I hate to end the week on a down note, but sometimes it's necessary. It's been a while since I've written about Stanislaw Burzynski. I'm sure you recall Burzynski. He's a hero in the alternative medicine world, having been cast as a martyr to The Man (i.e., the FDA and Big Pharma) because of his selling of a dubious cancer cure that he calls antineoplastons. Although he's been selling his questionable cancer treatments for thirty years now, he's recently been in the news a lot lately thanks to a credulous paean to his activities in the form of a movie that was released in 2010 called, unimaginatively enough, Burzynski: The Movie. As I pointed out late last year in my review of the movie, it is indeed a credulous paean that portrays Burzynski as a Brave Maverick Doctor battling The Man, all in order to bring The One True Cure for Cancer to the people. He was also featured in Suzanne Somers' encyclopedia of cancer quackery Knockout, which could best be viewed as advertising for every major cancer quack you can think of. Burzynski is also known for siccing his attack poodle on skeptical bloggers who have the temerity to criticize Burzynski for peddling an unproven cancer cure, charging his patients for taking part in his clinical trials, and his "personalized medicine for dummies" approach to targeted therapy.
All the while, patient after desperate cancer patient is drawn like flies to the proverbial lantern to Burzynski's clinic in Houston, lured by the promise of a cure for the incurable, willing to pay hundreds of thousands of dollars to realize that promise, no matter how many fundraisers are required or how many journalists throw away basic journalistic skepticism to pen what are in essence commercials for Burzynski's clinic. Meanwhile, his patients drop like flies. I realize that the vast majority of these patients would have died anyway. That Burzynski failed to cure them is not the issue. The issue is how he sells a useless therapy, how he represents his therapy as "natural" but uses lots of chemotherapy anyway, how he uses extremely expensive cocktails of targeted therapies with unknown toxicities, and how he charges patients hundreds of thousands of dollars for taking part in his clinical trials, which have yet to validate his antineoplastons as efficacious and safe after 20 years of trying. In other words, Burzynski charges huge sums of money for false hope.
And now another young cancer patient has paid the price. Let's jump back in time a couple of months:
The Mackey family in Danvers is in the midst of a battle that no family ever wants to find themselves in — a fight against a relentless brain tumor in their oldest daughter, Rachael Mackey, 28.
A Danvers native and graduate of Danvers High School, Class of 2002, Rachael, was just beginning to create her life, graduating from Bryant College and working as a model as she traveled the world and developed her own small business, when she began to experience intense headaches.
Doctors trouble shooted the headaches treating Mackey for potential migraines and even prescribing eye glasses to see if that would help, but the headaches would not dissipate.
“It was like having a four-month headache,” Rachael said. “There was so much pressure in my head.”
Her mother Kathy Mackey said that when Rachael was slated to travel to Indonesia, her family encouraged her to have an MRI before she left.
The news wasn't good. Mackey had a 7 cm grade II oligoastrocytoma. In 2010 she underwent a craniotomy to remove the tumor. Unfortunately, as these tumors are wont to do, her cancer recurred in December 2011. Mackey underwent a second surgery in June, but apparently her surgeons were unable to resect the tumor. Consequently, it was recommended that she undergo chemotherapy and radiation, and it was estimated that there was only about a 3% chance that the tumor would responde significantly to the regimen.
Now put yourself in Mackey's place. You're 28. You're a beautiful young woman. You're faced with a horrific, almost certainly fatal diagnosis. Your life is likely to be measured in months—possibly even weeks—rather than the decades more 28-year-olds expect to live. No career. No marriage. No children. No dreams realized. I get it, at least as much as anyone who hasn't faced such a diagnosis can get it. You want to live. You're willing to do almost anything to live. Heck, I'm well into my middle age now, and I would still want to live. I'd probably want to live even if I were 80, although perhaps not as strongly anymore, having had a good life.
Enter Burzynski and his antineoplastons:
During their research, they discovered an alternative cancer therapy in Houston, Texas, that was reported to have some success in treating brain tumors. The Burzynski clinic, run by Stanislaw R. Burzynski, MD, Ph.D, has been a source of controversy within the medical community. Many doctors deem the gene targeted therapies as misguided, yet many patients claim it saved their lives when other traditional treatments could not.
After enduring two major brain surgeries and given the low success rates and horrible side effects that radiation and chemotherapy would have, Mackey wants to try the program at Burzynski Clinic.
"I like that they treat the cause and stimulation of your cancer — not just the symptoms,” Mackey said who at the moment is asymptomatic. “Because without treating the cause, the tumor will just continue to come back. Our goal is to defeat the tumor and not have to worry about it for the rest of my life.”
The clinic has currently been approved for Phase III Clinical Trial for Antineoplastons treatment and Mackey’s brain tumor met the criteria to be accepted as a patient in the trial.
There's that damned phase III clinical trial again! I would almost kill to find out how that particular trial was ever approved. (That's metaphorical, people. I wouldn't actually kill anyone, but leave it to a Burzynski fan to try to quote mine me.) The reason, of course, is that Burzynski wields that phase III trial like a club against his critics, with its implication that because the FDA approved his trial there must be something to it. Personally, having pored over Burzynski's publications, I just don't see it, which is why I'd love to see the preliminary data and rationale upon which Burzynski got this trial approved. I also can't help but note that if you go to ClinicalTrials.gov and look up Burzynski's phase III trial, you'll see that it was approved in December 2010 but is still, nearly two years later, not recruiting any patients. This is quite unusual. Most investigators can't wait to accrue patients to their clinical trials, and most institutional review boards (IRBs) and clinical trial offices get very antsy if a trial is open for a year and isn't reaching its accrual targets, much less not accruing even one patient. I've seen it many times at the two cancer centers where I've worked. I suppose that's the advantage of owning the "research institute" and the IRB. I'm sure no one's giving Burzynski any crap about not having opened his phase III trial yet other than cranky skeptical bloggers like myself, and, with his money flow continuing apace, Burzynski can afford to ignore us.
Be that as it may, I also hate how Burzynski claims to treat the cause of cancer more than oncologists. Let's just put it this way. In the unlikely event that antineoplastons actually demonstrated significant antitumor activity, they'd be chemotherapy, every bit as much as doxorubicin, taxotere, or cyclophosphamide. To label them as somehow "natural" and "nontoxic" is nonsense, a lie. It's also about as unethical as one can imagine to do what Burzynski does, which in this case was to charge Mackey $30,000 for her initial treatment and then $7,000 a month after that, with an estimated total cost of $100,000.
As so many other Burzynski patients have done, Mackey and her family took to fundraising, holding a yoga fundraiser and a golf fundraiser, among other fundraisers, and, of course, taking to the web and Twitter. Knowing that Mackey died on October 28, it's truly saddening to read her Twitter feed and blog. While I encourage you to read Mackey's Twitter feed and her blog, I would strongly discourage any of you from commenting there with anything other than messages of sympathy and support. Remember, the family has just lost a daughter at far too young an age. There is nothing to be gained from recriminations and criticisms on her blogs. I trust that most of you won't even think about doing that once you see her story in more depth.
Bob Blaskiewicz over at Skeptical Humanities has started a Storify page that chronicles Rachael Mackey's experiences with the Burzynski Clinic. It begins with a CT scan that showed that Mackey's tumor had started to grow again and continues with her video blogs:
Here she is after the antineoplaston therapy has started. Note that it's dated a mere eight days before her death:
About a week after starting antineoplaston therapy), about a day before she posted the above video, Mackey Tweeted:
Unfortunately, she was mistaken about the significance of her symptoms. Eight days later, Rachael Mackey died. We don't know the details. We don't need to know. She had a terminal cancer, and most likely it was simply progression, although one can't rule out the possibility that the antineoplastons hastened her death. They are not nearly as nontoxic as Burzynski claims, as I've documented multiple times before. We can never know, however. Chances are, this unfortunate young woman simply died of her disease and the antineoplastons did nothing to slow its progression.
Burzynski fans frequently attack a straw man in which skeptics are said to blame Burzynski for the deaths of patients like Rachael Mackey. They like to present Burzynski as taking on hopeless cases, all in the name of advancing cancer care by "personalizing" it (although, one should note, that "personalization" and "targeting" almost always includes antineoplastons in Burzynski's hands, which doesn't represent much in the way of "personalization" to me). He's presented as the Brave Maverick Doctor willing to take on The Establishment because, well, he just cares so deeply about his patients, and, given the really sick patients who flock to his clinic, Burzynski can't really be blamed if nearly all of them die, can he? It's not fair, right? After all, nearly all of them would have died anyway with conventional therapy, right?
Not exactly.
When it comes to caring for patients with advanced cancers, there's more to consider than whether the patient lives or dies or how long she lives. In the case of terminally ill patients who can't be saved, there are two goals that are foremost. First, we want to prolong life as much as we can, as long as the side effects are not prohibitive. Then, if it's not possible to prolong life (or not possible to do so without unacceptable side effects), there's palliation, which is arguably the most important of all. It's also something that "conventional medicine" is becoming better and better at. There's the chance to die at home with dignity. There's not being forced to exhaust all of one's resources (and often much of one's family's resources) and having to go to great lengths in the final months or even weeks of one's life to raise tens or hundreds of thousands of dollars to pay for Burzynski's treatments before death arrives. There's providing a realistic picture of what the patient is likely to expect, so that she can put her affairs in order before she is unable to do so and make informed decisions about her health care. As difficult as it is, that's real empowerment, not the false empowerment given when someone like Burzynski tells a patient that he can possibly save her where conventional medicine cannot. These are not insignificant things to cancer patients and their families. They are also exactly the things that Burzynski robs his patients of.
- Log in to post comments
While its been almost 30 years (so my memory could be failing me) I seem to recall one of my patients who returned from this killer's practice came back with some sores at sites of injection, and so we analyzed and found the vials contaminated with some strange fungi also found in the sores. Good thing he wasn't doing epidural injections.
*anger*
I second Ren's comment. It makes me feel sick that people are still being conned by this amoral creep - and that his defenders and enablers are still making excuses for him.
Has anyone filed any FOIA requests with FDA for any of their approvals, in particular their okay for him to charge subjects to participate in the trials?
Yes. The ones I've become aware of have all failed to get any useful information. The FDA is harder to get information from because a lot of the information used to get clinical trials approved is proprietary and, if revealed, might hurt companies doing trials.
I really hate the quacks who say "what do you have to lose?" to terminal patients. They have more to lose than they realize.
They can lose their last chance at quality time with their family. They can lose their chance to say their goodbyes. They can lose their chance to make peace with themselves. They can lose the inheritance they were going to pass on to their loved ones. They can lose the comfort of palliative care and end up facing an agonizing end.
Everyone is going to die sooner or later, and when medicine loses that battle, doctors should do what they can to help the patient meet death prepared and with dignity.
As an avid Scenario Paintballer, I've been around and made friends in this fairly tight-knit community (scenario teams tend to be more like social groups & we all get to know each other over the years).
Last year, we went to a game in Pennsylvania & one of the teams was holding an auction to raise money for the Cancer Treatment of one of their members. I was a little confused, because the team was from Canada & treatments are covered under Canada's National Health System.
It turns out, this individual had gone through conventional treatments, but the Cancer continued to progress & he was given a fairly bleak diagnosis. So, his family got him into a "homeopathic" Cancer treatment program & needed to raise tens of thousands of dollars to pay for the "magic water" and special diet that was supposed to "cure" his Cancer.
I was horrified that this family, and by extension, his team, were going to drain their resources on such crank medicine. I really wanted to say something, but I know if those situations that nothing you can say is going to help....This man died about four months later - having suffered horrible end-of-life symptoms of his Cancer, and his family was forced to declare bankruptcy, because the treatment center came after them for unpaid bills.
I hate these cranks....I really, really do. Because they offer hope....false hope.
It is really hard, isn't it. I mean, if it would be me... I think I would refuse therapy with only a 3% of possibility to live and go for palliative.
But if it is a loved one, what can you do? You can just... stay with them, even if they go to quacks.
How can you stop them without looking like somebody who doesn't care?
I have tried to get info on the approval process through FOIA, and as Orac says, you get slapped down because of proprietary information. I've tried getting ProPublica interested, b/c of their experience with FOIA and interests. No reply. Perhaps if others suggested investigations to ProPublica get involved, they might reconsider?
If you read the article in the local newspaper, about her diagnosis, her "lifestyle" changes and her prognosis, you will see that she had already "researched" treatments for cancer.
http://www.wickedlocal.com/danvers/news/x1101047227/Grace-under-pressur…
" Searching out of the box
With this stunning news, Mackey began to do research and educate herself on alternative treatments with the help of her friends, family and boyfriend.
