Two more tragic tales of Burzynski patients

One of my newer blogging interests is the "alternative" cancer doctor named Dr. Stanislaw Burzynski. Although I had heard of him years ago, mainly in the context of his desperate patients tapping into the generosity of kind-hearted strangers to pay for his "antineoplaston" therapy, I hadn't really written much about him until very recently. About six months ago, Burzynski came to my attention because of his clinic's use of an Internet legal thug named Marc Stephens, who threatened skeptical bloggers with legal action after they had criticized the Burzynski Clinic and then later disavowed him in apparent embarrassment with a classic not-pology. It was at that point that I posted a trio of articles about the dubiousness and lack of science behind Burzynski's therapy and his claims for it, starting with a deconstruction of antineoplaston therapy and Burzynski's propaganda movie, then moving on to a discussion of why his "personalized gene-targeted cancer therapy" is basically "Personalized Medicine for Dummies" incompetently administered with an "everything but the kitchen sink" approach to highly expensive targeted therapies mixed with chemotherapy, and finishing with how Burzynski has gravitated to overselling an orphan drug that shows mild promise in some cancers because it is a prodrug for one of his antineoplastons.

One thing I had been looking forward to after focusing my attention on Burzynski was his hearing before the Texas Medical Board. It was originally apparently scheduled for January 2012, but then apparently delayed to April 11, 2012. Unfortunately, it's been delayed again. Although it looked as though Burzynski might slither away from justice again, what I've learned is that there has simply been a continuance. There will be more legal wrangling, and eventually there will be a hearing. It can't come too soon, but unfortunately Burzynski continues to practice during the months of delay.

The thing that bothers me the most about Burzynski is how he offers false hope to patients with terminal cancer at a cost of tens--or, commonly, hundreds--of thousands of dollars. He offers his antineoplaston therapy under the auspices of clinical trials, but then requires that the patient pay exorbitant sums of money for drugs and treatments, even though requiring patients to pay to be in clinical trials is considered dubious at best and highly unethical at worst. These patients, desperate to grasp at what they perceive to be their last chance to live, then do all sorts of desperate things to raise the money, often including all sorts of fundraisers. Indeed, what piqued my interest was the reaction to the case of Billie Bainbridge, who raised loads of cash because various British celebrities took an interest in her case and participated in concerts for her charity. Meanwhile, Burzynski claims that he has higher success rates than conventional medicine, that he doesn't use chemotherapy (he does), and that his therapy is nontoxic (it isn't; it's quite toxic), selling it through interviews with credulous quackery promoters like Suzanne Somers. Elsewhere, on various patient discussion forums, Burzynski shills make it sound as though Burzynski is the only one who can save patients with stage IV cancer.

He ain't, and he can't.

As a reminder of this, I take note of the sad fate of someone I've written about before, a young woman named Kelli Richmond. Unfortunately, Ms. Richmond passed away a week ago:

For more than a year, Kelli Richmond shared her journey battling stage 3 ovarian cancer with The Advocate's readers. On Wednesday, she lost that battle at the age of 30 with her family at her side.

Richmond's faith was part of the armor she donned for this battle.

The news story, surprisingly, is fairly blunt:

One month after celebrating her 30th birthday this past January, a scan revealed more cancer. Her doctors gave her the news that the cancer was untreatable. Unwilling to admit defeat, Richmond sought holistic treatment at the Burzynski Clinic in Houston. It proved a futile effort.

Unfortunately, Ms. Richmond was one of Burzynski's patients who was desperately trying to raise $50,000 for treatment at the Burzynski Clinic. It's truly sad to think that Ms. Richmond spent so much of her short time furiously scrambling for cash for a therapy that was almost certainly useless.

Similarly, there is child named Olivia Bianco whose parents chose Burzynski and have been raising money to take her to the Burzynski Clinic, producing this glowing report:

After spending five weeks in Houston at the Burzynski Clinic, training my parents how to administer this new antineoplaston IV treatment, I am now home on Maui. I am hooked up to this IV pump twenty-two hours a day seven days a week but at least I can continue this treatment at home with my family, friends and puppy Snowball here in paradise. I am happy to report that everyday I am getting stronger and my speech is coming back. And yes, I am able to tell my parents I love them, many times everyday and that makes them sooo happy. I'm not stopping there though, I plan on walking again in due time and I can't wait to return to school. I'm going to beat this dreadful disease called cancer. I will NEVER EVER GIVE UP!

My parents tell me I am going to be that little miracle girl and they can't wait to take me back and show those doctors to see the looks on their faces and watch them shake their heads in disbelief. If you would like to be a part of TEAM OLIVIA and this miracle any donations would be greatly appreciated. Unfortunately Kaiser will not cover any of these medical costs because they are considered alternative treatments, which they do not recognize. All of my current treatments will be out of pocket, totaling approximately $10,000 per month. $7,600 per month for the clinic and additional lab work three times a week, monthly private doctors exams and any diagnostics needed. Please please pray hard for my healing because I know all the prayers are helping. There is nothing stronger than the power of prayer. I can't wait to meet you all someday. Thank you and God bless.

That was the hope. This is the reality:

On behalf of Olivia Bianco and her family, we wanted to take the time to say mahalo for your support over the past year and to update you on Olivia's health during her battle with brain cancer.

Olivia was diagnosed last February with Medulloblastoma and was treated for four months in Santa Clara, California. She was able to come home to Maui in July for Home Hospice. Her family decided to try some alternative treatment with Dr. Burzynski in Houston, Texas. Olivia was getting stronger, taller and her speech was improving. She is such a joy to be around! We all knew she was going to defeat the odds and beat this ugly cancer.

In February, Olivia had an additional MRI, and the results were not as we hoped or expected. The cancer had spread pretty drastically. Both the doctors at Kaiser and Dr. Burzynski concurred to discontinue treatment to allow Olivia to not be attached to tubes and IVs and just enjoy her life. Olivia and her family have been doing just that.

Later in the letter, the Biancos write:

Both Momoko and Alex have again taken a leave of absence from work and are spending all their time caring for Olivia. This is basically financially impossible without friends and the community pitching in. So, we are humbly seeking additional donations to assist Olivia and her family, so they can spend this time with their daughter. Monetary donations can be made payable to Alex Bianco and sent to: Friends of Olivia Bianco, P.O. Box 12661, Lahaina, HI 96761.

It's a shame that all that money the Biancos raised before went into the black hole that is the Burzynski Clinic, all to no effect on the ultimate sad outcome. They could have used that money now, near the end, when Olivia needs them the most. That is but one of the costs and consequences of Burzynski's activities. I can only hope that people still have sympathy and are willing to donate; a dying little girl needs her parents by her. My only surprise here is that apparently Burzynski showed a modicum of humanity here and admitted defeat. His usual pattern is to make claims that the tumor's increase in size means that the therapy was working because the tumor is "swelling" while the person undergoing treatment suffers significant side effects.

I also have to wonder how long Kelli Richmond and Olivia Bianco will be used as post-mortem ads for the "success" of Burzynski's antineoplaston therapy.

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I applaud your continued attention to Burzynski's dubious (to say the least) medical practice.

Nit: This sentence "Elsewhere, on various patient discussion forums, Burzynski shills make it sound as though Burzynski is the only one who can save him." should end with "the only one who can save them."

By Chris Winter (not verified) on 10 May 2012 #permalink

Ugh.

I was heartened to read this week that another girl in the UK whose parents were fundraising to take her to the Burzynski 'clinic' have decided not to, as they received an additional diagnosis for her. However they say they are still planning to take her (and possibly her brother) abroad to other gene therapy clinics: I hope these clinics are conducting genuine research and not as obviously useless as Burzynski is.

His usual pattern is to make claims that the tumor's increase in size means that the therapy was working because the tumor is "swelling" while the person undergoing treatment suffers significant side effects.

<facepalm>

Growth is what defines a malignant tumor as being malignant. Making this claim puts Dr. Burzynski firmly in woo territory, erasing any possibility that he might have been merely misguided (as if his practice of charging patients hundreds of thousands of dollars each weren't evidence enough of that point).

By Eric Lund (not verified) on 10 May 2012 #permalink

Another sad story which shouldn't be overlooked: http://adventureandhope.blogspot.com/ - this patient blog details the chemo drugs that were prescribed as well as the ANP treatment, and the difficulties faced both in terms of cost, and side-effects. There are several heart-breaking blogposts, and the patient in question was also not cured by Burzynski.

I can't help but wonder how much the anti-SBM forces' derision of the 'cancer industry' and pharma though their many diatribes, 'documentaries' and "investigative reports" influences people to even *consider* creatures like Dr B as providers.
Take a bow, Mike Adams, Gary Null, Dr Mercola, Suzanne Somers, Tim Bolen!

By Denice Walter (not verified) on 10 May 2012 #permalink

Don't forget the sad story of Laura Jo Hofsess, another of the prominent success stories on the Burzynski Patient Group website.

She went to Burzynski with

Stage 4 Adenocarcinoma of the Lung, with metastasis to the spine, lymph nodes, and 42 lesions in the brain....CEA tumor marker level was 41.9.

And even under these grim conditions Stan agreed to take her money and "treat" her.

She died about two months ago.

http://coquille-today.com/2012/03/30/a-celebration-of-life-will-be-held…

The last lines of the obituary mention that the family's faoundation is seeking donations to send to Burzynski so he may continue his "research".

Luna Petagine's family admit that their daughter would have died if she continued on Burzynski's goop. Even Stan agreed it would be best to stop treatment. She's now back home in the UK at Great Ormond where doctors are working to reverse the damage done in Texas.

In New Zealand, Jesse Bessant's last two MRIs show his brain tumour first increased in size, then stayed about the same. The parents are heralding this as a huge success.

There are other stories that are so accessible thanks to blogs and Facebook pages.

By Marc Stephens … (not verified) on 10 May 2012 #permalink

My husband's beautiful niece was told there was nothing more that could be done to stop her cancer, just as she came into a small inheritance. Instead of spending the money on painful, futile treatments, her husband chartered a plane and took her, her siblings, and their spouses on one, last, live-it-up-til-you-die blowout vacation at their favorite Mexican resort.

Perhaps it was a frivolous use of the money, but it left her family with cherished memories of that last, happy time together. For the comfort it gave her family, I think it was money well spent.

By hoary puccoon (not verified) on 10 May 2012 #permalink

@#6 Hoary p.

Sounds like it was well spent indeed.

Here we have two of Burzynski's patients (Kristie Gibbs and Nadyne Missler) whose pleas for funds for treatment at the Burzynski Clinic, are on the Setting Them Free. org website:

http://settingthemfree.org/patient-profiles/kristie-coe/

http://settingthemfree.org/patient-profiles/nadyne-missler/

And, here are their obituaries:

http://www.legacy.com/obituaries/news-journal/obituary.aspx?n=kristie-s…

http://obits.dignitymemorial.com/dignity-memorial/obituary.aspx?n=Nadyn…

Orac, after your last Burzynski article I wrote a rather pointed editorial to the Hartford Courant, which published the entirely uncritical account of a Connecticut woman receiving treatment at the Burzynski Clinic. It was published on May 1--I don't imagine it's going to reach too many folks, but when I read stories like this it makes my blood boil. Thanks for fighting the good fight.

Rory, could you link to your editorial. I searched the HC site but only the original story came up.

By Kelly M Bray (not verified) on 10 May 2012 #permalink

Kelly M. Bray:
At the HC site go to the Letters section, search "Burzynski" and it's right there.
Very good letter, BTW. Concise and direct. Thanks, Rory.

lilady,

Is there any evidence that either of these two women actually went to Houston, or were they just trying to raise the money? Neither obituary mentions Burzynski, so either they didn't get there or they weren't too happy with him. Neither woman's name shows up on the BPG list either.

