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A response to the father of a Burzynski patient

If there’s one thing that’s difficult about writing about Stanislaw Burzynski, his highly dubious (nay, bogus) antineoplaston cancer therapy, his “personalized gene-targeted cancer therapy for dummies,” and his shameless rebranding of an orphan drug as a miracle cure for cancer, it’s trying to balance a righteous anger at what he does to desperate cancer patients with a knowledge of the effect that my words will have on some of those same desperate cancer patients. Most regular readers of this blog know who Stanislaw Burzynski is, but, even if I’ve just written about him a few days ago (this time in the context of his apparently having managed to slither away from justice again, thanks to the incompetence of the Texas Medical Board), I always feel obligated to remind my readers, mainly for the benefit of newbies and any person who happens to come across this blog as a result of a Google search for Burzynski or antineoplastons.

I also feel compelled to remind them, again when cancer patients looking for alternatives to conventional treatment stumble across this blog, that there are many patients whose families have gone to huge lengths to raise sums as high as several hundred thousand dollars to pay for treatment at the Burzynski Clinic under the auspices of Dr. Burzynski’s “clinical trials” that never seem to produce much in the way of useful data despite his having opened and closed dozens of them over the last two decades since he was ordered in the 1990s by the Texas Medical Board and the FDA not to use antineoplaston therapy except in the context of a clinical trial. Despite that, Dr. Burzynski has set up quite the cottage industry in which patients pay hundreds of thousands of dollars for the “privilege” of being treated on a “clinical trial” with antineoplaston therapy, even though it is not FDA-approved, has never been convincingly shown to work, and has significant toxicities despite Burzynski’s claims that his treatment is so nontoxic. So we have many patients doing what I’ve referred to as harnessing the generosity of kind-hearted strangers to pay for woo. It’s a depressing litany of people, mostly children, teenagers, and young adults like Billie Bainbridge, Kelli Richmond, Olivia Bianco, and Shana Pulkinen. And, most recently, there have been Rachael Mackey and Amelia Saunders.

These patients come from all over the world, even from countries with universal health coverage, like the U.K. and Australia, to spend precious weeks of their brief remaining time in a foreign country far away from home and pay hundreds of thousands of dollars that they don’t need to spend for a treatment that cannot save them. Telling them that on this blog is not easy, because I take care of cancer patients. Even though I have thus far been fortunate enough not to have cancer myself, that doesn’t mean family members haven’t; indeed, my mother-in-law died nearly four years ago of a particularly nasty form of breast cancer. Even as a cancer doctor, I still wanted to believe that there was hope, even though all my knowledge told me that there wasn’t. At that point, even I might have been tempted by Burzynski, making it a good thing indeed that I was only vaguely aware of Burzynski four years ago. So, even though I haven’t had a child with an inoperable brain tumor or a spouse with some particularly lethal malignancy, I do get it.

That’s why it causes an uneasy feeling to see Richard Saunders, the father of Amelia Saunders, show up in the comments of my blog post about his daughter and the Saunders family’s quest to raise money and fund a trip to Houston to see Burzynski:

Hi Everyone –

I’m not one to post on forums such as this as it doesn’t normally gain anything for us, and neither for my daughter in the process. What I did want to say as a subjective view from my perspective as Amelia’s father.

Amelia tumour has, as anybody who can use wikipedia would be aware, the worst prognosis of virtually any brain tumour there is. It was growing before we went to Houston, and it has remained relatively stable since. Now you could say that this is the antineoplaston treatment or you could not – I know what I believe, but then most don’t believe the treatment does anything at all.

What constantly upsets me is the number of people saying Burzynski offers ‘false hope’ or that he is ‘charging too much’. Do any of you in the US understand the real world costs of treatments such as chemotherapy or radiation, or indeed the costs to the public with our NHS here in the UK? These treatments that can have the most awful side effects and in many cases kill the child in the process? And besides, can you really put a price on my child’s head? If we had chosen the ‘conventional’ treatment here, we would have cost the UK taxpayer many tens of thousands of pounds with potentially little effect on the tumour. Amelia would likely not be here now either. Why would we do this?

The bottom line is I really wouldn’t care if he charged 10 times what he charges us now – the difference is that we made that choice.

One more thing – Burzynski’s treatment is NOT chemo. You people really are misinformed and just making assumptions! My daughter is only on antineoplastons.

PLEASE stop making radical assumptions about a treatment that none of you have any real world experience of. I have personally searched through around 20 years worth of medical trial data to find anything that has any effect on DIPG tumours – and there isn’t anything. Would you, in my shoes, not at least try? Or would you sit there and say ‘oh no, that is too expensive – we won’t try to save our child’s life’. I expect not.

Lastly, if you believe the people at the Burzynski clinic work there for free – then you need to get your heads out of the sand and understand that they don’t. They are a business. They are there to make money, like any other business in the world. They don’t do it for free, they charge for their time and experience. They do NOT charge for the antineoplaston drug, we have never paid for this.

I would therefore ask that, if any of you have an ounce of morality in you, then you would understand that writing blogs such as this do serious harm to the wellbeing of people like us. I realise we have free speech and all, but please just consider the consequences of what you write.

I honestly believe a lot of this is because people just don’t understand. There is a comment above about somebody’s aunt who is alive today because of radiation and chemo. Fantastic. How many DIPG tumour kids have lived after radiation and chemo? I’ve found 1 so far? You need to understand there are 120+ types of brain tumour, and you need to treat every single one differently. No miracle cures, no miracle treatment.

I’ll now go back to my very real world, where I want my daughter to live. I honestly hope that my writing on here makes you understand this a little more.