Mackey had already adopted a healthy lifestyle, becoming a vegan and removing all sugar, alcohol and any toxins from her diet that have been shown to accelerate tumor growth.
The kitchen at her father’s Mohawk Street house, where Rachael is recuperating, is a center of activity where they create kale and spinach power smoothies daily among other nutritious, power-packed meals. Mackey also practices yoga and stays strong through exercise to help her body heal itself. These complimentary therapies are something Mackey believes strongly in."
“After my first surgery, it took me a month to recover,” Mackey said. “But after I’d begun my healthy regimen, it only took my body two weeks to recover.”
Unfortunately, she was "primed" for the next step...Burzynski's *treatment*.
@T.,
You (me, any of us) perhaps can't stop them, but we can tell them the truth.
Just some days ago I read some new about a 2 year old child, whose parents were collecting money for some treatment in the US. They needed 100,000 euros, which made me quite suspicious. I though of mr. Burzynski, but it appeared to be something else, which is supposed to improve ones chances with 20%. It's a high-risk neuroblastoma. The threatment seems to be legal. Still one might wonder if it's worth it.
http://www.megameike.nl/en/
@ Renate: Your link states that Meike will be coming to Philadelphia for treatment of her Stage IV neuroblastoma.
One can only hope that she will be treated at CHOP (Children's Hospital of Philadelphia)..
http://www.chop.edu/service/oncology/cancers-explained/neuroblastoma-di…
It sounds like they're going to CHOP. I don't know that the treatment would have been offered to them if it plainly represented false hope.
"It sound like they are going to CHOP...", and that they are only fundraising for travel expenses and to pay for their fixed expenses at home, in the Netherlands:
"On the 10th of August they started treatment with intensive chemotherapy, consisting out of seven rounds. Once Meike will finish these treatment series she will be able to go to Philadelphia, USA for immunotherapy. This additional treatment will increase her chances of survival with another 20%.
In order to make this trip possible, financial recourses are needed to cover the costs of travelling and staying in America and to cover the fixed costs back in Holland.
Thanks to the help of many of our friends and family we have raised this foundation. Together we want to offer all the support that Meike and her parents will need while they go through these intense and difficult times.With your support we can aid them financially when they will travel to America for treatment."
One would hope they might find a spot in one of the Ronald McDonald Houses in the area, although I'm sure the hospital would have already told them about this resource.
I don't understand why the family was told Rachael would qualify for the mythical, mystical Phase III trial. From what I remember it's restricted to children under 18 years of age. Rachael was in her late 20s.
I wonder if law enforcement could go after him for Bait and switch advertising. The medical board apparently has nerf for teeth in Texas. He is clearly telling people they will be enrolled in a clinical trial. At the last minute that option is off the table, for any number of plausible sounding reasons, but the good Dr. would of course be happy to treat them off of protocol, for a fee.
How does that old superstition go..is it that GOOD things ( or bad) come in threes?...
More news from Texas:
( via Academic Integrity Fund facebook/ also see Bolen link, @ AoA today)-
On Saturday, Drs ( Mr & Ms) Wakefield will premier a radio show on Austin's People's Pharmacy KLGO Good News Health ( also available as an i-tunes podcast @ the above fb). Weekly woo with Andy and Carmel.
According to Gary Null, Austin is THE place to relocate for health conscious, freedom-seeking, progressive- libertarians like himself. Think about it- Adams, the Wakefields, Polly Tommey- need I say more? ( via Progressive Radio Network's, noontime woo-test, today.
Smart people will leave the cities and the coast and head for AUSTIN.
I swear, I only report what I hear/ read.
I don't understand how such a scheister is still 'practicing' and peddling his BS. It's sickening, how he's taking advantage of terminally ill people and bilking them of their money.
@T You could just stay with the loved one, but you could also ask them to stipulate to their executor that you have permission to obtain complete copies of their medical records. And, explain that you love them and will support them through whatever decision they make but you will also sue the pants off of anyone who robs them of one day of life.
Speaking of which, I think I'll go put that in my will.
what surprises me is that we've had no visit from an SB (did I get his initials in the correct order? I get confused) lackey telling us we're closed minded.
And he knows where we live.
In what delusional universe do oncologists "just treat the symptoms"?
I don’t understand why the family was told Rachael would qualify for the mythical, mystical Phase III trial.
Easy. Someone lied to them.
@ MMM:
Pablo:
in the same delusional universe where autism is "iatrogenic brain damage, central nervous system damage and autoimmune compromise" ( Lisa Goes a/k/a the Rev @ TMR, today).
Actually Peebs, I'm rather stunned at the near total lack of trolls since the migration to WordPress. Are they all in a dungeon somewhere beneath Glaxxon PharmaCOM's Terrabase?
MESSAGE BEGINS-----------------
MESSAGE BEGINS--------------
Shills and Minions,
A little Troll Helper™ and they're delicious en croute. Burzynski is so evil I could almost respect him . . . I said almost.
Lord Draconis Zeneca VH7ihL
Glaxxon PharmaCOM Terrabas DIA
0001010111101010001
I suppose she qualified for the treatment, because she was able to raise the money. Bet if you can't bring in the bucks, you have no chance of getting treatments.
This really makes me sick.
The skeptic community is a really brilliant group of people, we have make sure that his Wikipedia page reflects the criticism. We have made sure that when people go to his website if they have a WOT plug-in they are getting a red warning label.
Bob and I both wrote letters to the newspaper, criticizing the reporter that gave the positive recommendation from Mackey.
We were trying to use crowd-sourcing to vote down his movie on Amazon, Netflix and wherever else the movie is being promoted.
What else can we do to stop this man? Surely the Texas medical board or something?
Ideas people, no sense bitching, think of how to solve this problem.
Damn, this is depressing. Poor Rachael and her poor family.
I came so close to taking the 'alternative' route when I was diagnosed with cancer (obviously I didn't, as I'm still here 9 years later), and although my cancer was stage 3 and so I wasn't in the desperate situation Rachael was in I can understand that desperation and how it drove her and her family to seek anything that could offer hope of a cure.
And that desperation was exploited to the full.
I think I may have been the first person Burzynski's lackey Marc Stephens threatened with legal action, after I posted an (admittedly not very well-informed - I know better now) answer to a question about Burzynski on Yahoo Answers.
At the time I thought, and said, that Burzynski was well-intentioned but wrong. When forced to defend my statement that his methods had never been proven to cure anyone, just a little research meant I very soon revised that opinion.
I'm so angry and so sad to read of Rachael's death. As Bronze Dog points out, those quacks have robbed her and her family of so much.
What happened to the law suit and/or FDA investigation?
Translation: it's doctors against patients folks, and you better suit up for the fight if you want help.
Oh for f's sake... that one really is a whack-a-mole idea isn't it?
How can you accept patients for a Phase III trial but not be recruiting any patients? Is that just a matter of not updating the site often enough, or not filing paperwork?
... And most importantly:
My condolences to her family and friends.
@T
The Skeptoid podcast has an excellent episode on various ways of approaching people. One of his suggestions is to gently pull aside the person and say "I understand you want to go this way, and because I care about you I want you to have all the facts before you decide and I'll support whatever decision you go with" and then hand them as much literature as possible. It of course depends on your relationship with the other person and how sensitive they are. Anyway, it's a good listen for other woo situations too.
@Lilady
Not at all shocking given her use of a standard trope. (See my comment above)
Thanks for the reminder. The latest development was on October 30, in the form of Order 16. I'm not up to reading it at the moment, but if you go to soah.state.tx.us and search for docket 503-11-1669 (use "guest account"), you'll find it.
Thanks Narad.
Sadly there tech people are stupid. Putting in the URL minus the www causes the site not to load. (Or is that part of them trying to get back online?)
IANAL: but taking a look at the case, it appears that on 30th Oct an order for "GRANTING AND DENYING IN PART STAFF'S MOTION FOR RECONSIDERATION OF ORDER NO. 12" was added. It looks like the judges are preventing Burzyinski from using confidential patient info publicly (they've sealed it); and also saying that he is not responsible for other doctors' actions.
Basically it's just preliminary stuff and this month's deadline of the 16th will be about more prelim. of more procedures. From the look of the docket list, it will be a long, long time until something of value happens.
I think. I find it hard to read legalese, so someone please tell me if I'm wrong.
That sounds about right. As I recall (and you might want to read Order 12), the Board may have overreached, and so there's all this procedural screwing around. The important part is that the complaint is still alive; although he may have shielded himself in some respect from the actions of his proxies, the "clinical trial" game still seems likely to fall apart if his license disappears.
Oh, man, it's starting to come back. This is all from memory, but I think Burzynski wanted to eliminate entirely the PHI (which I'm using as shorthand) that is now subject to redaction, and which the Board relied in part upon.
Thanks Narad. I really wasn't sure what they were saying given it was all "past decision this, and past decision that".
Completely off topic, but has anyone here posted a link to Confronting junk science?
You sceptics seem to forget that since good old Nixon declared war on the big C in 1971, the success rate of cut/burn/poison for the major cancer killers has been nothing short of appalling. Despite (or because of) trillions of dollars going to (mainly) drug research, the war on cancer has been lost & the public has been the big loser.
I do not give one cent to any cancer research fund & never will, while they continue to chase the tooth fairy. The cure is always just around the corner the gullible public is forever told, & the major cancers still cut a swathe through the community.
When the cancer establishments get serious, there will be great inroads made in this largely life-style disease, but this will never happen while BigPharma rules modmed, & oncologists make money every time they put their patients on chemo.
You guys talk about one Dr & his failures, how about waking out of your hallucinations & admitting the real picture.
Bit premature about the trolls. Rocketman has just turned up.
Back when I was a biochemistry undergraduate doing epidemiology, I remember a lecture that went: if you live long enough you die of cancer. The trick is not to die of cancer until you have lived long enough. Sadly, some people don’t get the chance and it would be really nice if they were allowed to die with dignity rather than being fleeced by charlatans.
Wow, it took 37 comments to get a "BiG pHARMa is lying to y0u!!!!11eleventy" kook.
Rocketman - with the exception of "modmed" (ooh, catchy!) you're just repeating the same tired tropes that every TWoo Believer does.
It's boring, Think of a novel arguments.
WRT Burzynski, has anyone else seen www.thetwentyfirstfloor.com/?p=4914 this:
As Narad spotted a while ago, Rocketman appears to be yet another of Dr. Greg's sockpuppets along with Emily, Pegasus and.. I forget the last one. It's the same prescientific, deluded and unsubstantiated BS that he keeps repeating without a shred of evidence to support it.
the success rate of cut/burn/poison for the major cancer killers has been nothing short of appalling.
There is still no reliable cure for those specific cancers for which no reliable cure has been found.
It's brilliant insights like Rocketman's that bring me back to RI.
@Elburto
Thanks for that link. Personally I'm more interested in the follow up to Dr B's financial management of his fees. Er, trial payments. Er, whatever they are.
I don't read 21st Floor regularly, so I'll have to remember to go back when I have more time.
... Also, nice to see Pegamily is back. I thought for a second there Marg was here under another name.
Oh, Dr Greg again?
So sad, such a lack of dignity and self-respect.
Perhaps our blinking light filled host could switch to a soothing, pastel palette, in order to calm our angry, persistent "friend".
Perhaps Lord Draconis could take him to the fourth moon of Kh'traal? Apparently they have a fantastic health spa there, where clients can bathe in the warm cloacal exudate of the Lunar Shoteh, while listening to Vogon poetry.
Dr Greg could even take a load off by engaging in some rough'n'tumble with the latest batch of hatchlings in the nursery wing of the Terrabase. That would relieve anyone of their worries. And maybe their spine...
Perhaps Orac could confirm the sick poppet's sock puppetry, by checking Rocketman's IP address against Pegamily's. Once he emerges from his weekly maintenance and defragging downtime of course. I suppose it's possible there's another person obsessed with vaccines, HRT, nutrition and fasting, who claims to have neighbors with permanently cold and flu-infested kids, and who was using British/Aussie spelling until I pointed it out, which seems a little unlikely.
The IP addresses for Rocketman and Pegamily are not the same, but the locations they map back to are very close together. That's enough for me to conclude that they're probably the same and put Rocketman on notice (and his/her IP address into the permanent moderation filter).
The sockpuppetry problem has gotten much better since ScienceBlogs switched to WordPress because I could turn on the setting that requires that all new commenters to have their first comment moderated before they can comment freely. Some trolls who use sock puppets have figured out that if their first comment is semi reasonable that I'll probably approve it. I guess I'll have to be a bit more careful and search the IP addresses of every "new" commenter. So I'm going to make it even harder for sockpuppets to continue.
Nice detective work.
