed, is then treated by Burzynski and survives, it may look as if a growing tumor shrank due to Burzynski's treatment when it was the earlier conventional treatment that actually succeeded. Those patients in whom conventional treatment really has failed will obviously not survive to make statements.

To repeat what I have written elsewhere here, this small study from 2004 found that:

In 9 out of 32 patients, the first post-radiotherapy MRI showed progressive enhancement. In 3 of these 9 the MRI improved or stabilized for 6 months without additional treatment. The authors conclude that patients with progressive lesions within 3 months after radiotherapy should not be eligible for phase II trials on recurrent glioma.

This review from 2012 concluded:

MRI should be interpreted with caution the first 6 months after standard treatment of high-grade glioma.

Bearing in mind pseudoprogression and late response to RT and chemotherapy, we may have a number of patients who are understandably convinced that Burzynski saved their lives and who he uses as effective publicity for his treatment, along with CT and MRI evidence that appears to support him. The bottom line is it's difficult to say what is happening with any degree of confidence without properly carried out clinical trials the results of which are then published. The fact that Burzynski hasn't done this is what many skeptics have a problem with.

First of all... I've never seen anything where this doctor claims to cure cancer... in fact, the studies he cites in his own propaganda piece say his treatments are 25% or less effective.

2. This blog is the first time I've seen anybody say the ANP's do not work (to my knowledge the fda hasn't even said this). So ill uave to look at the links you provide to see what you mean when you say that. I have, on the other hand, heard plenty of people say chemo/radiation does work... yet everybody I've ever known who has gone through traditional cancer treatment were dead within a year. So chemo/radiation is obviously (my opinion) not the answer, yet there aren't thousands and thousands of Dr's who administer these treatments and charge 20-30-40-50-100-200 thousand dollars... yet the fda has a bonet for stopping this one "quack"? Why? There are plenty of fish in the quack sea... this one obviously has better lawyers than you... move on.

And lastly, if people want to pay this quack... who is the federal government to tell them they cannot???

Stanislaw Burzynski: "Personalized gene-targeted cancer therapy” for dummies

oracknows — Thu, 13 Dec 2012 02:00:29 +0000

Stanislaw Burzynski: "Personalized gene-targeted cancer therapy” for dummies

Note: Orac is away somewhere warm recharging his Tarial cells for further science and skepticism. In the meantime, he is rerunning some of his favorite posts. Given that the blog seems to have been infiltrated with Burzynski trolls again and Eric Merola threatens to make a sequel to the execrable movie he made about Burzynski a couple of years ago, now seems a perfect time to rerun a post of Orac's from about a year ago. In fact, now might be a perfect time to rerun these posts. Indeed, maybe I'll even rerun the whole trio, as Orac has been thinking he needs to do a major update and reanalysis, and where better to start than with the original analysis? (This is the second part, by the way.) Besides, at the very least, it'll annoy Burzynski fans and start showing up in Google searches again.

Last week, I applied a little not-so-Respectful Insolence to a movie about a physician and "researcher" named Stanislaw Burzynski, MD, PhD, founder of the Burzynski Clinic and Burzynski Research Institute in Houston. I refer you to my original smackdown for details, but in brief Dr. Burzynski claimed in the 1970s to have made a major breakthrough in cancer therapy through his discovery of anticancer substances in the urine that he dubbed "antineoplastons," which turned out to be mainly modified amino acids and peptides. Since the late 1970s, when he founded his clinic, Dr. Burzynski has been using antineoplastons to treat cancer. Over the last 25 years or so, he has opened a large number of phase I and phase II clinical trials with little or nothing to show for it in terms of convincing evidence of efficacy. Worse, as has been noted in a number of places, high doses of antineoplastons as sodium salts are required, doses so high that severe hypernatremia is a concern.

Although antineoplastons are the dubious cancer therapy upon which Dr. Burzynski built his fame, they aren't the only thing he does. Despite the promotion of the Burzynski Clinic by natural medicine mavens as using "nontoxic" therapies that "aren't chemotherapy," Dr. Burzynski's dirty little secrets, at least as far as the "alternative medicine" crowd goes, are that (1) despite all of the attempts of Dr. Burzynski and supporters to portray them otherwise antineoplastons are chemotherapy and (2) Dr. Burzynski uses a lot of conventional chemotherapy. In fact, from my perspective, it appears to me as though over the last few years Dr. Burzynski has pivoted. No longer are antineoplastons the center of attention at his clinic. Rather, these days, he appears to be selling something that he calls "personalized gene-targeted cancer therapy." But what is "personalized gene-targeted cancer therapy," according to Dr. Burzynski? Here is how it is described:

Our approach to cancer is a result of Dr. Burzynski's extensive experience in cancer research in the field of genetics and genomics.
Personalized Treatments offered by the Burzynski Clinic are individual treatment plans, customized for each patient, based on:

Identification of oncogenes responsible for the growth of cancerous cells in individual patients

Selection of targeted pharmaceuticals that selectively kill cancer cells carrying the identified abnormal genes

The main goal of a Personalized Treatment is to match the right patient to the right treatment to achieve maximum effectiveness with minimum side effects.

Elsewhere, Dr. Burzynski claims:

In some cases conventional therapy is the most appropriate treatment for a patient. Our Clinic offers customized combination therapies consisting of conventional therapy and other approved targeted therapies to maximize effectiveness while minimizing the side effects that typically occur when using the traditional therapies alone.

And:

There are currently close to 30 targeted therapeutics approved by the FDA (as of January 2011). This number grows rapidly with the advancement of the research in genomics. All of the Food and Drug Administration (FDA)-approved gene-targeted medications are available for treatment at the Burzynski Clinic. The combination of targeted medications is customized for each patient and determined by the type of oncogenes involved in patient's cancer (Personalized Treatment).

Dr. Burzynski is also not shy about being interviewed by promoters of alternative medicine, such as Mike Adams. For example, here are a typical radio interview (on Oprah Radio, of course!) and videos like this one:

And this one:

Note that the first few minutes of the second video are spent portraying Dr. Burzynski as the prototypical "brave maverick doctor," a misunderstood genius, a pioneer being oppressed, suppressed, and persecuted by The Man. Dr. Burzynski also calls the FDA and NCI "criminal" and uses every "health freedom" argument in the book, while his antineoplastons are portrayed as a cancer cure that causes brain tumors to "vanish in many children." Finally, around the 4:30 mark, we see Dr. Gregory Burzynski, Dr. Burzynski's son, talking about genomic profiling of cancers and biomarkers in the blood and in circulating tumor cells. If this segment weren't embedded in a bunch of paranoid conspiracy mongering about big pharma, the FDA, and the NCI, plus a claim that surgery will no longer be necessary for surgery, what's left over doesn't sound too different from what quite a few "conventional" cancer researchers say about "personalized medicine." Well, that and what Dr. Burzynski says about tumor suppressors. He seems to think that all tumor suppressors prevent mutations, which is, of course, not true. Some of them do other things. Be that as it may, the claim made in the video is that, with a combination of antineoplastons and "personalized therapy," Dr. Burzynski can cure many cancer patients with stage IV disease. But how credible is this claim? What, exactly, is he doing? It's hard to figure out from his website, but looking elsewhere can provide hints. Let's

"Personalized cancer treatment" in science-based medicine

At the risk of annoying some colleagues I know, I'm going to point out that I never really liked the term "personalized cancer therapy" or its many variants, for the simple reason that it always struck me as more of a marketing term than a scientifically meaningful description of what targeting therapy to the genetic makeup of a patient's tumor will eventually entail. In fact, I think I now prefer another term, which has been used by Cancer Research U.K., namely "stratified medicine." The reason is that what we as clinicians are doing when we "personalize" or "individualize" therapies isn't really "personalizing" the therapy so much as using various measurements and biomarkers to place patients into groups of patients who respond to specific therapies. What the modern version of "personalized" therapy is really doing is producing more and more groups of patients, each of which, is smaller than the last, to be matched to more and more therapies. Whether the groups will eventually reach an N of 1, I don't know, but that is the goal. Only then will we truly have "personalized medicine."

My personal irritation at the proliferation of certain terms notwithstanding, I actually do believe that the stratification and matching of patients with therapies based on genomics, proteomics, and biomarkers is the future of cancer treatment, and, to some extent, the future is now. However, "personalized" medicine is in its infancy, as I have pointed out in previous posts on the topic, Progress mixed with hype in genomics and "personalized medicine" and Integrating patient experience into research and clinical medicine: Will this lead to true "personalized medicine"? True, we do have several targeted therapies that inhibit or target a single important molecule. For instance, in breast cancer, Herceptin (trastuzumab) targets the HER2 oncogene, which is amplified in some breast cancers. Another example, Gleevec (imatinib mesylate), inhibits the tyrosine kinase activity of the bcr-abl oncogene product as well as receptor tyrosine kinases encoded by the c-kit and platelet-derived growth factor receptor oncogenes and is very effective against tumors that make too much of one these oncogenes, such as gastrointestinal stromal tumor and Philadelphia-positive (Ph+) hematological malignancies such as chronic myelogenous leukemia and acute lymphoblastic leukemia. Now, there are numerous other examples, so many that they are listed on the NCI website.

In fact, the idea of targeted therapy in cancer is not new. For example, it's long been known that the presence of the estrogen receptor (ER) in breast cancer implies that treatment with antiestrogen drugs like Tamoxifen is likely to result in a a response and that lack of ER in a tumor means that Tamoxifen won't work. Similarly, we've used prostate-specific antigen (PSA) as a biomarker for prostate cancer and carcinoembryonic antigen (CEA) as a biomarker for colon cancer for decades. The difference between the way drugs were targeted to cancers a couple of decades ago and now is the explosion of genomics knowledge that has occurred over the last decade. As I've pointed out, we are now producing terrabytes and petabytes of genomic data about cancers, a flood of information that we have only relatively recently started seriously developing the tools needed to analyze this flood of data and disciplines (systems biology, bioinformatics, genomics, etc.) to organize and determine how best to translate it into therapies. We even use one such test in breast cancer, the Oncotype DX, assay, which has allowed oncologists to identify patients who can safely skip adjuvant chemotherapy.

What we are learning, as I have lightheartedly appropriated a quote from Douglas Adams' masterwork to say before, is that cancer is complicated. You just won't believe how vastly, hugely, mind-bogglingly complicated it is. I mean, you may think it's complicated to understand basic cell biology, but that's just peanuts to cancer. All you have to do is to look at the genetic derangements in typical prostate cancers to get a flavor for how daunting the task of developing personalized treatments of cancer will be, much less curing it. Think of it this way. The examples of genomic derangements in a few prostate cancers were incredible, and there are different sets of genomic derangements that vary by cancer type, of which there are hundreds. Add to that the fact that, as Dr. Burzynski himself emphasizes, cancers are heterogeneous, with different genetic derangements in different parts of the tumor, and you get a flavor of how difficult "personalizing" cancer therapy based on its genomic makeup and biomarkers will be. It will take an incredible amount of research, both basic and clinical, in order to learn the best ways to match the genomic makeup of patient tumors to the most effective targeted therapies.

Unfortunately, Burzynski's approach to "personalized gene-targeted anticancer therapy" appears to fall prey to the assumption that he knows enough about the molecular pathways to be investigated to reliably use the results of various genomics assays to guide anticancer treatment. In essence, it's as though Dr. Burzynski read a book called Personalized Cancer Therapy for Dummies and decided he is an expert in genomics-based tailoring of targeted therapies to individual cancer patients. I'll try to show you what I mean.

What Burzysnki claims he can do with "personalized gene-targeted therapy"

In order to determine what it is that the Burzynski Clinic is doing that it calls "personalized gene-targeted cancer therapy," I started searching around the web. I also had a brief e-mail correspondence with Renée Trimble, Director of Public Relations for the Burzynski Institute. She's the one who, in the wake of Marc Stephens' harassment of bloggers, sent out a press release apologizing for his behavior while at the same time basically saying that the Burzynski Clinic would keep using the legal system to try to silence bloggers who criticize it. However, she was polite with me, probably because of the positions I hold at an NCI-designated comprehensive cancer center. Mostly, her information was only marginally more helpful than what I could find on the Burzynski Clinic website and around the Internet, but she did confirm at least one fact that needed confirming. Then, there is also this video, produced by the Burzynski clinic itself:

What interested me about this video, ironically enough, is how bland and unremarkable a lot of it was. Clearly, the producer went to great lengths to make Burzynski's lab look like any other molecular and cell biology lab--even like my lab. The other thing that interested me was how the video emphasizes the use of FDA-approved medications. Finally, there was a clue (to me, at least) about what it is that Burzynski is doing. At around the three minute mark, the announcer states:

We combine gene-targeting drugs and low dose chemo, if needed.