Many thanks

Richard Saunders (father of Amelia)
Reading, UK

My first reaction is to try to assure Mr. Saunders that far be it from me to want to upset him. He has quite enough to deal with, both physically and emotionally, given his daughter’s cancer. On the other hand, when I see Burzynski once again milk another family dry by leading them on with false hope, I cannot remain silent, even if an unintended consequence of speaking out publicly about Burzynski is that it upsets parents like Mr. Saunders. Would it were otherwise, but there is no other way to illustrate the harm that Burzynski does. Nor is it an attack on him or his family to say this; at least, it is not intended that way, even if it might be perceived that way. No one here, least of all myself, wants to see a child die of cancer. Everyone here, particularly myself, wants to see children like Amelia beat the odds, however long. Everyone. However, we are forced by nature and the limitations of medicine to be realists. In fact, in reply to Mr. Saunders’ plea that writing blog posts like my original post about his daughter “do serious harm to the well being of people like us,” I would respond that Dr. Burzynski’s unethical actions and promotion of a therapy with no compelling evidence that it is effective to the tune of hundreds of thousands of dollars does far more harm, physical, financial, and, yes, to the well-being” of cancer patients that, as much as I might have upset Mr. Saunders by my post, I would be remiss if I did not “tell it as I see it.” If I can change the mind of just one of Burzynski’s prospective patients, I will consider writing posts like this time well spent.

Mr. Saunders’ e-mail is also informative in that it reveals that what Dr. Burzynski tells patients and patient families is not in line with the evidence or even basic oncology. For example, Burzynski has apparently told Mr. Saunders that his treatment is not chemotherapy, that his antineoplaston therapy is not chemotherapy. This is, quite simply, incorrect; Burzynski has either lied to Mr. Saunders or is so misinformed that he really believes that antineoplastons are not chemotherapy. The word “chemotherapy” has the connotation of the really toxic stuff, the stuff that makes your hair fall out and your immune system tank, but that’s simply a popular misconception of what chemotherapy is. In fact, virtually any drug used against cancer that is selectively toxic to cancer cells is chemotherapy. That includes hormonal agents and all those targeted agents that Burzynski mixes together like Severus Snape mixing potions together at Hogwarts, the main difference being that Snape knew what he was doing and his potions worked. Antineoplastons are chemotherapy. Period. Nor are they “non-toxic.” In fact, they are quite toxic at the doses that Burzynski uses. For example, hypernatremia from antineoplastons is a very real and serious problem that Burzynski routinely poo-poos, denies, and downplays.

Finally, I hope that perhaps the discussion of Amelia’s case might ultimately persuade Mr. Saunders that he is not accomplishing anything by going to Burzynski other than subjecting his daughter to a lot of treatment for no payoff. In a recent Facebook status update, Mr. Saunders pointed out:

We’ve now been giving Amelia the treatment for 237 days, which means that by my calculations, we have changed just over 500 IV bags of Antineoplastons, taken around 80 blood samples, had over a hundred calls with Houston, countless meetings with the hospital here, 9 MRI scans, and travelled around 10,000 miles to Houston and back. We have done all of this ourselves, with help from the local hospital team here who have been fantastically helpful given the situation, as well as an army of friends and family who helped make all this a reality. Amazing, really really amazing. Thank you.

You do not need me to tell you how hard this all is. The numbers speak for themselves. Because we want to maximise the use of the drugs and minimise the amount of shipping from Texas, we stagger the bag changes – Amelia has 6 doses of each of 2 bags every 24 hours, but the bags now only last for 5 doses, which means we are sometimes changing bags at 3 or 4 in the morning, or before lunch, or before she goes to school. We remember all this, plan it, and make sure it all works. This treatment is a lot of work, it takes a lot of organising, and it has been unbelievably difficult some days fitting all this in. But we do it.

On the other hand, perhaps skeptics pointing out that the cysts that Mr. Saunders had taken as signs that the antineoplaston therapy was working were far more likely not to mean anything of the sort are having an effect. I took no pleasure in pointing this out, but rather wanted to counter this claim in case other desperate patients took it as evidence that antineoplastons work. As I pointed out at the time, the “cysts” are most likely represent (1) the way the cancer grows, with mixed cystic and solid regions and/or (2) the tumor outgrowing its blood supply, as tumors frequently do as they progress. Mr. Saunders seems to have tempered his previous elated words with a bit more realism:

We know that some people doubt what we are doing. We understand that it is in human nature to question, and many people will not just take something on faith alone. But, ultimately, this is our choice. And that choice seems to be paying off.

Yesterday I sent a CD with the latest MRI scans on to our local oncologist and I’ll be waiting for their opinion. We’ll consider this, and then continue until the next scan and see if the cystic formation that we have been shown grows in some way. I don’t want anyone to think we just take things at face value and accept them – we consider what we see, what we are told, and get as many opinions as we can. We can see with our own eyes though that something has changed with the tumour and we hope this continues. Amelia’s tumour hasn’t enhanced or progressed, so we know it is unlikely to be anything other than cysts, but we will get that second opinion for sure.

Assuming Mr. Saunders reads this, it is my hope that he will take these MRIs not just to his oncologist but to a pediatric neuroradiologist experienced in reading MRIs of the brain. I would also ask him to have this neuroradiologist apply RECIST criteria to the scans after making sure that he knows how to apply RECIST criteria. Evaluating scans for potential response to therapy of brain malignancies requires an expert in neuroimaging, not an oncologist.

In conclusion, it was never my intention to upset the Saunders family, nor is it now. Mr. Saunders’ response reminds me, as it should remind the occasional skeptic whose understandable anger and revulsion at what Burzynski does can sometimes be misdirected unintentionally at families who want nothing more than to see their family member with cancer live. Most such families are not stupid, nor are they likely to be more gullible than the average person. No one knows how he will react to having a child like Amelia who develops a fatal malignancy until he actually has one. On the other hand, given the widespread harm that Burzynski has in my opinion been doing over the last 30 years, we cannot allow the potential emotional reaction of families of Burzynski patients silence us. The stakes are too high. We can, however, try our best to be empathetic and respectful while keeping the focus on the target: Stanislaw Burzynski, his clinic, and his research institute. Mr. Saunders might not believe it, but no one (aside from him and his family) would be happier than I if Burzynski’s therapy actually worked and had the potential to save his daughter’s life. I mean that.