I noticed that Nadyne Missler also followed Robert O. Young's "alkalyze your blood" pH nonsense. (Why can't people understand that you cannot change the pH of your blood? But that's another story...)

By Marc Stephens … (not verified) on 10 May 2012 #permalink

As I frequently inquire in response to these sorts of tales, where are the lawyers? Where are the prosecutors? As far as I'm concerned this is fraud, and it should be subject to lawsuits from the victims and criminal prosecution. Why doesn't it happen?

Maybe the waiver patients sign limits any action against the clinic. Apparently it's read out loud to incoming patients as well as presented in document form to avoid any "future misunderstandings", as in "they never told me..."

I don't know how the law works in the US, apart from having read John Grisham novels, but you'd think a lawyer could put together a class action suit from all the disgruntled patients and/or their surviving family members.

If an ambulance chaser lawyer can find dozens of masseurs willing to testify against John Travolta, you'd think a legitimate attorney could assemble quite a nice group of people looking for damages from Stan. I imagine they'd have to be from the US, in order to file suit in the US. I'm sure some of Stan's UK and Australian patients would like in on that lawsuit too.

By Marc Stephens … (not verified) on 10 May 2012 #permalink

In March, I came upon another example of what might count as Burzynski treatment failure:

A supposed "non-Hodgkins lymphoma survivor" who has been featured at the Burzynski Patient Group Web site and who appeared on screen briefly in the Burzynski movie (released in 2010) to confidently attribute his recovery to Burzynski treatment died in 2010 of cancer complications. See http://bit.ly/H5g

Technically, you can change your blood PH; however you'll probably die.

By dedicated lurker (not verified) on 10 May 2012 #permalink

WML,

Your link didn't work but I think you're talking about Neal Dublinski. I posted a comment about him on another RI thread. He did live for over 20 years after Burzynski so his defenders can claim that as a victory. But from what I understand the success rate for non-Hodgkins is fairly high using conventional treatments, so who knows what role Stan really played?

By Marc Stephens … (not verified) on 10 May 2012 #permalink

@ Marc Stephens: I located a few Facebook pages about fundraising levels for Kristie Coe to undergo treatment at Buzynski's clinic...and now fundraisers set up for her children's welfare, after her death. I'm unable to find any websites about her "progress" while undergoing Burzynski's treatment plan.

There is even less information about Nadyne Missler. I knew you would "pick-up" on the quack diet she followed:

"At that time, I was surprised and realized that the chemo was a temporary fix. I began researching other alternatives. A friend worked at Dr. Robert Youngâs Ranch â he had me read and follow The pH Miracle plan by Dr. Young. I began seriously eating to keep my blood and body alkaline. I became a vegetarian (not vegan)."

I wouldn't expect that either dead patient would be *featured* on Burzynski's patient testimonial website.

@ cervantes: Perhaps the reason why patients and their families are not suing Burzynski, is because many of them are still enamored with him. One patient from Florida did sue him to recover the money he stole, when he used her credit card to pay for *traditional* chemotherapeutic drugs at jacked-up prices, ordered through his free-standing pharmacy:

http://scienceblogs.com/insolence/2012/01/more_trouble_for_dr_stanislaw…

Perhaps the reason why patients and their families are not suing Burzynski, is because many of them are still enamored with him.

Bingo. One of the hallmarks of a good con artist is that his victims never know they're being fleeced. (See Madoff, Bernie: the first clue his victims had was his admission to the SEC that he was up to no good.) Orac's posts about Burzynski, while showing plenty of evidence that Burzynski is not a good physician, also show plenty of evidence that Burzynski is a good con artist.

By Eric Lund (not verified) on 10 May 2012 #permalink

I would still love to see one of the consent forms for any of Burzynski's current clinical trials that patients are supposed to be enrolled in. If anyone comes across a copy, mind shooting me a quick e-mail (available via my blog - linked in name).

@ Eric Lund: Reading from Burzynski's patients *testimonials* and fundraising sites, I see that these patients (in all instances?), have been told by their oncologists that their cancers are in advanced stages and/or incurable.

Who can blame patients, given these ominous prognoses...or their families...for seeking a *cure* from Burzynski? I suspect that Burzynski has perused potential patients medical records...and refuses to see patients who may have a good chance for remission...not a cure...with some additional *traditional* treatment.

@ Todd W: How about this...

http://www.centerwatch.com/clinical-trials/listings/studydetails.aspx?S…

"Trial Information

Phase II Study of Antineoplastons A10 And AS2-1 In Patients With Carcinoma Of The Adrenal Gland

Study the safety and possible effectiveness of antineoplastons in patients with incurable carcinoma of the adrenal gland.

Describe the patients' response, tolerance to, and the side effects of this regimen."

@lilady

Interesting, but not quite what I'm looking for. That is just an advertisement for a trial. What I'm seeking is the actual consent form that subjects and Dr. Burzynski must both sign before they can be enrolled in the study.

I don't think anyone is blaming the patients for seeking a cure, butcondemning Burzynski for offering them false hope at extraordinary prices.

I don't think Brzynski would refuse to enroll patients with good prognoses for remission following standard care. if anything I think he'd find such patients most appealing, since if they do go into remission after receiving some mix of standard chemo and antineoplastins he can claim it was the antineoplastins that saved them.

We know of several patients and their families who are displeased with Burzynski's treatment. I'm certain there are more people "out there" who have read this blog and other blogs that have labeled him as a quack...yet none have come forward to provide a copy of the "Consent to Treatment" form that they signed. Why?

Did they all sign the consent form and not ask for a copy of it for their records? Is there a collective reluctance to come forward to admit they were scammed? For those who asked for...and who fundraised...to have the treatment, is there shame for using the money for bogus cancer treatment?

@ Todd W: The actual consent form is the "Holy Grail" of the science blogging world.

I'm wondering about the future of his clinical trials. PhasE -- trials address basically safety. At some point he is going to havew to address efficacy in a valid fashion. That means he is going to have to compare conventional treatment against conventional + neoplastins, righty? Or will he put up just neoplastins? Because he certainly can't run neoplastins vs placebo.

So to what extent is he qualified to administor modern stayte-of-the-art chemo/radiation? Does he have the oncology qualifications to pull off a legitimate trial?

Could that be the reason he is stalling the onset of his phase 3 trials?

By Marry Me, Mindy (not verified) on 10 May 2012 #permalink

This story about Andy Cayon of Connecticut was just posted by Josephine Jones on The 21st Floor blog. It's old, from 1997, but makes a point. I hope Burzynski's doctors have learned how to read brain scans by now.

http://articles.courant.com/1997-01-12/news/9701120070_1_brain-tumor-st…

Every month for six months, Burzynski showed Andy pictures of his brain and told him the tumor was shrinking. In October, Burzynski shook his hand and pronounced that the tumor had decreased by 84 percent. Andy was elated.

A month later, with a Hartford television news program documenting his story, Andy returned to Houston, where Burzynski noted more progress.

Andy was suspicious. In the waiting room, he had seen a report from the independent lab that interpreted his brain scans. All it said was the tumor was stable, no recurrence. But Andy still wanted to believe.â

The Burzynski clinic were misreading the scans.

âThey were not measuring the tumor, they were measuring the hole where a portion of the tumor had been removed. What they saw as a shrinking mass was actually the healing from the surgery. The remaining tumor cells were just where Lantner had left them.

Andy and Allison were devastated. It was a day before Thanksgiving. âIt was like we were back in May, it was like six months wasted,â Andy said.

First, they felt betrayed. Burzynski had offered hope. Now, they realized it had all been an illusion.

He started calling the clinic demanding answers and a refund. Burzynski and other clinic doctors told him to get a second opinion. They have since stopped taking his phone calls.

Dean Mouscher, director of clinical trials for the clinic, said Saturday that Burzynski still contends that Andy was doing well on the treatment and should have continued it.

But even if it turns out that the treatment failed, Mouscher said, Andy went into it knowing there were no guarantees.â

Andy died in 2000. This is from the story the Hartford paper ran after his death:

`Cayon paid $30,000 from retirement savings and donations to the Texas doctor for his controversial treatment. The doctor, who had raised the Cayons' hopes with brain scans showing that the tumor had shrunk, had been reading the scans wrong. The tumor was actually growing.

Cayon returned to conventional treatment. He also decided to enjoy the time he had left.

By Marc Stephens … (not verified) on 10 May 2012 #permalink

@lilady and Todd W

with regards to the consent form, I'll admit to being curious as well.

I'll admit to little/no legal knowledge, but if the clinic had not lived up to their part of the bargain, wouldn't that render any contract null and void? Or is that why it's a 'trial'? So that he's not accountable.

There has to be a way to shut him down. Is there some sort of 'consumer watchdog' that he could be reported to for false advertising?

The consent form specifies no guarantees, so that's pretty much a "CYA" for Stan.

There have been a few disgruntled Burzynski patients that have posted here over the past few months. If one of them is reading this now, can you tell us if you kept the consent form or is it taken back and put in a file somewhere? If you did keep it, can you post a copy somewhere?

By Marc Stephens … (not verified) on 10 May 2012 #permalink

Roses are red,
Violets are blue.
This much we know:
Stan B can't cure you.

Hi everyone, Just asking aren't there people that have actually benefited to his treatment? His care isn't a hundred percent, but supposedly better than conventional. Why does Dr. Oz showcase him then. Sorry if a am a newbie.

Why does Dr. Oz showcase him then.

Dr Oz showcases all sorts of quacks and charltans. Being "showcased" by Dr. Oz is a good indication of quackery rather than a sign of credibility. Oz use to have people do Reiki over the patient during heart surgery. Like his mentor Oprah Winfrey Oz doesn't care whether or not something is true, all he cares about is will it get him good ratings. In his business (commercial television) attracting an audience of the credulous and gullible is desirable for sponsors, since such an audience is more easily manipulated into buying overpriced crap.

By Militant Agnostic (not verified) on 10 May 2012 #permalink

@ Skeptic:

Because Dr Oz uses his position irresponsibly: he is well educated and could inform people about science and medicine to their advantage but instead, he takes the low road by allowing nonsense on the air - on his own show- and NOT de-bunking it: rather, he tolerates the swill people like Mercola broadcast there. If it's discussed under a *doctor's* auspices, audience members are mis-led into thinking that these approaches are perfectly acceptable.

If I counselled a student and he or she asked me if taking vitamins would help their recall for a test, I would be irresponsible if I said yes or nothing at all, while I know perfectly well that that idea is not true. I would *have* to say something. Oz doesn't speak out when woo-drenched myths are elaborated on his show. What I say affects a much smaller number of people than what he says.

By Denice Walter (not verified) on 10 May 2012 #permalink

@ meg: Patients and their families...for the most part...believe that Burzynski and his clinic did fulfill their "end of the bargain".

He only takes patients who have failed to achieve a sustainable remission...they are in advance stages of cancer. (Re-read the links to patient consent forms that I provided at # 22 and #24)

Patients willingly sign a contract that does not promise any cures or any remissions. There are two qualifiers to begin treatment at the Burzynski Clinic:

-You are terminally ill

-You come up with hard cash for the *treatments*

And woe is you if you don't have the hard cash.

By Kelly M Bray (not verified) on 10 May 2012 #permalink

@12:
"Why can't people understand that you cannot change the pH of your blood?"

But OF COURSE you can! If you want PH to go up, fill a syringe with bleach and inject it into your veins. If you want it to go down, fill the syringe with hydrochloric acid.

Just follow these simple instructions, and it's a CERTAINTY you won't die of cancer!

David N. Brown
Mesa, Arizona

Denice Walter @35

he tolerates the swill people like Mercola broadcast there

I had a little trouble parsing that - did you mean the that people Mercola and his ilk broadcast "swill" or are you placing Mercola in the class of "swill people". Both make sense, but I prefer the latter, since I think Mercola would be more useful as food for pigs than he is in his current occupation.