Speaking of burzynski, I went to check-up on little Luna Petagine. Sadly, she died in August.
Seeing her on the BBC documentary series about Great Ormond Street Hospital pre-Burzynski, and the hope ignited in her family, contrasted with the horrific spectacle of her post-Burzynski, was like a kick in the gut. Her oncologist looked devastated.
Poor little kid
I thought that our most esteemed and gracious host might appreciate a quote from Dan Olmsted from today's AoA:
" And I can't think of any more clear-cut evidence of the moral black hole of our public health authorities have fallen into. Carl Sagan used to look into deep space and see billions and billions of stars. I look at the future and see trillions and trillions of mercury atoms".
( similarly @ TMR:
a guest host discusses isopathy which " removes the ill effects of heavy metal toxicity, vaccination and allopathic drugs by means of identical, potentized and homeopathic remedies"...Including orthomolecular supplements).
CEASE therapy, please cease and desist.
And Dan, please put down the metaphor/ analogy weapon, it's not safe in your hands. And step away from the keyboard before you hurt somebody- yourself included.
My "uncle" (actually, he's a close friend of my parents but I've always treated him as a family member) is dying of colorectal cancer. He's almost 70, has had a good life, has seen his two children and five grandchildren grow up. And now he's got very good palliative care. His expectancy is probably a few months now but he's going to spend this time with his wife, children and grandchildren - and hopefully, as little pain as modern medicine can grant him.
I suspect that when looking at the future, what he actually sees is his own career trajectory.
I look at the future and see trillions and trillions of mercury atoms
About a picogram, then?
Say what you like about Olmsted, you can't fault his vision.
I think that the dynamic duo "Blaxsted", have never given up their mercury hypotheses. Meanwhile, back at AoA, CIA Parker is posting again about her child's hepatitis B-induced-encephalitis (diagnosed by Doctor CIA...the respected pediatric neurologist).
Also take a look at the multiple posts on that thread by "B"...she's always good for a couple of good (unintended) guffaws.
Oops, link to Olmsted's latest mercury post, here...
http://www.ageofautism.com/2012/11/age-of-autism-weekly-wrap-trillions-…
Actually, I look into Age of Autism and see thousands and thousands of...................
Please fill in the blank/s, I have to leave now.
"Actually, I look into Age of Autism and see thousands and thousands of……………….
Please fill in the blank/s, I have to leave now."
Hmmm, let me post of few of my observations...
I see thousands and thousands of conspiracies?
I see thousands and thousands of science illiterates?
I see thousands and thousands of whiny, nasty posts?
I think you're overcounting the audience with that one.
I see thousands and thousands of stunted, reality and science-defying shut-ins, with amoebic brains under their foil helmets.
"What else can we do to stop this man? Surely the Texas medical board or something? "
Texas is where Andrew Wakefield went, courtesy of some wealthy dupes, after he realized he could never again practice medicine in the UK. The only reason he's not still at Thoughtful House is not because of the state medical board, but because even the Texas dupes funding him realized that they'd look even stupider than they already do if they had kept Wakers around after he'd been struck off the UK's medical register and the Lancet retracted his paper.
I read this post about yet another cancer victim's family giving all their money to Dr Burypatients and immediately thought of terryg's comment on this post. (Botheration, can't link to individual comments here.)
Go and read it - even if you've already read it.
sophia8,
It's possible though a little fiddly. Go to the comment you wish to link to. Look at the source code of the comment - in Firefox you can highlight the end of the previous comment and the beginning of the one of interest, right click and select 'View Selection Source'. In other browsers you may need to be a little more creative. At the beginning of the comment source you will see something like "<div id="comment-214195" - 214195 is the comment number you are looking for, in this case it is the number of your last comment above.
Take the URL of the page and add "#comment-214195" (without the quotes) to the end of it. In this case the link you want is http://scienceblogs.com/insolence/2012/11/02/stanislaw-burzynski-fails-… which should take you to your comment above. Alternatively you can grab a link from 'Recent Insolence Returned' if you are quick enough.
Here's terryg's comment as mentioned by sophia8 and indeed well worth reading or rereading. Excuse me, I seem to have something in my eye...
Not to hijack the comments but.....another cancer quack, Robert O Young just posted on his blog an offer of ONE MILLION dollars to anyone who can give Scientific Proof of the HIV Virus and that the HIV Virus Causes AIDS.
http://articlesofhealth.blogspot.com/2012/11/a-1000000-reward-for-scien…
Burzynski is a very wealthy man. I mean the guy has 15 bathrooms! As for why the FDA appears to be bending over backwards for the guy, never forget money can make things happen or money can make things not happen.
0 W Rivercrest Dr, Houston, TX
This is the estimated value of his home. I'm sure he REALLY needs those FIFTEEN bedrooms and every one of those fourteen thousand square feet of living space!
®: $6.207 million
Sqft (land | living):
453229 land | 14,495 living
Bedrooms:
15
Bathrooms:
15
Property Taxes:
$108,266.43 (2009)
Beds: 15
Baths: 15.0
Lot: 453,229
https://maps.google.com/maps?oe=utf-8&client=firefox-a&q=20+W+Rivercres…
Dr Burypatients could put up his patients at his luxurious ranch and still rake in the filthy lucre. Unfortunately, he probably doesn't want to really see them, or acknowledge they are living, thinking human beings.
OT:
AoA headline:
Hurricane Autism Has Made Landfall in America
3 days after Superstorm Sandy made landfall, they pull out their by now familiar theme: Autism As Natural Disaster.
For the record - I loathe it. I loathe it as much as the media exploiting a natural disaster for ratings, instead of informing viewers they, "terrorize" is such a strong word, but I can't think of a better one.
Wonder if they'll use the predicted Nor'easter next week as well?
Anj: Do you have screen shots of it? That headline might go the way of the Thanksgiving photo a few years back (after all, Bloomberg came to his senses and cancelled the marathon).
I am beyond words. Do they not realize that 2.4 million customers in the NY/NJ area lost power 5 days ago, and there are still close to a million people (270,000 ConEd customers according to CNN, plus 607,000 of PSE&G’s in NJ) without power even now?
Or don't they care?
Or are they counting on the fact that their NJ area readers can't read the headline?
Dr Greg needs to learn to masturbate ..... that way Dr Greg would have something pleasing to do and could then just leave the real scientists to discuss stuff ....
I literally have something in my eye. Tears.
This needs to be re-linked to on every thread - it won't change the cranks' minds, but it certainly might help the lurkers.
@ David N. Andrews M.Ed., C.P.S.E.
David, I think he already knows how to do that but he calls it 'writing'.
Sometime, I get to despair about what I see at AoA. Especially their cause of autism posts (by Dan Olmsted) which irritate my to no end.
Alain
This should be straightforward, but he's going to have to get off his alkalinizing ass.
Reuben on The Poxes blog has been quite active, posting about Andy's latest fundraising activities and the truly tasteless articles written on AoA, since hurricane Sandy "hit".
http://thepoxesblog.blogspot.com/
Regarding the FB item and the Poxes mention, I do wonder whether these dots connect:
Joan Campbell, Spiritual Intuitive.
Now, I certainly have been know to leap to conclusions, but "The Rainbow Swirl" is so dirty-sounding that I have summarily bypassed what's left of the internal filters iin this case.
^ "known," etc.
This topic has hit home for me only last week. We got a letter in with the school fees invoice requesting donations to help send a little girl at my SD's school to this revolting human beings clinic. My partner wanted to send money. He felt if anything could help this mother and child it would be worth it. I got out the trusty iPad and we went through some of the older postings here. I just showed him this one as well.
My darling partner is still torn between giving hope to a mother whose pain he can't imagine and not giving a cent to such cruel and dishonest man. My partner's internal struggle is exactly why these clinics survive.
In any event, it is the Joan Campbell of the "International Medical Council on Vaccination," which was perhaps a tactical error to reveal.
@ Narad:
You neglected to mention "the Golden Seed".
On a more serious note:
Zosia Kmietowicz ( BMJ; 1 Nov 2012) discusses the journal's new policy to only publish studies that agree to provide full access to detailed patient level data- when requested- for clinical trials of drugs and devices starting in January 2013.
The editor appears to have strong views on the subject.
Thanks Denice Walter...here's some more background on that announcement from Fiona Godlee at the BMJ:
http://www.bmj.com/content/345/bmj.e7304
"Robert O Young just posted on his blog an offer of ONE MILLION dollars to anyone who can give Scientific Proof of the HIV Virus and that the HIV Virus Causes AIDS. "
I s'pose it depends on who is to be the judge of "proof". Who chooses the judge chooses the verdict, given enough latitude in the choice of judge.
But how about the following:
0. Place $ in escrow.
i. SEM photo of the virus. That is enough proof that it exists, proof which anyone can grasp.
2. Innoculate Young with a sufficiently large dose that it would be certain to cause ... nothing if Young is correct, or AIDS if he's lying. Make the dose large enough that effects, if any, are not long delayed. Send his photo around to every AIDS clinic and prohibit treatment using those demonic Big Pharma drugs.... they're useless because "HIV doesn't cause AIDS, it's teh poisoning drugs."
This is ethical because is Young's special universe, HIV is harmless, not to mention non-existent. Plus it will probably save an innocent somewhere, such as the next Maggiore's kid. I see a few practical sticking points if this is conducted within the USA, but it's a big world and there's sure to be an appropriate venue somewhere.
@ Spectator:
Isn't it amazing how this folklore- that hiv has no relationship to the development of aids- persists?
I think that your scenario might not be considered ethical so it might not be approved..
I ask though, how ethical is it to talk hiv+ people out of their meds? ( see Mesdames Christine, Kim, Karri and the gentlemen, all deceased).
But we can dream...
@Denice
Sadly, it's not amazing. Statements not grounded in fact can be more persistent than those which are. If it's based on motive (one has a cult/product/drive for personal fame to promote) and it's based on group affiliation, "us" vs "them", religion, or such then dull facts carry no almost no weight among believers.
One can influence people who want information based on reality. Many prefer faith or group loyalty, dressed up one way or another.
We also have to keep in mind that many questions regarding health haven't been scientifically tested; either it's not worth the cost, or the issue is too messy to reasonable test. Then there's the issue of motivated trials, where x new drug is a miracle elixir, until around when its patent expires, when it's found that the trials were carefully structured so as not to learn too many inconvenient facts. This leads people to look at all pharma products as suspect, rather than to take the lesson more narrowly.
There's no way to edit after one posts, is there?
@Denice
AFAIK he *could* perform an experiment upon himself as described.
The catch is, he most likely wouldn't agree to it - because he knows he's full of bullpocky.
Quokka - welcome! Sorry you had to find this because of a sick child. Doctor Burykidski will do nothing but steal their money, their hope, and the remaining time they have with their child.
I mentioned Luna Petagine upthread. She was on a documentary about our top children's hospital and their oncology dept.
She was ill but functional before they left for Texas, when they came back? I cannot even describe it without breaking down. Her consultant said that her sodium level was so high that she should have died. It was tragic.
Denice- Remember the whole XMRV debacle? They're now claiming to have "HIV negative AIDS".
As someone whose friend very nearly died from end-stage HIV, as in, last rites+4 months in hospital recovering, it makes me foam at the mouth. Not to mention that they still think that XMRV is real, and not lab contamination.
Really, it's incongruously like something out of The Sensuous Woman. But sadly, it's not the right Joan Campbell, who is merely the whacker of Brian Deer with a placard, as Jenny Allen helpfully informs:
Oh, well.
That's what the L-rd created the preview button for. Oh, wait.
@ Narad:
"Really, it’s incongruously like something out of The Sensuous Woman. But sadly, it’s not the right Joan Campbell, who is merely the whacker of Brian Deer with a placard, as Jenny Allen helpfully informs"
You should have gone to the LaCrosse Tribune blogs about Andy's "non-debate", where Joan Campbell a.k.a. "redrockcloud" posted, Narad. Joan Campbell was not overjoyed when I posted back at her.
https://sites.google.com/site/redrockcloud/about-me
How about this...from Ginger Taylor?
http://adventuresinautism.blogspot.com/2011/06/joan-campbell-has-gather…
Just follow Ginger Taylor's link to Joan Campbell a.k.a. "redrockcloud's" website...
http://www.followingvaccinations.com/
I unfortunately know more about hiv/aids denialism than I ever really planned to...
Some awful facts:
according to Kalichman, young gay men ( who are more likely to be sexually active) frequently display beliefs that appear to be inspired by denialists. And Natrass has shown that these beliefs influence how subjects behave, such as whether they attempt having "safe(r) sex" or not ( studies, IIRC, 2010, 2011, respectively).