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

185 replies on “A response to the father of a Burzynski patient”

Yup. I have corresponded with Richard Saunders for some time, he is in just about the most horrible place a parent can be. And talking to him only reinforces for me the fact that Burzynski *must* publish. If he has a cure, the world needs to know, if he doesn’t, then, well, the world needs to know that, too. The continuing controversy caused by his abject failure to follow the correct route of publication and peer review is causing immense distress to patients, who are trying to make informed decisions in worse than a vacuum – almost no real information and lots of propaganda.

I can’t imagine what lengths I’d go to in attempting to save the life of a child with an incurable brain tumor.

What I hope is that I’d have the wisdom to select a genuine clinical trial that not only offers a bit of hope for extended survival or a cure, and might help more children down the road – instead of merely enriching the likes of Burzynski.

A clinical trial like this one:

ht_p://www.cornellneurosurgery.org/pedneuro/dipg-news.html

Truly his situation is horrible: what I fear is that Burzynski can only make it worse.

“That includes hormonal agents and all those targeted agents that Burzynski mixes together like Severus Snape mixing potions together at Hogwarts, the main difference being that Snape knew what he was doing and his potions worked. ”

Wonderful, you made me smile in such a sad post.

I am sorry for the parents, relatives and friends of people with cancer but… People like this quack aren’t the answer 🙁

I’m just wondering if any former staff members of Burzynski have ever come forward with evidence that they knew that this was just a scam. The claims that Mr. Saunders was told, that antineoplastons were not chemotherapy, suggest to me that the professional staff should have known that they are chemo. If the staff said that antineoplastons were not chemo, then they were either professionally incompetent, or they were liars for Burzynski. Am I being too cynical?

More Burzynski.

More desperate parents/loved ones doing anything to save their cherished family member.

More lies told to anguished people (antineoplastons are not chemo).

It’s maddening that the actual statistics of this seemingly endless “trial” are, after thirty years, murky at best. This means anecdotes, anecdotes, anecdotes. Is anyone in the NCI or FDA even paying attention to this? I mean really paying attention? Can anyone point me to actual, peer reviewed studies? All I find is heart-tugging stories and one very biased, slickly produced collection of anecdotes on film.

Maybe a good journalist wants to investigate this.
Trine Tsouderos?
Matt Taibbi?
Janet Reitman?
Anyone? Hello? Pulitzer material here . . .

I guess that leaves it up to “angry” bloggers to do all the heavy lifting and endure the anguished rage of Burzynski’s marks.

Cognitive dissonance seems to be a strong factor among families of Burzynski’s patients. How many times have we seen families continue to raise money for the clinic even after the patients have died? It seems as if the families are blind to the reality that he can’t and didn’t do anything to help, but they continue to justify and support their decisions and in some cases convince themselves that going to Houston actually was beneficial.

I lost my vibrant and cherished family member to a glioma a year ago, and
understand more than a little about hope vs. acceptance. Her original oncologist advised us to not put her through the trauma of surgery; but to make her comfortable and enjoy the 3 months she would probably live.

This doesn’t relate directly to the cancer non-cure you are discussing here, but I have a question about tumors that appear to be shrinking, which you mentioned in this post.

I have a friend who was diagnosed with stage 3 breast cancer and has opted to follow the alkaline diet hoax in an effort to “cure” her cancer. She is choosing to not have surgery or any kind of conventional chemo treatment. Instead she is eating “alkaline” foods and taking maple syrup and baking soda. The challenge when trying to talk to her about this is she says her tumor has gotten significantly smaller since she has embarked on this. I have no reason to doubt her claim. As you can imagine, given that the area is shrinking it is hard to convince her she needs to seek real medical treatment. My question, the one I can’t find an answer to, is why is the tumor getting smaller? And if this helps answer that question, she said it never did feel like a classic lump. It was more of a hardening, almost inflamed area. Thanks for any help you can give me.

Pareidolius,

I nominate Janet Reitman. She blew the lid off Scientology back when that was a dangerous thing to do, so she’s familiar with Burzynski’s MO of selling expensive, useless treatments to the misguided by a lying, charismatic leader who writes nothing but science fiction.And getting rich in the process.

Hubbard and Burzynski: cut from the same cloth.

No DIPG survivors under chemo or radiation. Period. Why harp on something that has zero survivors anyway? I’m sure you will not allow this comment to be posted.

Didn’t finish my post:

The original oncologist’s advice seemed cold and unfeeling, and so the family searched further until they found a specialist at a research hospital who said he could do the surgery, and it would give her up to a year or two more. We jumped on that hope, as anyone would. After a grueling time of recovery from the surgery, she lived: 2 months. Her weeks spent in the hospital were weeks robbed from us, and grueling for her.

I have asked myself many times since, were we thinking more of our pain than hers in our decision, in desiring to prolong her agony so that we could have her with us for a little while longer? It’s a horrible situation, and you want to do everything you can possibly do. In hindsight in our situation, I wish we had listened to the original oncologist, who knew very well what was ahead.

@Denis: No, you are not being too cynical. There was some discussion on the Burzynski thread a few days ago about whether the Texas Medical Board would go after the doctors Burzynski employs, on more or less the grounds you lay out.

@Marc S: It is all too human for people who have been conned to refuse to accept that they have been conned. Burzynski is no different from Bernie Madoff in this regard: his ability to continue operating depends on his previous marks referring new marks to him, and that would stop if the previous marks realized that they were marks. So Burzynski doesn’t encourage people looking too closely at his results, just as Madoff never explained how his investors were getting such consistent apparent profits in their quarterly statements.