Then a very sharply-dressed man named Azad Rastegar appears and says:

The way we look at cancer here at the Burzynski Clinic is that it's more than just the tumor site. Obviously, that's very important and significant for figuring out how to address the cancer in the patient, but what we want to do is to identify the genes that are involved in that particular patient's cancer. With that, then we can start creating more customized and personalized treatment plans that involve gene-targeted medications targeting, obviously, the genes involved in that patient's cancer. This way we're able to reduce side effects. We're able to reduce any time-wasting on ineffective drugs and cater it, obviously, much more to the patients and their individual cancer needs.

It all sounds so reasonable, and, indeed, this is exactly the sort of thing that lots of cancer centers are trying to do. But how this sort of approach is implemented makes all the difference in the world, and the question I had was whether Dr. Burzynski is taking anything resembling the right sort of approach to this problem. From the description above, it sounded very much to me as though Dr. Burzynski is combining various targeted agents with metronomic chemotherapy. I know a thing or two about metronomic chemotherapy, because I was involved in a project whose end result was to be the testing of metronomic chemotherapy against cancer and because the concept is a spinoff of the work of one of my scientific heros, the late Judah Folkman. Basically, metronomic chemotherapy is an approach to chemotherapy that uses repetitive, low doses of chemotherapy drugs (or even continuous infusions of low dose chemotherapy) designed to minimize toxicity and target the tumor blood vessels rather than targeting the tumor cells themselves. The concept behind this strategy is that blood vessels are lined by genetically stable endothelial cells, they do not evolve resistance, and chemotherapy can be antiangiogenic. The drawback to metronomic chemotherapy is that long periods of therapy may be required and the cumulative doses of chemotherapy may end up being actually higher than more standard therapies. On the other hand, this latter aspect may not be a drawback because metronomic chemotherapy may allow a greater cumulative dose, with a concurrent greater cumulative effect. Unfortunately, thus far clinical trials in humans of such approaches can only be characterized as fairly disappointing.

Whether this is what Dr. Burzynski is doing or not with the chemotherapy part of his approach, I don't know for sure, but it sure sounds like it. For example, in Knockout: Interviews With Doctors Who Are Curing Cancer and How to Prevent Getting It in the First Place by Suzanne Somers, Dr. Burzynski is interviewed and, ironically, reveals a great deal (to me, at least) about what he is doing. For example:

For the majority of Dr. Burzynski's patients he does not use any chemotherapy, but for some patinets the chemotherapy is used in lower dosages, which are below the threshold of significant side effects. Dr. Burzynski takes advantage of the synergistic effect of such combinations...

Except that he doesn't demonstrate that these combinations are synergistic in preclinical studies or clinical trials before prescribing them off-label.

Later in the interview, Somers (SS) asks Dr. Burzynski (SB) about breast cancer, and Dr. Burzynski replies:

SS: What about breast cancer?

SB: At the moment we use a different approach. We study which genes in individual patients are abnormal, trying to determine the genetic signature of cancer in these patients. With our methods, we can have answers for the patient in about three days based on blood tests. Once we identify the most important oncogenes involved in cancer for that individual, we select a group of four to six medications from those twenty-four which are now approved by the FDA and use them to hit those genes which are causing the cancer to progress. This is like "boutique treatment" because for every patient we design a treatment plan. When we do this we have a very good chance to have positive results in most patients.

SS: How many respond?

SB: About 85 per cent for whom we have the proper gene signature; about 15 percent do not respond. In our responders many of them have tumors which disappear completely and in others the tumors remain small. The problem is finding the genetic signature because for many of these different genetic signatures we don't have blood tests...yet.

Note that at the time this book was published, Dr. Burzynski was claiming that he could identify who would benefit from specific targeted therapies simply from blood tests. If he could do this for real, Burzynski could easily publish in high impact journals like Clinical Cancer Research, the Journal of Clinical Oncology, or another high impact clinical cancer journal. Heck, a result like that could probably make it into general medical journals, such as the New England Journal of Medicine or The Lancet, which have an even higher impact factor. If he were able to demonstrate that his method of testing tumors and picking targeted therapy could result in a complete response rate anywhere near 85% for breast cancer, even more so. If, as he claims later in the chapter, Dr. Burzynski has patients with pancreatic cancer and advanced liver cancer whose tumors have disappeared within two months after he began treatment, the same would be true. If, as Burzynski claims, he achieves a 50% complete response rate in advanced brain tumors, again, the same would be true. He doesn't submit his results to these journals. Why not? No doubt it's The Man keeping him down.

So what tests does Dr. Burzynski use to determine the cocktail of targeted therapies to use in any given patient, anyway?

I learned from multiple patient blogs (and it was confirmed by Ms. Trimble) that Dr. Burzyski uses a test from a company called Caris Life Sciences. The test appears to be the Caris Target Now™ Molecular Profiling test, and this is how it's described on the company website:

Caris Life Sciences'™ molecular profiling test, Caris Target Now™, examines the genetic and molecular changes unique to a patient's tumor so that treatment options may be matched to the tumor's molecular profile.

Caris Target Now helps patients and their treating physicians create a cancer treatment plan based on the tumor tested. By comparing the tumor's information with data from published clinical studies by thousands of the world's leading cancer researchers, Caris can help determine which treatments are likely to be most effective and, just as important, which treatments are likely to be ineffective.

The Caris Target Now test is performed after a cancer diagnosis has been established and the patient has exhausted standard of care therapies or if questions in therapeutic management exist. Using tumor samples obtained from a biopsy, the tumor is examined to identify biomarkers that may have an influence on therapy. Using this information, Caris Target Now provides valuable information on the drugs that will be more likely to produce a positive response. Caris Target Now can be used with any solid cancer such as lung cancer, breast cancer, and prostate cancer.

It's also noted:

Caris Target Now™ was developed and its performance characteristics were determined by Caris Life Sciences, a medical laboratory CLIA-certified in compliance with the U.S. Clinical Laboratory Amendment Act of 1988 and all relevant U.S. state regulations. It has not been approved by the United States Food and Drug Administration.

All of which sounds suspiciously like a Quack Miranda Warning. At least, it's a little too close for comfort in my book. From my perspective, this test looks perfectly fine as a test to be used for research and clinical trials, but clearly using it to treat patients with off-label cancer drugs is something that I'd be very, very concerned about.

But how does it work? It's described thusly:

Caris Target Now begins with an immunohistochemistry (IHC) analysis. An IHC test measures the level of important proteins in cancer cells providing clues about which therapies are likely to have clinical benefit and then what additional tests should be run.

If there is access to a frozen sample of patient tissue available, Caris Life Sciences™ may also run a gene expression analysis by microarray. The microarray test looks for genes in the tumor that are associated with specific treatment options.

As deemed appropriate based on each patient, Caris will run additional tests. Fluorescent In-Situ Hybridization (FISH) is used to examine gene copy number variation in the tumor. Polymerase Chain Reaction (PCR) or DNA sequencing is used to determine gene mutations in the DNA tumor.

Immunohistochemistry is standard for many cancers. For example, in breast cancer, pretty much every pathology lab does immunohistochemistry (using antibodies to detect specific proteins) for at least two proteins, the estrogen receptor and the HER2 oncogene. Sometimes, depending upon the lab and the clinical situation, pathologists will stain for proliferation markers, like Ki-67, or other receptors such as epidermal growth factor receptor. Not uncommonly, pathologists stain for E-cadherin in order to differentiate between two common types of breast cancer, infiltrating ductal carcinoma versus lobular carcinoma. similarly, breast cancers are often subjected to FISH in order to determine whether the HER2 oncogene is amplified. In other words, none of this is anything particularly remarkable from a clinical standpoint.

What Caris appears to do that's different from normal clinical evaluation of a tumor sample is, if fresh frozen tissue is available, the performance of cDNA microarray analysis of the messenger RNA isolated from the tumor tissue. cDNA microarrays are a technology that allows scientists to analyze the level of messenger RNA from every known gene in the genome simultaneously. In actuality, technology has moved on from cDNA microarrays, which these days are so 2005, but they're still good tools and still used to examine differences of thousands of genes simultaneously, either between tissues or in response to drugs or other interventions. Also, newer technology, such as next generation sequencing (NGS) and RNA-Seq. RNA-Seq, for instance, provides the same information that a cDNA microarray does, plus everything else in the transcriptome, such as microRNAs and long non-coding RNAs. microRNAs, in particular, are being appreciated as very important regulators of gene activity because a single microRNA can often regulate hundreds of genes. RNA-Seq is also unbiased in that cDNA microarrays can only measure genes we know, whereas RNA-Seq can be used for discovery of previously unknown RNAs.

However, these techniques are expensive and not yet as common and practical as cDNA microarrays. That Caris isn't using the latest technology for the test doesn't mean it might not be potentially worthwhile; after all, a cDNA microarray will detect the levels of all known oncogenes. Caris also apparently does some mutational analysis and fluorescence in situ hybridization (FISH), a test designed to measure gene copy number and thus detect amplified genes. The result is a report like this example report that Caris Life Sciences has posted on one of its websites. The problem, of course, is what a clinician should do with the results. That's why I say that such a test should probably, except in rare circumstances, only be used for research purposes. Besides, much of what I see isn't that helpful anyway. For example, if you look at the report, the first agents listed are anthracyclines, such as doxorubicin, because topoisomerase-2A is elevated and taxanes, such as paclitaxel, because TLE3 is elevated. These are basically "Well, duh!" suggestions, because doxorubicin and paclitaxel are normally standard-of-care chemotherapeutic agents for triple negative breast cancer anyway! Particularly useless is the mention that "Lack of HER2 amplification has been associated with lack of benefit from HER2-targeted antibody." No kidding, given that trastuzumab was designed to treat HER2-positive breast cancer and that clinical samples are routinely checked for HER2 amplification as part of the standard-of-care!

As for the other recommendations, the gene associations listed, many of them are based on associations with response to specific therapies in other tumor types, such as irinotecan in ovarian cancer and cisplatin in gastric cancer, small cell lung cancer, for example. The relevance of many of these recommendations to breast cancer is questionable, to say the least. To apply them to individual patients outside the context of a clinical trial is hard to justify except in rare cases, but that's exactly what Dr. Burzynski appears to be doing for large numbers of his patientss, picking off-label chemotherapeutic agents based on the results of this test and selling it as "personalized gene-targeted therapy" without letting patients know that (1) the evidence base behind these recommendations is often not relevant to the specific tumors being treated because it's from different cancers; (2) the studies used to support these recommendations have a lot of uncertainty; and (3) most of these recommendations haven't been validated in clinical trials.

Even worse, the very concept of "gene-targeted cancer therapy" hasn't been convincingly shown to improve cancer outcomes, at least not yet. Believe it or not, I actually am in the camp who believes that eventually such a strategy will ultimately be proven useful and revolutionize cancer therapy, but that time is not yet. Gene-targeted cancer therapy is currently in its infancy and, except in rare situations outside of the existing currently validated biomarkers (such as HER2, ER, c-kit, and other genes for which targeted therapies exist) for the response of specific cancers, is not to be undertaken outside of the context of a clinical trial. In essence, Burzynski appears to be using such information on a "make it up as you go along" sort of fashion. Indeed, an e-mail from Renee Trimble confirmed this suspicion of mine when I pointed out to her that gene-targeted cancer therapy is in its infancy and that in the vast majority of cases we don't know what to do with this information. I also wanted to know what the Burzynski Clinic was doing that is different from what the major cancer centers are doing. Her answer was, to put it mildly, unsatisfying, as I will discuss in the next section.

Compare and contrast, ideal versus results

Before discussing how the Burzynski Clinic does personalized cancer therapy, I think it's worth looking at how real scientists do it right now. In essence, real scientists use information of the sort provided by Caris Life Sciences or by their own genomic testing to stratify patients and identify them for clinical trials. An excellent example of this is a study hot off the presses in the November issue of Science Translational Medicine by a group from my very own alma mater, the University of Michigan entitled Personalized Oncology Through Integrative High-Throughput Sequencing: A Pilot Study. In essence, the investigators (Roychowdhury et al) began a pilot study to study the practical difficulties involved in using high-throughput sequencing in clinical oncology, which they identified in the introduction:

Translating high-throughput sequencing for biomarker-driven clinical trials for personalized oncology presents unique logistical challenges, including (i) the identification of patients who could benefit, (ii) the development of an informed consent process that includes a way to deal with incidental findings, (iii) the implementation of efficient and integrative computational pipelines for data analysis, (iv) the selection of the results that should be disclosed to patients, and (v) the completion of the sequencing analysis in a cost-effective and clinically relevant time frame (Table 1). We implemented an exploratory study that we call the Michigan Oncology Sequencing Project (MI-ONCOSEQ) to address these challenges.