By Militant Agnostic (not verified) on 10 May 2012 #permalink

@Kelly M Bray

And woe is you if you don't have the hard cash.

Woe is you either way seemingly.

And woe is you if you don't have the hard cash.

Actually, people are better off not coming up with the cash to endure Burzynski's quackery.

His care is "supposedly" better only according to him, and even he won't produce evidence to support that. If Burzynski's care really is as good as he claims, he is lacking in even the basics of empathy. A good person who had a cure for cancer, or for a specific cancer, would publish the data and encourage other doctors to use his techniques to save lives.

@Eric Lund -

Growth is what defines a malignant tumor as being malignant.

In fact so-called benign tumors share the characteristic of growth. Some benign tumors can be harmful or fatal if untreated due to local mass effects or metabolic effects, but they often aren't.

In general malignant tumors tend to grow faster than benign tumors, but that is not always the case. Some benign tumors grow faster than some malignant tumors.

The true hallmarks of malignancy are invasion and metastasis.

Also, with very few exceptions, benign tumor cells recapitulate normal differentiation far more than malignant tumor cells. Abnormal differentiation is a major part of how "in situ" malignancies, which haven't yet invaded or metastasized, but are at a high risk to, are recognized (a very useful process, as these can be eliminated by surgical removal before they become invasive).

(Also, in the special case of tumors of circulating cells, such as leukemia and lymphoma, invasion and metastasis don't have the same meaning, as the normal cells the tumor cells descend from already circulate anyway. That is a more complicated topic.)

I hope I don't come across as pedantic here, I just thought this information might be interesting.

I strongly agree with the negative comments about Burzynski here, of course.

@skeptic -

Hi everyone, Just asking aren't there people that have actually benefited to his treatment?

Is there any solid evidence that anyone has benefited specifically from his treatments? I don't see any. If you have some, I'd like to see. In advance, let me tell you that I would prefer to see published peer-reviewed results of a double blind clinical trial. Don't tell me "the medical establishment is covering it up" because Burzynski claims to be running a clinical trial. He's charging people a great deal of money to enroll in a clinical trial, so he must think it is worthwhile to run a clinical trial, right?

Lacking that, I would like to see some very well documented high quality anecdotal case studies. That would mean seeing independent radiology, pathology, and clinical data documenting that case report patients had in fact been correctly diagnosed with poor prognosis cancer unlikely to be successfully treated by conventional means, documentation of exactly how the patients were then treated by Burzynski, and subsequent documentation of both unexpectedly long survival and remission, reduction, or unexpected stabilizing of tumor burden, documented with independent radiology and pathology reports. This would not be difficult to produce, if, in fact, patients were benefiting from the treatments.

His care isn't a hundred percent, but supposedly better than conventional.

What do you mean by "supposedly"? What evidence do you have to back up that statement?

Why does Dr. Oz showcase him then.

Because, in my subjective opinion, Dr. Oz often "showcases" worthless things.

Sorry if a am a newbie.

Newbie or not, given that you are a skeptic, I am surprised that you didn't think of some of this yourself.

Just asking aren't there people that have actually benefited to his treatment? His care isn't a hundred percent, but supposedly better than conventional.

That "supposedly" in there gives you your answer. If you look for actual evidence that Burzynski's treatment is better than conventional treatment, it simply doesn't exist.

Burzynski supporters will proffer individual patient testimonials, and they think that's evidence that Burzynski's treatment is better than conventional treatment. But that's like the parent of a Little Leaguer saying "See? Here's video of Johnny hitting a home run! Here's video of Johnny hitting another home run! Here's video of Johnny hitting yet another homer! Obviously Johnny is a better batter than Babe Ruth was!" Obviously that parent's mouth is letting his excited desire to believe run way ahead of the actual facts. How many times did Johnny go up to bat? If Johnny hit three home runs, but those were the only homers he hit out of 30,000 times at bat, that's not better than Babe Ruth.

So in order for us to really believe that Burzynski's treatment outperforms conventional treatment, we would need evidence, and evidence better than just isolated testimonials. Properly conducted FDA trials would give us some of that evidence. But Burzynski has been stretching out the FDA trials of his treatment for over thirty years. Why would he do that if his treatment was actually better than conventional treatment?

By Antaeus Feldspar (not verified) on 11 May 2012 #permalink

@Mark #30, wow, now that I'm seeing that the Hartford Courant had already done a story on Burzynski being a load of crap, I'm even more angry that they gave him a pass in their recent story. I can understand the reporter not wanting to dig into a lot of Google-based biomedical research for what was essentially a feel-good local story, but you'd think that the reporter would at least take two seconds to check the paper's own indices, given the plausibility of a brave maverick doctor in Texas magically curing cancer.

You can sign away your right to sue, but in most cases it can be challenged for various reasons: http://answers.google.com/answers/threadview?id=583307

If I were in that situation I would surely talk to an attorney.

One reason why people don't sue is that they're ashamed to have been taken advantage of in such an ugly way. It's almost easier to go on denying it, even to oneself.

Rory:

Quelle coincidence! When I posted the link to the '97 story I didn't even make the connection it was from the same paper you were posting about. I just thought it was germane since it showcased Stan's incompetence in reading MRIs and how it cost a patient.

I re-read the cheerleader story: I find it interesting that Stan's son Greg, the newly-minted doctor (he only got licensed last year) is already "overseeing" such serious, critical patient cases.

Also, I assume if the reporter checked his own paper's archives and was aware of the previous story, he didn't want to "harsh" the good vibes and deflect attention away from the cheerleader.

Stan is probably positioning his son so that if (when!) he loses his license Dr. Greg can seamlessly step in and continue to run the clinic. That way they won't have to set up shop next to the Clark zapper clinic in Tijuana.

Speaking of newspaper archives, this is MUST reading for any Burzynski-watcher. It's the famous interview where he calls the reporter a "shit" with a "little brain" for daring to question him. It really illustrates how deranged he is.

http://www.houstonpress.com/2009-01-01/news/cancer-doctor-stanislaw-bur…

In case you don't feel like reading it all, here is the salient part. This paper certainly didn't give Stan a free pass. Listen your little brain to this:

"I have the right to do whatever research I want, okay?" he says, followed closely by, "I spent 42 years practicing medicine, doing research, and you are little man for asking such question, okay? Maybe in three years I get Nobel Prize, and you'll look like a shit, okay, asking me such stupid questions, okay?"
The Press explains that the reasoning behind the questions is this: Is Burzynski convinced that he's done everything possible to get antineoplastons federally approved, and thus covered by insurance, thus giving a chance to those dying children whose parents can't afford the steep payments? But when pressed as to why â even after the prolonged litigation with the FDA â he still hasn't been able to prove his treatment's efficacy, he is equally offended.

"You know why?" he says. "Because I came to this country with $15 in my pocket, okay? Because I didn't speak English when I came to this country. I learned it by myself. And in order for me to do what I am doing now, I needed to establish a pharmaceutical company. I needed to establish the research institute, okay, from the scratch, okay? And I need to do all of this from my own money, which I am, okay? How many years it would take for you to do it if you come to the country [from] like, say, Afghanistan?"

The Press also asks why, if one of the biggest barriers to sharing a promising cancer treatment with the rest of the world is his language skills, he hasn't enlisted the help of English-speaking scientists.

Burzynski laughs that one off. "Listen your little brain to this thing: I came to this country with $15, okay? How can you enlist somebody, paying him $5 [out of] $15, okay?"

Which leads to one of the most troubling aspects of the Burzynski saga: Why have no credible oncologists stood up for him? Why don't oncologists regularly refer their patients to his clinic? Why aren't the greatest minds in medicine calling for the swift approval of antineoplastons?

If they are out there, the Press needs to hear from them. Burzynski obliges as best he can, throwing out the name of perhaps his biggest ally in medicine (using that term loosely). That is Julian Whitaker, an alternative medicine practitioner who claims to be "board-certified in antiaging medicine." That could be true â it's just a question of which board he's talking about. One thing is for sure: It's not the American Board of Medical Specialties, which is what most doctors are talking about when they say "board-Âcertified." The ABMS does not recognize "antiÂ-aging" as a medical specialty. When asked for the names of supporting doctors who don't have Web sites featuring "Rollback Savings!" on their lines of nutritional supplements, Burzynski eventually comes up with Bruce Cohen, a brain tumor specialist at the Cleveland Clinic. Cohen did not return calls.

By Marc Stephens … (not verified) on 11 May 2012 #permalink

@ Marc Stephens Is Insane:

Whitaker is a member of the American Academy of Anti-Aging Medicine ( A4M or AAAAM- see website) and is thus certified by that body: which, in turn, is a member of the World Anti-Aging Academy of Medicine ( WAAAM - see website)** which in turn lists dozens of affiliate members, organisations, medical societies and educational institutes ALL OVER THE WORLD. I know a lot about these folks.

** unfortunately the British groups called themselves BAAMA and BSAAMA- or we'd have... WAAAM, BAAAM .... etc.
- doesn't work for Brazil either. I already checked.

By Denice Walter (not verified) on 11 May 2012 #permalink

Denice,

So it's all quackery, from what I read. They made up their own "board certification".

When I read a bit about Whitaker some red flags popped up, and sure enough, he's a $cientology doctor. One of my other "hobbies" is $cientology-critic, so it's cool when the world of woo and L. Ron's cult intersect.

By Marc Stephens … (not verified) on 11 May 2012 #permalink

A good person who had a cure for cancer, or for a specific cancer, would publish the data and encourage other doctors to use his techniques to save lives.

In fact, I believe he has patents on most of his crap (someone correct me if I am wrong), and would have a strong case for IP even if not.

So if it works, why not publish the findings, so that the stuff can be manufactured, and widely used by other physicians? Saving lives and making himself a rich man.

If he's invented new cancer drugs that work, why can they only be used in Houston? Makes no sense at all.

One reason why people don't sue is that they're ashamed to have been taken advantage of in such an ugly way.

Also, they're dead.

By herr doktor bimler (not verified) on 11 May 2012 #permalink

Funny that you people don't say peep about the track record of your conventional treatments for these cancers and the hundreds of thousands of dollars patients shell out for those prior to dying.

Marg, we also didn't talk about how green curry works well with tilapia. In both cases, it was an area completely irrelevant to the article at hand.

By Gray Falcon (not verified) on 12 May 2012 #permalink

harold @52

If he's invented new cancer drugs that work, why can they only be used in Houston? Makes no sense at all.

It probably has something to do with how lax the regulations are on fraud or corrupt the court system is in that neck of the woods. The Republicans have been in charge for a long time there.

By Militant Agnostic (not verified) on 12 May 2012 #permalink

Gray Falcon, I beg to differ. Oncologists railing at Dr. Burzynsky is merely a case of the pot calling the kettle black given the failing grade that chemotherapy has been given in the paper "The Contribution of Cytotoxic Chemotherapy to 5-year Survival in Adult Malignancies", written by three oncologists and published in the Australian journal Clinical Oncology.

Here is a summary: http://www.icnr.com/articles/ischemotherapyeffective.html

And an excerpt from the summary:

"Their meticulous study was based on an analysis of the results of all the randomized, controlled clinical trials (RCTs) performed in Australia and the US that reported a statistically significant increase in 5-year survival due to the use of chemotherapy in adult malignancies. Survival data were drawn from the Australian cancer registries and the US National Cancer Institute's Surveillance Epidemiology and End Results (SEER) registry spanning the period January 1990 until January 2004.

Wherever data were uncertain, the authors deliberately erred on the side of over-estimating the benefit of chemotherapy. Even so, the study concluded that overall, chemotherapy contributes just over 2 percent to improved survival in cancer patients.

