Respectful Insolence

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.

Comments

  1. #1 Guy Chapman
    November 30, 2012

    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.

  2. #2 Dangerous Bacon
    November 30, 2012

    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

  3. #3 Denice Walter
    November 30, 2012

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

  4. #4 T.
    November 30, 2012

    “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 :(

  5. #5 Den!s
    November 30, 2012

    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?

  6. #6 Pareidolius
    November 30, 2012

    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.

  7. #7 Marc Stephens Is Insane
    November 30, 2012

    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.

  8. #8 lsm
    November 30, 2012

    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.

  9. #9 kristieinbc
    Canada
    November 30, 2012

    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.

  10. #10 Marc Stephens Is Insane
    November 30, 2012

    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.

  11. #11 Gina
    November 30, 2012

    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.

  12. #12 lsm
    November 30, 2012

    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.

  13. #13 Eric Lund
    November 30, 2012

    @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.

  14. #14 Marc Stephens Is Insane
    November 30, 2012

    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.

  15. #15 Marc Stephens Is Insane
    November 30, 2012

    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.

  16. #16 Krebiozen
    November 30, 2012

    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.

  17. #17 Thomas
    November 30, 2012

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

    Perhaps your level of surety needs to be adjusted.

  18. #18 JGC
    November 30, 2012

    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?

  19. #19 lilady
    November 30, 2012

    @ 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

  20. #20 Mu
    November 30, 2012

    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.

  21. #21 Interrobang
    November 30, 2012

    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.

  22. #22 Marc Stephens Is Insane
    November 30, 2012

    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/

  23. #23 Narad
    November 30, 2012

    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

  24. #24 Michael
    http://www.skepticalraptor.com/skepticalraptorblog.php
    November 30, 2012

    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.

  25. #25 Narad
    November 30, 2012

    Lotta stuff up there, man. That’s legit.

  26. #26 herr doktor bimler
    November 30, 2012

    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

  27. #27 Narad
    November 30, 2012

    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.

  28. #28 Narad
    November 30, 2012

    Actually looking at the 2007 WHO classification, I’m somehow both stunned and cheered by the nosology, if with a certain element of the “everything that rises must converge” sense.

  29. #29 Didymus Judas Thomas
    The United States of America
    November 30, 2012
  30. #30 Narad
    November 30, 2012

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

  31. #31 S
    November 30, 2012

    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.

  32. #32 Yodelady
    November 30, 2012

    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. “

  33. #33 Marc Stephens Is Insane
    November 30, 2012

    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.

  34. #34 Marc Stephens Is Insane
    November 30, 2012

    I should have included the link to the Contact Us page I just referenced:

    http://www.burzynskiclinic.com/contact-us.html

  35. #35 Scote
    December 1, 2012

    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”.

  36. #36 David N. Brown
    December 1, 2012

    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

  37. #37 David N. Brown
    December 1, 2012

    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

  38. #38 elburto
    December 1, 2012

    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.

  39. #39 Quokka
    December 1, 2012

    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.

  40. #40 Quokka
    December 1, 2012

    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.

  41. #41 dingo199
    December 1, 2012

    Just wondering wht the Texas medical Board failed to nail Burzynski because he was not the person delivering the direct care to the patients, when the email he sends to patients specifically says this:
    “Patients with brain tumours can be treated only under Dr. Burzynski’s direct care and it will be most likely intravenous treatment. ”

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

  42. #42 Dangerous Bacon
    December 1, 2012

    “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.

  43. #43 Karl
    December 1, 2012

    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?

  44. #44 David N. Brown
    December 1, 2012

    @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.

  45. #45 Phoenix Woman
    December 2, 2012

    “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.

  46. #46 flip
    December 2, 2012

    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.

  47. #47 Mooselet
    Brisbane Australia
    December 2, 2012

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

  48. #48 flip
    December 2, 2012

    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?

  49. #49 flip
    December 2, 2012

    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)

  50. #50 flip
    December 2, 2012

    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.

  51. #51 Didymus Judas Thomas
    Los Estados Unidos de América
    December 2, 2012

    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

  52. #52 Didymus Judas Thomas
    Stany Zjednoczone Ameryki
    December 2, 2012

    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.

  53. #53 Krebiozen
    December 2, 2012

    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.

  54. #54 flip
    December 2, 2012

    @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.

  55. #55 flip
    December 2, 2012

    People should check out the excellent and heavily resourced post on Josephine Jones that recaps a lot of the info about Burzyinski. It’s a bit of an encyclopedia of newspaper articles, blogs, papers, and a historical account of various issues:
    http://josephinejones.wordpress.com/2011/11/29/burzynski-blogs-my-master-list/

  56. #56 flip
    December 2, 2012

    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.

  57. #57 Denice Walter
    December 2, 2012

    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?

  58. #58 Narad
    December 2, 2012

    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.

  59. #59 herr doktor bimler
    December 2, 2012

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

    Spamming on multiple threads?

  60. #60 herr doktor bimler
    December 2, 2012

    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.

  61. #61 Marc Stephens Is Insane
    December 2, 2012

    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”?

  62. #62 herr doktor bimler
    December 2, 2012

    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.

  63. #63 Marc Stephens Is Insane
    December 2, 2012

    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.

  64. #64 Marc Stephens Is Insane
    December 2, 2012

    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

  65. #66 herr doktor bimler
    December 2, 2012

    Dean Mouscher, who is directing the clinical trials for Dr. Burzynski, [...] said he himself had a bachelor’s degree in French and “no medical background.”

    Dean Mouscher became a committed member of the team because his father died after the Burzynski treatment.

  66. #67 Marc Stephens Is Insane
    December 2, 2012

    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.

  67. #68 Marc Stephens Is Insane
    December 2, 2012

    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

  68. #69 Marc Stephens Is Insane
    December 2, 2012

    Sorry, the link is on the left of the page.

  69. #70 Mephistopheles O'Brien
    December 2, 2012

    @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?

  70. #71 Narad
    December 2, 2012

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

    I guess that rules out a partnership with Dana Ullman.

  71. #72 Marc Stephens Is Insane
    December 2, 2012

    Narad,

    He’s also a year overdue for his Nobel Prize.

  72. #73 herr doktor bimler
    December 2, 2012

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

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

  73. #74 Marc Stephens Is Insane
    December 2, 2012

    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?