The challenges, and the response of investigators, are well described in Table I:

Before undertaking this study in actual humans, in order to verify that their sequencing strategy would work, Roychowdry et al first grew in mice xenografts made from tissue taken from the tumors of two patients with metastatic prostate cancer. They performed their genomic analysis and found that one carried a common gene fusion found in prostate cancer and another previously undescribed gene fusion. They also found the androgen receptor gene was amplified and two tumor suppressors were inactivated. For purposes of the study, they set up a special tumor board to evaluate their findings and decide what clinical trials would be best for a patient. The authors then tried their strategy on two actual patients, one with colorectal cancer and one with melanoma. The tumor board suggested a combination of inhibitors that would be suitable for each patient on clinical trial. Unfortunately, at the time there were no appropriate clinical trials. This is the sort of preliminary work that needs to be done before genomic analysis of individual patient tumors, as will the implementation of clinical trials that patients can be assigned to based on their genomic information.

Another example was reported this spring, when M.D. Anderson Cancer Center presented initial data at ASCO for over 1,000 patients in a phase I trial in which patients' tumors were analyzed for genetic abnormalities and, when a drug existed to target that genetic abnormality, received that drug. Unfortunately, I didn't go to ASCO this year; so I didn't see the presentation, but the results are summarized on the M.D. Anderson Cancerwise blog:

For the 175 patients with one aberration, the medical response rate was 27% with matched targeted therapy. The response rate was 5% in 116 patients when treated with non-matched therapy.

Patients who received matched targeted therapy had median survival of 13.4 months, compared to nine months for unmatched targeted therapy. Median survival without cancer progression was 5.2 months for those receiving matched therapy, compared to 2.2 months for patients who received unmatched therapy.

True, this is not a home run by any means, but it suggests that "personalized" cancer therapy can improve outcomes.

Now let's take a look at how the Burzynski Clinic does it, at least as far as I can figure out from my various sources and from Ms. Trimble. In response to my query about personalized gene-targeted therapy offered by the Burzynski Clinic, Ms. Trimble stated that a gene expression analysis is performed, as well as mutational analysis, FISH, immunohistochemistry for selected genes and that a blood test is also performed to measure the "concentration of proteins which are products of most important oncogenes." How on earth they do this latter test, I really don't know, because most oncogenes are not secreted proteins and most cancers don't have good serum biomarkers. Next, according to Ms. Trimble, the "medications which are shown to be best candidates for treatment, as well as those which are poor candidates, are identified from FDAs' approved gene targeted medications and chemotherapy drugs list." In addition, drugs are supposedly selected based on the patient's clinical information, standard of care, FDA indication, data from phase II and III clinical trials. On the surface, up to this point it all sounded reasonable and not unlike what is being done at quite a few big cancer centers, hence my question (which was never answered to my satisfaction) of what Burzynski is doing that is different from (and presumably believed by Burzynski to be superior to) what everyone else is doing.

Then there was a hint. In addition, Burzynski then formulates a preliminary treatment plan that "will consist of medications which should cover approximately between 100 to 200 genes," after sometimes doing a SNP analysis to "eliminate drugs which are not metabolized properly." The result, or so it is claimed, is a set of drugs that have "synergistic activity which permits reduction of doses." But why 100 to 200 genes? The very idea of targeted therapy is to hit the bare minimum of targets necessary to eradicate or control the tumor. Burzynski is going against the very concept of targeted therapy by making sure his therapy hits "100 genes," a claim that resonates from what he said in the movie about him I reviewed last week. According to Ms. Trimble, "Antineoplastons and their prodrug, phenyl butyrate, are important ingredients of the combination because they cover the spectrum of approximately 100 genes."

To support this claim, Ms. Trimble also sent me two papers from the Burzynski Clinic, both of which appeared in a journal I had never heard of before, the Journal of Cancer Therapy, which is clearly not indexed on PubMed because these papers never showed up when I searched PubMed for Burzynski. One described Burzynski's approach for triple negative breast cancer (TNBC), the other for esthesioneuroblastoma and nonsmall cell lung cancer. What I found odd about both of these papers is that neither of them really examined whole genome expression profiling, although the paper about triple negative breast cancer did mention measuring the expression of "important" oncogenes. Meanwhile, the paper on esthesioneuroblastoma and nonsmall cell lung cancer primarily used sodium phenylbutyrate rather than any sort of gene targeting. I note that, while the esthesioneuroblastoma case is mildly interesting, it is a case report. I also note that the TNBC paper is a case report and small series in which a cocktail of targeted therapies plus chemotherapy appear to have produced somewhat durable responses. Unfortunately, in the absence of a control group or a clear prospective rationale for choosing these therapies, it's hard for me to get too excited, particularly given that we don't know the denominator; in other words, we don't know how many patients with TNBC Burzynski has treated with this regimen who didn't respond. We also don't know the survival rates for these patients, only response rates.

It turns out that perhaps the best description of what "personalized" treatment means in Dr. Burzynski's hands comes from the Texas Medical Board's complaint against him, which can be found in over at the Ministry of Truth or at Casewatch. This complaint is based on the cases of two patients. First, here's Patient A, who is described in the complaint thusly:

1. Patient A:

a. In approximately May of 2008, Patient A presented to Respondent with breast cancer that had metastasized to her brain, lung, and liver.

b. Respondent prescribed a combination of five immunotherapy agents - phenylbutyrate, erlotinib, dasatinib, vorinostat, and sorafenib-which are not approved by the Food and Drug Administration ("FDA") for the treatment of breast cancer, and which do not meet the FDA's regulations for the use of off-label drugs in breast cancer therapy.

c. In combination with the five immunotherapy agents, Patient A was prescribed capecitabine, a chemotherapy agent. The concurrent prescription of five immunotherapy agents in combination with a chemotherapy agent resulted in Patient A suffering unwarranted side effects.

d. Respondent owned the clinic pharmacy from which the multiple drugs were ordered. Respondent failed to affirmatively disclose to Patient A his ownership interest in the pharmacy.

This is what's known as "throwing everything but the kitchen sink" at the tumor without any thought of interactions, as most of these agents have no proven role in the treatment of breast cancer. For example, erlotinib (brand name: Tarceva) is used to treat pancreatic cancer and non-small cell lung cancer. It works by inhibiting the tyrosine kinase of the epidermal growth factor receptor (EGFR) and is not FDA-approved for breast cancer. However, it's not unreasonable to think that it could work in breast cancer, as EGFR is believed to be important in some breast cancers, which is why this is an area of active research. Dasatinib (trade name: Sprycel) is also a kinase inhibitor. It inhibits the Src family tyrosine kinase. Vorinostat is a histone deacetylase inhibitor approved for use against cutaneous T-cell lymphoma. Finally, Sorafenib is another tyrosine kinase inhibitor that inhibits the tyrosine kinases of different receptors, as well as raf kinases. The big problem with this sort of approach is that the more drugs you add, no matter how "targeted" they are, the more chance for interactions that increase toxicity, and throwing all these kinase inhibitors together in a cocktail with chemotherapy is a recipe for disaster, particularly because such cocktails haven't been tested in proper phase I clinical trials to evaluate toxicity. They're also all incredibly expensive as well, and Dr. Burzynski sells them through his own pharmacy.

Patient B appears to be the patient with esthesioneuroblastoma whose case report I described above. This is the relevant passage from the complaint:

Follow-up magnetic resonance imaging ("MRI") scans were conducted in approximately August and December of 2003, and March of 2004, which showed progressive disease. Patient B was continued on phenylbutyrate during this 11 -month time period, and was not sufficiently informed about the drug's lack of efficacy on her disease.

Which sounds rather unlike the glowing case report above, now, doesn't it?

This is how Dr. Burzysnki does "personalized, gene-targeted therapy."

The cost

It's very telling to look at the literature that Dr. Burzynski sends to prospective patients, one example of which is reproduced by Xeno. For example, rather than summarizing sound papers describing well-designed clinical trials, Dr. Burzynski only lists "response rates." Looking at the table included in the literature, I noticed immediately that Dr. Burzynski says nothing about survival rates, only what he calls "objective response rates," which are not defined in a meaningful way. The pamphlet defines them as as anything from an "improvement" (defined as "decrease in size of the tumors, not confirmed yet by the second follow-up radiological measurement") to "complete disappearance of all signs of cancer," which is utter bollocks. There are standardized ways of measuring tumor response agreed upon by radiologists and oncologists, such as the RECIST criteria. Burzynski lumps all responses together in an oncologically meaningless way. Also remember, Burzynski often uses standard-of-care chemotherapy along with his antineoplastons; so we would expect some responses. The chart above, however, is virtually meaningless, if only for the simple reason that initial tumor response often doesn't correlate to overall survival, and overall survival is what we care about. As Xeno also notes, the out-of-pocket costs are staggering. Contrast this to the clinical trials I mentioned above, where patients do not pay for the genomic profiling or chemotherapy.

As bad, Dr. Burzynski massively oversells what he is doing to desperate patients, and, if what he tells patients is the same as what he told Suzanne Somers in her book, appears to be misrepresenting what he does:

SS: When you talk about gene-targeted therapy, is that chemotherapy?

SB: No, this is not chemotherapy. Most of my patients have already had chemotherapy and it has not been effective for them. The beauty of antineoplastons is that they are natural compounds. They exist in our blood and form a protective system against cancer. You don't expect to have toxic side effects from chemicals which are normal in your blood. And they cover a broad spectrum of genes, which means from the very beginning we have a much better chance to help this patient.

Cytotoxic chemotherapy "covers" an even broader spectrum of genes; so by Dr. Burzynski's criteria, cytotoxic chemotherapy ought to be the best therapy of all! In any case, as we have seen, Dr. Burzynski does give chemotherapy. Lots of chemotherapy. He combines that chemotherapy with a gmish of "targeted therapies" based on a commercially available but not FDA-approved gene expression profile test and calls it "personalized gene-targeted therapy." Unfortunately, in my not-so-humble opinion, he doesn't have a scientifically supportable rationale for combining his targeted therapies. Instead, skirting the line between science and pseudoscience, Dr. Burzynski gives every appearance of recklessly throwing together untested combinations of targeted agents willy-nilly to see if any of them stick but without having a systematic plan to determine when or if he has successfully matched therapy to genetic abnormality.

One has only to compare what Dr. Burzynski does to what the group the University of Michigan, among other large research institutions, are doing to see that. The result is that his outcomes are basically uninterpretable, making them useless for determining whether his approach works. At the same time, the cost is personal in terms of giving patients false hope and unneeded side effects for little or no benefit and financial in terms of bills that run from tens to hundreds of thousands of dollars charged to patients who are so desperate that they will pay them for even a glimmer of hope.

oracknows Wed, 12/12/2012 - 21:00

Tags

Quackery

personalized gene-targeted cancer therapy for dummies

http://assets0.pubget.com/paper/15035877/Managing_social_conflict_in_co…

Categories

Brain and Behavior

I'm going to work on a YouTube video bringing all this together. The key points, as I see them are:
1. Burzynski has never yet completed a useful drug trial out of 60+ attempts, but instead exploits Phase I and II clinical trials to use untested mixes of chemo, urine compounds and immune therapy.
2. Burzynski's experimental treatment regimen, unlike every drug trial I've ever heard of, charges the patients for time, material, and tests. The fees seem excessive to me, but the key point is that even if he is a brave and maverick doctor, he ain't a charitable one.
3. Burzynski's cure rate, when you strip away the marketing, is not any better than conventional therapies.
4. When he claims "gene-targeted therapies" or "personalized medicine" he's using the same tumor marker tests as any other cancer center to prescribe the same targeted immunotherapies and drugs as any other cancer center. His only unique addition is by no means gene-targeted and quite probably less effective than front-line therapy.

Conclusion: If Burzynski really does have something uniquely effective, he needs to set aside this short-term loop-hole (and patient) exploitation and actually complete a clinical study, conduct rigorous basic science, publish his results in a high-impact journal, and stop profiting from the tragic hope of suffering families. If he really had a light, and he hid it in a bushel (and charged admission to see); what a horrible, horrible profiteer.

I'm honestly prepared to be wowed by some solid science from the Burzynski Clinic, but given their business model, I won't hold my breath.