Unfortunately also, emotionalism and identity-reasoning often replace solid thinking based on external reality.
@ Narad:
Thank you for that lovely little vignette from Ms Allan, however for some reason, I am visualising Deer being played by Ricky Gervais. I guess I don't take Allan as being anything other than farcial.
FARCICAL..
HIV denialism - I've been following it since Duesberg's first articles. There's wrong, there's dead wrong and there's you-be-dead wrong.
There's a privileged cabal peddling this pernicious nonsense & congratulating themselves all the while.
I had not heard of "HIV-negative AIDS" from XMRV-ers. Damn fools.
Looking at Robert O. Young's HIV reward offer, I'm not surprised to see:
At first glance this seems an easy proposition, but it has been carefully worded to make it impossible. It excludes cell cultures, PCR, epidemiological evidence, natural experiments, animal studies and the use of cloned HIV, and it must be a single study, not a collection of studies that together demonstrate the presence of HIV in positive testing persons. In other words he wants scientific proof that doesn't use any of the scientific tools that were used to discover the link between HIV and AIDS. This is a little like offering a reward to anyone who can prove that bacteria cause disease without culturing them, or using a microscope, or using animals.
BTW after all these years "HIV virus" still annoys me. What do they think the "V" stands for exactly?
Reminds me very much of Kent Hovind's million dollar "proof of evolution" challenge--it's got the same built-in requirements that make it impossible to win.
Mikey Adams writes about Burzynski today as he promotes some cancer quackfest coming up online tomorrow.
Adams is one of the speakers, alongside familiar names like Gonzalez, the Gerson family, survivors who "cured" themselves "alternatively" etc.
http://www.naturalnews.com/037859_cancer_solutions_summit_event.html
I must have missed something here. Since when do patients pay to be in a clinical study? If she qualified for this mythical phase 3 trial, then why did she have to give Burzynski $100K? (These may or may not be rhetorical questions.)
Also, I believe it's the sponsor's responsibility to update CT.gov -- which would explain why this trial's status still shows "not recruiting" -- but I may be wrong about that.
Since when do patients pay to be in a clinical study?
Since Burzynski started running them.
Two new stories about Dr. B controversies posted on the 21st Floor website:
http://www.thetwentyfirstfloor.com/?p=6431
http://www.thetwentyfirstfloor.com/?p=6433
Unfortunately the video mentioned in the second story (about falsified medical records) has been taken down from YouTube.
I'd love to read more about both these cases. Does anyone have any leads?
BTW, the same website has a hilarious, but very sad exchange between Tim Bolen and the blogger/host Keir. Bolen claims one's sexuality affects how one looks upon science. Read his comments here:
http://www.thetwentyfirstfloor.com/?p=5679&cpage=1#comment-43860
I'm not sure who's funnier: Mikey Adams or Tim Bolen. Is Bolen still working for Burzynski?
This must be so frustrating.. Does the FDA have any power to step in with these obviously deceptive 'clinical trials' and demand results/timeframes etc? Or is Burzinsky protected because he 'owns' the review board that is supposedly monitoring these trials?
It seems the likelihood of a patient's family taking it further in a court is next to nothing - they are grieving and for all intents and purposes out of a significant amount of money. In a way it's an ideal scam.
I feel for Rachel and her family, it is hard to accept a death sentence in one so young and I know people will do anything to live or to help their child to live
Unethical parasite. If Burzinsky was altruistic about his treatment then he'd be looking for funding, not charging patients exorbitant amounts. That makes me angry, and sad that desperate people fall for it..
Ausduck:
It is quite lovely that those who live elsewhere see so much potential for our little FDA. Unfortunately in reality it is hampered by lack of funds. Plus there are lobbying groups working to in earnest for its demise.
The big Supplement folks, most food processors and certain pharmaceutical companies (including the company that tried to sell thalidomide in the USA in the early 1960s) want the FDA to go away. This is why there was no crack down when a diet supplement killed may people .
"This is why there was no crack down when a diet supplement killed may people ."
Which one?
Thanks Chris,
It is unfortunate and I wish the FDA could do more :) Our TGA (Therapeutics Goods Administration) here in Aus has similar woes and can be a toothless tiger at times. But it does have some authority to investigate clinical trials under certain circumstances if a complaint is lodged by a third party.
And I'm hearing you re the big push from the supplement folks!
“This is why there was no crack down when a diet supplement killed may people .”
The tryptophan debacle of 1989?
Chris,
But it says on the internet that the FDA has a huge army of jack-booted, machine-gun-wielding thugs whose main purpose is to intimidate innocent vitamin sellers and raw milk farmers and herd them into FEMA-run concentration camps. Isn't that why they don't have the resources to deal with the likes of Burzynski, not because they are underfunded and under-resourced with an annual budget of less than $15 per US citizen? [/sarcasm]
hdb:
I was thinking of ephedra, and the fact it was excluded from FDA jurisdiction by the passing of DSHEA in 1994.
.... which I was probably conflating with fen-phen, which was a drug that was approved by FDA management.
@ Chris:
And believe it or not, some woo-meisters still b!tch about governmental interference concerning ephedra/ ma huang.
I had the opportunity to meet this young woman shortly before she headed down to Texas to start antineoplaston "therapy". She and her boyfriend were wonderful people, and it was clear to me that they were desperate for any bit of hope. They had in hand a letter from one of the doctors at the clinic (who, not surprisingly, had been disciplined by the Texas Medical Board). Did what I could to dissuade her from going, but I think their minds were made up.
Last I heard, her tumor had "burst". So said the NP whose office I had worked in when I met Rachael. She seemed to think the antineoplaston therapy was responsible.
Did I miss something here? Regardless if his treatment works or not it seems everyone in here is acting like chemo and radiation saves people? Hell I'd rather pour urine in my veins than chemo any day! He may be a sham but I know there are better safer healthier ways to be treated for cancer than chemo and radiation! Or am I wrong? From what I have seen chemo doesn't do crap but make you wanna die faster?
@Zach - wow, I guess all of those friends of mine who undergone conventional Cancer therapy, including surgery, Radiation & Chemo that are still alive today are actually zombies & died a long time ago?
Seriously dude, do some research.....
@ Zach: ''I know there are better safer healthier ways to be treated for cancer than chemo and radiation! ''.
No mate, you wish there were. I do too.
''From what I have seen chemo doesn’t do crap but make you wanna die faster?''.
What have you seen exactly? I had chemo and radiotherapy because I didn't want to die. Before my diagnosis with stage 3 cancer, I knew almost as little as you do about cancer treatments, and I wanted to avoid chemo too. Nothing prompts frantic research more than fearing for your life, and it didn't take long for me to realise that those 'better safer healthier ways' didn't exist, and proven treatments would give me my best chance.
Next month it will be nine years since my cancer diagnosis; I'm fit and well with no sign of cancer.
Zach:
What you missed is that Burzynski's unproven treatment is chemotherapy. It is one that causes more harm than good.
Zach:
it seems everyone in here is acting like chemo and radiation saves people?
Saved my youngest brother.
Yep, Zach, you definitely missed something.
Or am I wrong?
SATSQ, but I cannot think of a answer stupid enough to match the stupidity of this question.
I'm confused by the 3% chance of a grade 2 astrocytoma responding to conventional treatment. Even a glioblastoma, which is a grade 4 astrocytoma, has a better chance of response than that,
"We don’t know the details. We don’t need to know...(of her death)."
Great science there, bro. If Orac and the rest of his troglodyte followers died tomorrow it would not make a bit of difference.
Joe,
What possible difference could it make to know the details? Do you have anything intelligent to add to this discussion or did you just feel like coming here with idiotic insults aimed at Orac and his readers?
You DO know what Orac does for a living, don't you? He saves lives. What do you contribute to society?
Orac, how many patients do you have willing to testify publicly, before congress that YOU cured them of cancer when otherDr have given up? Hmmmm? i bet not a one. But Dr Burzynski has hundreds of such satisfied patients.
Does he cure Everyone, 100% of the time? No! But he never claims to do so either.
It is easy to criticize and throw stones at other Dr when you have yet to discover a treatment on your own. Far better to besmerch another Dr instead. you pathetic swine are not fit to walk in Dr Burzynskis shaddow.
Mel,
Honest, all he has to do is publish statistics so we can see if his treatment is more or less effective than the current standard of care.
Naturally, the statistics would be part of the overall study report where he shows his methodology, performs adequate randomization and blinding, and is peer reviewed.
how many patients do you have willing to testify publicly, before congress that YOU cured them of cancer when otherDr have given up? Hmmmm? i bet not a one.
Pro-tip: A rhetorical question looks kind of stupid and lacking in confidence when you feel obliged to answer it yourself in case the recipient's actual answer is not the one you want.
Where? Even the "Burzynski Patient Group" only makes it to 105, and that's without correcting for the dead ones.
Wow! 4 responses in less than 6 hours....
Pro Tip: Orac your blog would be much more believable if you stopped littering your comments section with phoney aliases feigning support for smear campaign. Pathetic!
Btw, Orac, Burzynsk clinic only claims between 20-30% cure rate on the most aggressive, inoperable cancers....which makes it 70-80% bloody ineffective! 70-80 patients who go to burzynski clinic WILL die....(gasp!). .... But far better than the 99% of patients who WILL ALSO DIE using conventional treatments.
There is nothing shocking about the numbers of patients dying at the Burzynski clinic, rather its astounding the numbers who actually live.
Wow! If I only had a nickel for every time a borderline illiterate alt-med fanboi accused Orac of sockpuppeting his own blog...
And once again, Mel -- Where are the results of all of Stan's "trials?" You know, the things that are supposed to show a treatment works BEFORE people are asked to pay for it?
Mel -
Your pile of statistics are just wild guesses, I know not whether they were plucked from a Burzynski advert, from here-say or your own ass, but they are meaningless.
Even if they bore any resemblance to the truth - and they dont - Burzynski ONLY treats cherry-picked applicants, nearly all of whom have had conventional prior treatment. Burzynski then treats them with standard chemotherapy (albeit off-label and at 20 times the price you can get it elsewhere), He has no idea if it is his treatment that has given him his paltry handful of success stories, the prior therapy or the current chemo he is giving them . He has no idea if his antineoplastons have any efficacy at all or if they are just a bucket if cold urine. He doesn't want to have any idea. He just wants to keep gouging patients and their families and friends for obscene amounts of cash.
You really ought to do some research and read the prior posts in a thread before you wade in spouting bollocks.
You have a nice day now, and don't forget your tin-foil hat as you leave.
@Mel - since this a fairly popular blog, populated by numerous scientifically literate individuals (ranging from other oncologists, immunologists, researchers and medical professionals), I would expect to see a number of responses to your "screed" in a short period of time.
Since Dr. B doesn't actually publish his results, we have no means to determine the effectiveness of his treatments - and given the steadily rising numbers of "patients / experimental subjects" that we find their obituaries, what else are we left to think?
Mel,
But we have no idea how these patients would have done if they had never gone anywhere near Burzynski's clinic. Without any published trials all we have is hearsay, like the numbers you appear to have invented.
In this vein, I would not be the first to note that a substantial number of Burzynski Patient Group "members" are untraceable to the point that one might wonder whether they ever actually existed in the first place.
Pedantry is alien to my nature but I cannot let the complaint about "phoney aliases" pass without pointing out the redundancy.
Not to mention the irony when it comes from someone self-identifying as simply 'Mel'.
Burzynsk clinic only claims between 20-30% cure rate on the most aggressive, inoperable cancers….[...] far better than the 99% of patients who WILL ALSO DIE using conventional treatments.</i.
The comparison here is between Burzynski's claims about a cure rate,* and the empirical results from his mainstream competitors.* Apples, meet oranges. Oranges, meet apples. But I see that you've already been introduced.
Is there some reason why Burzynski does not publish his own empirical results to provide a meaningfulcomparison? Otherwise I could make up an equally awesome 20-30% cure rate for mainstream therapy. I might be lying, but so is Burzynski.
* Or rather, Mel's rectally-sourced approximation to values.
You mean like all the phony aliases (sic) that Eric Merola uses to feign support for his little commercials?
(Whoosh, right over her head...)
Herr Dok,
Didn't mean to rip you off on the "phony aliases" pedantry. I posted before I saw yours.
Wouldn't a phony alias be, in fact, your correct name?
Ah, we have fun here....
Not to mention we all have different writing styles, spelling nuances (US vs. Canada, etc.), levels of literacy, levels of humour, recurring phrases and subject matter, etc.
I once tried to post anonymously on a board where I was already known by my real identity--this was an industry discussion group and I wanted to comment on someone without that person knowing 'twas I.