Yet despite the mounting evidence of chemotherapy's lack of effectiveness in prolonging survival, oncologists continue to present chemotherapy as a rational and promising approach to cancer treatment."

The difference between the orthodox medical establishment's cancer treatment "quackery" and Dr. Burzynsky's is that the former is accepted while the latter is reviled.

Please note that my aim here is not to defend Dr. Burzynsky but to point out the hypocrisy of those who attack him.

So in other words, you have nothing relevant to add to the conversation. Thank you, now start your own blog.

By Gray Falcon (not verified) on 12 May 2012 #permalink

In other words, no dissenting voices allowed? I take it this is a cheering mob for orthodoxy, waving torches and pitchforks at anyone who disagrees with them.

You lot dig up less than a dozen cases of failure to show Dr. Burzynsky's guilt, yet thousands upon thousands die horrible deaths using the conventional methods. Some of them go directly from chemotherapy to emergency and from there to the morgue. Families are impoverished purchasing cancer drugs that cost in excess of $1,000 per pill. Increased survival for lung cancer is measured in a handful of months and is applauded as success.

And yet you all stand on your soapboxes and deride Dr. Burzynsky.

Bravo.

Marg,
That paper was discussed by orac's "friend" in this blog post.

X http://www.sciencebasedmedicine.org/index.php/chemotherapy-doesnt-work/

The paper underestimates the benefits by focusing on cancers where chemotherapy is an adjunct, not the primary therapy.

Also, note that their report is based on real data which are conspicuously lacking in Burzinski's case.

By squirrelelite (not verified) on 12 May 2012 #permalink

Marg, this isn't about dissent, this is about posting off-topic.

By Gray Falcon (not verified) on 12 May 2012 #permalink

Some of them go directly from chemotherapy to emergency and from there to the morgue

Citation needed.

Marg, you are being told that changing the subject is not a valid form of debate. This is about the issues with Burzynski's clinic, one of many articles about him in the last few months.

If you wish to discuss survival statistics for conventional cancer treatments, then go to the upper left hand side of this page and put the words "cancer survival" in the search box. There you will find several articles like:

"Does chemotherapy work or not? The "2% gambit"
"No, Virginia, cancer care in Europe doesn't suck, contrary to what a recent paper implies"
"Cancer research and clinical trials"

plus many many more.

In short, if you wish to prove Burzynski's therapy work, you need to post the results of his clinical trials, not discuss other therapies. After thirty years there should be some published data, but it seems to very hard to find.

Chris

If you wish to discuss survival statistics for conventional cancer treatments, then go to the upper left hand side of this page and put the words "cancer survival" in the search box. There you will find several articles like:

"Does chemotherapy work or not? The "2% gambit"

Hey Chris, How's it hanging?
Here's a quote from your non peer reviewed Orac opinion link:

"I'll grant critics that the types of tumors that can be cured with chemotherapy with a high degree of probability are a minority of tumors..."

The other link implies that cancer is over diagnosed, and that toxic treatment should not get the credit for any survival that is over diagnosed.

Sorta like when ORac cuts out a DCIS tumor(assuming he actually does surgery) and claims a job well done when in in fact he doesn't know how it was going to turn out.

By augustine (not verified) on 12 May 2012 #permalink

@Johnny,

Thank you for the link--I'll spend some time later listening. I hang out at The Village Voice's anti-$cientology blog run by Tony Ortega, and will let those folks know about The Enturbulators. Tony might even do a piece on them.

If you're a CofS follower, you should check out the spoken word of L. Ron's great grandson Jamie Kennedy or Jamie DeWolf (he changed his name recently). He rips his great grandfather to shreds, especially in radio interviews near the cult's homebase of Clearwater/St.Pete/Tampa Bay.

Praise Xenu.

(Sorry-didn't mean to post off topic, especially after Marg got blasted for doing just that. I was only answering Johnny. Back to Stan!)

By Marc Stephens … (not verified) on 12 May 2012 #permalink

Burzinski has his own documentary, currently being shown on some third tier cable network.

Marg -

Please note that my aim here is not to defend Dr. Burzynsky but to point out the hypocrisy of those who attack him.

First of all, even if some other chemotherapy also did not work, this would not change the fact that Burzynski charges desperately ill patients a great deal of money for therapy that has never been conclusively shown to work, and that, as I am personally forced to conclude based on the evidence available, is almost certain not to provide any significant benefit to the patients he treats. (If you have persuasive scientific evidence that Burzynski's treatments work, I am willing to evaluate it; not only do I see none, but that would still raise the major ethical issue of his failure to make the treatments widely available in other settings, if they do work.)

The only possible logical interpretation of your comment is that you believe that Burzynski should be allowed to do so without even being criticized, merely because others may also do so.

To use an absurd extension of this logic to illustrate the error, this is the logical equivalent of saying that Charles Manson cannot be criticized because someone else may also be a mass murderer.

Secondly, you are wrong about conventional chemotherapy, and about the claims made for it.

Conventional chemotherapy is improving with the addition of adjuncts based on targeting of known molecular genetic lesions, where that is possible, for example http://en.wikipedia.org/wiki/Imatinib, but its limitations are still extremely well known and acknowledged by all competent physicians.

Conventional chemotherapy can cure certain types of malignancy, but it has long term negative effects - cure is typically defined in terms of five or ten more measured years of life, rather than inevitable rapid and painful death from the malignancy.

In other cases, chemotherapy provides even less, but is still shown to give results that are better than merely not giving anything.

Conventional chemotherapy is, overall, merely the best medical science has. Most agents are potentially toxic and have severe side effects. Nobody would use it if anything better were available. If you think you have something better, instead of insulting everyone or making logically fallacious arguments, provide a legitimately convincing case for your approach.

Marg,
Nobody was discussing the effectiveness of conventional care because there are published studies (like the ones examined in the paper you referred to) that discuss them in great detail.
Where are the equivalent studies for Dr. Burzynski's treatments? In particular, what is the high quality data showing that Dr. Burzynski's treatments are at least as effective as the current standard of care?

By Mephistopheles… (not verified) on 13 May 2012 #permalink

Two more tragic tales of celebrity cancer patients:

"Conventional doctors can fail and still be considered heroes...

Thereâs a very eminent oncologist at the Memorial Sloan-Kettering Cancer Center who treated Linda McCartney, Paul McCartneyâs wife, who had metastatic breast cancer. He gave her a bone marrow transplant. Thereâs no evidence in the history of the world that bone marrow transplant helps metastatic breast cancer. None whatsoever, and itâs a deadly procedure â 10 to 30 percent of women who get it would die from the procedure. He gave it to her, and she died. Then he treated ..., who used to be editor of ... She had metastatic ovarian cancer. He gave her chemo; it didnât work. He gave her a bone marrow transplant. It didnât work; she died!

What did the New York Times do? They have a second-page major article about this hero oncologist whoâs been working day and night against such odds to keep these wonderful gifts to the world alive. But theyâre dead. He didnât succeed. He gave them therapies that could not, in a thousand years, be of cancer significance.

DM: Are there any ethics or panels that need to approve those procedures before theyâre implemented?

DG: There are ethics panels for the likes of you and me. When youâre a celebrity oncology star, you make the rules as you go along... These oncologists can pretty much do whatever they want, and theyâre lauded for doing it. Theyâre considered heroes. Theyâre considered heroes for using this desperate, expensive, terribly toxic therapy. In fact the more toxic, the more heroic the doctor is perceived. The press loves them... If you stand outside of the back door of Sloan-Kettering, you see the bodies coming out every day. Conventional oncologists lose patients every day, and no one says theyâre murdering anybody... Patrick Swayzeâs doctors have been lauded as heroes; no one came out and said that the Stanford oncology team are sleazy quacks making money and taking advantage of their victims... [But] if youâre an alternative practitioner and succeed, youâre still considered a sleazy quack. So itâs a very interesting dynamic that has absolutely nothing to do with scientific validity, objectivity, or evaluation of data â it has nothing to do with that at all. It's almost a religious fervor... Conventional academic medicine is the last religion left in America."

(http://bit.ly/nlwulK)

"Taking a passive role with today's conventional therapy is terribly dangerous... Jackie Kennedy, after a "courageous fight," succumbed to non-Hodgkin's lymphoma - or did she? Her early demise, attributed to the cancer, was a shock to cancer specialists worldwide, and brought into question the real cause of her death. She had been given an unproved protocol of very high-dose chemotherapy. The drugs alone could easily have caused her death - and this would not be unusual. There are numerous cases of iatrogenic (doctor-induced) deaths from chemotherapy."

"Betsy Lehman, an award winning health columnist for the Boston Globe died on December 3, 1994. She died of chemotherapy.

The 39-year-old mother of two had breast cancer and sought what she considered was the best treatment at one of the finest medical facilities in the world -;the Dana Farber Cancer Institute. Instead of a cure, Lehman got a lethal dose of chemotherapy which was overlooked by at least a dozen physicians, nurses and pharmacists for over four days.

The cause of death wasn't discovered until February 13, after clerks went through her treatment records. Nearly at the end of her 3 months of treatment, the record indicated that Lehman died of heart failure after she was given four times the maximum safe dosage of a highly toxic drug during her chemotherapy treatment.

"She was dealing with horrendous symptoms. The whole lining of her gut from one end to the other was shedding. She was vomiting sheets of tissue. They said it was the worst they had ever seen. But the doctors said this was all normal," according to Lehman's husband, Robert Distal, a scientist at Dana-Farber.

Critics have suggested this death may not be an isolated incident. Dr O Michael Colvin, director of the Duke University Comprehensive Cancer Center asked, "If this can happen at a place like Dana-Farber...what is happening in other places?"

Two more tragic tales of celebrity cancer patients:

Marg, if you think that the deaths of celebrities are more tragic and more important than the deaths of anyone else -- or if you think that readers will be more influenced by celebrity patients -- then feel free to DIAF.

By herr doktor bimler (not verified) on 13 May 2012 #permalink

The thing is, when a jackal like Gonzalez battens on to the death of a celebrity, makes up his own facts about the case, and starts waving the shroud around in the belief that celebrity deaths count for more than those of ordinary people, I can console myself with the thought that he is after all a jackal... celebrities do matter more to him because they are his intended target... so it is not reasonable to expect him to meet normal standards of human decency.

However, when lazy plagiarists like Marg start copy-pasting his mendacious fabrications, they have less excuse.

By herr doktor bimler (not verified) on 13 May 2012 #permalink

the hundreds of thousands of dollars patients shell out for those prior to dying.

A few seconds spent reading the original post would show that this is not true for at least one of the cases mentioned (Billie Bainbridge), on account of not being American. Nor is there any evidence that the other cases he mentions were paying "hundreds of thousands of dollars" for conventional treatment. This is perhaps one reason why the expenses of conventional oncology were not mentioned.

And yet you all stand on your soapboxes and deride Dr. Burzynsky

We do, however, take the trouble to spell his name correctly.

By herr doktor bimler (not verified) on 13 May 2012 #permalink

Dr. Gonzalez is right. Medicine in America IS a religion.

@marg

Yawn, what a weak insult.

Please, do try to come up with a better type insult, but judging by your posting stupidity, it's going to be a while.

Dr. Gonzalez is right.

Dr Gonzalez has the dubious distinction of specialising in a treatment that has been proven not to work (in tests of his choice); his patients die faster and suffer more than the alternatives. He knows that he makes money by killing people, but it is a living, so he doesn't want to stop.
His internet presence consists largely of lying about celebrity cancer patients (always waiting until they have died so they cannot call him a liar), in the belief that they matter more than unimportant patients, and in the hope of sowing doubt about medically-accepted treatments so that more customers will come to him.

If he is right, I'm happy to be on the other side.

By herr doktor bimler (not verified) on 13 May 2012 #permalink

Speaking of celebrity cancer deaths, the scumbags at Natural News are blaming the death of Beastie Boy Adam Yauch on "conventional cancer treatment." Of course the chemo and radiation killed him, not the cancer.