I'd add...

5. If you hear the words "cystic formation," you know you've been had.

Should I trust this Doctor's credentials over Orac's?

Dr. Nicholas Patronas, is currently the Senior Clinician, Chief. Section of Neuroradiology,, Radiology and Imaging Sciences, National Institutes of Health, NIH Clinical Center
http://www.cc.nih.gov/drd/staff/nicholas_patronas.html

Court Testimony Of Nicholas Petronas, MD

(Board-Certified Radiologist Professor of Radiology at Georgetown University, and Founder of the Neuroradiology section of the National Cancer Institute)

Discussing the effectiveness of antineoplaston treatment vs. chemotherapy and radiation treatment in brain cancer.

May 24, 1993

Administrative Hearing Docket .503-92-509

License No. D-9377

In The Matter Of The Complaint Against Stanislaw R. Burzynski, M.D.

Before The Texas State Board Of Medical Examiners

Before Earl A. Corbitt, Administrative Law Judge

Volume I of II

May 24, 1993

Pg. 113

Direct Examination

Q: Dr. Petronas, what is your profession?

A: I'm a radiologist, a medical doctor specializing in radiology.

Q: Would you tell us briefly your educational background?

A: Well, after the medical school we have a year internship, four years residency in radiology, and in addition I had an entire year of training in neuroradiology. So my subspecialty is neuroradiology. It is the evaluation of the regions of the central nervous system.

Pg. 114

Q: And would you relate your work experience, please?

A: when I finished my training I was at the University of Chicago for seven years as a staff radiologist at the University Hospital. And then I moved to the National Institutes of Health where I worked from '81 to '85 as a staff radiologist at the clinical center, which is the hospital of the National Institutes of Health. Then I moved to Georgetown University where I became full professor of radiology. And the National Institutes of Health contracted Georgetown radiological services, and I was sent from Georgetown back to NIH to cover the section.of Neuroradiology.

Q: And so you work at the National Institutes of Health hospital; is that where you work?

A: yeah, at the hospital initially as a federal employee from '81 to '85, and then on contract from Georgetown University. So I am one of the 17 radiologists who provide radiological services to the National Institutes of Health.

Q: What is the function or purpose of the hospital of the National Institutes of Health?

A: As you know, there are a lot of research protocols that

Pg. 115

are going on, and people who are admitted to this facility are being admitted to try experimental treatment. As they are admitted to the hospital, the hospital requires an X-ray Department and radiologists to man the department. And so we evaluate the various lesions that are being admitted under these approved protocols, and we assess the effectiveness of the treatment given there, using imaging modalities such as MRI or CT scans and regular radiology.

Q: And that would be for the various health departments or what's called institutes?

A: Exactly, the various institutes, yes.

Q: Like the National Cancer Institute, that's one of them?

A: That's the biggest of all, yeah.

Q: What-- Basically then, you do the, in layman's terms, you do all the imaging work and interpretation for the National Cancer Institute testing of drugs?

A: Exactly.

Q: Because-- and what happens is, they give the drugs to the people and you have to get-- they have to have a scan before to see what they had--

A: Exactly.

Q: --then when they go into treatment they have to get scans to see what, if any, effect--

A: To see whether they are effective or not, yes.

Pg. 116

A: That's my job, to assess the effectiveness of the drugs that are given there and to provide the diagnosis at the initial stage, upon admission.

Q: Dr. Petronas, did there come a time when you became aware of Dr. Burzynski?

A: Yes, it was when Michael Hawkins from NCI asked me to join a group of other physicians and scientist and come to Houston on a site visit to Dr. Burzynski's Institute in order to assess the best case scenario that he had to present us of his patients who were treated with antineoplastons. So that was the first time when I was aware that there was an anticancer agent. And I was called as an expert in assessing the images to evaluate, together with the rest, the other five members of that team, to evaluate the effectiveness of his treatment.

Q: And did you have occasion to actually go down to Houston, Texas?

A: Yes, we spent about seven hours at the Burzynski Institute and we reviewed the material that was given to us.

Q: What material did you review?

A: Initially there was a presentation of the cases by Dr. Burzynski; each different case was studied seperately. We were given the history, the pathology, the previous treatment and the timing of these treatments, and we have someone who recorded these data.

Pg. 117

Then the histological slides were presented to one of our neuropathologist, one neuropathologist who was also a guest consultant in the team. We reviewed the slides and confirmed the histological of the grade of the tumor that Dr. Burzynski was indicating in his presentation. Then there were assessments of the images, either CT scans or CAT scans, or MRI scans. They were serial studies in any given patient. So we were able to see how the tumor started and how it ended up under treatment.

Q: How many patients did you concern yourself with at that time?

A : we reviewed the material of seven cases. We did not have more time to review more. These were the--

Q: So that basically took up the whole day?

A : The whole day. yes; one hour per case.

Q: And what happened after you reviewed the cases?

A: Well, we took our notes and we discussed the findings, and there was a report that was issued indicating what we found.

Pg. 118

Q: We have marked for identification Exhibit 27. Will you see if you can identify that for us?

A: Yeah, I have seen this. Yeah.

Q: And is this-- What exactly is this?

A: it was a letter to Dr. Burzynski from Dorothy Macfarlane, one of the people who was part of the team. And the memorandum shows or summarizes are findings for each individual patient. And this is exactly document that we came up with.

Q: What was the basic conclusion of the-- that you indicated?

A: The basic conclusion was that in five of the patients with brain rumors that were fairly large, the tumor resolved, disappeared.

Q: Was that just happenstance? I mean, was that just by some miracle of--

A: Well, since the treatment given was started after the previous conventional treatments which had failed previously, we took the position that this probably represents the result of this new treatment. And so there was only minimal residual tissue at the tumor bed, which looked like a sca, and had no fissures to support that there was a tumor in the majority of the cases. Two of seven patients did not do very well. One of them deceased. The tumor dissolved at least

Pg. 119

microscopically; we could see it with the naked eye, but it recurred later, a year later. And the other, there was
very, very minimal decrease in the size of the tumor. But the tumor was very big, the last one, the seventh, last two cases did not survive, although there was definite improvement in one of the two last cases.

Q: I guess that would be called an objective response in that these patients--

A: exactly, because we were six people and we all looked at images and we saw the chronological order. We checked the names of the patients on the films, and the files were obtained at different institutions from the entire country, basically where the patients were located. And we had no reason to believe that these were not the results of the treatments.

Q: Doctor, based on what you have testified to before about your background and credentials, it's fair to say, isn't it, that you have seen a lot of brain cancer patients?

A: yes, in fact, we see a lot of these cases.

Q: And that's part of what you do at the hospital, is to evaluate treatments on brain cancer patients?

A: Well, different cancers, but since I am the neuroradiologist I see all brain rumors. And I see a large volume of then.

Q: Now, with regard to at least the five patients, I think

Pg. 120

you testified that five of the patients had their rumors resolved, they all--

A: Disappointed.

Q: --disappeared. Can you give us some kind of context of that? How often does that happen with any-- with no treatment, just by spontaneous remission, or by whatever it is that you--

A: I'm not aware that spontaneous remission occurs; I don't think it does. And the available treatment only rarely produce results like that. The only medication-- the only treatment, which I think is the last resort, is radiation therapy. Chemotherapy has very little to offer unless there is an experimental protocol somewhere. However, conventional chemotherapy is-- provides very little, nothing, basically. Radiation, there are some reports indicating that radiation treatment in children particularly could lead to resolution of the rumors, although I don't know whether it is a permanent one or temporary. So when this happens it is very rare. And I have seen only isolated here and there where that has happened with radiation .

Q: With one case here or there--

A: Yeah.

Q: --an isolated report, you are talking about on a case by

Pg. 121

case basis?

A: Yeah. Well, radiation should give these results, if it works at all, the first two months after completion of the treatment. In these cases, all the patients had already failed radiation because they were treated months, several months after radiation was
given and had failed.

Q: What happens with these patients? Lets say they failed radiation; what happens then to the patient with brain cancer?

A: Well, it depends on the grade of the tumor. If the tumor is low grade, astrocytoma, and we are talking about primary gliomas, if it is low grade, survival for years is possible. If it is an intermediate grade, the anaplastic, the mean survival is two years, and if it is the high grade glioma the mean survival is about 12 months. That's it; they die in 12 months, they disappear.

Q: Now-- So are you saying basically for someone that's failed radiation-- It sounds like you are saying that if someone has already failed radiation, at least, that there's not too much else--

A: nothing to offer, exactly.

Q: --and that these people are going to eventually die of their disease, barring any unforeseen event or cure?

A: Exactly.

Q: and there is nothing that any-- that you could do at NCI?

Pg. 122

A: Nothing we can do, no; not at the present time.

Q: All right. What about these five patients that are all basically doing-- how come they lived?

A: Well, it's amazing, the fact that they are living and some of them are doing well. They are not-- they are not handicapped from the side effects of any treatment, and worse than the tumor itself. So these particular individuals not only survived, but they didn't have major side effects. So I think it is impressive and unbelievable.

Q: How many times have you ever seen this, in your experience, that someone comes with a drug like this, to have this kind of effect? How often does that happen?

A: I don't-- I have not seen it at any time with the medication that is given systematically. We have done-- we have an experimental protocol at the NIH where we inject a chemotherapeutic agent through the carotid artery, the artery that goes to the brain, and we have three survivals with this technique, by providing massive amounts of chemotherapeutic drugs to the brain that harbors the tumor. And we destroy the tumor, but we destroy a large part of the brain as well, and the patients became severely handicapped , and a life that's not worth living.

Pg. 123

And so I have three cases with this particular experimental protocol which resulted in killing the tumor, but a large part of the healthy brain as well. So overall the protocol was abandoned and is not any more in effect because of the serious side effects that we witnessed.

Q: Now, let me ask your opinion or advice. Based on what you have seen from these patients-- I mean, I think the opinion actually, or the letter actually concludes that the site team concluded that there was antitumor effect from the antineoplastons. What would happen, let's say for some reason Dr. Burzynski's brain tumor patients can't get the medicine any more and have to go off treatment. What's going to happen to them, in your opinion?

A: I think these patients will die.

Pg. 124

Q: One of the patients you reviewed was F.M.; is that correct? What happened in his case?

A: The tumor was very large and very involved the hypothalamus, a very sensitive part of the brain cannot be operated, and had both cystic components and fleshy components, mass like. And the lesion disappeared . This patient did not have previous treatment, if I recall, other than-- previous chemotherapy or radiation, and the tumor disappeared under our eyes. It was a low grade astrocytoma, wich is comparable with long survival. However, even those low grade astrocytomas, when we see them, they don't go away even though they may permit the person to live for many years. In this particular patients case the tumor disappeared, and there was a small, tiny remnant left, small percentage of the original size. And there has been several years since then and the patient is well, I'm told.

Q: So at least for the patient you would not recommend that

Pg. 125

he go off the treatment, would you?

A: No.

Well, well, well. A radiologist talking about chemotherapy. Somehow, I suspect he's a little out of his realm of experience. Hint to DJT: it's always much more reliable for someone to talk about their field of experience - i.e. radiology - than for them to wander off and discuss chemotherapy.

And did you happen to notice this testimony is from 1993???? Almost 20 years ago, when the NIH thought there might be something in Burzynski's protocol. But here we are, 20 years later, and the still hasn't proven it works.

Next time, try using a copy/pasta that is a *wee* bit more current, OK?

Gah! I hate typos..."and HE still hasn't proven it works"

Oh, and yes, DJT: the host and most of the commenters on this blog ARE biased. We are biased in the direction of Science-Based Medicine, which has been tested and shown to reliably work. If Stan would give us some of his results, to allow replication, and his protocols were shown to work, we'd accept his methods too. But right now, all we get is hand-waving.

We learn from The Dividing Line Between the Role of the FDA and the Practice of Medicine: A Historical Review and Current Analysis that between 1977 and 1997, Burzynski "treated" some three thousand patients, or about 150 per year. Thus we can estimate that between 1977 and 1993, he "treated" 2,400 patients. Out of those 2,400, those described are presumably his seven best cases. And one died and another did not respond. So the results Burzynski presented appear to indicate that five out of 2,400 -- a little over 0.2% -- went into remission. That's ever so impressive.

The radiologist said he was not aware that these tumors ever underwent spontaneous remission. But would he know if the rate were as low as, say 0.2%?

DJT, you're posting a lot of irrelevant cut and pastes from SEC filings, court testimony, etc.

None of theses cut and pastes support a claim that antineoplastons are effective at treating advanced cancers.