Do you know how difficicult it is to deliberately change writing style? I tried to pass myself off as someone a little less, shall we say, educated and erudite. I made some deliberate spelling and grammar errors I would never make myself, but it's hard to break years of practice. It's almost like a fingerprint.
Does Mel think Orac really has that kind of time and energy to waste to try to impress her?
LOL! Over a dozen posts in less than 6 hrs "rebutting" the phoney alias tagline....
Orac...me thinks thou doth protest too much!
Marc Stephens is Insane = Orac
Here's Proof: "whoosh! Right over HER head". As opposed to right over his/ their head
Now where did i claim I was a woman Marc Stephes/Orac? Now why would such a thing be assumed Mel = Melvin unless Orac stupidly looks at emails and forgets to use a neutral pronoun whilst using his phoney alias!
Ha ha! Orac, you truly *ARE* pathetic...
You seem to have a rather peculiar notion of what constitutes proof. Have you taken note of the fact that nearly everyone who has commented here has been doing so at RI for months or years?
No-one should attempt to write in Narad's sometimes-allusive style without extensive practice beforehand on an Elliptical trainer.
Yes, Narad. I've especially noticed how days & weeks go by with narry a comment and as soon as someone defends Dr Burzynski, you all suddenly appear like a bad rash (posting within MINUTES of each other), herr doktor followed by Marc stephens is insane among others....then nothing for a few more days until you suddenly appear after I post.
Truly patheic as I've stated before.
One time I worked out on the hyperbolic trainer by mistake, and for weeks afterwards everything was WORSE THAN HITLER.
Mel - Pathetic. You keep using that word. I don't think it means what you think it means.
I know your current shtick of claiming everyone who posts in response to your silliness is Orac is only intended to get peoples' goats. But for the sake of clarity, I am not Orac, nor am I currently Sparticus. You, however, are a really, really strange form of troll.
@Mel - because people that rush to defend Dr. B then refuse to answer simple questions, like "why doesn't Dr. B publish his results, if they are so amazing?"
Um, when has this ever happened on RI? Seriously Mel, do you have an example?
@Adam - there are plenty of posts where the comments die down, as the conversation comes to a close or the posts fall off the main page.
It is only the diehard supporters that resurrect old threads with the same kind of nonsense....
And you thus come to the conclusion that "everybody is Orac" as opposed to, say, being people generally inclined to mock phenomenally stupid pro-Burzynski lobs over the transom such as your own?
Mel,
I am Canaidan. I use Canadian spelling. Orac does not. Do you think he really has the time to keep track of multiple personalites and remember to switch his writing style each time?
I adm it to guessing that Mel was female. I know quite a few Melanies (including a first cousin) but no male "Mels". How would Orac even know that? Neither your real name nor sex is requested when you post a comment.
I usually only post here about Burzynski and other cancer quackery. It is a particular area of interest for me. I never post about vaccines or the politics of health because I'm Canadian and most of the time the subjects don't apply to me. Google my username to see what inspired me.
And I post on quite a few other science blogs under this name. I'm enjoying a particularly interesting discussion on homeopathy as a cancer cure on a British blog right now.
Oh goody. Are we back to all being Bonnie Offit again?
Mel, if you don't appreciate the responses from multiple commentors then why do you bother to post yourself?
And if you think we only rally to post on the subject of Burzynski, check out any of the recent reiki threads. Those generate way more comments than Burzynski. A recent thread broke a record with over 2000 comments before the three-month window for comments closed.
This isn't the only science blog, you know. There are many, with hundreds of commenters around the world posting in many languages about Burzynski and all the other criminals out there.
Science Mom,
I'm actually very flattered that Mel thinks I'm as intelligent as Orac!
If you're not smart enough to understand the "Recent Insolence returned" and how it means that everyone who visits the site gets the heads-up that a previously dormant thread has become active again, Mel, it's little wonder you've fallen for Burzynski's swindle.
I'm Sparticus! And Zero. And Red Hood. And the one true leader of Anonymous. (Seriously, though, no, I'm not. I'd have to read some instruction manuals to hack my way out of a paper bag.)
Given what I've seen so far, I suspect Mel will accuse me of being a sockpuppet despite having my own blogging stint that goes back, wow, almost seven years already? Time flies. Oh, and I finally finished off my Master's degree in, of all things, Spatial Science. Something I can get hired for. Got my cap and gown for Saturday.
I am Brian, and so's my wife!
I guess we shouldn't Tell Mel about Orac's "friend's" blog.
I, for one, have never posted on the other blog. I've seen some names there I've never seen here on RI. So Orac not only has mutiple personalities, but he now has TWO SETS of personalities, one for each blog.
I've often thought just the opposite of what Mel is suggesting: that some blog hosts act as their own Poes to stir the pot and generate more comments. Serving as an "agent provocateur" as it were (also an album title by Foreigner).
Mel, do you have any idea who Orac is or what he does for a living? He's not just hosting this blog out of his mom's basement.
And the rate comments come in is usually based on time of day and day of week. Today is Sunday in a good chunk of the world so more people tend to be around their computers as opposed to being busy at work.
Also I guess Mel has never attended a skeptics meeting or convention where dozens or even hundreds of people attend. Speakers like Orac, Randi, Shermer, Goldacre etc. attract audiences everywhere. I attended a two-day seminar on medical quackery at McGill a few years ago where Orac was a speaker. The auditorium was full. Were all these people hired to fill the seats?
Orac doesn't need to invent people: we are all out here, in every city in every country, keeping our eyes on scumbags like Burzynski. And Robert O. Young. And Simoncini.
I doubt Orac would use a word like scumbag.
"Now where did i claim I was a woman Marc Stephes/Orac? Now why would such a thing be assumed Mel = Melvin unless Orac stupidly looks at emails and forgets to use a neutral pronoun whilst using his phoney alias!"
I'm still trying to parse this into an intelligible statement. The initial question, that's comprehensible. But the next collection of words...
This part, "unless Orac stupidly looks at emails and forgets to use a neutral pronoun whilst using his phoney alias!", appears to imply that by looking at the email, Orac could know that "Mel" was female and forgot that he wasn't supposed to reveal his knowledge. But the previous part makes no sense in context:
"Now why would such a thing be assumed Mel = Melvin ". Is this a parenthetical comment, so it should be read as, "Now why should such a thing [that Mel is a woman] be assumed [given that in this case] Mel = Melvin"? If Orac could tell from the email address that Mel = Melvin, why would he "forget" and use a female pronoun? Most people, me included, would think Melvin was a man's name and, if we forgot to use a neutral pronoun (like "it"?), would use a male pronoun.
The only other way I can read this string of words is "Now why would such a thing be assumed [, the assumption being that] Mel = Melvin". But if Orac, or anyone else, just assumed that Mel = Melvin, then again one would expect use of a male pronoun, and furthermore Orac's access to the email would be irrelevant.
Really, Mel, you need to put together an intelligible argument if you want to convince anybody that Orac is using sock puppets.
"Yes, Narad. I’ve especially noticed how days & weeks go by with narry a comment and as soon as someone defends Dr Burzynski, you all suddenly appear like a bad rash"
I know what's happening! Mel isn't aware of the cookie problem, so he saw the "Respectful Insolence returned" is unchanged for days and weeks. Then a Burzynski post turned up, he commented, and the "Respectful Insolence returned" suddenly updated with a horde of comments. So he thinks his comment sparked all that, when in fact there had been dozens or even hundreds of comments a day of which he was unaware.
LW,
It's really just Occam's Razor. Melanie is a more common name than Melvin, so I just assumed. In another era maybe Melvin was more common. I've never met a male "Mel" and except for the diner in the old movie American Graffiti and Mel Gibson every Mel I've ever encountered has been short for Melanie.
If Mel wants to harp on that, fine. It's a lovely red herring while he/she/it ignores the core of this thread, and all the other Burzynski threads going right now on RI.
I guess Orac is also Josephine Jones. That blog rams it to Burzynski even worse than Orac does.
Actually the only Mel I know is male (it's short for Melvyn), but I wasn't making an argument as to what the assumption should, only that the interjection of "Mel = Melvin" makes the argument unintelligible. I take it that Mel was saying that in this case Mel *does* equal Melvin, because I don't see why that was inserted at all. If it has anything at all to do with the email address, it contradicts Mel's argument. And if it has nothing to do with the email address, the argument collapses anyway.
IAnd I was saying that Mel was reading way too much into it, not arguing your point.
The most simple explanation is usally correct. I know a bunch of Melanies. All female. Mel doesn't get that. I must have some Sooper Seekrit inside information.
Maybe Big Pharma, our paymasters, can also tap into ISPs and determine gender, then feed that information to us in exchange for our shilling.
Ah! I know how to make sense of this statement. Read it like this:
"Now why would such a thing be assumed [, the assumption being that I am female, given that any reasonable person would assume that] Mel = Melvin unless Orac stupidly looks at emails [which show that Mel = Melanie] and forgets to use a neutral pronoun whilst using his phoney alias!”
So the fact that so many Mels are female undercuts her argument. Maybe she doesn't know any other Mels.
You haven't seen Melvin and Howard? Good gracious, madam.
I took this to mean that the E-mail address (or actual E-mails otherwise sent from that address) discloses the writer's sex, but people are supposed to assume that the shortened form is male (I did) and that to do otherwise means that something is afoot.
And yes, Orac "stupidly looks at emails" because everybody's first post is held in moderation. Unless Orac has staff now to do that, he must look at everyone's first post here.
And I know he does monitor the flow of unmoderated comments because he posts his own responses once in a while.
I can only presume Mel lives in a part of the world where Melvin in more common than Melanie, so that assumption makes sense to him/her/it. Mel also used the word "whilst" which is rare in North America. Melvin is an old-fashioned, nerdy name (can you imagine any parents naming a baby Melvin today?) whereas Melanie is a modern name. The Spice Girls had TWO Mels! Both very female.
Mephistopheles O'Brien and Bronze Dog both misspelled 'Spartacus'. Conclusive proof? I think so.
I was referring to Spartacus's third cousin from Naples.
- Brian of Nazareth
Pardon me, Napoli.
- Brian of Nazareth
Did he know Biggus Dickus in Wome?
I would have assumed Mel may be Melanie, as opposed to Melvin...simple deduction, given the ratio of Melanies to Melvins....
Melonhead?
No, but he did know Biggus Dickus's wife Incontinentia Buttocks.
Mel has figured it all out. Orac doesn't just write absurdly lengthy posts on a near daily basis; he also writes dozens of comments, too. Fantastic work, there, Mel. Kudos. As brilliant as thinking that Congress has a lie-detector so accurate that no one would dare lie to them.
Thomas, my only question is why Orac would bother wasting time bashing other Dr cancer cures in the first place? What ishis gripe exactly?
Is his gripe that people choose to seek out Dr Burzynski, that they pay him for his services or both?
In the matter of the first point, whom someone chooses to see for cancer treatment is THEIR choice as human beings. Why Orac, the NCI, FDA or any other self appointed moron with a god complex finds it their business to dictate and regulate HUMAN CHOICE is beyond me.
Secondly, that people pay for Dr Burzynski servces...so what? He should do it for free? If someone wants to pay $50,000 to fly to Africa and bathe in Hippopotamus turds because they think it will help their cancer,so be it. Their money. their body.Their choice.
Mel:
Because he does not like people throwing their money away on false hope.
If you have evidence that Burzynski's method actually works then provide the title, journal and date of the PubMed indexed paper where he clearly gives the results of one of his Phase 2 clinical trial, and the results are that the long term survival was equivalent to a treatment like Gleevec. Just one paper, and you must provide a direct quote where the positive results are summarized showing a substantial five year survival rate.
Mel,
If you'd like to have a civilized conversation and drop your ludicrous accusations that we're all Orac, I'd be happy to answer your questions and explain some things to you.
First of all, Orac is not the only one bashing Burzynski. There is a worldwide movement watching him and condemining his practices. Orac has really only been writing about him with any frequency for about a year. Other medical bloggers have been following him for years.
We've been talking about a little girl named Stella who just died in Toronto. She had a DIPG, a lethal form of pediatric brain cancer. It is 100% fatal. This also happens to be one of the forms of cancer which Burzynski claims to specialize in.
The little girl was diagnosed 16 months ago and died last month. Her doctors actually only gave her a year, so she got an extra four months.
The parents did not persue any type of extraordinary treatment. They accepted the horrible, tragic inevitable outcome and vowed to make the little girl's last months as happy as possible. They took her to the farm every day (she loved farm animals) and had birthday parties in advance for her every few weeks. She got to meet her new baby brother, had playdates with her little friend, ate her favourite foods while she could still eat, etc.