As for the Texas Medical Board, I’d say they aren’t so much incompetent (although the lawyer who argued the case before the judge may have been) as bound by bad law. (As Orac has previously noted, this is true of medical boards in many other states.) If you start with the absurd premise that Burzynski is not responsible for the actions of people he has specifically hired to act on his behalf, as the judge ruled, it becomes much harder to build a case against Burzynski.

Eric,

A common marketing strategy relies on that very principle of cognitive dissonance. The more expensive an item is, the more likely a buyer will be to justify the purchase even if the item turns out to be a disappointment. The more effort one has to expend to get something, the more likely one will convince himself it was worth it. That’s what Burzynski and all the other woo-peddlars exploit.

Gina,

We’re not “harping” on anything. It’s Burzynski who will gladly accept anyone’s money, and tell everyone there’s a chance he can help. Even with DIPG.

Gina,

No DIPG survivors under chemo or radiation. Period.

I assume you are talking about Burzynski’s treatment? Amelia’s father says he has found one survivor after radiation and chemotherapy.

Why harp on something that has zero survivors anyway?

Because offering false hope and relieving desperate people of tens of thousands of dollars for an unproven treatment is despicable. Isn’t losing a child and finding yourself bankrupt even worse than just losing a child? Common decency tells us to warn people about this.

I’m sure you will not allow this comment to be posted.

Wrong again.

“I’m sure you will not allow this comment to be posted.”

Perhaps your level of surety needs to be adjusted.

I’m trying to understand your position, Gina.

Are you saying that because the cancer patient is going to die anyway, it’s perfectly acceptable that Burzynski to impoverish them and ttheir families, unetically charging them of tens (if not hundreds) of thousands of dollars to enroll in Phase II trials he never seems to complete and publish for a treatment that lacks any evidence of efficacy?

@ Gina: You’ve been proven wrong about Orac’s moderating your post. Did you have anything to add to this discussion?

Here again, from St. Jude Children’s Hospital a discussion about DIPG tumors…and the care that kids are given, free of charge:

http://www.stjude.org/baker-DIPG

Parents whose children died from DIPG tumors are donating their childrens’ brain to advance research into this devastating childhood cancer:

http://med.stanford.edu/ism/2011/february/pontine.html

Gina, if Burzynski would offer his treatment free of charge through St. Jude’s, we wouldn’t be harping. We might still think it be bad science, but at least he’d be offering hope instead of fleecing duped parents.

Times like this, my shrivelled black atheist heart really wishes there were a Hell. I’m terribly sorry for Mr. Saunders and his family. Not too long ago, I watched the BBC documentary on Great Ormond St. Children’s Hospital, and the sequence featuring Luna Petaigne (another Burzinski casualty) was just horrifying.

As the child and grandchild of cancer survivors, cancer quacks in particular make me sick.

I can’t believe I never encountered this until today, but this summer Josephine Jones published the e-mail information kit a prospective Burynski patient receives, including all the lies and misleading information.

First off, it costs $500 just to have Burzynski look at the file and consider whether the patient is a candidate.

There are several attachments worth reading. One comment points out that two of the doctors listed at the clinic are not even licensed to practice in Texas.

http://josephinejones.wordpress.com/2012/05/31/the-burzynski-clinic-misleads-prospective-patients/

First off, it costs $500 just to have Burzynski look at the file and consider whether the patient is a candidate.

I do not exaggerate in the slightest when I state that I was nauseated by this.

payable by check, money order, credit card or wire transfer

Are there really 120+ different types of brain tumors? I know it’s a minor point with the letter that Richard Saunders wrote, but I’m just wondering if this is some Burzynski’s BS he tells patients.

We’re not “harping” on anything. It’s Burzynski who will gladly accept anyone’s money, and tell everyone there’s a chance he can help. Even with DIPG.

Narad has pointed out in another thread that far from trying to prove the efficacy of his therapy for anyone to use, Burzynski is anxious to retain exclusive use of the IP and set up a chain of franchised Burzynski Clinics across Asia and the Middle East (channeling the profits through his Cayman-Island holding company for tax-avoidance purposes).

http://www.sec.gov/Archives/edgar/data/724445/000110465912047927/a12-16018_1ex10d10.htm

Narad has pointed out in another thread that far from trying to prove the efficacy of his therapy for anyone to use, Burzynski is anxious to retain exclusive use of the IP and set up a chain of franchised Burzynski Clinics across Asia and the Middle East (channeling the profits through his Cayman-Island holding company for tax-avoidance purposes).

Please advise of your agent for service of process.

You’ve already played this card, DJT. Unfortunately, the Merola copy plainly indicates that this marketing element is still live.

In case anyone missed it, DateLine MSNBC television did an episode last year featuring Dr. Burzynski, Dr. Nicholas Gonzales and Suzanne Somers. The first section of the episode begins here, http://www.msnbc.msn.com/id/3032600/#41718832

Part 4 of the Dateline episode discusses the hair analysis techniques used by Dr. Gonzales. I am not clear on whether Dr. Burzynski uses the same hair analysis techniques as Gonzales. In any case, Dateline investigated this analysis, and it turns out to be a completely bogus analysis based on energy medicine by a woman that runs a spa in Louisiana. It has no scientific validity, although Dr. Gonzales seems to claim this hair analysis technique is very precise and provides information about the rate of the cancer. When people like Orac point out bogus medical and laboratory procedures such as these energy-based readings, it helps me realize that physicians like Burzynski and Gonzales should not be trusted.