  74. #75 Dangerous Bacon
    December 2, 2012

    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).

  75. #76 Yodelady
    December 2, 2012

    @Flip Legitimate clinical trials often specify what performance level the patient has to meet — I think there are a couple of different performance scales. And I think the caution against conception is pretty standard — a lot of chemos attack rapidly dividing cells, so you don’t want an embryo exposed to them. You can look at clinicaltrials.gov for examples of what trials in the U.S. involve.

    Did Burzynski specify the life expectancy of the person entering the trial? In the clinical trial protocols I’ve looked at, they usually specify that. You want the patient to survive long enough to give meaningful data., if you intend to collect meaningful data.

  76. #77 Militant Agnostic
    December 2, 2012

    @Denice – (Ned Seagoon voice) What what what what what.

    Dr. Oz calling the anti GMO crowd “snooty” and “elitist” after the way he treated Orac’s Scibling Pam Ronald when she debated a Natural Law Party* whackaloon about GMOs? What is next – same sex marriage in Utah? We are living in the end times I tell you – Armageddon is nigh.

    *the political wing of the Transcendental Meditation cult.

  77. #78 Narad
    December 2, 2012

    Are there any chemists here can explain?

    No doubt, but I’ll give it a go all the same. Phenylacetate has a characteristic musty odor that sometimes manifests in urine.

  78. #79 frozenwarning
    December 2, 2012

    Hi Richard,

    At the risk of repeating what Orac has said, thanks for your post on here, it can’t be easy for you to enter what you see as a lion’s den of scepticism. You are clearly amazing parents who want to do the very best you can for Amelia. I can assure you that no-one, absolutely no-one is criticising you, or the choice you have made. What they are criticising is a man who sells false hope to desperate cancer patients. I can’t begin to imagine what it must be like to have a child with a terminal illness. It is, without a doubt, beyond our worst imagining. Most people are touched by cancer though, in one way or another. Personally, I’ve also lost several relatives to cancer, including my much loved brother 2 years ago, and the daughter of a good friend died of a brain tumour at the age of 8. I’ve also cared for many patients with life limiting diseases, including cancer. So, we do have some experience, and can empathise to some extent with your burden.
    The cost of Burzynski’s treatment is a bit of a side issue. We are so lucky to have the NHS in the UK, so we don’t have to think about it, and we know US healthcare costs are tremendously high. The issue with the cost is that it is outrageous to charge patients for taking part in clinical trials. This is simply not done. You may say he’s not charging for the antineoplastons, but he is charging for everything else that goes with a clinical trial and that is unethical. To be honest he wouldn’t make any money from ANPs because it’s a cheap as chips drug he’s using.
    On the issue of chemotherapy, firstly, ANPs, as has been pointed out, are chemotherapy, despite what Burzynski has told you. Traditional chemo has side effects, yes, but so do ANPs. You know this if you have read the NCI information on this treatment. It is absolutely not non toxic. The word natural is often bandied about by Burzynski supporters, presumably because they believe “natural” equates with safe. Well, smallpox is natural. However, to use the word about ANPs is nonsensical.
    You say: “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.”
    We don’t need “real word experience” of any treatment, what we need is good quality trials published in good quality scientific journals so that others can replicate and confirm his results. That is how science works. I have no doubt you’ve searched for information on these tumours and haven’t found anything that can guarantee a cure, but neither have you found anything that says Burzynski has a cure, because he refuses to publish his results in anything other than poor prehistoric preliminary data which tells us precisely nothing. Burzynski claims to have treated thousands of patients over 35 years, and yet he doesn’t have enough data to publish one decent paper? All we have is a handful of anecdotes, mainly historic, with no proof that they were cured by ANPs and a lot of them died subsequently.

    I’m sorry you feel blogs like this harm patients, but if you really feel that, please don’t read them. Unfortunately, most scientists and doctors abhor the way Burzynski operates and our aim is not to stop you using his clinic, it’s too late for that, it’s to stop other people being persuaded to waste precious time going there. To us, this is absolutely the worst kind of scam.

    We are well aware there are many different types of cancer, which is another massive red flag about Burzynski. The idea that one drug can cure the number of cancers that he claims is utterly ludicrous. Add to that his claims that it can be used in anti ageing creams and anti cancer toothpaste means that red flag grew so big it blocked out the sun.

    Put it this way, if someone was telling you that they could cure cancer by making patients drink bleach, would you do it? Would you think that person should be allowed to sell this “miracle” for extortionate amounts of money to desperate patients and no-one should ever challenge it? Believe it or not, there are people who do just that, and they too produce anecdotes about people who have been cured, Nonsense of course.

    There are many quack therapies out there, as I’m sure you know, from homeopathy to IV Vitamin C, from “nutritionists” to witch doctors. The difference with Burzynski is that he tries to wrap up his lucrative product in scientific language, like gene targeted therapy, which it most certainly is not, and superficially conducting clinical trials, which I can tell you from many years of experience, he is doing very, very badly and unethically.

    I sincerely hope you have Amelia for a long time to come, and wish you the very best. I just hope you realise that just as your intentions are good, so too are ours.

  79. #80 flip
    December 2, 2012

    Interesting — this file has a consent form for the clinic. But it does not include any field/area that you tick off to say you understand anything about the side effects, benefits, risks, or how the treatment works. But there is a place to say you understand the payment amounts, that you’ll have a financial officer assigned to you, and someone for insurance purposes.

    http://josephinejones.files.wordpress.com/2012/05/burzynskiclinicinfo-cr.pdf

    @HDB

    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

    Hmm, I’d written my above comment (re: consent forms) before going to do something else and planned to post it when I got back – and now your comment is very apt. I agree, the way they portray it all is very much like they’re offering an ‘experimental’ treatment in the sense that it’s just been approved. They always make Dr B sound as if he’s been on the cutting-edge for 30 years; but in reality, he hasn’t moved on from that edge, whilst others have built bridges to things that work.

    Every document I read of their own materials only serves to convince me even more of the fact that they’re not providing proper consent or information.

    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.

    I think they mix themselves up, although I’m tired and can’t remember exactly. I think they mention both phase II and III in their materials. Feel free to correct me if I’m wrong. At any rate, they barely mention anything about the study at all. I didn’t see anything really about how/why/what they’re studying, and glossed over it to the point where it, as I said above, makes it seem like it’s been ‘newly approved’, rather than ‘not proven to work yet’.