Had the parents gone to Burzynski, who knows this type of cancer is incurable, he would have said "maybe I can give her a year or so." What parent wouldn't jump at that? The parents would have spent hundreds upon thousands of dollars but that's not the worst thing. The treatment is horribly toxic and makes life miserable. It's hard enough for an adult to undergo, let alone a little two-year old girl. The antineoplastons are so toxic they can't be administered by IV: they'd destroy the veins. They have to be pumped directly into the heart via a catheter called a Hickman line. They raise the body's sodium level to near lethal levels, and there are plenty of side effects that have been documented in many of Orac's postings here.
The family would have had to travel to Texas, stay in a motel, torture their little girl, lose their life savings all for what? The same amount of time, and the little girl's last months would have been sheer agony.
Look up Luna Pentagine for an example of the misery a little kid undergoes on Burzynski's protocol. There was a tragic BBC documentary on her story earlier this year. My heart broke just looking at her. She died a few months ago.
Burzynski has not published any clinical trials in 35 years. He has a fabled Phase III trial approved that is already three years late to start and is still not even recruiting patients. He was expected to publish preliminary results in 2013--he'll never get there. He uses chemotherapy and lies about it. He sells heavily overpriced drugs to his patients from his own pharmacy. His staff has misread lab reports and told patients their tumours were shrinking when they were not. He hired a goon to threaten critical bloggers last year, including a 17-year-old boy. He paid an Old Navy commercial director to produce an infomercial to drum up sales rather than publish trial results. He lives in a $6 million, 15-bathroom house on 10 acres while his patients go broke, and yet he still begs for donations.
There really is a ton of information both on this site and on plenty of other sites about him. I think you'd find it very eye-opening to explore Orac's posts, plus Josephine Jones, Anaximperator, Quackometer, Ratbags, Popehat and 21st Floor. That's just a start.
I'm reminded of a possibly-apocryphal story about a traveler who's visiting a foreign land, where the residents adhere to a religion under which they vow to harm no living thing. The traveler is impressed, until he sees them fishing. He immediately asks how this can possibly be reconciled with harming no living thing. The reply he gets is that indeed, they do no harm; they merely pull the fish out of the river and onto dry land, and if it chooses to drown there, they respect its choice.
Mel's fetishization of "HUMAN CHOICE" strikes me as being similar. See, when I think of "choice," I think of being able to make an informed choice, hearing not only the sales pitch that says "Give me your money for something great and wonderful!" but also from others who may be able to make a much stronger case that the "something" isn't quite so great and wonderful.
But Mel apparently thinks people should have the HUMAN CHOICE to be subjected ONLY to the sales pitch of someone who's got hippo turds to sell, and that letting potential customers get information about the hippo-turd cure from someone OTHER than the one who's angling to make a buck from it would somehow impair the customer's "choice."
Actually, he shouldn't do it for free; he should in fact be PAYING THEM. Burzynski claims he's conducting clinical trials to prove that his treatments work. If that's true, then everyone who's participating in those trials is giving him a gift of inestimable value, risking their lives to help him prove his treatment's worth. He should be paying THEM for the gift they're giving HIM, as happens in all other clinical trials.
I'm sure Mel will rant on and on about how it's their CHOICE to not only make themselves guinea pigs for Burzynski but pay hundreds of thousands to do so, but as we've seen, Mel's concern doesn't extend to whether a choice is an INFORMED choice.
OMG, I think he may have read... Black's Law Dictionary.
GOVERN YOURSELVES ACCORDINGLY.
@Mel
Did it ever occur to you that the 'flurry' of activity only happens at certain times in the day? For instance, I'm over in Australia and I notice this 'flurry' occurs during my morning, and my early evening. This usually corresponds with American commenters doing their morning reading, or their evening reading. However, during my afternoon, it gets very quiet.
I often find, like now, that when I wake up there are about 60 + blog comments newly added. That doesn't make for a conspiracy, that just makes for people in a different time zone than me being active during their day and my night.
Plus, you seem not to have been part of very active blog comments before. Science blogs often receive hundreds, if not thousands, of comments over the course of their life. We like to discuss things - and that shows in the fast and furious action.
This is not to mention that I have trouble keeping up myself, what with the numerous comments and blog posts that appear every day.
Yeah, cause 6 hours is just *too fast* for normal people to post, it just *has* to be the author ... You don't know what an RSS feed is do you?
I'm going to go with 'no, you don't know what an RSS feed is'.
Do you have any actual proof of sock puppetry? And why are you bothering to argue against one person when they are also the guy with the moderator function? Aren't you just wasting your time?
F* me - did you even bother to read the posts you're commenting on?
Wow, yet another pharma shill gambit. There must be a 'how to respond to critics' playbook handed out to Burzyinski fans...
Because we humans prefer to save people from killing themselves over treatments that are harmful. Exactly how selfish are you anyway?
Sure - except it's not paying for treatment, it's paying to be part of a clinical trial which is an ethical no-no. Haven't you been reading the comment threads?
@Lawrence and AdamG
Not to mention there are simply some posts that attract a small (50 or so) number of comments, whilst other threads continue on for months. It depends entirely on which post you watch, for how long, and when you turn up.
I wonder if Flip is so concerned over saving people from toxic chemo therapy? Or how about radiation that burns off peoples hair and makes them sterile & deaf?
Since EVERY form of modern cancer therapy is riddled with nasty side effects, your strawman argument about how its your duty to save peole from harmful treatment is misguided at best, hypocritical and arogant at worst.
Perhaps you only approve of terminal cancer patients receiving palliatve care only?
Btw, there is nothing unethical or immoral about paying to participte in a clinical trial. Numerous clinical trails require participants fund a portion or all of their treatment. If you have a problem with this, then kindly direct your outrage to the FDA which allows all manner of Big Pharma to charge for participation in clinical trials.
What, Mel, do you object to people choosing to be alive and temporarily bald, versus full-haired and dead? I thought you were in favor of choice.
Of course chemo has side effects. The question is whether that's better than what the cancer's going to do to you, and it's one that can only be answered in each individual situation. My godmother picked surgery & chemo and is alive a decade later. My grandfather picked morphine and died within a year. The difference? She was young and had a well treatable breast cancer. He was old and probably had pancreatic cancer, and had done enough surgery in his life to know what that meant.
In general, the study drug is provided free of charge, as are tests that pertain directly to the study. It is not unusual to require patients pay lab fees, other drugs such as anti-nausea drugs, hospitalization costs, etc. But wouldn't you agree that it *is* immoral to make a patient pay a 5X markup for the study drug? That's what Burzynski does.
@Mel - what Burzynski gives is chemotherapy. Does that change your statement at all?
This is only anecdotal, but my friends who have had chemotherapy and radiation treatment did not have their hair burned off, are not deaf, and are not (to the best of my knowledge) sterile. They're happy they did not die of cancer.
If someone has published reproducible (and reproduced) studies showing that Dr. Burzynski's treatments are at least as effective as the current standard of care and have fewer side effects, please share.
Anteus, your comments about getting paid to participate in a clinical trial are woefully misinformed. It is obvious you have never participated in a clinical trial or understand how the fee structure works.
Each phase of an FDA clinical trial costs at minimum several million dollars. No problem if you are GSK but big problem if you are not. If every clinical trial was 100% funded by the FDA, only a handful of clinical trails would be performed every decade. This would grind research and development to a screeching halt.
Many people ( not just cancer patients) have to pay thousands, even hundreds of thousands of dollars to partcipate in clinical trials. I know a couple who paid over $70,000 to participate in an IVF trial (and still acme home with no baby). No doctor fees were covered, nor the medication. Perhaps someone like you should have told them to save their money on this unproven treatment and adopt instead?
No Callie, it is not immoral to charge for mark up of medications. That is why you pay $15.99 for 200 Advil that costs 50 cents to produce.
You pay for the patents and years of R&D behind the drug.
If you do not like it, then move to Cuba where no drugs are allowed to be marked up....but first you have to find the drug because the drugstore shelves are empty.
Clearly Flip's concerned about saving people from Burzynski's toxic chemotherapy. Wonder why that is?
Maybe the fact that despite two decades of conducting supposed Phase II clinical trials Burzynski has published absolutely no evidence indicating it's effective at treating advanced cancers?
Wow, an anecdote to prove that Burzynski is justified to charge exorbitant fees for his nostrums. No Mel participants in legitimate clinical trials do not ever pay to play. Please cite one, I'd be very interested.
The criticism of Burzynski is the fact that he is using his patients as ATMs by requiring them to purchase prescriptions from his private pharmacy at a significant markup than what they are in a retail or hospital pharmacy. You're fine with this?
Acutally, he's accurately informed (I've been involved in providing assay support for a number of clinical trials). Enrolled subjects most frequently receive some form of recompense, if only in the form of medical work-ups and monitoring, transportation reimbursements, etc. and in those cases where they aren't recompensed their participation is instead voluntary. being charged to participate is unethical.
Clinical trials aren'y funded by the FDA, however: that's not within their mandate. It's alwaysbeen the responsibility of whomever is seeking approval for a drug to underwrite tehcost of the clinical trials necessary for approval.
It hasn't so far.
Citation neededWhich trial was this? It should be availalbe on teh FDA website. .
I would have. Course, after checking out the whole IVF route we elected to adopt our children.
Would it be unethical to prescribe Advil and also insist that instead of going to the pharmacy of your choice to buy 200 tablets for $15.99, you must go to the pharmacy I own and buy 20 tablets for $160 apiece if you wished to be part of the study?
Burzynski's pharmacy, however, is marking up the cost of drugs for which they do not hold a patent, and have not invested years developing.
Tell me Mel, how is it that university researchers are doing this: http://www.nytimes.com/2011/09/13/health/13gene.html?pagewanted=all&_r=0 Phase I Trial, publishing their results and not charging patients?
@Mel:
Wow, Mel, you have friends who tried THAT long ago for IVF? I mean, the first IVF baby is in her 30's now, which means they were in a TRIAL 30+ years ago. If you mean they attempted IVF these days, that's not a CLINICAL trial. That is a trial to attain pregnancy. We KNOW IVF can work. The fact that is doesn't always work, depending on the reasons IVF is even needed, has nothing to do with the fact we know it works. Very different thing in the science/medical worlds.
So, let me explain this to you in easy words. NO RESPECTABLE CLINICAL TRIAL CHARGES FOR PATIENT PARTICIPATION. The medication(s) being tested, the laboratory tests, etc should all be covered by the trial. Patients may need to pay for travel expenses and follow-up visitis with their own providers.
Now, how about the fact that Burzynski lies about the fact he uses chemotherapy, lies about the fact that he's not really doing clinical trials, and has never published any PROOF his treatment works, is less toxic and more effective?
Mi dawn, don't be an idiot! there are many IVF clinical trials going on testing new drugs and procedures.
Louise Brown was the first IVF baby but she was conceived using a single egg in a natural cycle. All IVF advances since then have involved clinical trials...everything from the gonadotrophins used, to technical procedures like ICSI, PGD, blastocyst transfer, cryogenic freezing techniques.
And yes, the vast majority of these required patients PAY to participate. SIRM had a CGH research study recently and only the CGH portion of the IVF ($approx 3000) was covered. All medications, ER, ET, monitoring etc was out of picket over $15,000 PER cycle.
Please do some research before commenting.
JDC go do your own research. Hint: there was an FDA CLINICAL trial that charged patients $5000-18,000 per treatment cycle depending on which treatment track was chosen...it ran from 1994-2011.
@Mel - you made the claim, you provide the evidence......otherwise, you'll pulling crap out of your ass.
Funny, clinicaltrials.gov doesn't seem to have heard of it. Nice attempt to go from N = 1 to "the vast majority," though.
Lawrence....
Start here:
http://www.clinicaltrials.gov/
You do know how a search engine works dont you?
@Mel - of course I do, but then again, I am unsure if you do - since you made the claim, it is up to you to provide the specific evidence to back it up.
Try again.
@mel
Strike one, mel.
@Mel
Onus probandi
You do know how an argument is meant to work don't you?
@ Mel,
And yes, the vast majority of these required patients PAY to participate
you gotta do better than that; I'm paid to do my clinical trial and I have been paid to be a research subject in many scientific studies. Furthermore, In all the clinical trials regarding big pharma's medication, participant are being paid from 500$ to 2500$ (and some rare time, more than that) to participate. How come peoples have to pay to take part in a clinical trial?
Can you explain that to me?
Alain
Oh, Alain, you write like so many of my relatives in L'Assomption speak!!! I love it!! And don't look to Mel for an explanation of anything, she has her answer and she is sticking with it no matter what is presented to her....(BTW, yes I am French Canadian, but as an army brat, spoke mostly english at home)
@ Agashem
Are you still in Montreal? perhaps we could go for a beer someday?