I’m reading the Word documents posted on the Josephine Jones site. Burzynski believers chant over and over again that antineoplastons have no side effects. Here’s what it says in the “Information for Physicians” document:

“Potential Side Effects of Antineoplastons:
“Based on previous clinical studies, Antineoplastons may cause the following side effects: blurred/decreased vision, tinnitus, hearing decrease/loss, headache, vertigo, dizziness, slurred speech, hallucinations, photohypersensitivity, depression, anxiety, tiredness, sleepiness, somnolence, forgetfulness, confusion, mood changes, agitation, paresthesias, polyneuropathy (numbness and tingling), arrhythmias, cardiomyopathy, hypertension, abdominal pain, nausea, vomiting, diarrhea, constipation, , swelling, fluid retention or fluid loss, fever, chills, skin rash, thickening of the skin, myalgias, muscle weakness, cramps, arthralgias, polyuria, hematuria, increased thirst, a metallic taste in the mouth, bronchospasm and shortness of breath. Astugenal also has a distinct chemical smell.”

and
“Potential Laboratory Abnormalities Related to Antineoplastons:
“Hypocalcemia, hypo/hypernatremia, hypokalemia, hypomagnesemia, hypo/hyperchloremia, hypo/hyperglycemia, hypoalbuminemia, leukopenia, lymphopenia, granulocytopenia, thrombocytopenia, anemia, hyperbilirubinemia and elevation of liver tests including alkaline phosphatase, AST and ALT. “

There’s a lot of interesting stuff in those Word documents. You’d think they could present the information in a more professional format than a Word document attachment, but they must be trying to save money for their research…oh wait…

A couple of disturbing things jumped out at me on the “Contact Us” page on Burzynski’s website.

The “patient” section is described as “a person diagnosed with cancer or suspecting they might have cancer”. I wonder what they do with someone who “suspects” they might have cancer? It must boost his success rate to treat someone who only suspected they actually had cancer.

And in the dropdown menu for “How did you hear about the Burzynski Clinic?” the first four choices are Natural News, Oz, Mercola and Facebook. Referral from a doctor comes halfway down, as I presume 0% of Burzynski’s clients come from referrals from real doctors.

From the mentioned patient documents:

“The therapy regimen generally lasts up to a year on average for most patients.”

Reminds me of that ER maxim, “all bleeding stops eventually”.

The word document is a very interesting development. Unfortunately, such a document could be altered quite easily by someone else, which might well be a reason why the clinic uses the format: If it’s presented as evidence of their wrongdoing, they can simply dispute its authenticity.

David N. Brown
Mesa, Arizona

kristieinbc,
“My question, the one I can’t find an answer to, is why is the tumor getting smaller?”
This sounds like exactly the kind of thing that feeds “quack” cures. In many ways, the best answer is simply that there’s no reason the critics of the “cure” should HAVE to explain it. The primary burden should be on advocates of the “cure” to show that it played a greater role than any number of other factors. In this particular case, there seems to be no clear evidence what the treatment was applied TO, so the mere “result” is less helpful than usual.

As far as the alkaline diet, I have discussed this at RI before, coming from the background of a geologist. I find the whole thing quite strange. The strangest part to me, which I am quite satisfied to be a very fundamental flaw, is that it seems to treat the “base” side of the pH scale as better than the acidic side, which is nonsense in terms of chemistry. Quite simply, a bleach can make somebody as dead as any acid.

David N. Brown
Mesa, Arizona

Interrobang – I actually dream about Luna. If only Mr Saunders could see that episode, and see how much Burzynski costs the NHS when horrified test subjects return to the UK, not with a cure, but with a litany of horrific side-effects.

Ism I am reminded of a conversation I had many years ago with a very upset School Principal. He wanted me to come to his school to talk the parent of a 16 year old girl who was in the final stages of cancer. She could no longer communicate, was in increasing pain and totally incapable of performing any activity of daily living without full assistance.

Her mother was in his school office crying because the local Rotary wanted to raise funds to send her daughter to the other side of the country for experimental treatment being offered by a clinic. She was crying because she didn’t want her daughter to go through the suffering, separated from most of her family for something that would only extend her dying not her living. She was wracked with guilt and had turned to the Principal as someone who had helped her navigate her daughter’s slow decline over 10 or so years with great compassion and realism about what care was necessary.

It was a very sad and difficult position the local Rotary- with the purest of intentions had placed this mother and daughter in. I admired this family so much for deciding to stay at home but ask the Rotary group to help raise money to make the last months this young woman had filled with as many wonderful loving moments as possible.

Oops – hit submit too soon.
The point I was trying to make was that whatever the family decided to do would have been after a great deal of consideration, tears and doubts. There were no wrong decisions in this instance as for yours. Just decisions.

“given that the area is shrinking it is hard to convince her she needs to seek real medical treatment. My question, the one I can’t find an answer to, is why is the tumor getting smaller? And if this helps answer that question, she said it never did feel like a classic lump. It was more of a hardening, almost inflamed area.”

Without physical examination and imaging studies it is difficult to know why this person’s tumor appears to be shrinking. One answer might be that it actually is getting smaller for whatever reason. Or an inflammatory reaction around it is subsiding and the actual tumor size is the same or greater. The tumor could be undergoing necrosis/cystic degeneration, which sounds positive – but may not be in a clinical sense (there are many tumors which during their evolution undergo considerable necrosis, but this often correlates with aggressive behavior, if the necrosis is not secondary to treatment). In melanomas, the entire tumor may seem to disappear (regress), but when you see this on tissue biopsy it is an ominous sign that correlates with metastasis (as a pathologist, I have seen this occur).

So we can’t say why a particular person’s tumor appears to be shrinking, if it’s actually shrinking at all or what that means without adequate evaluation.

Hi – I’m highly skeptical of this guy myself but does anyone know about this case which is highlighted in his movie and could provide some insight into how this guy’s daughter’s tumor may have disappeared?

http://www.youtube.com/watch?feature=player_embedded&v=0QqAzs0TF6A

Also there are some testimonials on his website that are quite convincing with multi year followups. I did find one person that admitted that she had his therapy for only a month then went on standard chemotherapy. However I’m not sure that is the case for the rest of them. How common is spontaneous remission which may explain these?

@Dingo:
If the clinic made promises to arrange appointments with Burzynski and failed to deliver, Burzynski would have fairly strong “deniability” , even if the promise was nominally in his name. After all, it is “business as usual” in business to hire copy writers, lawyers, secretaries, etc. to communicate on one’s behalf. In any event, this strikes me as better grounds for a business fraud complaint than a charge of medical fraud.