To support such a claim what youl need to provide aren't SEC filings, or court testimony, lists of patent applications--what is needed are published results from 60+ clinical trials Burzynski's supposedly conducted over the past couple fo decades.

Direct question: are you unable to provide published results from these trials?

LW,

I really enjoy your "New Math for Dummies!!"

Please cite your credentials so I may compare them to:

Dr. Nicholas J. Patronas,
http://www.cc.nih.gov/drd/staff/nicholas_patronas.html

Senior Clinician, Chief. Section of Neuroradiology,, Radiology and Imaging Sciences, National Institutes of Health, NIH Clinical Center.

Academic Degrees
MD, Salonica University, Greece
Residency, University of Illinois
Fellowship, Northwestern University

Well, after the medical school we have a year internship, four years residency in radiology, and in addition I had an entire year of training in neuroradiology. So my subspecialty is neuroradiology. It is the evaluation of the regions of the central nervous system.

When I finished my training I was at the University of Chicago for seven years as a staff radiologist at the University Hospital. And then I moved to the National Institutes of Health where I worked from '81 to '85 as a staff radiologist at the clinical center, which is the hospital of the National Institutes of Health. Then I moved to Georgetown University where I became full professor of radiology. And the National Institutes of Health contracted Georgetown radiological services, and I was sent from Georgetown back to NIH to cover the section.of Neuroradiology.

I delight in your "Cherry Picking."

_____"And one died and another did not respond."

The basic conclusion was that in five of the patients with BRAIN TUMORS THAT WERE FAIRLY LARGE, THE TUMOR RESOLVED, DISAPPEARED.

Q: Was that just happenstance? I mean, was that just by some miracle of--

A: Well, since the treatment given was started after the previous conventional treatments which had FAILED previously, we took the position that this probably represents the result of this new treatment. And so there was only minimal residual tissue at the tumor bed, which looked like a sca, and had no fissures to support that there was a tumor in the majority of the cases. Two of seven patients did not do very well. One of them deceased. THE TUMOR DISSOLVED at least microscopically; we could see it with the naked eye, but it recurred later, a year later. And the other, there was very, very minimal decrease in the size of the tumor. But THE TUMOR WAS VERY BIG, the last one, the seventh, last two cases did not survive, although THERE WAS DEFINITE IMPROVEMENT in one of the two last cases.

Q: Doctor, based on what you have testified to before about your background and credentials, it's fair to say, isn't it, that you have seen a lot of brain cancer patients?

A: YES, IN FACT, WE SEE ALOT OF THESE CASES.

Q: And that's part of what you do at the hospital, is to evaluate treatments on brain cancer patients?

A: Well, different cancers, but since I am the neuroradiologist I see all brain rumors. AND I SEE A LARGE VOLUME OF THEM.

Q: Now, with regard to at least the five patients, I think
you testified that five of the patients had their TUMORS RESOLVED, they all--

A: DISAPPEARED.

Q: --DISAPPEARED. Can you give us some kind of context of that? How often does that happen with any-- with no treatment, just by spontaneous remission, or by whatever it is that you--

A: Yeah. Well, radiation should give these results, if it works at all, the first two months after completion of the treatment. In these cases, all the patients had already FAILED radiation because they were treated months, several months after radiation was
given and had FAILED.

Q: What happens with these patients? Lets say they FAILED radiation; what happens then to the patient with brain cancer?

Q: Now-- So are you saying basically for someone that's FAILED radiation-- It sounds like you are saying that if someone has already FAILED radiation, at least, that there's not too much else--

A: NOTHING TO OFFER. EXACTLY.

Q: --and that these people are going to eventually DIE of their disease, barring any unforeseen event or cure?

A: EXACTLY.

We have done-- we have an experimental protocol at the NIH where we inject a chemotherapeutic agent through the carotid artery, the artery that goes to the brain, and we have three survivals with this technique, by providing massive amounts of chemotherapeutic drugs to the brain that harbors the tumor. And we destroy the tumor, but we destroy a large part of the brain as well, and the patients became severely handicapped , and a life that's not worth living.

_____"1977 and 1993, he “treated” 2,400 patients. Out of those 2,400, those described are presumably his seven best cases. And one died and another did not respond. So the results Burzynski presented appear to indicate that five out of 2,400 — a little over 0.2% — went into remission. That’s ever so impressive"

What a disingenuous statement.

You have no idea what the resolution of the "2,400" was.

5 out of 7 were AMAZING and IMPRESSIVE and then you try with your "New Math" to imply that this means that because 2 did not survive after radiation FAILED and the prognosis was that they would have DIED anyway, you want us to believe your false numbers.

If you had 7 patients you could call that: 70%.
5 successful patients would then be: 50%
Change 70% to: 100% (by adding 30%)
Change 50% to: 80% (by adding 30%)
80% minus 100% = 20%
So 20 deaths out of 100 = 80% survival rate.
That would be a base-line calculation.
If you factor in that the survival rate may NOT have been as high as 80% because these were his Best Case Scenarios, we still come nowhere near your 0.2%.

You have no idea what the resolution of the “2,400″ was.

Do you know what the results were for the estimated 2,400 patients treated by Dr. Burzinsky? How do you know?

Oh my. Oh my.

If you had 7 patients you could call that: 70%.
5 successful patients would then be: 50%
Change 70% to: 100% (by adding 30%)
Change 50% to: 80% (by adding 30%)
80% minus 100% = 20%
So 20 deaths out of 100 = 80% survival rate.

Is that how they do math in your grade school? No wonder you think simple division requires a doctorate. Oh my.

JGC

Ignorance is no excuse for NOT knowing the Law, and neither is ignorance an excuse for not knowing ;

1986 – All…were submitted for PHASE I CLINICAL STUDIES…

http:// assets0. pubget. com/paper/3527634/Antineoplastons__history_of_the_research__I_
.
.
1987 – Initial CLINICAL STUDY…with 5 years’ follow-up.

This paper describes PHASE I CLINICAL STUDIES…

http:// assets0. pubget. com/paper/3569010/Initial_clinical_study_with_antineoplaston_A2_injections_in_cancer_patients_with_five_years__follow_up
.
.
1987 – PHASE I CLINICAL STUDIES…

…was submitted for PHASE II CLINICAL STUDIES…

http:// assets0. pubget. com/paper/3569012/Phase_I_clinical_studies_of_antineoplaston_A3_injections
.
.
1987 – PHASE I CLINICAL STUDIES…

CLINICAL TRIALS described in this paper…

http:// assets0. pubget. com/paper/3569014/Phase_I_clinical_studies_of_antineoplaston_A5_injections
.
.
1990 – The present study describes the results of treatment… in PHASE II CLINICAL TRIALS…

http:// assets0. pubget. com/paper/2152694/Treatment_of_hormonally_refractory_cancer_of_the_prostate_with_antineoplaston_AS2_1
.
.
2003 – PHASE II study…

A PHASE II study…

http:// assets0. pubget. com/paper/12718563/Phase_II_study_of_antineoplaston_A10_and_AS2_1_in_patients_with_recurrent_diffuse_intrinsic_brain_stem_glioma__a_preliminary_report
.
.
2004 – PHASE II study…

http:// assets0. pubget. com/paper/15563234/Phase_II_study_of_antineoplaston_A10_and_AS2_1_in_children_with_recurrent_and_progressive_multicentric_glioma___a_preliminary_report
.
.
2004 – These TRIALS…

http:// assets0. pubget. com/paper/15312271/Long_term_survival_and_complete_response_of_a_patient_with_recurrent_diffuse_intrinsic_brain_stem_glioblastoma_multiforme
.
.
2005 – …were treated in PHASE II studies…

http:// assets0. pubget. com/paper/15911929/Long_term_survival_of_high_risk_pediatric_patients_with_primitive_neuroectodermal_tumors_treated_with_antineoplastons_A10_and_AS2_1
.
.
2006 – CLINICAL TRIALS…

http:// assets0. pubget. com/paper/16774296/Treatments_for_astrocytic_tumors_in_children__current_and_emerging_strategies
.
.
2006 – in 4 PHASE 2 trials

http:// assets0. pubget. com/paper/16484713/Targeted_therapy_with_antineoplastons_A10_and_AS2_1_of_high_grade__recurrent__and_progressive_brainstem_glioma

If you had 7 patients you could call that: 70%.
5 successful patients would then be: 50%
Change 70% to: 100% (by adding 30%)
Change 50% to: 80% (by adding 30%)
80% minus 100% = 20%
So 20 deaths out of 100 = 80% survival rate.

OMG! We have been wasting time replying to a halfwit. With mathematical skills like this, I would be surprised if he is able to dress himself in the mornings.

Safe to say that, after this display of imbecility, we can ignore any future moronic screed from diddums and he can go back to his cartoons, cookies and milk before bedtime

Ignorance is no excuse for NOT knowing the Law, and neither is ignorance an excuse for not knowing

Are you under the impression that moving to another thread allows you simply repeat the same failed efforts?

If you had 7 patients you could call that: 70%

Don't give up your day job, Sir Diddimus.

Shay,

I fear LW is right (as usual) - it is quite likely Diddimus is too young to be employed legally in most first world countries.

Apparently Squidimus considers "New Math" to be any math developed after that advent of agriculture or possibly even any math developed the invention of the spear.

MI Dawn,

If you had actually read the above you would know that there were 6 individuals as part of the team.

Ignorance is NOT an excuse for NOT knowing the Law, and neither is it an excuse for not knowing:

2004

Managing social conflict in complementary and alternative medicine research: the case of antineoplastons.

Authors

Mitchell R Hammer and Wayne B Jonas

Integr Cancer Ther 3(1):59-65 (2004), PMID .15035877

Journal

Integr Cancer Ther. 2004 Mar;3(1):59-65.

Affiliation

International Peace and Conflict Resolution Program, School of International Service, American University, Washington, DC, USA.

Abstract

From December 1991 to December 1995, the National Cancer Institute (NCI) initiated phase II clinical trials of A10 and AS2-1 (antineoplastons) infusions in patients with diagnosed primary malignant brain tumors.

Four years and more than a million dollars later, these studies were stopped before it was possible to determine the effectiveness of antineoplastons.

In an effort to determine why this study failed to be completed.

The intent was to understand the social dynamics surrounding this failed study and to develop a method for managing and possibly preventing such failures in the future.

This article summarizes the findings from this case study.

PMID .15035877 [PubMed - indexed for MEDLINE]
HighWire Press

'm going to try to explain this in terms that DJT may possibly be able to grasp.

Let's play "Let's Pretend". We'll pretend that I have a great big pile of candies, 2,400 of them in fact, but don't worry about the big number. Now I tell you to pull out your seven most favoritest candies. Your very most favoritest candies are cherry. So you start looking through aaaallll the candies, and they all seem to be icky licorice. But you go through all of them, and you find just five cherry candies. But I said you should get seven, so you look through aaaallll the candies again, and there just aren't any more cherry, so you take two licorice candies. Now you have seven even though you don't really like the last two.

Now, let's think about Burzynski. He was supposed to make people well, or at least to make them not die. He was supposed to present his seven best cases. So he looked through aaaallll his 2,400 or so cases and he found five patients that recovered for his "best case scenario".

Why did he stop at five? Why didn't he present seven patients that recovered? Surely a patient that died is not so good a case as a patient that recovered. I deduce that he did not present seven patients that recovered because he didn't have seven patients that recovered. In twenty years.

Do you have a better explanation for why he didn't present seven patients that survived?

LW,

If I need to break Math down to a simplistic level so you can understand it, that's what I'll do.

I see you had "NO COMMENT" about the final conclusion but resorted to your usual blatherskite.

Try again!!!

@ Diddums.

If I need to break Math down to a simplistic level so you can understand it, that’s what I’ll do.

You might want to re-check your math whilst referring to a 5th grade math primer......................

Ya know, the 2 faceless beings who combat "FACTS" with no "FACTUAL" cites, and want to ask questions but not answer them?

Oh, DJT. Oh my. You have absolutely no idea what a fool you've made of yourself. I shouldn't even mock you anymore. In a battle of wits you are totally unarmed. It's a good thing you use a pseudonym, because when you grow up and look for a job, you sure won't wa t prospective employers to see this.

Didymus Judas Thomas,

LW skewered you well and truly. You clearly do not know how to do math. Try again.

Let's take 3 possible cases:

1. Burzynski picked the 7 best possible cases. In that case the math works out exactly like LW states.

2. Burzynski picked an absolutely representative sample of his results. in that case, his survival rate is 5/7 - or 71.4% This would be very respectable, but in no way matches your calculations.