Alain
New to this whole, "making a claim and providing proof of it" thing? That's the way it works; we don't do your work for you so put up or shut up.
Another happy patient....oh wait! Anedotal evidence doesnt count...until it does...
http://www.youtube.com/watch?v=0U5XeSaO_QY&list=UUGtA43ppE56XRwmWi6A6H-…
@Mel - so, where are those published studies again?
Mel,
We discussed Hannah Bradley on the other Burzynski thread a few days ago. She had surgery and radiation.
Here's the answer JGC posted on Dec. 5:
Judith, regarding Hannah Bradley you are aware she underwent surgery for her cancer before becoming involved with Burzynski, right? According to the Team Hannah website “”The operation was a success and they managed to remove nearly all of the tumour.” (bold for emphasis)
The remainder of Hannahs tumor was enlarging and continued to GROW after surgery. This is why Burzynski was sought out in the first place. Now shrinking again after burzynski treatment... Which you would know if you bothered to watch tbe video!
We prefer our science served up in reputable journals, not YooToob vids. Burzynski's hacks have made mistakes numerous times with regards to their reports so yeah, anecdotes via video don't count.
@Mel - quite a few "Dr. B" patients have YouTube videos, and most of them are now dead.....
Hint: You've only got four to choose from, or one if you want primary completion date to be the criterion.
You do know how a search engine works, don't you?
Since EVERY form of modern cancer therapy is riddled with nasty side effects
Regale me with the nasty side-effects of surgical excision of early-stage melanoma.
@mel
strike two and strike three mel, yer out.
So I guess that means you don't have any shred of evidence that burzynski's "treatment" is effective.
Yeah science mom, ancedotes dont count...unless you are Orac smearing Dr Burzynski and then ancedotes up the wazoo! Take a look at the title of this blog... Which science journal is Orac getting the Mackey stats from? None...just more youtoob video. Goes both ways just sayin'.
Herr doktor... Gee lets see... Sideeffects of melanoma excision....
Keloid scarring
Pain
Nerve damage
Infection
Damage of healthy tissue
Reaction to anesthetic
Improper surgical margins (too wide or too narrow)
....
Mel, Tu Quoque fallacies don't fly either. Orac has written extensively about the implausibility of Burzynski's claims and his trail of dead patients who would have been better off just doing nothing and enjoying some quality of life. He mocks Burzynski's videos and testimonials as well he should.
Now don't you owe us some citations instead of lame attempts at distraction?
@mel
Still cannot come up with any proof, instead throwing out ad hominems and distractions?
Guess you just validated yourself as not having and proof at all of buryzinski's failed ideas.
Gee lets see… Sideeffects of melanoma excision…
The use of the word "riddled with nasty side effects" left me expecting probable sequelae.
@Mel
Ah, so we're heading straight for the typical "cut, poison, burn" crap?
I am concerned that the medicine provided to us *all* is both effective and safe. I am also concerned that not enough people understand that both the risks *and* benefits should be included when making decisions.
Traditional chemo
Risks: side effects that can reduce enjoyment of life as well as health
Benefits: cancer being cured and/or treated enough to delay death
Burzyisnki treatment
Risks: who knows?
Benefits: who knows?
Let's see, one treatment has evidence showing both sides of the risk/benefit equation, the other has .... absolutely no information about it whatsoever. Plus unethical charges of payment to patients for treatment provided as part of a clinical trial; which the former doesn't do. Plus overcharging on meds you can get cheaper from other pharmacies; the former doesn't do that either.
Plus, Burzyinski offers misleading marketing information, along with providing *traditional chemo medications*. You're defending the wrong guy here.
A basic risk/benefit would suggest that cancer patients will receive more benefits than risks by attempting traditional chemo (depending of course on their individual situation). A basic risk/benefit would also suggest that trying Burzyinski's treatment has no prior evidence for which to judge it on.
Unless of course you're inventing a strawman of a strawman.
I approve of medical treatments that are proven to be safe and effective. Wherever that may lead - and if Burzyinski would actually publish his fricking data, maybe I would be able to make up my mind whether what he does is both safe and effective. Until then I am assuming the null hypothesis: that it doesn't work, because it has not been proven to work.
Have you got any evidence of that? And why is it moral to pay to participate? (Just because it has been or is being done doesn't confer morality on it)
Seeing as how I'm not in America, I don't think I'd be able to do that. Down here in Australia we have universal health care, so we rarely have the same medical payment issues as you lot do; with the added benefit that participation in clinical trials are free.
PS. See what I mean? I go to bed and wake up to find a bunch more comments. Where's your proof of conspiracy huh? where's your evidence of sock puppetry? Ah that's right, when it doesn't work, move on to the next claim and pretend you never made it...
Ah yes the old "but he's just one guy, he has no money" gambit.
There's plenty of ways to get the money, from public to private financing. Funny how he only seems to be interested in making money for himself.
http://www.quackometer.net/blog/2012/03/the-burzynski-millions.html
Did it ever occur to you that your friends were ripped off?
Anecdotal: I've participated in research myself, and was not charged to be involved. It didn't involve treatment programs, so it was voluntary, not reimbursed. So, one anecdote versus yours... equals absolutely nothing.
Yes - AFTER they have been proven to work. Before then, it's up to the investigators/companies to pay for it.
Why are people from the UK or Australia going to Burzyinski to pay thousands of dollars for an unproven treatment, when they could stay at home and have treatment for free or at least heavily subsidised? Oh that's right: because any hope is better than no hope, even if it's false.
Nope, it never does when it comes to clinical trials.
There's a huge difference between using an anecdote in an informal setting and using one in a clinical trial or instead of peer-reviewed evidence. Orac doesn't have to provide peer-reviewed evidence for Burzyinski's treatment: Burzyinski does.
And pointing out that all Burzyinski has is anecdotes is not exactly use of anecdotes in itself.
By the way - even if all this were true and fine and dandy: that still doesn't rebut the fact that the guy has not published any peer-reviewed papers on the treatment. Chemo could be wrong, that doesn't make him in the right. Payment for trials might be fine, that doesn't make his papers appear out of thin air. Current cancer treatment might not be perfect; that doesn't make his any more so. Orac could be an evil being... that still doesn't prove that Burzyinski is a saint.
... And after all of this:
Oh look, yet more LACK OF EVIDENCE provided to support fans of Burzyinski. And yet more logical fallacies and evasion of the truth in place of it.
@JGC
Absolutely right. I might not stop criticising him after he publishes, but it would at least allow me to have the opportunity to change my mind.
I think I'm going to start a Burzyinski bingo card.
1. Tu quoque
2. Cut, burn, poison
3. Nothing wrong with payments/ he has no money
4. Conspiracy
5. Any hope better than no hope
6. Not understanding the difference between a trial and a treatment
7. Continued distraction away from the lack of published evidence
8. Youtube link
9. Cancer testimonial website and/or newspaper article
10. Any deaths/growths in the tumour is because of past chemo treatments
Any more to add to the list?
@ Flip,
I don't have anything to add to your list but then, this made me pause:
Anecdotal: I’ve participated in research myself, and was not charged to be involved. It didn’t involve treatment programs, so it was voluntary, not reimbursed. So, one anecdote versus yours… equals absolutely nothing.
One anecdote further, I am treated in my clinical trial (it's an open label) and it cost me nothing.
Alain
p.s. off to bed.
Perhaps you only approve of terminal cancer patients receiving palliatve care only?
I have known a surprisingly large number of terminal cancer patients, on account of poor choices of family and friends. I have spent a lot of time in oncology wards and hospices, telling silly jokes and stringing up christmas decorations and holding hands during bone-marrow samples and helping out with morphine injections. I am the man to ask "Does this wig suit me" or "Does this Hickman line make my bum look big" or if you want a steady hand with the final OD.
I approve terminal cancer patients receiving whatever care they choose.
I approve of fraudsters who feckin' lie to terminal cancer patients dying in fires.
The same for people who construct elaborate pyramid schemes to exploit the families of terminal cancer patients, by giving them the task of extracting money for the fraudsters from their communities and support networks.
I have known a surprisingly large number of terminal cancer patients
Forgot to add that I also know a large number of non-terminal cancer ex-patients.
Mel,
Do you really think those people would be perfectly well if those nasty oncologists would just leave them alone? Have you the slightest idea what untreated cancer can be like?
flip,
You might add, 'ignores previous conventional treatment and gives credit for any improvement to Burzynski' to your bingo card, and perhaps, 'thinks that untreated cancer is more pleasant than chemotherapy and radiotherapy'.
@Krebiozen
Good point, updated below:
1. Tu quoque
2. Cut, burn, poison/ cancer is not as terrible as we think, therefore no chemo
3. Nothing wrong with payments/ he has no money
4. Conspiracy
5. Any hope better than no hope
6. Not understanding the difference between a trial and a treatment
7. Continued distraction away from the lack of published evidence
8. Youtube link
9. Cancer testimonial website and/or newspaper article
10. Any deaths/growths in the tumour is because of past chemo treatments
11. Alternatively, take any credit for past chemo treatments
So Mel is another hysterical ninny with nothing to say but "stop being so mean to the Bwave Doctor". No evidence, no real argument as to why he shouldn't be condemned, in fact no real attempt to defend him.............just "thtop being tho beathtly".
This seems to be increasingly the case with Burzynski supporters, they are running out of pseudoscience arguments and turning to nebulous arguments about "personal choice" and "fairness" mixed with new-age mysticism and good old fashioned bullsh*t.
Maybe the brave maverick wont ever get what he truly deserves (a lengthy spell in an enclosed space where he is afraid to go and shower), but here's hoping his support drains away to nothing as both the credulous and the sick, desperate and confused see the light and recognise the odious truth of his scam .
@Flip & Alain
As I've mentioned elsewhere and to add more anecdotes regarding clinical trials, I've been in two.
I would have been charged for one of them as it was using already approved meds in a slightly different fashion based on anecdotal evidence of efficacy. Praise be to socialized medicine, eh Alain.
The second tab was covered by BigPharma and I got $25 a visit (for lunch/parking but mostly parking) because, like $tan Bur$iti$ and his Urine Cure, the drug was unproven.
Burchintzy is a $coundrel worthy of the gibbet.
Here's another side effect of melanoma excision:
you get to live- like my handsome, athletic cousin Will- who had one removed more than 5 years ago.
And work, travel, spend money, worry about his kids etc.
"Or how about radiation that burns off peoples hair and makes them sterile & deaf?"
Would I rather be bald, deaf, and sterile, or dead? Man, that's a hard one, that is.
Burzynski is like Aristotle in a room full of flat earthers trying to convince them the earth is round.
You all want a ride in a spaceship before you'll consider altering your beliefs.
Antineoplaston are so worthless, thats why Burzynskis patents were infringed upon 11 times...
Let the hysteriacal rage and gnashing of teeth resume...
@Mel - okay, how about some actual evidence, citations or other proof of the efficacy of Dr. B's treatments?
Why hasn't he published clinical results for his various "trials?"
At least Aristotle provided evidence - you have provided exactly NONE.
Actually, Mel this is a more accurate version of your sentence:
"Burzynski is like P.T. Barnum in a room full of round earthers trying to convince them the earth is flat."
So where is that one paper where Burzynski clearly shows his antineoplaston therapy works as well as something Gleevec with the evidence being the results of one of his many clinical trials? Just give us the title, journal and date of the PubMed indexed paper with a direct quote.
How bloody rich playing the Galileo Gambit. Hey Mel, Burzynski will never convince his critics as long as he thinks bad documentaries and YooToob videos is doing science. He needs to act like a big boy and put his results out in the community to see if it can withstand scrutiny.
Aww, poor wittle Mel doesn't think that proof should be required and we should all mindlessly accept anecdotes because he did.
Yeah yeah it was in the movie, it must be twoo.
Science mom....Stop acting like a complete moron...
ARISTOTLE discovered the earth was round
GALILEO discovered the earth rotated around the sun
If you cant even realize the differnce between those two no wonder antineoplastons zoom right over your primative skulls...whoosh!
Wow, apparently even this documercial was presented above your comprehension level. The assertion isn't "infringement," you dunderhead.
This is very funny, Mel apparently doesn't know what the Galileo Gambit is, and thus has not the faintest clue what a fool she is making of herself here.
BY the way, who is making money form all those patents that were stolen from Burzynski? It looks to me as if the US government registered some patents on phenylacetates back in the day but abandoned them because they found they weren't much use.
Not really, no.
@Mel - so no evidence, I'm assuming, right?