@Dangerous Bacon,
As far as that goes, it’s possible the diet change did some good. As near as I can make out, the core proposition of the “alkaline diet” is simply to reduce or remove meat and dairy, and the potential benefits of doing so have been argued plausibly without dragging in the “acidic bad, basic good” weirdness.

“How many times have we seen families continue to raise money for the clinic even after the patients have died?”

Lots of times. They can’t admit that they a) made the remainder of their cherished loved ones’ lives painful and unpleasant, and b) spent a lot of money on treatments that didn’t work. Just like there are people that can’t admit that invading Iraq was a mistake.

Thanks Orac for posting this. It’s everything I wanted to say when I saw his comment on the other thread, and more.

We understand that it is in human nature to question, and many people will not just take something on faith alone.

Well, no. Why should we take medicine on faith alone? It should be proven safe and efficacious first.

I don’t want anyone to think we just take things at face value and accept them – we consider what we see, what we are told, and get as many opinions as we can.

I’m glad the Saunders family is getting second opinions at least.

.. I’m also confused: on another thread someone mentioned that B’s clinic isn’t taking children. It’s obvious that they are. Is there some misinformation being given by their own marketing machine? It seems even fans can’t get their stories straight. (After seeing the marketing info at the JJ link posted above, I guess I have my answer)

@Pareidolius

Brian Deer? Where is his investigative talent when you need it…

@MSII

It seems as if the families are blind to the reality that he can’t and didn’t do anything to help, but they continue to justify and support their decisions and in some cases convince themselves that going to Houston actually was beneficial.

I think it’s like the reverse of what anti-vaxxers do. So convinced that they need to do everything they can to save their child, they’ll buy into the idea completely. The alternative is to think they let their own child die when they could have saved them. That would be a heady combination – overwhelming fear and panic, plus hope, any hope, every hope.

Also, thanks for that Josephine Jones link.

Just a small comment that RANO criteria would likely be more useful for MRI and brain imaging than RECIST.

Another question: on the JJ link, the email suggests that individual permission could be obtained from the FDA for treating the child. Is that actually do-able considering the number of times he’s been told to only use antineoplastons in trials?

OMFG… I just discovered this:

The accommodation file has in its first listing, accommodation for hire. The contact person is ‘Adam Golunski’, who also is the person who sent the email – the employee in the role of International Relations with the clinic. I *severely* hope he’s only acting as an unpaid representative of the actual renter of the property.

(It’s also nice that they refer patients and their families to condos that aren’t wheelchair accessible. Their ‘first do no harm’ text on the logo is made even more ironic by that)

Forgive the numerous comments, and the length…

Yet more questions/thoughts due to the stuff from the JJ link:

I note the payment for initial review of medical info requires payment directly to Dr B; not his organisation, or a fund of some sort, but him directly. Come on now, surely people would realise that’s a huge red flag?

As for the fees, that is ridiculous, as we have all pointed out many times before.

While not inexpensive, this therapy may be less expensive than standard radiation or chemotherapy treatments.

Uhuh – unless those treatments are part of trials, in which case they cost nothing.

As yours is supposed to do.

Once the therapy has begun and the medications and dosages are determined, the clinic’s insurance department can submit the paperwork to the patient’s insurance company for a decision. The patient must be prepared to pay the
expenses up front until a decision is made.

Wouldn’t you want to check with your insurer first?

.. Regarding the Karnofsky Performance Scale, would that have a potential to skew who they select? Is that a tool that’s used regularly by other researchers/doctors in accepting patients?

And worth reposting from the comments on the link, Adam said this:

Funny that all the information that the clinic needs to decide whether the patient is eligible for the “gene targeted therapy” doesn’t seem to include any genetic information. Doesn’t sound very “gene targeted” to me!

Agrippina, another commenter there, noted this:

Introduction states that international patients enrolled in Dr. B’s trials must have permission from their ministry of health in order to receive ANPs by mail shipment. In the UK my guess is this would be the MHRA. Has such approval been granted for UK patients enrolled in Dr. B’s trials?

Those complaining about the UK’s cancer care act might want to look into this… Maybe there’s a way to inforce it for Dr B. Also, can they legally ship the antineoplastons overseas?

.. The ‘how they work’ file includes a lovely bit of argument from antiquity. Even the most modern research cited is several decades old.

The ‘for docs’ file includes this:

Atengenal composition:
A synthetically derived sterile solution in a 4:1 ratio of sodium
phenylacetylglutaminate (PG) and sodium phenylacetylisoglutaminate (iso PG).

Astugenal composition: A synthetically derived sterile solution in a 4:1 ratio of sodium phenylacetate (PN) and PG.

I am not sure of chemical descriptions, so can someone tell me if these two are significantly different to each other?

There’s also a bit in there about pregnant women on antineoplastons: they recommend that contraceptives be used because they don’t know the effects of anineoplastons on pregnant women. (Sheesh!)

In the ‘info for layman’ file, they note that special exceptions via the IRB to use the antineoplastons are available and that

it usually takes at least 24 – 48 hours for the board to review and grant provisional approval for patients to start antineoplastons. [..] note that this usually takes 24 – 48 hours for FDA approval AND an ADDITIONAL 24 – 48 hours for IRB approval.

That’s one speedy review by the IRB. Is that normal?

.. Under the ‘doctors at the clinic’ heading, they note the team, plus

Dr. Weaver will perform your physical examinations and evaluate you every weekday while you
are in Houston, and supervise your care via the research associates once you return home. The
research associates will obtain your initial medical history, evaluate you on weekend days in
Houston,and once you return home, will call you to review blood tests, make medication changes, and
address any problems or symptoms. The same research associate who takes your initial medical history
will follow you the entire time you are participating in the study.