    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.

    Even a crappy movie costs money I suppose… ;)

    @MSII

    I read that article too, and it always suggested to me that Burzyisnki sees himself as a businessman, not a doctor. The fact that he is wanting to expand east into Asia says a lot. Thinking about him in comparison to Wakefield, I think I see why Dr B is so difficult to prosecute: he’s far slicker at hiding the scam than Wakefield was.

    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?”

    (Above taken from the article) Oddly enough, his CV suggests he had enough money for degrees, and had a job before quitting it in order to start his company. To say he only had $15 is a bit much – maybe when he arrived, but not by the time he was ready to start his own business.

    @Yodelady

    Legitimate clinical trials often specify what performance level the patient has to meet — I think there are a couple of different performance scales. And I think the caution against conception is pretty standard — a lot of chemos attack rapidly dividing cells, so you don’t want an embryo exposed to them. You can look at clinicaltrials.gov for examples of what trials in the U.S. involve.

    Thanks for that – boy, this site sure does give me a lot of homework ;)
    I agree that caution on conception is standard, but it was the phrasing. They weren’t saying “we don’t know what effects this will have on a baby, so we won’t use them on pregnant women or people hoping to get pregnant in the near future”. Surely the precaution principle is simply to avoid taking the meds while pregnant in the first place? (Especially in a trial that’s just looking for efficacy in the first place?)

    Did Burzynski specify the life expectancy of the person entering the trial? In the clinical trial protocols I’ve looked at, they usually specify that. You want the patient to survive long enough to give meaningful data., if you intend to collect meaningful data.

    They were lists of percentages of outcomes for various types of cancers. It went over my head for the most part, so I’d recommend checking yourself as to whether or not it was meaningful or impressive.

  80. #81 Krebiozen
    December 2, 2012

    MSII,

    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?

    I have probably dealt with more gallons of other people’s urine than most here, so I’ll have a go at answering this. What people usually think of as the smell of urine is mostly due to ammonia released by the bacterial breakdown of urea. Fresh urine from a healthy person is usually fairly odorless, though it can carry an odor of foods recently eaten by the micturator – sugar puffs, asparagus and curry spring to mind. There is also a characteristic smell of urine when boiled with acids, which we used to do as a laborious method of measuring urinary steroids (the Zimmermann reaction as I recall). I used to quite like that smell, a sort of fruity acidic smell, though it’s somehow disconcerting finding oneself liking the smell of someone else’s boiling urine.

    I don’t know exactly what phenylacetates (which is essentially what all antineoplastons are) smell like, but they are described as having a foul odor. I suspect that a foul odor plus the association of Burzynski’s concoctions with urine is what leads people to think of them as smelling of urine.

    It is also possible, as Narad suggests, that part of the smell of urine is due to phenylacetyl glutamine, which is the usual metabolic end product of phenylacetates in the human body.

  81. #82 Narad
    December 2, 2012

    Fresh urine from a healthy person is usually fairly odorless, though it can carry an odor of foods recently eaten by the micturator

    I had a pamphlet of some sort years ago that had a dire yet cartoonish illustration of the dangers of micturation syncope of which I was pretty fond. I am nonetheless perplexed by this collection.

  82. #83 Narad
    December 2, 2012

    ^ Gah, “micturition.” It’s a psychic typo that refuses to die.

  83. #84 Denice Walter
    December 2, 2012

    Believe it or not, phenylacetic acid is used in perfumery to create scents that suggest honey and/ or urine.
    If you like that sort of thing.

  84. #85 Narad
    December 2, 2012

    Naveen Kumar is rocking. I present Yogic Management for Unwanted Hair.

  85. #86 Militant Agnostic
    December 2, 2012

    Krebiozen

    I used to quite like that smell, a sort of fruity acidic smell, though it’s somehow disconcerting finding oneself liking the smell of someone else’s boiling urine.

    Is it much less disconcerting to find oneself liking the smell of one’s own boiling urine? – Asking for a friend.

  86. #87 Chemmomo
    Regained my sense of smell now that I'm not in a lab daily
    December 2, 2012

    So why would it still smell like urine?

    Short answer: if it’s one of the chemicals which contributes to the odor of urine, it will still have the same odor even when it hasn’t come out of someone’s kidneys.
    But is it one of those? I’ve never worked directly with phenylacetate, but I’ve worked with a lot of different chemicals. Some types of compounds smell good: ( ironically) benzene, most esters (which are used in flavorings), aldehydes (also often found as flavorings, such vanillin, cinnamaldehyde – you get the picture) – things made up mostly of C, H, and O atoms only.

    Certain types of compounds tend to smell bad. This includes sulfides, amines (compounds with nitrogen in them, such as ammonia or urea) and small carboxylic acids (even though they are C, H, and O only as well). For example, butyric acid is the compound responsible for the foul smell of rancid butter. I would not be surprised to find that phenylacetic acid falls into the stinky category.

  87. #88 Karl
    December 2, 2012

    Another person getting scammed by Burzynski. Spending all his money and trying to raise donations online for his sister:

    http://www.youtube.com/watch?v=ZhMfTqZ7Fqc

    Burzynski told him that his sister with pancreatic cancer had a 55% chance of survival.

  88. #89 Marc Stephens Is Insane
    December 2, 2012

    Thanks to all for the stinky chemistry lessons. I knew the smell of ammonia was often associated with urine, but didn’t know there were so many odorific elements to pee. Of course I’ve experienced the “asparagus effect” myself so I know how the odor can change according to diet.

  89. #90 S
    December 2, 2012

    @Karl, this seems to be an earlier video with a plea from the patient.

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

    She has both liver and pancreatic cancer. Her oncologists told her she had 3 to 6 months to live. Burzynski told her that he could help her, if only she had more money.

    This is some messed up stuff.

  90. #91 Marc Stephens Is Insane
    December 2, 2012

    S,

    That video is both heartbreaking and infuriating at the same time. 55% chance of survival? What bloody chutzpah.

  91. #92 Yodelady
    December 2, 2012

    @ flip
    “I agree that caution on conception is standard, but it was the phrasing. They weren’t saying “we don’t know what effects this will have on a baby, so we won’t use them on pregnant women or people hoping to get pregnant in the near future”. Surely the precaution principle is simply to avoid taking the meds while pregnant in the first place? (Especially in a trial that’s just looking for efficacy in the first place?)”