3. Burzynski picked 7 cases at random. In that case, we have absolutely no basis on which to determine what his overall survival rate is. These 7 could have been better than his average; they could have been worse than his average.

Don't embarrass yourself any more than you have to. Please.

The URL's you've provided aren't resolvable--is it too much to ask that you provide links that actually work?

From the titles however it's evident that you're again offerring non-peer-reviewed abstracts from conference poster seessions (e.g. "Phase II study of antineoplaston A10 and AS2 1 in children with recurrent and progressive multicentric glioma "), review articles e.g., "Treatments for astrocytic tumors in children: current and emerging strategies"), editorials, etc., rather than what you've been specifically asked for (published reports of completed Phase II clinical trials demonstrating efficacy of antineoplastons in treating advanced stage cancers).

I prety much have to conclude therefore that your answer to my questionis "No, I am not in fact able to provide citations of published reports for any of the 60+ clinical trials Burzynski's conducted over the past 2 decades."

LW,

Let's say I have a "Cherry Picked" question, and I know who would most likely know the answer, but I don't have the COBOLS to contact them directly & ask. I'd rather blatherskite on a blog & throw out hypothesis and "guesses" instead. What should I do? Grow a Pair or continue on in the same vein?

We can play "Guessing" Games all day long, but "Guessing" Games are nothing but Speculation and Assumptions.

I could ASSUME that Patient X was going to DIE anyway because their Cancer had progressed to that stage & radiation had FAILED, but still show investigators that the Cancer was being reduced before they DIED.

Please cite where SRB says he can cure ALL forms of Cancer.

@Didymus Judas Thomas - please cite where SRB published in a peer reviewed article the results of studies that show that antineoplaston therapy (either in conjunction with conventional therapy or in the absence thereof) is more effective than conventional therapy. That will settle the question nicely.

Note: the citations you've brought up before simply aren't sufficient, as discussed by others in this blog.

@Didymus Judas Thomas – please cite where LW has claimed that SRB made any such claim. Thanks.

I'm not responding to DJT because I don't believe in cruelty to children.

JGC,

I am not interested in Orac's Spam BOT Tu-Quack Blocking, so I add spaces after the periods and/or http:// so the post doesn't get stuck in the "Review" stage.

Simply remove the spaces.

LW,

This:

_____"It’s a good thing you use a pseudonym, because when you grow up and look for a job, you sure won’t wa t prospective employers to see this."

From someone going by "LW."

Seriously!!

Is THAT the best you've got???

Diddums,

You keep pushing the same publications over and over again, despite being told by everyone that they are not hat you say they are.

THEY ARE NOT THE RESULTS OF CLINICAL TRIALS.

All you are doing is proving what we already know. That Burzynski has started scores of clinical trials in order to continue bilking cancer patients and their friends and families out of hundreds of thousands of dollars.

Show us the RESULTS of these trials, and your argument might begin to gain some traction.

Oh, and please note for future reference that mastery of the Strawman logical fallacy in no-way makes up for your lack of understanding of even basic mathematical skills.

Seriously, my 6 year old niece has a better grasp of basic math than you do.

@Didymus Judas Thomas,

I say this as a friend. Well, as a person who doesn't actively mean you harm.

LW is not wasting an A game on you. Based on what you've said so far, you don't rate.

The comment you quoted is more on the lines of good advice.

And yes, I do go by a pseudonym. This is not so I can gratuitously insult people. What's your reason?

MB,

___"Why did he stop at five? Why didn’t he present seven patients that recovered? Surely a patient that died is not so good a case as a patient that recovered. I deduce that he did not present seven patients that recovered because he didn’t have seven patients that recovered. In twenty years."

He asks why not 7? Thus he posits a theory that SRB could be claiming to cure all Cancers.

@Didymus Judas Thomas-

Au contraire - as LW clearly stated, these were presumed to be SRB's seven best results. If SRB treated exactly 7 patients over 20 years, then the best would also be a representative sample. If, as LW suggests, these are the best out of 2,400 patients in that time, then the results are abysmal regardless of SRB's claims.

Treatments for astrocytic tumors in children current and emerging strategies.

Sure thing--just let me know which of the many URL's directs me to the published report for a completed Phase II clinical trial demonstrating that antineoplastons safely adn effectively treat advanced stage cancers. There's no sense, after all, in reomving the undersores to arrive at an abstract from a conference talk or poster session, an editorial opinion or a general review article.

So, which one(s) do you suggest I examine?

He asks why not 7? Thus he posits a theory that SRB could be claiming to cure all Cancers

he's simply asking why he's picked onl;y 5 of the thousands of patients he's treated. Are you suggesting that Burzzynski has been treating (and charging hadnsomely for the privilege) thousands of patients for cancers he never believed he could cure?

@Diddums

He asks why not 7? Thus he posits a theory that SRB could be claiming to cure all Cancers.

You still believe that the Strawman will replace mathematics in Science as the best way to carry an argument?

@Mephistopheles O'Brien: that was indeed meant as advice. I have no objections to pseudonyms unless they're used to do harm, and I *especially* do not object to pseudonyms for children and young adults. Indeed I think they *should* have pseudonyms. It is all too easy to say something stupid on the Internet -- and the Internet never forgets.

I've seen Twitter feeds from young people whose contents would absolutely convince me that I never wanted to work with them. But they will grow up and perhaps learn better, and a prospective employer should judge them by what they have become, not what they were. But if an employer googles them and finds hostility and bad language, that may create an impression that is hard to overcome.

I think of the children of today trying to get jobs in a tough labor market, with their Twitter feeds and their facebook pages and their blogs following them through life ... and yes, I am sincerely glad that DJT uses a pseudonym and won't be tagged with this silliness for life.

Does this mean any of you have actually reviewed one of these or are you just all "ASSUMING" that because it doesn't have the Title you think it should have, that that automatically excludes it from being an actual Clinical Trial Publication.

Please explain how FDA approved Phase II Clinical Trials without what you allege not having been published. & how FDA approved Phase III Clinical Trials under the same criteria.

Is it possible that if those publications do not contain what you allege they do not contain, that possibly you have not read all the FDA regulations to see if there is an "Exception" that the FDA allows for certain reasons?

None of you disproved my math. If you have 7 individuals & 2 die, you still don't get 0.2%, but none of you alleged "Wizards of Math" had the cajones to call LW out on it, just like none of you had the Gonads to contact Merola like I did when I was "Fact-Checking" Orac's Movie blog.

The "FACTS" are that I have cited issues with both sides of the discussion whilst people like Tu-Shay adds nothing to the discussion - no cites, no research, just blah, blah, blah!

In fact, above I just disproved the NIH claim about their alleged valid clinical trials.

And I'm still just getting warmed up. ;-)

In other news, BZYR is down to a nickel with a bid-ask spread of 18 cents.

Does this mean any of you have actually reviewed one of these

Yes.

None of you disproved my math.

Wrong.

If you have 7 individuals & 2 die, you still don’t get 0.2%,

Oh, honey.

None of you disproved my math.

Er, dude, I did. Repeatedly from multiple angles. The fact remains that given a particular set of assumptions, LW's math is correct. In no set of assumptions is your math correct. Deal with it.

None of you disproved my math.

Wrong.

I think most people either were overcome by laughter, or recoiled in horror.

@Diddums

I am getting sick of your bluster and bullsh*t.

If you have 7 individuals & 2 die, you still don’t get 0.2%, but none of you alleged “Wizards of Math” had the cajones to call LW out on it......

No - we didn't call LW on his math, because THIS ISNT WHAT HE CLAIMED you feckless moron.

You obviously have a reading age of below double figures too. You are about as much use as a one legged man in an arse kicking contest.

Seriously, give it up, you are just making a complete and utter fool of yourself.

I think it may be worth pointing out that Dr. Patronas is quoted as saying:

Michael Hawkins from NCI asked me to join a group of other physicians and scientist and come to Houston on a site visit to Dr. Burzynski’s Institute in order to assess the best case scenario that he had to present us of his patients who were treated with antineoplastons.

So there 7 patients are undoubtedly a best case series, the very best examples that Dr. Burzynski could find in his records of the thousands of patients he had treated at that time.

By the way, I have written to Dr. Patronas, asking his current opinion of Burzynski's work. I will report any reply here.

Sorry, typo: "these 7 patients".

@Mephistopheles O'Brien: "The fact remains that given a particular set of assumptions, LW’s math is correct."

The particular set of assumptions and conclusions is:

1) By 1993 Burzynski had treated approximately 2400 patients.

2) Burzynski needed to produce seven "best case scenario" patients.

3) a patient that survives is a better "best case scenario" that a patient who died of the disease.

4) Therefore Burzynski would produce seven patients who survived if he could.

5) Burzynski produced only five patients who survived, and two who did not.

6) Therefore Burzynski could not produce more than five patients who survived.

7) Therefore no more than five patients out of approximately 2400 actually survived.

8) 5/2400 is approximately 0.00208, rounded to 0.2%.

Now you can argue that there were more survivors but Burzynski had no records for them, but that is a condemnation of Burzynski in itself.

You can also argue that there were more survivors but they refused to consent to release of their records, but why would they do that? We're supposed to believe that they believed they owed their lives to him. Why wouldn't they consent to release of their records to save his license so he could save more patients like them?

So, as I finished before, what other reason is there for Burzynski not to produce seven patients who survived, out of thousands treated?

In his one-sided rearguard battle against LW's mathematical conspiracy, DJW seems to be channeling Captain Redbeard Rum:

"I was under the impression that it was common maritime practice for a ship to have a crew."
"Opinion is divided on the subject: All the other captains say it is, I say it isn't."

@herr doktor bimler

Ack! DJT, not DJW! DJW is my sister.

Herr Doktor: perhaps he's channeling The Princess Bride.

"We'll never survive."

"You're just saying that because no one ever has."

From Dr. Patronas:

Well, radiation should give these results, if it works at all, the first two months after completion of the treatment. In these cases, all the patients had already FAILED radiation because they were treated months, several months after radiation was given and had FAILED.

From Late response to radiochemotherapy in pediatric glioblastoma: report on two patients treated according to HIT-GBM protocols.

The authors report on 2 patients with incompletely resected glioblastoma multiforme in which response was lacking 3 weeks after radiochemotherapy but became evident 12 weeks later.

So it is entirely possible that the response noted by Dr. Patronas and his team was a late response to conventional treatment, and not a response to Dr. Burzynski's treatment at all.

Going on past form, DJT will now remind you of the qualifications now held by Dr Patronas as evidence of his infallibility 19 years ago.

And here I was thinking you were satirising Squidymus from the other thread, re: his terrible math.

This requires a serious facepalm. Or a Poe's law. Or a retreat from Diddums from the internet and back to kindergarten.

*INTERCOM VOICE* Would the parent please pick up their child from aisle 5? His google droppings are getting everywhere. Parent to aisle 5 please, aisle 5 kid needs a parent. *INTERCOM VOICE*

Please explain how FDA approved Phase II Clinical Trials without what you allege not having been published. & how FDA approved Phase III Clinical Trials under the same criteria.

Holy crap, does he think the results come *before* the clinical trials? Or am I parsing that wrong?

Is it possible that if those publications do not contain what you allege they do not contain, that possibly you have not read all the FDA regulations to see if there is an “Exception” that the FDA allows for certain reasons?

Care to point us in the direction of this "exception" in the regulations, proof Burzyinski got such an exemption, and a reason why he was allowed such an exemption?

None of you disproved my math. If you have 7 individuals & 2 die, you still don’t get 0.2%, but none of you alleged “Wizards of Math” had the cajones to call LW out on it, just like none of you had the Gonads to contact Merola like I did when I was “Fact-Checking” Orac’s Movie blog.

Or Squidymus, you don't have to "fact check" an equation that primary school children would see through. Even if it wasn't needed, several people provided explanations of why you were wrong.

And I’m still just getting warmed up

Oh goody. Where's the popcorn? Anyone got some butter?

@flip: "And here I was thinking you were satirising Squidymus from the other thread, re: his terrible math."

I'm not that imaginative.

Man, djt is good for some laughs, at his/her/its utter ignorance of kindergarten math and elementary school science.

@flip, pass the popcorn, I'm going to have some nice laughs when djt comes back and keeps proving his own idiocy.

Popcorn or cookies, tough choice.

@Didymus
I'm interested in your info because it is a compelling testimonial. It suggests that some patients may respond to antineoplastons plus conventional therapy, which is apparently what they get at the Burzynski Clinic. I frankly expect that; given the plural nature of cancer and the chaotic nature of human physiology, I would expect any given therapy that targets a single causative pathway would be highly effective in ~5% of refractory cancer cases.