He was a devout Buddhist and a strict vegan. He had diet and spiritualism on his side, for those who consider those two things important. Not a typical rock star decadent lifestyle.

By Marc Stephens … (not verified) on 13 May 2012 #permalink

Yes Ken, The *good doctor* is a "Brave Maverick Physician". Too bad his patients died more painfully than the ones receiving science based treatment.

By Kelly M Bray (not verified) on 13 May 2012 #permalink

@Kelly -you just exhibited your extreme bias. I saw my friend die after 5 years of painful chemo- the chemo ate away his digestive tract. The survival rate for older people (over 60) is pretty grim with standard chemo. He was also on morphine toward the end. I wouldn't want to go through what he went through.

No I just exhibited science based reasoning. his ideas were not based on well known and scientifically proven models of cancer. His *treatments* resulted in far worse outcomes for his patients. Dead end. The progress that has been made with cancer is amazing. I am sorry your friend did not make it. That being said it does not invalidate the use of chemo where indicated, or validate anything Dr Gonzalez has proposed.

By Kelly M Bray (not verified) on 13 May 2012 #permalink

@ken,
Proven effective in some cases vs proven not effective. Dr "coffee enema" Gonzales is clearly in the latter.

With all human medicine, because of the near infinite genomic variety, there are limits and areas where modalities are more or less effective based on age, stage of disease, complications and a host of other effectors. The advantage with science-based techniques is that the vast majority of patients opt for them so that science learns, changes and provides small steps in more effective therapies as a result. This is also the public relations negative that Gonzalez, Burzynski and others prey on.

Quacks like Gonzales & Burzynski provide none of that progress. They have the magic pill. "I have found the holy grail of 'name your disease here'. Spend (lots of) money & take the cure!" Of course they must blame the (dead) victim when their crap fails and tout the very few successes (and those rarely, definitively, due to the magic treatment) as marketing for more victims.

I hasten to add that if it were me, I would rather die somewhat peacefully, if fully stoned on morphine than trying to follow the Gonzalez protocol which would take up most of the day for little gain. Coffee enemas, anyone?

@ marg @ ken: Just in case you didn't read the link I provided to "marg" at # 72 above...the New York State Office of Professional Medical Conduct brought charges against Dr. Gonzalez. Here are the two decisions related to Dr. Gonzalez's *coffee enemas* treatment protocol:

http://w3.health.state.ny.us/opmc/factions.nsf/58220a7f9eeaafab85256b18…

He offered his *alternative treatment* to the five patients whose records were reviewed by the OPMC and he was found to be incompetent and negligent. His patients suffered while under his care and died in agonizing pain.

His ghoulish self-serving statements about dead celebrities are a testament to the lengths this quack will go to, in order to promote his coffee enemas *treatment*.

DG: There are ethics panels for the likes of you and me. When youâre a celebrity oncology star, you make the rules as you go along... These oncologists can pretty much do whatever they want, and theyâre lauded for doing it. Theyâre considered heroes. Theyâre considered heroes for using this desperate, expensive, terribly toxic therapy. In fact the more toxic, the more heroic the doctor is perceived. The press loves them...

The projection and the envy from Gonzalez is almost palpable. "Everyone else does it! And they get away with it! I'm being picked on! It's not fair!"

By herr doktor bimler (not verified) on 14 May 2012 #permalink

Ken and Marg,

I was once as you are now. Credulous. Angry. Conspiracy minded. Incensed at "Big Medicine." But in retrospect, most of all, I was just scared. From my own experience I know that fear can make you believe absolute nonsense. Fear can make you ignore facts in favor of what you wish were true. Fear can cripple your reasoning facilities. But fear can also be vanquished through acceptance of reality.

I watched my oldest sister battle cancer twice. The first time was 18 years ago when chemo and radiation gave her an extra 17 years of life. There was no surgery, her lung tumor was too close to her heart. Stanford University did the experimental chemo/radiation treatment with follow-up at Alta Bates in Berkeley. She was given a 12% at living 5 years. She lived another 18 active, healthy years.

She lived long enough to see her sons married. Long enough to leave her husband and strike out on her own. Long enough to see all her grandchildren born and do grandma day care with them during the week. She was a kick-ass patient who never complained about her predicament. When the cancer came back in '06 it was terminal. She knew that it probably would come back at some point as a possible side effect of the aggressive treatment she had. She knew the odds and risks. Her courageous acceptance completely buried my fear and magical-thinking once and for all. It changed my life.

Doctors are not miracle workers. Cancer is a thousand discrete diseases with myriad triggers. Science-based oncologists may not be perfect, but they don't claim they are, and they're heroes in my book. "Brave Maverick Doctorsâ¢" like Burzynski and Gonzalez are either totally self-deluded or Charlatans. I'm not sure which is worse.

On a final anecdotal, note, my mother got an extra 41 years and counting from her oncologist . . . whom she has outlived.

By Pareidolius (not verified) on 14 May 2012 #permalink

Pareidolius, I am glad that your mother and sister were so well served by their doctors and that you enjoyed many years with them, and that you continue to have your mother's company. Many others don't fare so well. My mother, for instance, was one of the early victims of Tamoxifen. I'm sure many stories of tragic death or heroic survival can be brought to bear on both sides of this debate. BTW I found @Ken's links to be quite persuasive.

@marge - you mean the Dr. Gonzales links? The man is pure quack.....

So, Marg, exactly how does taking coffee in the wrong way help?

It does get the patient caffeinated so they are hyper and cannot rest. It also puts strain on both the liver and kidneys. It looks like a sadistic way to torture patients.

So, really, so us how coffee enemas are supposed to work.

@Chris You could try one :)

@marg

Nice to show your true colors, troll.

Marg, I prefer not to put that much stress on my liver and actually enjoy my coffee properly: from a cup, sipped through my lips.

You obviously prefer sadistically torturing cancer patients.

@Marg, why?

(re: "@Chris You could try one :) " as your answer to how coffee enemas are supposed to work.)

By Calli Arcale (not verified) on 16 May 2012 #permalink

No more sadistic than putting toxic substances that are classified as biohazards into their veins so they can lose their hair and retch and have their stomach lining slough off. Compared to that a coffee enema is a picnic in the park.

Marg,
All four of my children received the full series of recommended vaccinations and none of them lost hair or suffered any of the other symptoms you mentioned. Those biohazards don't seem very hazardous.

And what temperature do you recommend for coffee enemas?

By squirrelelite (not verified) on 16 May 2012 #permalink

Marg: What vaccines are injected into veins?

(I'll give you a hint -- none).

What toxic substances are present in vaccines at harmful levels?

(I'll give you another hint -- none).

EPIC fail.

I imagine that Marg is referring to chemo regimes, not vaccines.

By herr doktor bimler (not verified) on 16 May 2012 #permalink

I think in this case, Marg is referring to conventional chemo. Still a failure on her part, she still hasn't provided any evidence that coffee enemas work, while strong evidence does exist for chemo.

By Gray Falcon (not verified) on 16 May 2012 #permalink

I don't know where people got the idea that I was referring to vaccines.

Where is your strong evidence for chemo?

Chemo agents are considered effective if they shrink tumours by a certain percentage for a certain limited period of time. There is no demonstrated correlation between tumour shrinkage and longterm patient survival. An article in an Australian journal of oncology pegged the adjunctive effectiveness of chemo to 5-year survival as pertaining to solid tumours to a measley 2-point-something per cent. The authors strongly recommended reconsidering chemotherapy as a cancer treatment given that many patients suffer terribly for gains of a few weeks or months.

As to coffee enemas, I do not believe they are meant to be a cancer treatment by themselves. You have battened on to one small aspect of Dr. Gonzalez's treatments to vent your venom. And as I've said elsewhere, I am not a supporter of either Dr. Gonzalez or Dr. Burzynski. I just think the cancer establishment as a whole is barking up the wrong tree.

Compared to that a coffee enema is a picnic in the park.

In terms of known side effects, perhaps. In terms of therapeutic benefit, however, coffee enemas are worthless while chemotherapy saves lives, extends survival time, etc.

Sorry about the vaccine goof. My bad! Too much skipping around threads.

The Australian paper has been discussed on this blog and SBM. Did you read my link at comment 60?
_

By squirrelelite (not verified) on 16 May 2012 #permalink

Marg -- at a guess, they forgot which thread they were reading; there are some active vaccine-related threads at the moment.

There is indeed a lot more than coffee enemas to Dr Gonzalez's protocol. I haven't seen any more evidence for the rest of it either, but remain curious what coffee enemas are supposed to accomplish.

If you want an example of someone barking up the wrong tree, though, you could hardly do better than Dr Gonzalez. The clinical trial in 2009 had to be terminated early because his patients were dying faster than those taking conventional chemo:
Twelve months after enrollment, 56% of chemotherapy-group patients were alive; 16% of the enzyme-group patients were alive. The longest survivors were one chemotherapy-group patient who died at 39.5 months and one chemotherapy-group patient who was censored at 37.5 months (ie, the closing date of the data analysis) and, at the time of manuscript submission, was still alive at 40 months.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2860407/?tool=pmcentrez

This trial did include the coffee enemas; according to the study, this was intended for "detoxification", although the paper doesn't elaborate on the mechanisms of any of this.

The enzyme treatment included orally ingested proteolytic enzymes, nutritional supplements, detoxification, and an organic diet (unaltered from the pilot study).3 Patients received three pancreatic enzyme and two magnesium citrate capsules with each meal. The patients also took specified numbers of capsules with magnesium citrate and Papaya Plus every 4 hours on an empty stomach. The dose for patients with stage II disease was 69 enzyme capsules, and the dose for patients with stages III or IV was 81 capsules per day. After day 16, patients had a 5-day rest period and then resumed treatment on day 22. Treatment could be adjusted by the physician and could be increased for cancer progression. A diet that required at least 70% of the food to be raw or minimally cooked was required. All food was organic. Prescribed detoxification procedures included coffee enemas twice each day; skin brushing and cleansing; salt and soda baths; and a liver flush, clean sweep, and purging.

By Calli Arcale (not verified) on 16 May 2012 #permalink

Marg:

No more sadistic than putting toxic substances that are classified as biohazards into their veins so they can lose their hair....

Burzynski's treatment involves chemotherapy. He also takes their cash by making the patients buy the overpriced drugs at his pharmacy. So do you have a point?

As to coffee enemas, I do not believe they are meant to be a cancer treatment by themselves.

Actually, as far has I can tell they are just one of the ways to sadistically torture patients, the other ways are to insist on them taking several supplements per day. Ones that are prescribed after their hair analyzed by a "DelaWarr" device that does not require electricity but it powered by "intuition."

Marg, unless you can come up with actual science to support coffee enemas, they will be known as cancer patient torture.

I've read the critiques of the Australian paper which essentially said that they left out blood cancers, which are more responsive to chemo, unless of course you count acute myelogenous leukemia, which isn't. Including blood cancers would have raised the 5-year adjuvant effectiveness of chemo to 5 or 6 per cent. Wow. That's a huge difference.

Marg, you seem to have a failure to understand the concept of cost vs. benefit. Let me explain: For twenty dollars, you can get a product that does what you need to, but slowly. For ten dollars, you can get a product that does nothing but hit you over the head with a hammer repeatedly. Which is better?

By Gray Falcon (not verified) on 16 May 2012 #permalink

Chemo agents are considered effective if they shrink tumours by a certain percentage for a certain limited period of time.

O RLY?

By herr doktor bimler (not verified) on 16 May 2012 #permalink

There is indeed a lot more than coffee enemas to Dr Gonzalez's protocol.

Indeed there is. There are also up to 150 supplements/enzyme pills a day, plus raw juices and various meat extracts. Yum.