    I think you’re right, that is an odd way to state it.

    Burzynski’s “trials” are listed in the database at clinicaltrials.gov. One of them, a Phase II study on Astrocytoma, is here: http://clinicaltrials.gov/ct2/show/NCT00003537?term=Burzynski&rank=1

    You can see others by searching for “Burzynski” in the search engine at the upper right. He does go through the motions of defining the trial, but it’s sure not very restrictive. He does require a life expectancy of more than 2 months. There’s a Phase II trial description testing Sunitinb for Astrocytoma and Gliobastoma here for comparison:
    http://clinicaltrials.gov/ct2/show/study/NCT00606008?term=Phase+II+astrocytoma&rank=3

    And of course the big difference between the trials is Burzynki’s trial opened in 1999 and as of 2009 had not been completed yet!

    I’ve never been in a trial and don’t know what the consent forms are like, but I would guess they’re a lot more detailed than what we’ve seen in that packet of Burzynski’s information for patients.

  92. #93 Narad
    December 2, 2012

    This is some messed up stuff.

    It’s sad and confused. Even if one gets on SSI, Medicare doesn’t kick in for two years.

  93. #94 elburto
    December 2, 2012

    From that drivel written by. Mouscher:

    Human patients exhibited no ill effects from even large doses. Aside from an occasional rash and sleepiness, which are easily reversible, there were no side effects at all.

    Also he claims that there is no toxic amount of. “antineoplastons”. He states that the patient would need such an enormous amount of ANP t(o induce side effects) that it would be physically impossible to get it into their bodies.

    So then, he’s a lying liar who lies in order to trick the desperate and dying, suffering with terminal cancer and end-stage HIV/AIDS. Disgusting.

  94. #95 S
    December 2, 2012

    That video is both heartbreaking and infuriating at the same time. 55% chance of survival?

    I was given a max of 30% chance of recovery by some other quack doctors, not cancer related. I was pulled in by the testimonials and the promises. Frozenwarning’s comment, which in contrast to the screenname was quite warm-hearted and understanding, really has it summed up nicely. I don’t think that most patients understand about how trials are done. It’s just not part of their world – especially if they’ve never been involved in any science or medical field. I’d certainly never given any thought as to how a medical trial should be conducted and published, until after all the money was gone and I was left bewildered as to why I wasn’t all better, but instead much more ill. When you’re sick or a loved one is sick, it’s too easy to be drawn in with the promises and other marketing ploys.

    In my experience, most doctors are not so direct and candid with their patients in pointing out when another doctor is a quack. They are too polite when speaking of their peers, especially to new patients. Whereas here, on RI and SBM, the information is presented in a very direct manner. It is much more helpful and effective this way. But, if I would have read this site years ago, I would have been livid at the way Orac and others were bashing what I perceived as the only doctors that both knew how to help me and were willing to help me. Turns out they didn’t really know how to treat me, but were instead a group of really smooth talkers. They even had all sorts of ‘studies’ and testimonials to prove to me that their treatments had worked for lots of other patients. Talk about science, they have the art of deception down to a science.

    We don’t need “real word experience” of any treatment, what we need is good quality trials published in good quality scientific journals so that others can replicate and confirm his results. That is how science works.

    That’s just a damn hard line to swallow when you’re desperate for help NOW. ‘Waiting for trials’…

  95. #96 herr doktor bimler
    December 2, 2012

    I think they mix themselves up, although I’m tired and can’t remember exactly. I think they mention both phase II and III in their materials. Feel free to correct me if I’m wrong. At any rate, they barely mention anything about the study at all.

    Phase-III trials only work for the Big Pharma business model, where the company is paying the bills and foots the loss in the cases when the drug isn’t an improvement,* in an expectation of a big win when they hit the jackpot. They aren’t workable in Burzynski’s operation — who is going to volunteer for the trial and pay $30,000 for a 50% chance of being assigned to the control arm?

    Burzynski’s promotional material emphasises the *existence* of a Phase-III trial as evidence that he is not a quack, without mentioning the absence of any recruitment of subjects.

    * Or they fudge the results to pretend that it *is* an improvement.

  96. #97 David N. Brown
    December 3, 2012

    @Denice,
    The breach between Dr. Oz and Adams is a predictable manifestation of tension between the commercial successes achieved by “alternative medicine” and their roots in leftist, “hippie” and/or New Age ideology. It could also be a sign of a personal iconoclastic devolution by Adams. I have speculated in comments for other posts that Dr. B seems especially vulnerable to this kind of fratricide, especially as evidence comes out that he is using “Big Pharma” products in his therapy. On that vein, I have noticed that the most prominent mentions of Dr. B on Natural News come from last fall. More recent mentions appear to be primarily reports of media appearances in which Burzynski shared a venue with others. This MIGHT be a sign that even the doctor’s nominal allies have begun quietly distancing themselves from his enterprise.

    David N. Brown
    Mesa, Arizona

  97. #98 elburto
    December 3, 2012

    This MIGHT be a sign that even the doctor’s nominal allies have begun quietly distancing themselves from his enterprise.

    What a Christmas gift that would be.

    That’s the thing about Stan the Conman, the huuuge red flag, that nobody rooted in the SBM or even EBM camps will testify that he’s on the level. Not one doctor or researcher.

    That would have me running (well, crawling very quickly) for the hills. Of course I can hear Burzynski now, “Of course they deny my genius okay, they are jealous okay, because I am the medicine messiah okay? I only have $15 in my bank okay, FDA pulled 419 scam on me and I sent my money okay, that’s why I must charge for my trials okay?”

    S – I’m sorry you were taken advantage of. Giving false hope to the sick and the dying is reprehensible.

  98. #99 herr doktor bimler
    December 3, 2012

    From that drivel written by. Mouscher:

    Out-sourcing and plausible deniability seems to be a recurring theme of Burzynski’s operation, from employing other doctors to prescribe the drugs and remove his personal responsibility, to hiring other people to make the claims that he can’t afford to be seen consorting with.

  99. #100 flip
    December 3, 2012

    @Yodelady

    Thanks for the links! I’ve not been in a medications trial either, so I don’t know what would be on the consent forms. However, one would assume that they would include a check box to say “I understand I may/not receive a placebo”, as well as “I understand the risks and benefits (as outlined in X document, or whatever) of this treatment”, or “I understand this treatment has no proven efficacy or safety and I am undertaking this treatment in order to study and/or establish both”.