And there’s no mention of Dr B having anything to do with the treatment other than being on the list (as principal investigator). Also, what the hell is a ‘Certified Clinical Research Professional’?

Lastly, the ‘intro’ file says this:

Several independent reviews by respected mainstream scientists are available, including one performed by the National Cancer Institute (NCI), which has called for further trials to determine the response rate, which provided the impetus for the current Phase II trials.

I love how they pretend that the study wasn’t cancelled because the head of their clinic wouldn’t agree to how the study was going to be run.

I could go on, you could pick apart practically every paragraph from every one of those files. Especially the bit about Dr B’s bio, which never actually references any studies that supposedly replicate his work. There’s even a sort of quack miranda at the end.

Get ready Burzynski “FANS!!!”
Burzynski: Cancer Is Serious Business Part II
Coming Early 2013 (Trailer time: 5:09)
http://www.burzynskimovie.com/index.php?option=com_content&view=article&id=135:chapter-2-2013&catid=39:short-news-updates-front-page-phot
Statement by David Kessler, FDA Commissioner, The White House, C-SPAN, re Antineoplastons.
Statements from SRB, individuals, medical professionals,
FOX 26 News, Dr. Masakazu Sawanobori, Tokyo, Japan.
http://www.biomedexperts.com/Profile.bme/1249742/Masakazu_Sawanobori
Book by Sawanobori including information about him:
http://en.d21.co.jp/books/vitamin-c-as-effective-cancer-treatment

Narad, are you paying attention? Orac blogged that “[a]ssuming Mr. Saunders reads this…”, so I posted that so if Mr. Saunders reads Orac’s above blog, that hopefully he might scroll down & see my post.

While not inexpensive, this therapy may be less expensive than standard radiation or chemotherapy treatments.

I find it heartbreaking that someone in the UK would pay for treatment at Burzynski’s cowboy clinic when their child could be treated for nothing at the John Radcliffe Hospital, which is a world class institution affiliated with Oxford University.

@Didymus

If you’d care to read the promotional materials provided via the Josephine Jones link, you’ll see that the Burzyinski Clinic goes out of their way to ensure that they differentiate themselves from chemo.

But then, that would require reading something, which you seem clearly unable or unwilling to do.

Assuming Mr Saunders reads this blog, I hope he reads *all* and not some, of the comments. At any rate, Gary Null reporting what he thinks Burzyinski has said is not the same as posting what Burzyinski (and clinic) actually promote. If you’d taken the time that I did, you’d actually see that the clinic states that traditional chemo is used because the FDA requires them to offer it as part of the trial. In actual fact, the promo materials make it sound as if every person is required to do it, but if they were presenting a proper study, they’d outline that some people would be getting trad. chemo + placebo, or trad. chemo + antineoplastons (alternatively, chemo by itself, or antineoplastons).

Their marketing is clearly and undoubtedly misleading. Which is probably why you’re so confused as to what they say about it.

Upon re-reading I see this needs clarification:

If you’d taken the time that I did, you’d actually see that the clinic states that traditional chemo is used because the FDA requires them to offer it as part of the trial. In actual fact, the promo materials make it sound as if every person is required to do it, but if they were presenting a proper study, they’d outline that some people would be getting trad. chemo + placebo, or trad. chemo + antineoplastons (alternatively, chemo by itself, or antineoplastons).

What I meant was, the clinic make it sound like trad. chemo is offered in addition to whatever they are providing. I have no medical knowledge, so I can only rely on what Orac notes about the differences between antineoplastons and trad. chemo. However, basic high school science gets you past study methodology, so suggesting that the FDA requires provision of trad. chemo as well as the antineoplastons is misleading.

The marketing materials seem to go out of their way to suggest that it’s a study, but not a double-blind one. Or even single blind. (To be single blind you’d have to not inform your patients whether they’re getting placebo or not) Telling ‘study participants’ up front that they’re getting chemo plus antineoplastons creates an awfully large confirmation bias problem.

OT- but it’s Sunday and is woo vs woo ever TRULY OT @ RI?
Didn’t think so.

Mike Adams informs us that Dr Oz has sold out to Big Farmer: it seems that the television surgeon has declared that folks who fuss about organic and GMO-free foods are “snooty” and “elitist” ( Oddly, I have a few other adjectival phrases to describe them which I will leave to your imagination).

Previously the other idiot ( PRN) told his audience that Oz was fine when he appeared on the woo-meister’s public tv woo-fest years ago but he has since gone over to the dark side by not broadcasting full-throttle anti-vacciniana.

These guys used to rave about how the popularity of a fellow like Oz illustrated that Orthodox medicine was transforming itself into something more appealing to their own taste ( i.e. woo-tinged speculation).

Trouble in paradise? Isn’t life grand?

Narad, are you paying attention?

I’m not the one posting the same, now incoherent, material in multiple comment threads, if that’s what you mean.

Didymus Judas Thomas
Los Estados Unidos de América
December 2, 2012

Spamming on multiple threads?

The marketing materials seem to go out of their way to suggest that it’s a study, but not a double-blind one. Or even single blind.
I can’t really convince myself that people are paying Burzynski’s fees in exchange for a 50% chance of receiving standard therapy.
His entire network of promotional websites emphasises the “miracle cure” aspect. There is no control group.

Every once in a while I like to post the link to this interview with Dr. B. to give people a glimpse into the deranged mind of the lone, brave, maverick doctor. Remember, this interview was done on the record and Burzynski knew he was talking to a reporter. Here are some of my favourite nuggets, followed by a link to the full interview in the Houston Press only four years ago.

The interview starts off seemingly as a puff piece, but hang on because the truth comes out very quickly. It’s long, but there is so much damning information that is worth seeing. Burzynski hangs himself several times.

Here’s one of my favourite sections:

“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 — even after the prolonged litigation with the FDA — 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?”

And another gem:

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 — 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-­certified.” The ABMS does not recognize “anti­-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.