Including blood cancers would have raised the 5-year adjuvant effectiveness of chemo to 5 or 6 per cent. Wow. That's a huge difference.

You clearly have no clue what "adjuvant" means when applied to chemotherapy treatments. (Hint: Leukemias and lymphomas are not treated with chemotherapy on an adjuvant basis; for these cancers, chemotherapy is potentially curative.)

BTW, adjuvant chemotherapy for at least one cancer is considerably more effective than 5-6%:

http://scienceblogs.com/insolence/2011/12/so_chemotherapy_does_work_aft…

@Gray Falcon

What on earth do you mean? Is chemotherapy the option that's supposed to cost $10 and work slowly? The Australian paper certainly demonstrated that it doesn't.

@Gray Falcon

What on earth do you mean? Is chemotherapy the option that's supposed to cost $10 and work slowly? The Australian paper certainly demonstrated that it doesn't.

Marg, did you bother to read the paper at all? Or anybody's comments on the paper? Or anything other than things written by people selling alternative medicine? Chemo may cause some damage to the body, but it's used because it has been shown that it works. It has a cost, but a benefit. Coffee enemas have a cost, but no benefit. Your argument was basically, "it costs less, so it's better." The number of businesses driven under by that logic outnumber the stars.

By Gray Falcon (not verified) on 16 May 2012 #permalink

@Orac 111

I know what "adjuvant" means. I specified "adjuvant" because I believed that's what the study was about. But in fact it also included "curative" cytotoxic chemotherapy and lymphomas.

Herewith the authors' aims:

"The debate on the funding and availability of cytotoxic drugs raises questions about the contribution of curative or adjuvant cytotoxic chemotherapy to survival in adult cancer patients."

The 2.1% effectiveness was an average figure for cancers overall, excluding leukemias. The cancers with the highest 5-year survival rate were testicular cancer and non-Hodgkins lymphoma. What sunk the numbers was the large number of cancers for which the 5-year survival rate was 0.

@115

My bad, it was Hodgkin's disease (40.3%), not non-Hodgkin's lymphoma (10.5%). The second highest was testicular cancer (37.7%). Then followed cervical cancer (12%) and non-Hodgkin's lymphoma. All the other cancers were in the single digits or at 0. And the authors specified that the numbers were for "percentage five-year survivors due to chemotherapy". I assume that means that in combination with surgery and radiation the numbers would be higher.

All right Marg, you say cancer specialists are barking up the wrong tree. This implies you have some idea what the right tree is, care to elaborate?

@Agashem

I do, but I don't care to elaborate because all you will do is dump venom all over it. And no, it has nothing to do with either Dr. Gonzalez or Dr. Burzynski. Give it time. In about ten years I will be able to tell you whether I was right.

I do, but I don't care to elaborate because all you will do is dump venom all over it. And no, it has nothing to do with either Dr. Gonzalez or Dr. Burzynski. Give it time. In about ten years I will be able to tell you whether I was right.

I suspect you'll invite far more "venom" with this weaselly line of shit.

@marg - like a psychic telling us after the fact that she accurately predicted major events....it doesn't work that way. If you have some info, why don't you share?

I do, but I don't care to elaborate because all you will do is dump venom all over it.

If by 'dump venom' you mean 'ask for peer-reviewed evidence of its efficacy,' then yes, we certainly will. If you don't care to share your miracle cure and its supporting evidence with us then, well, there's the door. We have no reason at all to listen to what you have to say.

@AdamG

That's why I said "in ten years I'll be able to tell you whether I was right" because by then there might be some peer-reviewed evidence of its efficacy. If there isn't, then I will have been wrong. Either way, pace @Narad, no point in talking about it now. I was just answering the question whether I had any other ideas. I truthfully said yes, and I just as truthfully said it would be premature to share them.

Marg,

Are you by any chance a DO doing cancer research in Lebanon, NH? You usually use the name Margit?

If that's not you, perhaps you can tell us if you are a doctor or researcher and why you are qualified to come up with "ideas" on how to cure cancer.

By Marc Stephens … (not verified) on 16 May 2012 #permalink

@Marc Stephens Is Insane

I rest my case :) Of course only doctors or researchers are qualified to come up with "ideas" on how to cure cancer. Especially since they have been so eminently successful up to date :)

Yeah Marg, because plumbers should be qualified to work on nuclear reactors, or we should draw stars to see what passenger gets to fly the plane......

Yes Marg, only doctors or researchers are qualified to come up with ideas for cures. Ideas don't come out of thin air. They are based in science.

Would you want a plumber designing your house? or an architect fixing your toilet?

So I presume from your disdain and disgust of the medical industry you are not doing CLA oral trials for breast cancer treatment?

By Marc Stephens … (not verified) on 16 May 2012 #permalink

Of course only doctors or researchers are qualified to come up with "ideas" on how to cure cancer.

That is because only doctors and researchers have the scientific training and knowhow to develop and test hypotheses regarding cancer treatment. You wouldn't want someone with no training in aviation to build you an airplane, would you?

Lawrence--why do we all use plumbers in these analogies? I posted the same time as you, coincidentally.

By Marc Stephens … (not verified) on 16 May 2012 #permalink

I think Marg, or Margit, ran away when she realized we might know who she is. Can you imagine being this woman's colleagues in her hospital in Lebanon, New Hampshire and knowing what she really thinks of the medical profession, scientists and researchers.

Maybe she thinks a DO is better than an MD.

That is, IF it's the same Margit.

By Marc Stephens … (not verified) on 16 May 2012 #permalink

Marg--

Lots of people can come up with ideas. Doctors and scientists are qualified to do things like check whether those ideas have already been tried, and figure out which new ideas are worth testing, and ways of testing them. (You'll agree, I hope, that "cut the patient's head off" may be an "idea" for curing breast cancer, but it's not one worth testing.)

If you aren't a doctor or scientist, and you actually have an idea that might cure one or more cancers, I hope your saying "in about ten years" means that you have talked to someone who can get that sort of research and development done. (I'm assuming this possible treatment is in very early trials, if that, given what you said about "ten years.")

Wow--if Mike Adams doesn't like it I'm almost convinced it works!

By Marc Stephens … (not verified) on 16 May 2012 #permalink

@mark - somehow the plumber analogy just made sense.

Side effects of coffee enemas (vis-a-vis Gerson but it's the same thing...)

From the Cancer Research UK website:

Side effects
The Gerson diet can cause some very serious side effects. Coffee enemas remove a lot of potassium from your body and have been known to cause
Infections
Dehydration
Fits
Salt and other mineral imbalances in the body
Heart and lung problems, even death

Regular, long term use of enemas can weaken the bowel muscle. This can cause constipation and inflammation of the bowel (colitis).

Other reported side effects of Gerson therapy include
Dizziness and weakness
Abdominal cramps
Loss of appetite
Diarrhoea and sickness
Aching, fever and sweating
Cold sores

And this, from the Memorial Sloan-Kettering Cancer Center website:

The American Cancer Society warns that Gerson therapy can be very harmful

Adverse Reactions
Coffee enemas cause electrolyte imbalance, which has resulted in serious infections, dehydration, colitis, constipation, and death.

Yeay yeah, we all know, chemo has side effects too.

By Marc Stephens … (not verified) on 16 May 2012 #permalink

So if by some long shot a high school student suddenly came up with a cure for cancer in the course of a science project, all those of you who think only scientists and doctors have the right to do so would reject it?

I agree with @Vicki that it would have to be vetted and tested by scientists, but wouldn't it be foolish to reject it out of hand because it came from the wrong quarter?

Those of you heaping scorn on Margit the DO please cease and desist because I am not her.

I do believe that when a solution for cancer is found, it will be relatively simple, and scientists will palm their foreheads saying "duh! why didn't we think of that sooner?" Who would have believed in the 19th century that something in bread mold would cure TB? Prior to the development of penicillin TB was as frightening as cancer is today. Even "bubonic plague" can be cured with erithromycin and how many people died of it in the middle ages and beyond? Yes, scientists came up with penicillin, but by accident. And scientists also came up with Vioxx and Thalidomide, which proves that neither scientists nor the scientific method are infallible.

So if a plumber comes up with a cure for cancer, I will be there applauding him (or her). And if a scientist does, kudos to him (or her) too!

Marg, I think you need to do some reading on Bayesian statistics.

Not all ideas are created equal. Hypotheses are generated all the time, by many different people, but not all ideas are equally likely, a priori, to be true. In terms of hypotheses regarding clinical treatments, we assign a greater prior probability of success to hypotheses that are accompanied by a reasonable biological mechanism that might explain any effect from the purported treatment. In order to develop such a mechanism, one needs a detailed understanding of the system under consideration as well as an engagement in the current literature to evaluate the plausibility of any proposed mechanism. In general, the only people with the proper training to do so are scientists and doctors.

Marg--

Penicillin is not, of course, a panacea. And 1.2 million people died of tuberculosis in 2010.

Cancer is unlikely to turn out to be simple, because it isn't a single thing. Even if someone finds a simple cure for one kind of cancer--which would be a very good thing, don't get me wrong--they won't be able to close down all the cancer research centers.

ken, press releases are not science. Especially when the rest of the article is to a website called "ineedcoffee", which has no real references.

Marg:

I do believe that when a solution for cancer is found, it will be relatively simple, and scientists will palm their foreheads saying "duh! why didn't we think of that sooner?"

Are you so out of reality to think that cancer is just one disease? Try catching up!

Oh, and penicillin will not cure TB anymore.

@Chris

Sad, isn't it, that penicillin won't cure TB any more.

Five hundred years from now, if we are still around, we will think the biochemical model of disease as outdated as, say, the flat earth society.

New discoveries have a way of assigning old "truths" to the dustbin.

So if by some long shot a high school student suddenly came up with a cure for cancer in the course of a science project, all those of you who think only scientists and doctors have the right to do so would reject it?

I agree with @Vicki that it would have to be vetted and tested by scientists, but wouldn't it be foolish to reject it out of hand because it came from the wrong quarter?

This doesn't mean anything. There is nothing to "vet" or "test," as high-school students, like plumbers, don't conduct medical research.

Yes, it is called antibiotic resistance due to a process known as evolution. Something that is well understood.

Marg, why do you think there is only one kind of cancer?

@ Chris:

Maybe we need to start calling these illnesses/ conditions *the cancerS*- and the schizophreniaS, the autismS - all plural- showing that they are categories of illness not single entities.

By Denice Walter (not verified) on 16 May 2012 #permalink

I think Marg, or Margit, ran away when she realized we might know who she is.

Oh, there are Margits all over the place. It doesn't much matter.

Five hundred years from now, if we are still around, we will think the biochemical model of disease as outdated as, say, the flat earth society.

It seems unlikely based on what we now know, but I'm game - what will replace it and what is the evidence for that?

By Mephistopheles… (not verified) on 16 May 2012 #permalink

Yes, ken, nature does not care whether you live or die. Cancer is also part of nature. It is unnatural for us to fight against it, but we will anyway.

Yes, it is called antibiotic resistance due to a process known as evolution. Something that is well understood.

Marg, why do you think there is only one kind of cancer?

No.Not at all. Antibiotic resistance is due to Ignorant Oracian type doctors who think they can control nature with their arrogant know-it-all intelligence.

By augustine (not verified) on 16 May 2012 #permalink

Pairidolius

I watched my oldest sister battle cancer twice. The first time was 18 years ago when chemo and radiation gave her an extra 17 years of life.

In the skeptic science blogging attitude, How exactly do you know chemo and radiation gave her 17 more years. Is this your belief system? How can you prove that it did this? Do you know for a fact that no one who has ever gotten this cancer has lived just as long with out chemo and radiation. How do you know what their lead time bias was or was not?