    The fact that there wasn’t, but about 3 check boxes to do with finances, worries me.

    @HDB

    After being awake for more than 24 hours, I guess I didn’t make much sense; I’m basically agreeing with you.

    @Elburto

    LOL – great satire.

  100. #101 frozenwarning
    December 3, 2012

    @S
    I can assure you my screenname is nothing more scary than homage to a Nico song :-)

    On the subject of clinical trials, it’s definitely no slight on patients that they don’t understand how they are carried out, or the rules that should be adhered to, because I can assure you many healthcare professionals don’t know either, if they’re not involved in them! Totally understand the frustration of “waiting for trials”, however Burzynski has had half a lifetime to do these trials, whereas real scientists get a cancer drug through all 4 clinical trial phases in 8-10 years.

    What I don’t understand is why people believe Burzynski on subjects like his recent court case. All they have to do is read the court documents to know that he got off by blaming the other doctors who work for him for the illegal treatments. There’s no logic to believing his propaganda on that, when the paperwork is right there for anyone to read. I guess the massive emotional investment just takes over everything.

    On the subject of doctors not criticising other doctors, there is good reason for this, but I tend to agree that it needs more robust criticism when it’s someone selling untested treatments, though there is another, more sensible reason for this other than professional relationships. Often, especially with children, the responsible doctor doesn’t want to alienate the parents who have made what they consider a wrong decision, because that might mean they lose the child to follow up. This means the parents might, in anger or disappointment at the lack of support for a quack therapy, refuse to take the child to see the real physician again, and that would be very bad for the child. It’s a thin line between total honesty and concern for the child’s health.

    I’m sorry you were ripped off. It really is the most heinous crime, taking advantage of the sick.

    @flip
    I wouldn’t expect a consent form to be included in an introductory pack about the clinic.

  101. #102 frozenwarning
    December 3, 2012

    @S
    I can assure you my screenname is nothing more scary than homage to a Nico song :-)

    On the subject of clinical trials, it’s definitely no slight on patients that they don’t understand how they are carried out, or the rules that should be adhered to, because I can assure you many healthcare professionals don’t know either, if they’re not involved in them! Totally understand the frustration of “waiting for trials”, however Burzynski has had half a lifetime to do these trials, whereas real scientists get a cancer drug through all 4 clinical trial phases in 8-10 years.

    What I don’t understand is why people believe Burzynski on subjects like his recent court case. All they have to do is read the court documents to know that he got off by blaming the other doctors who work for him for the illegal treatments. There’s no logic to believing his propaganda on that, when the paperwork is right there for anyone to read. I guess the massive emotional investment just takes over everything.

    On the subject of doctors not criticising other doctors, there is good reason for this, but I tend to agree that it needs more robust criticism when it’s someone selling untested treatments, though there is another, more sensible reason for this other than professional relationships. Often, especially with children, the responsible doctor doesn’t want to alienate the parents who have made what they consider a wrong decision, because that might mean they lose the child to follow up. This means the parents might, in anger or disappointment at the lack of support for a quack therapy, refuse to take the child to see the real physician again, and that would be very bad for the child. It’s a thin line between total honesty and concern for the child’s health.

    I’m sorry you were ripped off. It really is the most heinous crime, taking advantage of the sick.

    @flip
    I wouldn’t expect a consent form to be included in an introductory pack about the clinic.

  102. #103 frozenwarning
    December 3, 2012

    Oops, sorry for double post there

  103. #104 Todd W.
    http://harpocratesspeaks.com
    December 3, 2012

    @flip

    Re: consent form

    That link to Burzynski’s promotional materials doesn’t actually include a valid consent form for study participation.

    A real consent form will explain what the study is, why it’s being done, and give a plain-language explanation of what will occur. It will also include information about how the subject’s information will be used and what the subject’s rights are regarding use of that material (e.g., once published, they can’t rescind permission). It also needs to include a statement of what benefits may or may not accrue to the subject from participation (e.g., remuneration for travel expenses, that the subject may not get any clinical benefit since it is not yet known, etc.), as well as what expenses subjects will have (e.g., that they or their insurer will be billed for x-rays or other care that would be considered standard). There’s also typically some language about who their information will be shared with (e.g., medical billing staff, etc.).

  104. #105 Denice Walter
    December 3, 2012

    @ David N. Brown:

    Interestingly enough, MIke Adams- like Gary Null- tries to simultaneously appeal to both ends of the political spectrum;
    for the left, they try to exude a hippie-ish, back-to-the land, purity of Nature and New Age-y vibe- ( supposedly) non-commercial ( Hah!), anti-corporate, stick-it-to the-Man ( or Woman?)- being brave, mavericks out to overturn the stodgey old anachronisms of the past in revolutionary fashion and YET respect Ancient Traditions of the Elders.

    Then, towards the right, they espouse libertarian ideals of ‘every one for themselves’, small government, anti-nanny state, (totally) free enterprise, a return to revolution ( not the left-ist kind, but the return to things past) to re-establish traditions and values that those leftist hippies and liberals have gone and RUINED.. including a spirituality that doesn’t lean left or East..

    Null calls his brand “Progressive Libertarianism” and is trying to establish political alliances between left and right mavericks. Adams believes that marihuana and hemp will be the economic salvation of western countries. Somehow they weave antithetical ideas into an imbroglio of contradictions that you need a scorecard to dis-entangle.

    Are they seeking peace on earth or merely not to restrict potential customers on political grounds? Guess.

  105. #106 flip
    December 3, 2012

    @Frozenwarning

    There’s no logic to believing his propaganda on that, when the paperwork is right there for anyone to read

    This assumes people know where to look and have the time to find out. If it weren’t for comments here, or the blog posts, I wouldn’t have even heard of any of the free or government sites to find out this information. Not to mention, it’s incredibly American-centric. Many countries, like my own, barely post any records online, let alone entire court case histories and files. And if you’re not aware of how another country works – say if you’re one of these UK parents – you wouldn’t know much about American law sites anyway. I wouldn’t even know where to begin looking without the info from sites like this one; so it’s understandable the general population wouldn’t read, or know, about the court files.