“Certainly, some doctors don’t like me, because they would like to do whatever I did, okay?” Burzynski says. “Everybody would like to establish his own pharmaceutical company…They are begging for scraps from the government. They are living on grants. I did it [by] myself.”

Read the whole thing here:

http://www.houstonpress.com/2009-01-01/news/cancer-doctor-stanislaw-burzynski-sees-himself-as-a-crusading-researcher-not-a-quack/

BTW, is the Dr. Timothy Gorski pictured in this story any relation to Orac’s “friend”?

The marketing materials seem to go out of their way to suggest that it’s a study, but not a double-blind one. Or even single blind.

As the coffee kicks in I remember that Burzynski purports to be recruiting for a Phase-II trial, to demonstrate *some* benefit; he’s not running a Phase-III trial which would involve the blinded comparison against another treatment.

Indeed, if DJT is correct, Burzynski — impoverished by his philanthropic practices — cannot afford to conduct a Phase-III trial, and his application for permission to do so is purely for promotional window-dressing.

Now let’s flash back to 1996, to an interview Burzynski did in the New York Times (sorry, can’t find the link to original story right now). Almost 17 years later, nothing has changed:

Most researchers who find a promising treatment publish their results in a prestigious medical journal. Dr. Burzynski said he had submitted a paper to The New England Journal of Medicine, but that it had been rejected. “So to hell with them,” he said.

Dr. Burzynski said that as with Einstein and Pasteur, history will prove him right. Cures like his, he said, “have never happened before in medical history, so if The New England Journal of Medicine refuses to publish my paper, why should I waste my time with these fools?”

The F.D.A. has not approved antineoplastons because Dr. Burzynski has never completed clinical trials, controlled tests involving patients taking a new drug intended to prove whether a drug works and is safe.

I found the entire 1996 NYT piece on Burzynski. Another must read.

This story answers the age-old question why hasn’t Stan published any results. Well, according to his right hand man in 1996, it’s because he’s too busy treating patients!!!

The F.D.A. has not approved antineoplastons because Dr. Burzynski has never completed clinical trials, controlled tests involving patients taking a new drug intended to prove whether a drug works and is safe. The agency will not discuss trials that are under way.

The indictment of Dr. Burzynski states that “between 1983 and March 24, 1995, Dr. Burzynski had enrolled and treated only two patients under F.D.A.-authorized clinical trials.”

Dean Mouscher, who is directing the clinical trials for Dr. Burzynski, said Dr. Burzynski was too busy treating patients, running an antineoplastons manufacturing plant, and conducting his own research to enroll patients in clinical trials to satisfy the F.D.A. Mr. Mouscher said he himself had a bachelor’s degree in French and “no medical background.”

Pressed by the courts, Dr. Burzynski has put about 400 patients in clinical trials approved by the agency, Mr. Mouscher said.

“We saw the handwriting on the wall and started putting everyone in clinical trials,” Mr. Mouscher said. The details of clinical trials of new drugs are considered proprietary, the F.D.A. said, but Mr. Mouscher said the agency was allowing Dr. Burzynski to give his drug only to patients for whom all other therapies had failed.

Dr. Burzynski said he already had evidence from his patients’ experience. Some see their tumors shrink and others are cured, he said. And, he said, he can provide doctors who will back him up.

One doctor he suggested, Dr. Bruce Cohen, a neurooncologist at the Cleveland Clinic, said that at the request of an insurance company he had a single session with a boy who had gone to Dr. Burzynski in lieu of receiving chemotherapy for a brain tumor. “His tumor did shrink on the therapy he received from Dr. Burzynski,” he said. That was four years ago, Dr. Cohen said. And, he added, “that was the first and last time I saw that child.”

The full story:

http://www.nytimes.com/1996/07/24/us/to-the-hopeless-a-cancer-cure-beckons.html?pagewanted=all&src=pm

There’s a former patient who now works for the clinic too. After Burzynski “saved his life” he quit his job and went to work fulltime for Stan. I read his profile recently on one of Stan’s fanboi sites.

More evidence Burzynski does in fact trumpet “no chemo”:

From the link Herr Doktor provided to the Burzynski Patient Group site, an official and sanctioned site, there’s a video link on the right to a testimonial that says “Brain Cancer Cured by
Dr. Stanislaw Burzynski with
NO Chemo or Radiation Therapy

@sailor – regretfully, there isn’t enough data from that HuffPo story to determine whether that child’s cancer recovery was helped by cannabis, hurt by it, or unaffected by it. Where are the studies?

Dr. Burzynski said that as with Einstein and Pasteur, history will prove him right.

I guess that rules out a partnership with Dana Ullman.

Burzynski laughs that one off. “Listen your little brain to this thing

You see? You see? Your stupid minds! Stupid! Stupid!

Just a sidebar question here. Two of the testimonials on that Healthy Economist’s website mention that the ANP solution reeks like animal urine. I know in the early days Stan used real urine, but now it’s all synthesized. So why would it still smell like urine? Are there any chemists here can explain?

Denice: “Mike Adams informs us that Dr Oz has sold out to Big Farmer: it seems that the television surgeon has declared that folks who fuss about organic and GMO-free foods are “snooty” and “elitist”…
These guys used to rave about how the popularity of a fellow like Oz illustrated that Orthodox medicine was transforming itself into something more appealing to their own taste ( i.e. woo-tinged speculation).”

“Trouble in paradise? Isn’t life grand?”

Trouble in Oz-land cropped up after the good doctor clarified his position on immunization. He was a hero for a time in antivax circles for saying his kids didn’t get all the recommended shots, Then he came out with a statement supporting vaccines:

ht_p://health.heraldtribune.com/2012/06/05/dr-oz-dont-fear-childhood-vaccinations/

After that NaturalNews accused him of “selling out”, in an article which claimed Oz was making unsubstantiated statements about vaccines that could not be backed up by science (I couldn’t read any more of the NN article because I was injured by shrapnel from an exploding irony meter).

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