Suppose I grant that some surprising results, miraculous even, can be got by Dr. B's methods. Now comes the tougher question:
Why the hell is he just sitting there, hoarding it?

If you heard that Pfizer had some miracle cure for 5% of cancers, but they only sold it "cash-up-front" at their private clinic in Miami at a premium price... wouldn't you be out front, picketing? Why hasn't Burzynski done what every other cancer researcher does when they hit on some amazing discovery: sell it to a drug company for broader distribution and rigorous testing?

Why the lack of clinical testing, or scientific rigor?

The most damning statistic for me is that 62 studies have been attempted, and only 1 has been marked completed, and it was a Phase II in end-stage melanoma (CDR0000066552). If I compare that to a small pharma-tech in the same state, Reata, a company of ~100 people ... they have 23 studies and 11 are completed. The big boys in Research Triangle Park have 100 to 200 studies, but 60-70% typically are marked as completed...

My conclusion from all of this is not that antineoplastons CANNOT work.... clearly they could. So could DCA, sylvestrin, cannabinoids, shaman magic and pixie dust. There may yet be something useful to be gleaned from this set of compounds. What I am suspicious of is the marketing machine of the Burzynski Clinic and their exploitation of both the federal guidelines around clinical trial management and their exploitation of the desperate hope of a family with an afflicted loved one. I'm not opposed to the possibility of a breakthrough in cancer treatment being made, but these people are making no progress on that front. It stinks of salesmanship, not science.

Something is rotten in the Independent Republic of Texas.

@Didymus
Something that I should add to my previous comment:
Why does Burzynski charge for clinical trials? He owns the patent (US Patent 7,427,619) on antineoplastons, actually several of them. Again, if you had the choice between being the exclusive source for a cancer cure, or licensing it to a major pharma for world-wide distribution... what kind of monster would you have to be to limit it to cash-up-front patients in the numbers Burzynski has seen in the last 30 years? What about the millions who died without having the means to seek his miraculous cure?

Best case scenario for me: He's either a
1. fraud/marketing machine or
2. a megalomaniac, hoarding something that should be released to the world for his own small profit.

Is there some third alternative I'm not considering? If it really works, what the heck is he up to with his business model? Hell, I'll make the introductions to some friends at Baylor or MD Anderson just across the city (both world-class research institutions that have completed thousands of clinical trials) if he needs some help getting his miracle cure properly and rigorously tested.

Sharing the popcorn... and grabbing a cookie for myself.

I fear you are wasting your time C0nc0rdance.

A) You have failed to take into account Diddum's inability to comprehend anything but the very shortest of sentences.

B) Even if he understand's the gist of your questions, his inability to do even basic maths means you lost him as soon as you used something as complex as a percentage.

C) I have my doubts as to whether even a blatant bullsh*tter like Diddums would dare reappear after making such an arsehat of himself.

D) LW owns him - have you asked permission to speak to him?

oops............ apologies for extraneous apostrophe in B) above

Oh, I disclaim all ownership. Y'all feel free to try to communicate with DJT.

I think c0nc0rdance set out the possibilities quite well: either Burzynski does have what he claims, in which case he's a monster (also shortsightedly greedy) for keeping it to himself for thirty years while people die all over the world for lack of it; or else he doesn't have it, in which case he's a monster preying on the hopes and fears of dying people, torturing them too since his treatment is apparently quite unpleasant. Either way he's a monster.

MI Dawn,

_____"”and HE still hasn’t proven it works”
Oh, and yes, DJT: the host and most of the commenters on this blog ARE biased. We are biased in the direction of Science-Based Medicine, which has been tested and shown to reliably work. If Stan would give us some of his results, to allow replication, and his protocols were shown to work, we’d accept his methods too. But right now, all we get is hand-waving.

I really & truly hate to break this to you, but the FDA wouldn't have granted Phase III Trials if they didn't have what they required.

So guess what?

It's like my Middle School History teacher used to say:

"YOU ... DON'T ... GET ... A ... VOTE!!!"

What concordance said.

"I really & truly hate to break this to you, but the FDA wouldn’t have granted Phase III Trials if they didn’t have what they required."

DJT has a quite touching faith in the infallibility of FDA bureaucrats.

I really & truly hate to break this to you, but the FDA wouldn’t have granted Phase III Trials if they didn’t have what they required.

Uh-hunh.

So your syllogism is basically:

1) Burzynski has been allowed to start one Phase III clinicial trial.
2) No treatment has ever been allowed to move to Phase III clinical trials, not even through a failure of oversight, without all the needed Phase II clinical trials having been satisfactorily concluded.
3) Therefore all Burzynski's Phase II clinical trials must have been satisfactorily concluded.

I really don't see any reason to think premise 2 is correct, especially as it appears to imbue the FDA with an infallibility that I'm sure you would NEVER grant them having when it comes to Big Pharma. You can't go spouting off all over the place about how the FDA let GSK and Merck and Pfizer get away with murder and then turn around, blink your eyes innocently, and say, "Why, despite the smoking gun in Burzynski's hand and the dead body on the floor, it must not be murder because the FDA would never have let him get away with it!"

So guess what?

It’s like my Middle School History teacher used to say:

“YOU … DON’T … GET … A … VOTE!!!”

Even if your history teacher from last semester were the arbiter of everything in the world and had the authority to take away the "votes" of everyone in the world (another premise I see no reason to grant) you are not he. Your teacher, I am sure, knows enough of third-grade math not to think "seven patients = 70%."

DJT also has little or no Knowledge of the FDA's Special Protocol Assessment for phase III and how that shreds his argument that Burzynski MUST have proven efficacy to progress to a Phase III trial.

http://www.ministryoftruth.me.uk/2011/12/05/burzynski-just-one-more-thi…

I thought of trying to explain the correct computation to DJT, but that would involve explaining most of third grade math so I gave up. I did think s/he might recognize the absurdity of his/her method of computation by example, but I doubt s/he could even grasp that. Still, here it is:

Let's pretend there were only three patients and two died. Now let's compute the survival percentage the DJT way:

If you had 3 patients you could call that: 30%.
1 successful patient would then be: 10%
Change 30% to: 100% (by adding 70%)
Change 10% to: 80% (by adding 70%)
80% minus 100% = 20% (actually that's -20%, but in this context a detail like a missing sign is trivial)
So 20 deaths out of 100 = 80% survival rate.

There you go! 1 is 80% of 3 and 2 is 20% of 3 according to the DJT method.

Perhaps, DJT, you will now see why everyone reacted with various combinations of hilarity, horror, and pity at your attempt at mathematics.

Further to my previous comment on Burzynski's phase III trial:

BKsea commented just a few short weeks ago on the "yet another Patient....." thread:

.................Burzynski has only gotten approval from the FDA of a Special Protocol Assessment (SPA) for his phase 3 trial. My understanding is that this is just an approval of the trial design, not permission to enter into the trial. He will still need an Investigational New Drug (IND) approval, which requires evidence of efficacy from phase 2. Presumably, he has not started phase 3 because he has no evidence of efficacy and cannot get an IND approval from the FDA.

Can't get anything right can you Diddums?

Very interesting find, MarkL. It looks as though the much-vaunted Phase III trial was actually nothing more than an approval of the trial protocol, submitted before the actual New Drug Application for the Phase III trial. But getting the protocol approved is only a step in the process of getting approved for a Phase III trial - you also have to provide the results of Phase II trials, among other requirements. This may explain why the FDA has repeatedly denied any knowledge of a Phase III trial by Burzynski, yet one such trial is listed on ClinicalTrial.gov.

MarkL,
I have been wondering about that Phase 3 trial for some time, so thanks for posting that link, which explains that it doesn't mean what Burzynski's supporters claim at all.

It occurs to me that Squidymus is actually providing "defence of truth" even if it's not in the way he intends it: the more he posts, the more digging shows that Burzyinski is up to no good.

It occurs to me that there are fundraisers to allow desperate dying people to be experimented upon by Burzynski. Sometimes after they die these fundraisers are continued to allow other desperate dying people to be experimented upon by Burzynski. But are there any such cases where the patient *didn't* die? Where they gratefully continued the fundraiser to help others be saved as they were? If there are no such cases, it's a pretty good hint the Burzynski's success rate is low, is it not?

There's interesting stuff in MarkL's link for a disinterested seeker after truth such as DJT. For someone who likes to present himself to the alt-med world as a fiercely maverick foe of Big Pharma, Burzynski writes a lot of those truth-spinning press releases for the business world, trying to convince Big Pharma to invest in his company.

If it's only their money he defrauds I won't feel so bad.

For someone who likes to present himself to the alt-med world as a fiercely maverick foe of Big Pharma, Burzynski writes a lot of those truth-spinning press releases for the business world, trying to convince Big Pharma to invest in his company.

BZYR has been the focus of at least one organized pump-and-dump effort (PDF), in 2011 November.

@ Narad

And I guess we can conclude that the Phase III trial (or rather the approval of a putative trial protocol) is merely another attempt to bolster the scientific credibility of the brave maverick's business venture so that he might open another revenue stream (bilking investors out of their money) before the whole edifice comes crashing down around his ears, rather than an earnest attempt to prove efficacy.

I doubt that Burzynski had anything to do with it; his income stream is fine. One might idly wonder whether Merola is or was a shareholder, though. I started to harbor the suspicion that Squidymus, who appears to be unsophisticated on nearly every level, might have been suckered into buying this when it started barfing up SEC filings. To quote pumpsanddumps-dot-com, "forums such as investorshub[.]com, siliconinvestor[.]com or the Yahoo Finance Message Boards usually contain contributions from child-like posters who are there for no other reason than to try and convince themselves that they made a good investment."

@LW
Larry and Margaret Manning founded the "Setting Them Free Foundation" after Margaret was allegedly successfully treated by Burzynski. It's one of several deceitful and scammy fundraising sites for Burzynski patients, and includes active fundraising links for deceased patients. They even offer a fundraising "campaign guide." Ack.

Seems to me they've sold their souls to Burzynski, like Merola (whose niece was apparently a Dr. B patient who died). Maybe it's all part of an effort to pay off their outstanding debt from Dr. B's treatment.

@Narad

In the disclosures:

DGMR has received compensation for non-investment banking services on the small-cap universe, and expects to receive additional compensation for non-investment banking services on the small-cap universe, paid by issuers of securities covered by DGMR. Non-investment banking services include investor relations, and advertising services

In the disclosures

Oh, they're paid touts; that's not in question.

(Or, to be more clear, the question is who paid them to put this one out. I'm doubt they're unwilling to slap a "letterhead" on "client"-supplied copy and cram it in the pipe.)

^ "I doubt." Must be more careful with revising on the fly.

@Narad

Re: the 'pump and dump' link, I love how under "RECENT ARTICLES AND PUBLICATIONS" - a vimeo link, 2 youtube links and 1 article on Mercola's site. And that's it! No other citations, no links to peer-reviewed papers... just those.

Why in the world would an investor put money into a medical company when they only cite videos?

Larry and Margaret Manning founded the “Setting Them Free Foundation” after Margaret was allegedly successfully treated by Burzynski. It’s one of several deceitful and scammy fundraising sites for Burzynski patients, and includes active fundraising links for deceased patients. They even offer a fundraising “campaign guide.”

Burzynski employee Marc Stephens (in charge of search-engine gaming) had a well-documented role in setting up the purported "Burzynski Patients Group" website. One wonders on how many other "help Patient X" might his slimy fingerprints be found.

Plz to put italics around first paragraph above.

Why in the world would an investor put money into a medical company when they only cite videos?

The marks aren't investors, they're nickel-slots, lottery-ticket types being preyed upon by low-rent bottom-feeders.

@Flip

Why in the world would an investor put money into a medical company when they only cite videos?

Why don't you ask DJT?

@Narad and Militant Agnostic

Evidently I should have used a /rhetorical tag... because it was rhetorical.

As for asking DJT, I would if I thought he might answer in less than a few sentences. Or in a way I could understand the reply.

Well, it seems that Dr. Burzynski is more after the money than after the cure. The "personalized" approach, either by grouping or by real "personalization" certainly helps. The problem is when this "personilzed" excuse is used for un-scientific approaches.
Anyway I disagree that "personalized" treatments is the key. I'd say it really helps but the problem in my opinion lies on finding more effective generic approaches to cancer. All tumorous cells can be descrived by a few common characteristics that discern them from healthy cells. Those characteristics should be treated, like radiotherapy does, but in a more elegant way.