    I wouldn’t expect a consent form to be included in an introductory pack about the clinic.

    The medical consent form? Because the files I’ve been looking at include numerous forms, such as consent for release of medical reports/tests, payment info, patient contact info, medical history, etc. See
    http://josephinejones.files.wordpress.com/2012/05/burzynskiclinicinfo-cr.pdf
    (the other files vary in information, but this is a good example anyway)

    One would think that if they include everything else, they’d also include a short consent form about the trial, receipt of placebos, risks and benefits, etc.

    @Todd W

    That link to Burzynski’s promotional materials doesn’t actually include a valid consent form for study participation.

    That’s my whole point. That it doesn’t seem to exist. They do discuss privacy and the costs of the treatment (as well as reimbursement/insurance) in many of the files posted to Josephine Jones. See my above comment to Frozenwarning. If there is a proper consent form for the study participation, I haven’t seen it so far.

    And if it doesn’t exist, that would explain why many people have complained about not having proper informed consent when signing for treatment.

    You guys need to read the files ;)

  106. #107 leah
    December 3, 2012

    Cancer curing Dr. Burzynski case dismissed
    cancerDecember 2, 2012

    By: Jeffrey PhelpsSubscribe
    .
    After decades and many attempts to silence Dr. Burzynski and his cancer curing techniques, the Texas medical Board and the Western medical establishment are again forced to see their case thrown out.
    Credits: Dr. Stanislaw Burzynski / burzynskiclinic.com 10 Email.Holistic Health newsletter
    E-mail *
    +Show do not change Contact Email Contact Email2 Contact Url Subscribe to Blog Remember my Info . .Related topics
    •cancer•Holistic Health•Crime & Courts•Medicine•Government•Conspiracy.AdvertisementDead silence is all that remains, over a week since the Texas Medical Board was forced to drop their case against Dr. Stanislaw Burzynski. Other than a couple random small-town newspapers, a questionable blog and Saturday’s opinion piece in a tiny Canadian newspaper, no one in the media has been willing to touch the news that, yet again, all charges were dismissed against a certain doctor that has literally and successfully cured cancer on many occasions.

    The Texas Medical Board and the Western medical establishment had been targeting Dr. Burzynski for years and the media was fully willing to document the case against him and chastise his work, prior to the case being dismissed and despite his incredible success record. Strangely, as if the event never occurred, there’s been nothing by the media since.

    .Burzynski: Cancer is Serious Business FDA TyrannyBurzynski: Cancer is Serious Business FDA Tyranny.A multi-billion dollar a year gravy-train is on the line and the establishment’s puppet-media cannot allow everyone to catch on to the fact that many other forms of disease treatment exist and have typically proven to be far more effective than what is (allowed to be) prescribed by Western-trained medical practitioners.

    Nonetheless, Dr. Burzynski is now free, again, to continue practicing the cancer-curing techniques that have been the reason for the target on his back since many in the public became aware of the alternative-minded doctor and his successful techniques. Adding to the staggering mountain of evidence in support of alternative and effective cancer treatments and, unfortunately, the medical establishment, their puppets and the ignorant and witting media that continue trying to silence them.

    Sandi Kavanagh, for instance, a 48 year old woman from Crystal Lake, IL., was diagnosed in January with an aggressive form of brain cancer, known as Glioblastoma multiforme (GBM). As with the vast majority of cancer patients, Kavanagh’s cancer did not respond to the traditional radiation and chemotherapy which is largely recommended by most (Western) doctors as one of the few options they are allowed to give their patients, or risk losing their medical license.

    Refusing to give up, Kavanagh and her family began to research for alternative ways to treat her condition, something people are doing more and more often these days. Realizing that “modern” science had nothing more to offer and unwilling to except that she only had “two to three months to live,” according to typical Western medicine, Kavanagh decided to undergo a treatment she found that treats cancer with Antineoplastons. Remarkably, Kavanagh reports that an MRI scan revealed her tumor shrank by 33 percent, prompting her to continue Dr. Burzynski’s treatments. Mrs. Kavanagh plans to do another scan on December 13, 2012 to continue monitoring her progress.

    The story of these miracle Antineoplastons begins with the man who first discovered their effectiveness in the treatment of cancer in 1967. Dr. Stanislaw R. Burzynski, M.D., Ph.D., was the physician and biochemist researcher responsible for identifying natural occurring peptides and amino acid derivatives, or “Antineoplastons,” as he later named them, in the human body.

    He discovered they are the components of a biochemical defense system that controls cancer growth without destroying normal cells, largely deficient in cancer patients, in comparison to healthy individuals. In 1977, after authoring and co-authoring numerous publications, including five on the subject of his peptides research, Dr. Burzynski founded his clinic in Houston, TX where he began to treat patients using his remarkable discovery, with incredible success. Such success, in fact, that soon cancer patients from all over the United States began to travel to obtain this miracle treatment.

    Surprisingly, neither the efficacy of Dr. Burzynski’s treatment, as evidenced by the rapid recovery of his patients, nor the safety of Antineoplaston as a cancer treatment…with virtually no dangerous side-effects, was enough for the medical establishment to support this medical pioneer, or at the very least, leave him alone to continue his success. Instead, in 1984 the Texas Board of Medical Examiners, under pressure by the (medical establishment-controlled) FDA, began what would end up being a decade long persecution of Dr. Burzynski. There was no way an individual holding a private patent for certain medical devices or treatments, independent of the established order, was going to encroach on many decades of corporate medical monopoly.

    After wasting precious resources and taxpayer millions, trying to revoke Dr. Burzynski’s medical license, for well over a decade, the Board was completely unsuccessful at proving wrong-doing of any kind. Everything from launching extensive investigations to sending agents out-of-state to convince current and former patients to file unwarranted complaints was attempted. Amazingly, the powers that be, desperate and dedicated to maintaining control over how treatment is administered and keeping century-old chemical-based, assembly-line style medical practices in place, were unusually unable to find a way to silence the doctor.