I'm really interested in seeing how the objective "science" bloggers feel about this? It supports their beliefs. They seem to only attack with questions when their belief system is threatened.

By augustine (not verified) on 16 May 2012 #permalink

"Who would have believed in the 19th century that something in bread mold would cure TB? Prior to the development of penicillin TB was as frightening as cancer is today."

Except...that penicillin was never used to treat TB. Try looking up streptomycin...developed in 1946. Presently, for non-drug-resistant TB, standard beginning treatment is Rifampin, Isoniazid, Pyrazinamide and Ethambutol until cultures/sensitivities prove that the TB strain is sensitive to both Rifampin and Isoniazid. Treatment of TB is much more complicated if you have MDR TB or X-MDR TB:

http://www.slideshare.net/doctorrao/xmdr-tuberculosis

"Even "bubonic plague" can be cured with erithromycin and how many people died of it in the middle ages and beyond?"

No. Try looking up antibiotic treatments for plague...such as streptomycin, Gentamycin, Doxycycline and Ciprofloxacin.

Since you've brought up penicillinâ¦

Penicillin is a member of the B-lactam antibiotic family which acts by inhibiting the formation of peptidoglycan cross-links in the bacterial wall. The inhibition occurs because penicillin molecules possesses a B-lactam functional group which binds to bacterial moleculesâan enzyme called DD-trnaspeptidase--making the unable to cross-link peptidoglycan molecules in the cell wall. This leads to accumulation of peptidoglycan pre-cursors (oh dear, more molecules) which activate the bacterial hydrolases and autolysins (two more classes of molecules) which digest proteoglycan in the bacterial cell wall. Final outcomeâinhibition of cell wall production, up-regulation of cell wall degradation, and rapid cell death.

Or that's what we all thought, but I guess we must have been wrong since the biochemical model of disease is no more valid than a flat earth model of the solar .

So tell Marge: how does penicillin really work, instead?

Chris:

It is unnatural for us to fight against it, but we will anyway.

On the contrary, fighting against the things we know can hurt us is completely natural. "Rage, rage, against the dying of the light." Just as it's completely natural for us to want to maximize our food production by any means possible. "Natural" really encompasses pretty much everything, IMHO.

By Calli Arcale (not verified) on 17 May 2012 #permalink

True, that is because we are humans. We have increased our lifespan and population through things like making tools, wearing clothes, building shelters and selectively cultivating certain plants.

Another famous patient: Robi Draco Rosa, famous ex-Menudo that wrote/produced many of Ricky Martin's biggest hits.
He recently returned home to Los Angeles to continue normal treatment for a non-Hodgkin lymphoma in his lower abdomen, near his liver, diagnosed on April, 2011. It was initially reported that his cancer was not too bad, and that he wanted "natural" treatment and prayer to get cured. He has been very quiet about everything, but he is not being treated by Burzynski anymore. This a big admission, considering how much Draco is into woo....

This is interesting: when researching Robi Draco Rosa's story, I found out that Eric Merola ("director" of the Burzynski commercial) had a 34-year-old cousin who was being treated by Burzynski for brain cancer. Her name was Domenica Prescott.

(She is probably the connection that led Stan to Merola to produce the propaganda infomercial...)

This message below was posted on the Burzynski movie website on April 27, 2011:

Merola's cousin - Domenica Prescott - Glioblastoma Multiforme Grade IV brain cancer

Some of you following this project through our newsletter remember Eric Merola's cousin, Domenica Prescott, was diagnosed with a Glioblastoma Multiforme Grade IV brain tumor last year. Two surgeries, and 6 week of Temodar® chemotherapy and radiation failed to effect her deadly tumor.

After this "standard of care" failed her â about 4 to 5 weeks ago my cousin Domenica began Antineoplaston treatment. After only 4 to 5 weeks of treatment, her first MRI showed that the tumor is breaking down, and the enhancing portion of the tumor is diminishing! This means that she is responding to Antineoplaston treatment. If this continues, she should be on her way to a full recovery within a few short months.

This is obviously what all of our efforts with this project are about. People need to know that this treatment exists. If we remember, this is the same tumor Senator Kennedy had. He and his family ignored all calls from past Glioblastoma survivors cured by Antineoplastons.

Domenica died two weeks later, on May 11, 2011.

http://boards.ancestry.com/surnames.merola/16/mb.ashx

The post about her cure is still up on the Burzynski website, on the same page announcing that Robi Draco is/was a patient of Stan's:

http://www.burzynskimovie.com/index.php?option=com_acajoom&act=mailing&…

I wonder if Eric Merola's faith in Stan wavered even slightly after his cousin died?

By Marc Stephens … (not verified) on 17 May 2012 #permalink

And here's a story about a friend of Robi Draco's, Eva Ekvall, a former Miss Venezuela, who died recently of breast cancer while she was still at Burzynski's shop of horrors (sorry it's from Fox News):

http://latino.foxnews.com/latino/health/2012/02/20/husband-venezuelas-b…

Ekvall died at the Burzynski Research Institute in Houston, a facility that treats clients with advanced stages of cancer. While the facility is controversial because it uses unconventional methods to treat cancer â Ekvall refused to undergo more rounds of chemotherapy â it successfully treated a cancer survivor friend of hers, ex-Menudo member Robi Draco Rosa.

Bermúdez said his wife's cause of death was complications from pneumonia.

By Marc Stephens … (not verified) on 17 May 2012 #permalink

We have this 'documentary' on right now - it was suggested to watch by a friend. It plays more like an infommercial created for conspiracy theorists - call it an infommentary - but if there is any shred of truth to it, should it be written off entirely?

My friend passed away from the toxicity of the cancer drugs that were treating her melanoma. If the center says they have a 25% success rate and they have patients with fatal cancer who are cured, then is it 100% quackery?

Certainly should not be called a documentary - it's completely biased.

Unethical perhaps to take money from the most desperate of people, but is it complete hogwash?

(I posted this on an older Burzynski thread but realized this is a better place for it)

Sadly, Lola Quinlan, the woman suing Burzynski for treating her like an ATM, has died. A poster on Quackometer found the memorial notice:

http://www.legacy.com/obituaries/palmbeachpost/obituary.aspx?n=lola-ann…

I hope somehow the lawsuit will continue, but with no husband or children I really doubt it. I think I could hear a big sigh of relief from a building on Katy Freeway in Houston yesterday...

By Marc Stephens … (not verified) on 19 May 2012 #permalink

Someone wrote something to the effect that Burzynski only accepts certain types of patients, doesnt the FDA dictate what type of patients can participate in the trials? Seems like one of the requirements is that each patient must have already undergone radiation and or chemo therapy, exactly how does that effect efficacy determination? How will we ever know unless his treatment is allowed as the one and only? Someone also mentioned why havent the clinical trials been completed in over 30 years, isn't the FDA the culprit here? I don't know anything about anything except that standard treatments killed my father. After reading this blog and watching the video Im convinced there will never be a cure for cancer as long as the Cancer Industrial Complex, remains in control. Too much money to be made with standard treatments (radiation/chemo). A cure would be catastrophic to all currently employed in either research or treatment arenas. That is the most sad, scary, infuriating part of this whole debate. FYI, To the people that surf the web to find obituaries and then post them, your sick.

Here is a Wednesday May 30, 2012 E-mail I sent to Azad Rastegar who is Dr. Burzynski's main public relations representative.

I haven't received a reply from him and will probably die from other natural causes besides my cancer if I didn't have it. The main theme is; Is it cancer or not? ...

==========================================

Hello Mr. Rastegar (Azad) - I spoke to you at length a few weeks ago - re: Cancer that's not ...

in our conversation which I finally have got around to getting the exact reference (web page URL)

Here it is:

http://scienceblog.cancerresearchuk.org/2011/11/25/hope-or-false-hope/

When we had our discussion at least in my mind's eye, my recollection my relating this to you seemed like a "new one on you". As the public relations director for the Burzynski Clinic:

http://www.cancercontrolsociety.com/bio2009/rastegar.html

one that has been under tremendous pressure, controversy and expose attack I found that kind of odd that you didn't hear about such claims/contentions. Your "cancer cures" that were the centerpiece examples of your movie:

http://burzynskimovie.com/

are addressed in the "hope-or-false-hope" blog above. I don't see any counter-claims by you, Dr. Burzynski that the instances were indeed cancer. I hope you'll agree this is a critical basic aspect. It either is cancer or it's not.

I saw the movie and indeed many you had many patient supporters in your congressional hearings and you cite all kinds of cancer cure/treatment results:

http://www.ncbi.nlm.nih.gov/pubmed/12718563?dopt=Abstract

but you don't publish the results, scans, etc. with the personal info blotted out like you do in the movie. I realize there are a lot of privacy issues etc. but the abstract coming from your clinic is logically the same as asking the fox how many chickens are in the hen house and are they all all right? Without some kind of independent verification such as a web cam in my figurative analogy it's all here-say thus my focus on the "non-cancer" examples of your movie which you sell and advertise.

My first question to you was what was the majority of the case against Dr. Burzynski dismissed by the Texas Medical Board that you cite in your web page"

http://www.burzynskimovie.com/index.php?option=com_content&view=article…

I never got any explicit answer from you. I kind of understand why as if you go to the Texas State Office of Administrative Hearings web page"

http:/www.soah.state.tx.us

select the Electronic Case Files link in the upper right hand corner, the select "Use Guest Account" and search: 503-11-1669 and open you the resulting folder you'll see a chronology of legal documents in .PDF format pertaining to the Texas Medical Board's (TMB) complaint against Dr. Burzynski with none of them showing any charges being dismissed.

I called the TMB and the more than one person I talked to concurred; there are no charges dismissed.

In fact the recent document No. 57 titled: ORDER NO. 14 - REGARDING STAFF’S OBJECTION TO ORDER NO. 12 it seems Dr. Burzynski got a hold of some investigative material from the Texas Medical Board and now they're very upset about it.

As I told you in conversation I'm no great fan of the FDA. Where I find the contradictions from your side troubling that can be remedied by some kind of proof the examples in your movie are indeed cancer, I look on the FDA with simple disgust and disdain that they can't even tell me if your IRB complied with it's warning letter to it.

If it didn't then how the hell did it let Dr. Burzynski have Phase III antineoplaston trial clearance?

If Antineoplastons are indeed the "real deal" and the FDA didn't create an environment for its development whether by yourself or some other entity then my disgust and disdain for them transforms to all out hatred.

But that is between me and the FDA:

http://dl.dropbox.com/u/58684622/FDA_Burzynski_Warning_Letter_FOIA_Requ…

The bottom line is there's enough room in all of this for the FDA to permit a scam to continue because it would sure look bad if Dr. Burzynski was a quack and they twiddled their thumbs for years and years not putting a stop to it. But if Antineoplastons are neutral in of themselves; no harm - no foul then I can see the "symbiotic relationship" going on indefinitely.

I think if the preceding might be the case where Dr. Burzynski "messed up" is prescribing all those other unapproved drugs:

(from the complaint)

Respondent prescribed a combination of five immunotherapy
agents-—phenylbutyrate, erlotinib, dasatinib, vorinostat, and sorafenib—which are not approved by
the Food and Drug Administration (“FDA") for the treatment of breast cancer, and which do not
meet the FDA’s regulations for the use of off-label drugs in breast cancer therapy.

Where this is all my business is no only can we not have doctors prescribing all kinds of things willy-nilly just because they're MD's as a cancer sufferer I believe I have a right that cancer research dollars go to the most promising vaccines and treatments even if the most legit are not as promising as those claimed by those that aren't. I trust you know exactly what I'm trying to convey.

In closing, I contend I really do have an open mind and three simple things might indeed sway me to consider Antoneoplastons are key an Dr. Brzynski the keyholder to my cancer: the examples in the movie - prove to me beyond a shadow of doubt they were cancer, show me where the TMB dropped the majority of charges against you and show me (formally) where the Burzynski IRB complied with the tenets and stipulations of the FDA warning letter:

http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm192711.htm

Thank you and regards,

Joel S.