For funding, research and peer finding please refer to the non-profit Aging Portfolio.

There must be something wrong if I tend to associate a screenname like 'Healthy' with someone willing to promote some quack.

@ Healthy,
I can only agree with your post.

There must be something wrong if I tend to associate a screenname like ‘Healthy’ with someone willing to promote some quack.

Well, it's clearly promoting something.

@Narad

Indeed. 'Healthy' has posted the same sentence on four different blog posts, and as an unrelated tag to the end of more contextually-apt comments. It seems to be spamming.

@flip - I was going to say the same thing....

Hannah's doing well
http://www.youtube.com/watch?v=8c1f9XcFJSc

Stanislaw Burzynski: On the arrogance of ignorance about cancer and targeted therapies

oracknows — Wed, 05 Dec 2012 02:46:51 +0000

Stanislaw Burzynski: On the arrogance of ignorance about cancer and targeted therapies

Here we go again.

Because he's been in the news lately, I've been writing a lot about the "brave maverick doctor" known as Stanislaw Burzynski who claims to have spectacular results treating normally incurable cancers using something he calls antineoplastons. Unfortunately, the reason Burzynski has featured prominently in the skeptical blogosphere over the last two weeks is because, unfortunately, the Texas Medical Board (TMB) dropped its case against him. Basically, Burzynski got off on a technicality.

For purposes of this post, I don't want to dwell on this case, because I've already pretty much beat it into the ground. I don't even want to visit any patients of Burzynski who trusted him but are dying or have died anyway. Sadly, we've met several of them over the last year, most recently Amelia Saunders. Rather, what I want to concentrate on is the perception of Burzynski by his followers versus the reality, and the way I want to get at that issue by going straight to the source. It just so happens that not too long ago, an alternative medicine rag published an interview with Burzynski, which Burzynski has posted on his very own website. (Hat tip to the reader who pointed this interview out.) The usual self-serving blather is there, of course, but it's the contrast between the picture of Burzynski as a misunderstood scientific and medical genius on par with Pasteur that his followers like to promote. And, of course, this genius is "persecuted" by the dogmatic medical establishment, who only wants to "cut, poison, and burn." Burzynski himself promotes both memes, but particularly the paranoia:

Do you think that understanding in the medical community about your research is improving with time or evolving? Dr Burzynski: Absolutely. Some of the brightest oncologists are working together with us. We have a group of about 100 top oncologists. We are treating patients together with oncologists from all over the world. We are talking about the brightest guys. The rest of the club does not understand what we do at all and hate us. They would like to get rid of us. They hate to see our good results. But this crowd also will change if the breakthrough comes. So at this moment, we have to convert oncologists one by one. Of course, I am giving lectures at the oncology congresses, but only a few of these doctors will pay attention to what I have to say because I am not from a big medical institution. They don’t believe something can come from a small clinic, a small research center. They all assume research must come from a big pharmaceutical company or big institutions. Unfortunately, not much good came from these institutions within the last decade. But a number of doctors are beginning to understand what we do, and the number of those who would like to be trained in our strategy is increasing all the time. We have oncologists coming to us from various countries almost all the time to learn how to use our approach.

This is about as unbelievable a paragraph as I've ever seen. In reality, oncologists shun Burzynski—and rightly so, given that he has yet to publish anything resembling a convincing result suggesting the efficacy of his antineoplastons against cancer. That's not to say he doesn't publish (although he hasn't published anything in a PubMed-indexed journal before 2006, not counting this interview, which is in a journal that should not be PubMed-indexed and isn't even an original research paper anyway). It's painfully obvious from this paragraph that Burzynski doesn't know academic oncologists. None of them whom I've ever met assume that nothing useful can come out of a small clinic or research institute. That's just rank stupidity if Burzynski really thinks that. The reason oncologists don't respect Burzynski is because of how he hasn't show that his treatments work better than conventional treatments—or even that they work at all—and because of the way he abuses patients by charging them huge sums of money to participate in a clinical trial. Those are the reasons legitimate oncologists, at least those familiar with Burzynski, look askance at him. How could they do otherwise? The ones who don't take him seriously are the ones who know him best.

Indeed, one could argue that that's why the FDA and the NCI couldn't work with him. They didn't know him when they agreed to work with him in the 1990s, but as they worked with him over the course of a few years they learned his true nature, leading to an inevitable schism, which taught the NCI a lesson about the consequences of dealing with pseudoscientists. Now here's where we see the sheer arrogance, the sheer ignorance of theman:

Dr Burzynski: I published the review article in a peer-reviewed journal almost 20 years ago on the principles of personalized gene-targeted therapy. But it was not understood yet at that time that cancer is a disease of the genes. The cancers have names like breast cancer or lung cancer but what is really causing cancer is abnormality in our genes. Now everybody knows about it, but 20 years ago, very few people realized it. The right way to treat cancer is to treat the genes that are causing the cancer. Do not treat just the name of cancer. Every case is somewhat different; that’s why we need to have a personalized approach. We need to identify changes in the genes and treat the genes which are “sick.” If we are successful, then we can have very good results. It’s not so difficult to understand.

When antibiotics were introduced for the first time, they were used for the treatment of infections such as pneumonia or kidney infections or whatever. But after a number of years, the doctors realized that what they need to do is treat microorganisms which are causing the infection rather than the name of infection. Do not treat just pneumonia by the same antibiotics, but identify the germs which cause pneumonia and treat the germs. And then we can have success.

Now the same principles are being applied to the treatment of cancer. We identify the genes which are causing the problem and treat the genes. It may happen that the same genes may cause breast cancer or stomach cancer, and then we would use the same medication for one patient’s breast cancer as well as another’s stomach cancer. Certainly, 20 years ago, this was heresy. And frankly speaking, very, very few medications could work on genes at that time.

I had to choke back a rising bile in the back of my throat as I read this. I mean, seriously, such a combination of arrogance (Burzynski apparently thinking that he really was the first person to think of the idea of personalized therapy and targeting genes for cancer) and ignorance of the entire field of cancer genetics and genomics is breathtaking! Let's put it this way. I was in graduate school 20 years ago, and was taught back then that cancer was primarily a genetic disease.. There's a term called "oncogene," which describes genes that, when either mutated or too much is made, can result in cancer. When do you think this term was first coined? Robert Huebner and George Todaro first coined it in 1969, and the first oncogene, src, was described in 1970, twenty years before Burzynski claims to have understood that cancer is a genetic disease. Has Burzynski ever heard of the term "tumor suppressor gene"? Tumor suppressors are genes that normally put the break on cell growth or other phenotypic changes necessary for cancer. When tumor suppressor function is lacking, cells can become cancerous. The first tumor suppressor gene, the retinoblastoma gene, was characterized in 1986, at least six years before Burzynski's apparent "revelation" that cancer is a "genetic disease." As usual, science was way ahead of Burzynski. In fact, the genetic basis of cancer was suspected at least as far back as 1902, when German zoologist Theodor Boveri proposed the existence of cell cycle check points, tumour suppressor genes and oncogenes. Boveri even speculated that cancers might be caused or promoted by radiation, physical or chemical insults or by pathogenic microorganisms! That's 90—count 'em—90 years before the time when Burzynski claims that it was "not understood yet at that time that cancer is a disease of the genes."

Curious as to just what the heck Burzynski was talking about here, I searched PubMed for this alleged review article. I couldn't find it on PubMed. His only publications from the 1990s had nothing to do with cancer as a "genetic disease" or "personalized gene-targeted cancer therapy" and everything to do with antineoplastons. Perhaps Burzynski proposed this "revolutionary" new idea in a peer-reviewed article that's not indexed in PubMed, but if he did I couldn't find it using Google and Google Scholar. (In fact when I entered "Burznski" and "personalized gene therapy" into Google Scholar, I got the article containing the transcript of Burzynski's interview that I'm discussing at the top of the hit list!) The earliest publication by Burzynski that I could find that dealt with genetics at all was one from 2003 entitled, Aging: gene silencing or gene activation?, published in 2003 in—surprise! surprise!—that rag of a vanity journal, Medical Hypotheses.

I will give Burzynski credit for inadvertently making an analogy that has a grain of truth, but even in making that analogy he mangles history. Yes, antibiotics were used to treat specific infections, but that was because it was known which bugs antibiotics killed and which bugs tended to cause which infections. So back in the early days of antibiotics, treatment tended to be more empiric because it wasn't always possible to culture the causative microorganisms. That doesn't mean that antibiotics were being used to treat "pnemonia" or "kidney infections" without little respect to the causative organisms. After all antibiotics are defined as antibiotics on the basis of their ability to kill or inhibit the growth of microorganisms! One could draw an analogy in that we now target various genetic abnormalities in cancer much more precisely than ever, in sort of the same way that antibiotics today can be much more specifically targeted to specific organisms causing specific infections than we used to do. It is also true that our considerations of subtypes of cancer are, thanks to the genomics revolution, becoming less organ-specific (i.e., based on what organ the cancer originates in) and more gene signature-specific, but it's a slow process, and the empirical knowledge of how to treat different cancers from different organs is still very useful. We haven't yet developed an organ-independent classification of cancers that is clinically useful, although it is possible that we might succeed in doing so in the next ten or twenty years. If we do, you can be certain that Stanislaw Burzynski will have had nothing to do with it and nothing to do to developing real "personalized gene-targeted cancer therapy."

I could go on and on, picking apart virtually every paragraph of this interview. They're all chock full of howlers like the passage above. But it's getting late, and even Orac needs down time; so I'll look at one last howler. Maybe I'll come back to this article sometime when I'm bored. In the meantime, consider this statement by Burzynski:

The first medication which worked on genes was Herceptin for the treatment of breast cancer. Even today, oncologists will attack you if you try to use Herceptin for something else. But suddenly a year ago, Herceptin was approved for the treatment of stomach cancer. If the patient has abnormality of the gene on which Herceptin works, it can work very well. The crowd of oncologists learns the medicine by heart without understanding of what’s going on. However, they have started to realize that there is a need to identify what is causing cancer in every patient who is coming for treatment and to use the right combination of medications.

Unfortunately, we have a totalitarian approach toward treatment: Everybody should receive the same regimen for the same name of cancer. This is foolish. It contributes to billions of dollars in losses because typically the medications—single medications— work for less than 10% of patients. If you identify which patients will benefit from a particular medication, you can have good results and you can save a lot of money. But unfortunately, this approach still persists. I have been attacked by the Texas Medical Board for going overboard and using a logical, scientific approach toward treatment of the genes.

First off, Herceptin does not exactly "work on genes," and no oncologist would characterize it as doing so. Herceptin is a humanized mouse monoclonal antibody that targets the HER2 protein, which is the product of the HER2 oncogene, which is overexpressed (i.e., too much of it is made) in some breast cancers. It's been enormously successful in that HER2(+) breast cancer used to be considered a very bad actor. It still is a bad actor, but we have a targeted therapy that makes it less so. In any case, if Herceptin is a drug Burzynski defines as "targeting genes," then he's clearly wrong that it's the first one. It was not. Arguably, Tamoxifen was. Tamoxifen, after all, specifically targeted a gene product (the estrogen receptor) in the same way that Herceptin targets HER2, and Tamoxifen has been around since the 1970s. Be that as it may, it is not "heresy" to use Herceptin to treat other forms of cancer besides breast. It is true that Herceptin was first used in breast cancer, but that is because HER2 is frequently overexpressed in breast cancer. As soon as it was discovered that HER2 was overexpressed in other cancers, oncologists and scientists proposed using it for those other cancers. We cancer researchers are very happy to apply new drugs to new cancers if we think they might be useful, but unlike Burzynski we insist on testing them in clinical trials first, to make sure they work.

As for Burzynski's lament that we have a "totalitarian" approach towards treatment, all I can say is that it might seem that way to someone who has a "make it up as you go along" approach, like Burzynski. It's just another example of cranks pulling out the "fascism" gambit when they are told by scientists they are cranks. For instance, the TMB didn't go after Burzynski simply for off-label prescribing where there is a legitimate scientific argument. It went after Burzynski for mixing and matching targeted therapies willy-nilly in a reckless manner. Truly, it was personalized targeted gene therapy for dummies done by dummies.

In the end, it's hard not to be shocked by the combination of self-absorption, arrogance, and downright scientific ignorance that the "hero" of "alternative" cancer therapy demonstrates. I suppose I shouldn't be, but I am. And it takes a lot to shock me these days.

oracknows Tue, 12/04/2012 - 21:46

Tags

Quackery

antineoplastons

Categories