    Despite all this, after years of failure and even after admitting “the efficacy of Antineoplastons as the treatment of human cancers is not of issue in these proceedings”, proving that it really isn’t about curing people of cancer, the board launched another investigation in 2008, again attempting to revoke Dr. Burzynski’s medical license. This time, however, their attempt was to put Dr. Burzynski on trial for giving terminal cancer patients personalized gene-targeted cancer therapy, tailored to the individual patient’s genetic markers and also more effective than the deadly, toxic and carcinogenic radiation or chemotherapy treatments forced on people. Ironically, this type of personalized gene-targeted therapy is considered, by many experts, as the future of modern medicine in cancer treatment. Just not with the help of Dr. Burzynski, if the medical establishment and its puppet FDA have anything to do with it, that is.

    Fortunately for the many patients who rely on this medical breakthrough for their very lives, including the general freedom that allows for the creative talents and individualism to flourish within the people, the Texas Medical Board’s most recent case against Dr. Burzynski was dismissed on November 19, 2012.

    But don’t think the official shenanigans end there. Dr. Burzynski has also endured persecution by the Federal Food and Drug Administration (FDA). This, in and of itself, has been a $60 million witch hunt, tax-payer funded of course, beginning in 1983 when the FDA took action to close Dr. Burzynski’s clinic. That same year, like all other times, a judge ruled Dr. Burzynski could continue treating patients in the state of Texas. But no matter how many times the public said no, however, the powers that be (the medical establishment, the corporations and those that own them… With almost total puppet media complicity) continue to fight for the end of any successful treatment for diseases, like cancer, so they can continue to control the flow of medicine and the money that follows.

    Relentlessly, the FDA, who had previously warned the judge that making such a ruling would push the government to pursue other remedies, such as seizure, condemnation of the drugs or criminal prosecution, convened grand juries to indict Burzynski in 1985, 1990, 1994, and yet again in 1995. Accepting the word “no” from the sovereign people is something they are simply untrained and unwilling to do. Staggeringly, even as all previous attempts at a grand jury investigation resulted in no indictments, the FDA still conducted another investigation between 1991 and 1993, but it is still unclear as to whether or not any grand juries were called to order in that particular instance.

    Sadly, Dr. Burzynski was eventually indicted in 1995 and charged with 75 counts of violating federal law and fraud – facing a maximum of 290 years in federal prison and $18.5 million in fines. But not unlike every other instance where those that control the government attempted to put a halt to anything resembling a change in direction from the billions of dollars raked in by the cancer industry every year, on March 4th, 1997 the judge declared a mistrial and ordered that Dr. Burzynski be acquitted of nearly half the charges. Once again, the government “had not presented sufficient evidence” against him. The FDA eventually dropped 40 of the remaining 41 charges and a second jury finally acquitted him of the final charge. Even the jurors from the first trial showed up to protest in support of Dr. Burzynski.

    If history is to repeat itself, as it almost always does, chances are slim this actually represents the end of the US government’s attempt at controlling every aspect of the cancer industry. Especially the parts that actually would have a positive effect on skyrocketing cancer rates and would likely be saving the lives of hundreds of thousands per year, in the United States and many other parts of the world, if left to do their magic. But not only has Dr. Burzynski likely not seen the end of ruthless “government” medical oppression, he is nowhere near the first or only case where creative and caring humanitarian doctors, physicians and researchers have been silenced and their remedies memory-holed in support of a society where diseases are to be the reality and a select few making all the money off of their “treatments” is the cure.

    Earlier in 2012, Dr. Antonella Carpenter, PhD, much like Dr. Burzynski, targeted for suppression for over a decade, was using a personally-patented, injectable, colored liquid technology to heat and destroy cancer cells, while leaving surrounding tissues almost entirely unharmed. The treatment, Light Induced Enhanced Selective Hyperthermia (LIESH), was using a laser-based technology Dr. Carpenter legally acquired while working for NASA during secret government projects. Almost identical to Dr. Burzynski’s story, however, very coordinated and sophisticated efforts were made by professional government trolls to seek out current and former patients that would be fooled into testifying against her after being talked into going back to deadly chemotherapy treatment with falsehoods and fear tactics.

    Also like Dr. Burzynski, her reputation was attacked, but her privately owned and patented technologies were silenced in her case, despite no evidence she had ever illegally practiced medicine or that her patients had been victimized in any way. Despite many successfully cured patients, including many that were willing to testify but were ironically never allowed, crooked prosecutors, judges and media in both Arkansas and Oklahoma were eventually successful at fraudulently forcing Dr. Carpenter to pay millions in fines and eventually had all of her equipment seized over the summer by a federal government that answers to the profit and eugenics-driven cancer industry and not to the people who deserve real cures that exist, like Dr. Carpenter’s and many others. Her case is currently headed toward the District Court of Appeals.

    Dr. Max Gerson, as one more of many examples, developed his world-famous dietary therapy, the “Gerson Diet,” which has proven to heal many illnesses, among them cancer on thousands of occasions. As a result of his proven success, a US Senate Committee moved to provide funding for research of nutritional cancer therapies. Once again, research was unable to go very far and Dr. Gerson struggled as a medical pioneer because he was persecuted by the medical establishment, due to the fact that his therapy went against conventional medicine and the wisdom passed down by those that wish to keep things going just the way they are. The American Medical Association even lobbied to defeat the passing of the funding measure that ended up being defeated by a mere four votes.

    In another instance, Royal Ray Rife and Gaston Naessens both invented powerful microscopes that enabled researchers to observe live cancer microbes… A feature modern microscopes still cannot do to this day. This allowed them to develop effective treatments for destroying cancer cells, but both were persecuted for their discoveries and accused of healing the sick without a license.

    It has also been known, since at least 1974, that many of the 60 or so cannabinoids that exist in THC, attained by smoking and orally ingesting marijuana, are proven on many occasions, both privately and through professional research, to both reduce the size of cancer tumors and kill most forms of cancer cells, almost every time it’s been tested. Yet, if you ask your local oncologist or look to your local or national news media, it’s as if no one in the government or the world of establishment-based cancer has ever heard of any of these treatments, situations or people, ironically and unfortunately enough.

    The bottom line is this; if it’s owned or patented by a private individual, or can’t be patented at all, and can be used to cure cancer especially, you are not going to be allowed to practice your craft or use the technique or substance as a treatment and especially call it a “cure,” as long as the medical establishment can help it, thus far at all costs. The unfortunate truth for the establishment is and always will be, there’s no money in the cure.

    More examples include, but nowhere near limited to:

    Psychiatrist Wilhem Reich, once regarded as the heir to Sigmund Freud’s seat, perished in jail after working with orgone energy to kill cancer cells. The FDA made sure his equipment, books and writings were all destroyed.