Joel Shapiro
Rochester, New York 14618
Phone numbers in order of preference:
(585) 255-0997 (Cell - Call anytime - best to reach me)
(585) 473-7013 (Home - 9:30 to 22:00 EDT/EST)
(585) 250-8053 (Home - 9:30 to 22:00 EDT/EST)

jrs_14618@yahoo.com
-or-
cshapiro@rochester.rr.com

By Joel Shapiro (not verified) on 31 May 2012 #permalink

Seems like one of the requirements is that each patient must have already undergone radiation and or chemo therapy, exactly how does that effect efficacy determination? How will we ever know unless his treatment is allowed as the one and only?

If you wanted to test a food, would you have to test it only on people who had never eaten any other food in their lives? If you compare patients who have gone through the best conventional therapy has to offer and then Burzynski's treatment with patients who have gone through the best conventional therapy has to offer and then no treatment, the difference should be attributable to Burzynski's treatment.

Someone also mentioned why havent the clinical trials been completed in over 30 years, isn’t the FDA the culprit here?

In a word, no. The FDA has done nothing to stop Burzynski's trials from proceeding through the stages; it's Burzynski who has spent those thirty years making himself a very rich man by unethically charging patients six-figure sums for help that they are giving to him by helping him with his study.

I don’t know anything about anything except that standard treatments killed my father.

I'm very sorry to hear about your father, but almost certainly, what actually killed him was cancer.

After reading this blog and watching the video Im convinced there will never be a cure for cancer as long as the Cancer Industrial Complex, remains in control. Too much money to be made with standard treatments (radiation/chemo). A cure would be catastrophic to all currently employed in either research or treatment arenas.

We've heard that conspiracy theory before, but it's like saying that people must be somehow able to fly by flapping their arms, because if were true the airline industry would have too much to lose.

By Antaeus Feldspar (not verified) on 01 Jun 2012 #permalink

So if by some long shot a high school student suddenly came up with a cure for cancer in the course of a science project, all those of you who think only scientists and doctors have the right to do so would reject it?

In science, what is important isn’t who came up with an idea, but the evidence behind it. A garbage man, physicist or homeless person could have an idea, but what matters is whether, when compared to current treatments, it did better or worse in a fair and public test. That’s why the “brave maverick doctor” gambit is stupid – real doctors and scientists don’t care who comes up with an idea, they care whether it passes empirical tests.

Five hundred years from now, if we are still around, we will think the biochemical model of disease as outdated as, say, the flat earth society.
New discoveries have a way of assigning old “truths” to the dustbin.

Unlikely, the comparison is inapt. You can basically draw a line in history starting around the 1700s. Pretty much everything before that time was based on faith and authority (generally Jesus and the Greeks). Starting around the 1700s, give or take a century, knowledge began to be measured by empirical proof – how well the theory adhered to reality, rather than how well observations adhered to theory. Once empirical testing becomes part of the basis for describing reality, it’s a virtuous circle that accelerates technological and scientific progress.

Whatever exists in 500 years will be more specific from what we know today, but unlikely in most cases to be wildly different – because for the past 300+ we have been basing knowledge on better and more specific tests. Einstein didn’t replace Newton’s work, he refined it.

Learn your history and epistemology.

@sheepmilker,

Heartbreaking message, but thanks for posting it.

I mentioned your post (giving you credit!) on the Quackometer site in the UK. Billie's story was one of the first to use the mainstream press to call attention to Stan and his "treatments", and motivated other desperate parents in the UK to waste their money and precious time messing around in Houston.

What's going on with his postponed hearings with the TMB? When will this monster finally be shut down? (And cue Stan's outraged sockpuppets in: three, two, one...)

By Marc Stephens … (not verified) on 05 Jun 2012 #permalink

Hello All and Dr./Mr. Zimmerman, - Re: Dr. Burzynski - How is this been going on for 3 years? (!) ...

On October 9, 2009 Dr. Kevin Prohaska, Acting Human Subjects Team Lead, Division of Scientific Investigations, Office of Compliance, Center for Drug Evaluation and Research of the Food and Drug Administration (FDA) issued a very stern warning letter to Dr. Burzynski / The Burzynski IRB that his operation (no pun intended) is severely deficient in several respects protecting the health and safety of those under his experimental Antioneoplaston trial(s) stewardship:

http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm192711.htm

Within scienceblogs.com under the blogs of the subject group heading: "Respectful Insolence" I publicly posted my Freedom of Information Act request to see if Dr. Burzunski / his IRB complied with Dr. Prohaska's stipulations. I FINALLY got a reply/response to my FOIL request.

But here is the direct URL link to my FDA FOIA request:

https://dl.dropbox.com/u/58684622/FDA_Burzynski_Warning_Letter_FOIA_Req…

and here is the link to the document that verified they received it:

https://dl.dropbox.com/u/58684622/Burzynski_IRB_FDA_Warning_Letter_FOIA…

Here are the URL links to the reply (finally):

https://dl.dropbox.com/u/58684622/FDA_Burzynski_FOIA_Reply_Page1.pdf
https://dl.dropbox.com/u/58684622/FDA_Burzynski_FOIA_Reply_Page2.pdf
https://dl.dropbox.com/u/58684622/FDA_Burzynski_FOIA_Reply_Page3.pdf
https://dl.dropbox.com/u/58684622/FDA_Burzynski_FOIA_Reply_Page4.pdf

It kind of frustrated me that I had to go to such lengths to get a simple formal or official yea or nay as in a simple E-mail but I guess that's the deal costing perhaps all of $11.80 for 15 minutes work pending decision on my contention that the charges would be dismissed as it is in the public interest and and I'm indeed disseminating their answer it publicly; at least starting in this scienceblogs forum:

http://scienceblogs.com/insolence/2012/05/10/two-more-tragic-tales-of-b…

In my discussions with FDA ombuds(wo)man Lena Choe when I inquired of her who gave Dr. Burzynski the authorization for him to perform his Phase III trials I was informed by her it was a collaborative effort within the FDA that decides if an experimental drug's sponsor (i.e. Dr. Burzynski and his Antineoplastons) meets Phase III drug trial status or clearance.

I don't know if Ms Choe was feigning ignorance but she said didn't have any information in this regard but the indications from the tone and demeanor of the conversation she had no absolutely no intention of finding this information for me anyway.

But I found this on my own:

http://184.173.15.174/~burzynsk/images/stories/Understanding/EmailFromF…

If you bring up the preceding .PDF file please note you gave your authorization Tuesday, January 06, 2009 at 10:12 AM.

From the E-mail string that is the contents of this .PDF document posted by Dr. Burzynski it appears that you Dr./Mr. Zimmerman, a regional health project manager for the FDA are the sole authority; at least you you don't allude to any of your cohorts or colleagues.

Seven months later almost to the day Dr. Prohaska issued his warning letter and it seems Dr. Burzynski DID NOT! fulfill Dr. Prohaska's criteria!

In a December 14, 2009 redacted letter by Dr. Prohaska, a redacted name has been has been disqualified as a clinical investigator. In other words if this certain "mystery" doctor's name appears the IRB may not approve any FDA related studies; as in no Phase III authorization.

By extrapolation I "think" this is Dr. Burzynski, but this is purely my conjecture. I understand I can be absolutely wrong in this regard but my understanding -is- correct that the Burzynski IRB (BRI IRB) was deemed severely deficient and still will be as such until there is an active IRB.

Dr. Prohaska's letter also goes on to state that he finds no record of an active IRB for Dr. Burzynski. I guess (very sarcastically) if there's no IRB there's nothing to check for Phase III Antineoplaston trial compliance because there technically is no trial?

Yet from my understanding Dr. Burzynski has been and still is actively seeking donations to conduct trials:

http://www.burzynskiclinic.com/donate.html

and all the while he has been and still is using his experimental Antineoplaston treatment as his mainstay. Do you see, can you comprehend that this seeming "loophole" or limbo is not just a matter of semantics but a danger to Dr. Burzynski's patients who I can't classify as trial subjects if there is no Phase III trial?

It is my understanding the FDA can put a "clinical hold" on a drug trials and they/you have the latitude to put "the kibosh" or a halt to any activity that puts the public at risk. I'm wondering four main things of you sir:

1.) When you grant Phase III, or any Phase trial conduct status to an experimental drug trial sponsor do you follow up on his/her/their progress and status or is it a one-time decision by you with no follow up or further consideration?

2.) Were you apprised of the Burzynski warning letter and he's current indictment by the Texas Medical Board? (I guess I'm going to need another $11.80 for 15 minutes of FOIA for this one but I figure it's worth it)

3.) If this is per chance all new to you which I hope it is not are you willing to find some way if at all possible to retract your clearance for Dr. Burzynski's Phase III Antineoplaston trials until the TMB case is settled and/or and Dr. Burzynski finally creates or initiates an active IRB? Doesn't an experimental drug sponsor need an IRB at least in place to have any Phase drug trial clearance

4.) Do you see ... do you comprehend the threat to the U.S. and by extension world public health and welfare that an experimental drug sponsor can take advantage of the system and offer an experimental drug as a mainstay ad infinitum? How many other "Dr. Burzynski's" are "out there" that you or your colleagues have authorized for experimental drug trials as a pretext for general treatment long before the given drug is formally approved; if ever?

I'm just one voice; one cancer sufferer looking for the best diets, the best treatments etc. for my prostate cancer and for that matter any sickness or disease I will be coming down with from here on out. Perhaps legally you don't have to answer my questions or to compel you to answer them will cost me in legal fees more than all of my medical bills.

But maybe if enough people make similar inquiries to you (the FDA), their congressional representatives maybe ... just maybe we'll have the food and drug oversight we Americans deserve and have paid for; one that of course that will never be perfect but certainly one which is better that is currently in place.

In this respect I'm listing some pertinent FDA contact information that others may follow in my footsteps to get to the bottom of this egregious issue:

http://fdazilla.com/fda/directory/employee/REG%20HEALTH%20PROJ%20MANAGER

http://fdazilla.com/fda/directory/employee/paul.zimmerman@fda.hhs.gov
FDA Regional Health Project Manager
301-796-1489
301-594-5775
301-796-9845 Fax

http://fdazilla.com/fda/directory/employee/prohaska

Dr. Kevin Prohaska
kevin.prohaska@fda.hhs.gov
301-796-3707

http://fdazilla.com/fda/directory/employee/choe

Lena Choe
Division of Drug Information
Center for Drug Evaluation and Research
Food and Drug Administration
lena.choe@fda.hhs.gov
DRUGINFO@fda.hhs.gov
301-796-3400

http://www.fda.gov/AboutFDA/CommissionersPage/default.htm
Dr. Margaret Hamberg
Commissioner of the FDA
margaret.hamberg@dfa.hhs.gov

I welcome and look forward to your correspondence.

Best regards,

Joel Shapiro

Joel Shapiro
Rochester, New York 14618

Phone numbers in order of preference:

(585) 255-0997 (Cell - Call anytime - best to reach me)

(585) 473-7013 (Home - 9:30 to 22:00 EDT/EST)
(585) 250-8053 (Home - 9:30 to 22:00 EDT/EST)

jrs_14618@yahoo.com

-or-

cshapiro@rochester.rr.com

By Joel Shapiro (not verified) on 11 Jun 2012 #permalink

If I'm reading the Texas State Office of Administrative Hearings docket correctly...
http://www.soah.state.tx.us/Docket/general.asp
...it appears a hearing on the Texas Medical Board complaint against Burzynski is now scheduled for next Wednesday, June 27, at 10 am.

By David Gaw (not verified) on 23 Jun 2012 #permalink