And it is called the "Galileo Gambit" when someone tries to use a historical scientific figure (usually Galileo) to justify woo. Just because you decided to use Aristotle doesn't make it any less of a typical wooish attempt on your part to justify something with no actual evidence.
So, where are the studies, replicated research or proof? And why do you keep avoiding the question?
By the way, Mel, are you going to pony up the "FDA CLINICAL trial that charged patients $5000-18,000 per treatment cycle depending on which treatment track was chos" that "ran from 1994-2011"? Surely, this must be child's play, given that you don't have a "primative" skull.
Neat trick considering it was a concept prior to Aristotle's time and not even proven. Dumbass.
Um you might wan't to verify some things before you come out of the gate frothing like a nutbar. The Galileo Gambit is a debate fallacy which you attempted to use.
Oh you mean the way rhetorical technique completely eludes you jackhole? Happy to take the piss out of you. We'll see if that one escapes you as well.
Wow, Mel has raised her game today.
WHOOSH??
Hahahaha, if the improvements keep coming this quickly, IT (gender neutral enough for you?) will be able to take on 3rd graders in debate soon without embarrassing itself.
Let's run with that analogy, for a bit, and ask ourselves "Since it wasn't possible for Aristotle or others to give anyone a ride in a spaceship, how did people come to realize that the earth wasn't flat?"
Through the accumulation and dissemination of a significant body of evidence demonstrating this to be true.
No one here is asking Burzynskifor the equivalent of "a ride in a spaceship" as proof of antineoplaston safety and efficacy for treatment of advanced cancers but instead smething completely mundane: the same evidence which previously has convinced us of the efficacy and safety of of other drugs for other indications: results from appropriately scaled, designed and controlled clinical trials demonstrating efficacy.
He's been doing them for decades--why do you think he's unwillingly to publish the results?
The fact that his patents may have been infringed upon doesn't argue antineoplastons are safe or efficacious, only that someone else believes there's a profit to be made offering unproven treatments to desparate people at obscenely inflated mark-ups,
IIRC, Carl Sagan pointed out, "They also laughed at Bozo the Clown."
It's annoying that there people who assume being criticized, ridiculed, or persecuted is evidence of their correctness. It never seems to occur to them that wrong ideas are also criticized, ridiculed, and persecuted. The history of science is full of false ideas that rightly died out because of legitimate criticism.
But they're not interested in the possibility that they're wrong. Everyone tends to think they and their allies are the heroes of their own story, and a lot of people love the heroic "I told you so" when they turn out to be right in the end, and the critics get mud on their face. They're so emotionally invested in that narrative, it never occurs to them that they might still be stuck in the chapter where the arrogant apprentice ignores the warnings, makes a huge mistake, and humbly realizes he still has much to learn from listening to others.
That's one reason why I want my opponents to provide me with things like clinical studies. If I'm wrong, I want a clear demonstration so that I can learn. If they just give me textbook con artist rhetoric, they're only reinforcing my skepticism and arguably taking responsibility for my wrongness: They're omitting the information I told them I need to change my mind towards the correct conclusion.
As for proving the Earth to be round, you do that sort of thing with careful measurements under controlled conditions. Those measurements have to conform with your hypothesis's predictions more often than they deviate or conform to a competing hypothesis's predictions. I could search for the experiments done to prove the Earth's roundness and do them myself if I was skeptical. With some thought, I might even be able to devise my own experiment to test it. I don't have to just take someone's word for it, and I don't necessarily need blatant evidence.
The problem I have with Burzynski is that they typically ignore the known, parsimonious, alternative hypotheses offered by his critics, like placebo, confirmation bias, selection bias, other treatments that were used or likely used, and so on. They just want us to accept their interpretation and close our minds to more likely and more familiar possibilities because it's simple and easy.
1. Tu quoque
2. Cut, burn, poison/ cancer is not as terrible as we think, therefore no chemo
3. Nothing wrong with payments/ he has no money
4. Conspiracy
5. Any hope better than no hope
6. Not understanding the difference between a trial and a treatment
7. Continued distraction away from the lack of published evidence
8. Youtube link
9. Cancer testimonial website and/or newspaper article
10. Any deaths/growths in the tumour is because of past chemo treatments
11. Alternatively, take any credit for past chemo treatments
12. Brave maverick - mention Galileo, Aristotle, or any other ancient authority who happened to have *evidence* for their claims, despite Burzyinski - nor his fans - showing any of their own
Every time I read one of Mel's hysterical replies I keep thinking of that YouTube viral video that circulated a few years ago featuring a Britney Spears fan screaming "Leave Britney Alone!" Except this new version is Mel screaming "Leave Burzynski Alone!"
You all have may more patience than I do.
@Mel
So that's a no then for having evidence, and a yes for having yet more logical fallacies?
To continue from Narad: Er no. It was a hypothesis at the time, among many, but was largely ignored by science due to lack of observational evidence plus an unwillingness to let go of religious ideas (that the Earth was the centre of everything) and a continued emphasis on including false assumptions about our universe. Galileo worked on this hypothesis using previous astronomical records plus his own.
It helps to actually read about his work before mouthing off on this common trope. Or you know, reading the second paragraph on Wikipedia:
http://en.wikipedia.org/wiki/Heliocentrism
That Galileo is held up as the guy who went against the grain is pretty much proof you have no idea what you're on about. He was only one of a long line of people who 'stood on the shoulders' of those who came before; which is exactly what good science does. Collect a bit of data; propose hypothesis; debate; solve a tiny bit of the problem; repeat ad nauseum.
By the way: Galileo was right only because he bothered collect data and to publish his research, so that other people could see for themselves. And the only reason we remember him more than others is because he went out of his way to publicise himself *and* he was right.
Unfortunately Burzyinski does one but not the other.
EDIT:
Collect a bit of data; propose hypothesis; debate; test hypothesis; solve a tiny bit of the problem; revise hypothesis; repeat ad nauseum.
GALILEO discovered the earth rotated around the sun
Copernicus, Brahe, Kepler... their names are but written in the sand...
Did you guys see Orac's note about tomorrow's post? He's promising a special surprise for all the Burzynski trolls. Guess he's been following the comments over the past few days.
I can't wait for tomorrow! I feel like a kid on Christmas Eve!
ARISTOTLE discovered the earth was round
Parmenides, Empedocles, Necho II, Pythagoras, Plato... these names are unknown to Mel. Perhaps because they are not written in CAPITALS.
Every time I read one of Mel’s hysterical replies
Apparently it is spelled "hysteriacal".
I'm in no position to be pedantic about spelling today. I re-read my posts and am embarassed that most of them are riddled with typos. I'm in safe mode and can only see a small section of the screen, plus my Bluetooth mouse doesn't work in safe mode so I have to use the finger pad to scroll up and down. It takes a lot of scrolling to proofread.
Following this blog for awhile now and the slop never changes.
@Mel: stop casting your pearls of wisdom before these swine. They are like the tumors Dr Burzynski treats: rabid, malignant, stubborn yet eventually defeated.
@everyone else: Is Dr Dvorit Samid also a quack?
Dr. Dvorit Samid joined Synta as Vice President, Medical Affairs, in March 2012. Dr. Samid has three decades of oncology research and drug development experience including clinical development, launch and life-cycle management of drugs in lung cancer (Erbitux), breast cancer (Abraxane, Xeloda), and colorectal cancer (Xeloda). Her career spans academia (Associate Professor - University of Virginia Medical School), government (Section Chief â€" Differentiation Control, National Cancer Institute/National Institutes of Health Division of Cancer Treatment) and pharmaceutical industry (Head of Medical Affairs at Roche, ImClone and others). Dr. Samid holds a Ph.D. in Cell Biology from Catholic University of America in Washington, D.C., completed graduate studies in Biology at Technion Institute in Haifa, Israel and holds a B.Sc. in Microbiology from Hebrew University in Jerusalem, Israel. Dr. Samid has authored over 80 publications in oncology and holds 19 patents.
-------------------------------------
11 of those 19 patents belong to none other than Dr Stanislaw Burzynski.
For example: http://patft.uspto.gov/netacgi/nph-Parser?Sect1=PTO1&Sect2=HITOFF&d=PAL…
A simple patent search at patft.uspto.gov will list them all
no wonder antineoplastons zoom right over your primative skulls
Let's have less of the anti-Neandertal trash-talk here. Do I go around sneering at you Cro-Mags for your puny little brow-ridges? NO I DON'T.
In a golden stream of urine...
You think Penn & TEller have ever heard of Burznski?
Wouldn't that be a great subject for their Bullsh!t show?
They'd already done other quackery, like faith healing. And they love anything to do with consumer fraud.
... Should I even point out that the Earth revolves around the Sun, and rotates around its axis?
... nah, you're right. That's just a mistake in terminology; it pales next to thinking "A YouTube video claims it; it must be true!!"
Collect a bit of data; propose hypothesis; debate; test hypothesis; solve a tiny bit of the problem; revise hypothesis; repeat ad nauseum.
What Sam Beckett wrote. "Fail again. Fail better."
FTFY
This time for sure:
@HDB
Yep, that's the more concise way of putting it alright ;)
Mel,
Late reply, but I've been very busy at my day job.
There's a different between a profit margin and what Burzynski does. If I told you that you should fill your prescription at my pharmacy, didn't tell you exactly what you were receiving, and sold you Advil for $100 a bottle when you could easily have gotten it at the drugstore for a fraction of that, wouldn't you be pissed off? That is analogous to what Burzynski does. In addition to his antineoplastons, he takes approved pharmaceutical, marks them up many times more than what the manufacturers recommend, many more times than other pharmacies in the same town would sell it at, and then strongly encourages his patients to use *his* pharmacy, without really telling them what it is they're getting (likely so it's harder for them to realize they're being soaked).
I look forward to seeing the Burzynski Clinic finally go out of business. Too many victims of these criminals.
Cancer = $greed$.....there will be no cure
@Newsflash
Did you have anything substantial to add, or are you just unoriginal?
@newsflash
You do know that there is more than one type of cancer, right? Or did it get lost in your pathetic attempt at the pharma shill gambit.
I seem to be missing the part where this points somewhere other than directly at Burzynski.
@Newsflash: in your opinion, who exactly is in on the conspiracy to ensure that "there will be no cure"? Sample answers: "all doctors everywhere", "all doctors in U.S.", "all oncologists everywhere", "the FDA and CDC", etc.
Cancer, however, does not equal greed. Can developing, producing and marketing treatments for injuries and illness be profitable? Fortunately, yes--otherwise it would be impossible to attract investment to fund what is inherently an extremely high-risk enterprise (can you name another industry where the cost of product development is measured in tens if not hundreds of millions of dollars while you can expect 90% of all prospective products will fail in development and never reach the market?)
The idea that every scientist in the world (commercial or academic), every nurse, every physician in the world, every private or government regulatory agency and watchdog group, the National Health Institute, the World Health Organization--in effect every single individual involved in helth care on the planet--are part of some vast conspiracy to conceal a cure for cancer or impede the discovery of cheaper, safer, more effective treatments for cancer for presumptive monetary gain is just, well...
'Insane' is the only word that comes to mind.
well, rehyal radiation and chemotherapy kills mucuh more peoplee but no one blame doctors for that. burzynski gives somee hope to people while regular mediciine gives no hope at all. and why you havent tell your readers abour cuccess cases? actually, what person is doing with her body and what treatment is chosing is only her busines, and none of yours. burzynski treatmentn has better survival rates than any other, well maybe excluding gerson therapy. problem with blogers like you is that you want to take all the hope from people. and you know s**** about human body. so, take your toys and go home.
Unfortunately, Amelia Saunders died on 6th January. The posts written by her family about her journey, which included visting the Burzynski clinic, are quite heart rending. It is here for all to read.
http://www.facebook.com/ameliasmiracle
@Claire
Orac wrote about that news here. Truly sad what the family went through and how Burzynski took advantage of them.
@Todd W.
I am new to this blog and only discovered the news you mention once I'd read all the comments in this thread and posted here!
I think what is sad is that people everyday are charged thousands and thousands of dollars for approved treatment, but we hear nothing of that. It's sad that ANY family has to pay thousands of dollars, no matter WHERE they get the treatment. A friend of mine, an 11 year old girl, who fought cancer for three years, who used chemotherapy from the 1970's, died this year. Her parents paid the tune of 93,000 per round of treatment for this, approved by the government treatment. There is no difference or need to argue about money being thrown at one place or another. We need to be focusing on what works, and not every ONE things works for EVERY person...there has to be options out there, and people should be able to pick their course. The government controls way too much, and unfortunately, they are in the business of making money. We've made leaps in bounds in so many areas of science, how is it that we are still so VERY VERY medieval with cancer treatment (and food approved to be on our shelves!!!!)