    Dr. Issels cured his patients of cancer using integrative immunotherapy and the same principals as the Gerson therapy. For it he received a suspended jail sentence and multiple attempts have been made to force the discontinuation of his work.

    Biochemist Lawrence Burton was persecuted and defamed for his work to improve immune system function in cancer patients and his discovery of a serum to shrink tumors.

    Dinshah Ghadiali was a pioneer in the field of color therapy and was sadly jailed and his equipment, books and writings were destroyed after he successfully treated cancer and other illnesses.

    Harry Hoxsey was persecuted and arrested for practicing medicine without a license after curing thousands of patients of cancer by using herbal remedies.

    Dr. Kristine Nolfi began helping her patients overcome cancer through nutrition, after curing her own cancer by consuming a vegetarian organic raw food diet. She was subsequently persecuted and stripped of her license.

    William F. Koch immigrated to Brazil as a result of the severe persecution he endured for his success curing patients with the use of his homeopathic oxidation catalyst.

    Researcher Dr. Johanna Budwig was prevented from publishing her discovery of fatty residues from margarine in soft tumors and also lost her job in the process.

    Help spread the word. There really are many different and alternative cures for almost every disease that exists. Start by liking and sharing this article everywhere humanly possible.

  107. #108 frozenwarning
    December 3, 2012

    @flip
    If I were a patient I’d have looked at the documents from the links that have been posted several times on the internet, in blogs, on Twitter and on here. I’m in the UK and had no idea how to access those files until I found those links. I suppose though that if you have a strong emotional attachment to Burzynski and his false hope you might not want to believe it.
    I’ve read the files, all of them, probably long before you did, and I still say the specific study consent form would not be included in a patient information pack like that. For a start, until Burzynski had seen the medical records and the patient, how would he know what trial the patient would potentially be entered into or whether they would be suitable? There’s also the issue of whether he would need ethical approval if he recruited patients directly in the UK, rather than them going to Texas. I believe he would, and he wouldn’t want that kind of scrutiny.
    The specifics of the study should be explained in person to the patient, and signed by both the patient and the study doctor. Certainly here in the UK sending a consent form to be signed without face to face consultation is not allowed.
    On the subject of placebos, these are rare in cancer trials. See here http://www.cancer.gov/ncicancerbulletin/050311/page7 and they are certainly not suitable for Burzynski ‘s godawful shambles he calls clinical trials.

  108. #109 herr doktor bimler
    December 3, 2012

    Is it much less disconcerting to find oneself liking the smell of one’s own boiling urine? – Asking for a friend.

    Well of course you have to boil it; if you don’t concentrate it down, you soon run out of mason jars and space in the basement.

  109. #110 flip
    December 3, 2012

    @Frozenwarning

    If I were a patient I’d have looked at the documents from the links that have been posted several times on the internet, in blogs, on Twitter and on here.

    Yes but that assumes that people go looking for this stuff. It also depends on where you’re looking. As an example, if you wanted info on Burzyinski, and saw the first page of google results points to a bunch of testimonial websites and/or favourable newspaper articles, will you bother with the second page of results that refer to lesser-known but more accurate websites? (Most people only view the first page of results, which is why google rank is so important)

    You’re also making the obvious point: which is that blogs, twitter and Google U are not peer-reviewed studies. I knew how to google stuff, but without reading say, medical blogs, I never knew about Pubmed. But you’ve got to actually look for the medical blogs *and* read them in order to find the link; if it happens to be mentioned in that particular post. In fact, to a lurker, Pubmed is often mentioned by commenters, but it’s hardly ever explained… at least a lot of the time.

    I don’t know how easily it is to find the FDA documents just from a google search for instance, and from what I saw, I think you need a login to view the files anyway. This means that most likely unless something is hosted elsewhere, it won’t be spidered and won’t appear in google.

    Where you look is just as important as how the info is presented.

    I’ve read the files, all of them, probably long before you did, and I still say the specific study consent form would not be included in a patient information pack like that.

    I’m not necessarily disagreeing with you. I simply find it odd that it is separate to the other info.

    For a start, until Burzynski had seen the medical records and the patient, how would he know what trial the patient would potentially be entered into or whether they would be suitable?

    Then why ask for credit card info, or for people to sign the other consent form which included stuff about insurance, etc?

    There’s also the issue of whether he would need ethical approval if he recruited patients directly in the UK, rather than them going to Texas. I believe he would, and he wouldn’t want that kind of scrutiny.

    Some of those files on JJ discussed obtaining permission from local health authorities for importation of meds, as well as getting a local doctor on board.

    The specifics of the study should be explained in person to the patient, and signed by both the patient and the study doctor.

    Again, I agree. Without having someone testify that’s being done (or signed forms), I have to rely on what else has been posted.

    On the subject of placebos, these are rare in cancer trials.

    I knew that would bite me in the a**. I should have been clearer before, I didn’t think there would be a placebo arm, but mentioned it anyway because I wasn’t sure.

  110. #111 Todd W.
    http://harpocratesspeaks.com
    December 3, 2012

    @flip

    One would think that if they include everything else, they’d also include a short consent form about the trial, receipt of placebos, risks and benefits, etc.

    Not really. The consent form to participate in a clinical trial would only be presented once a person has been screened and found to be a potential candidate for inclusion. A more complete screening would likely be conducted after consenting.

    As a bit of additional info regarding a proper consent form that I didn’t mention before, regarding how the study is conducted, as flip mentioned, it should include a description of the different arms and whether subjects will be randomized and/or blinded. In addition to a statement regarding possible benefits (to the subject or society), clear descriptions of the risks and their likelihoods should also be included.

    What I found interesting about that document flip linked to is that there is not a single mention of the treatment regimens being “investigational” or “experimental”. Further, antineoplastons are mentioned as a treatment for cancer, despite the fact that they are not approved to treat cancer. That packet is completely, IMO, a marketing piece, in violation of Federal regulations. But then again, IANAL.

  111. #112 flip
    December 3, 2012

    @Todd W

    That packet is completely, IMO, a marketing piece, in violation of Federal regulations. But then again, IANAL.

    And this is why I wondered about the consent form. Everything in their materials sounded more like marketing for an already-approved treatment. Whether consent is provided up front or not, their info is totally misleading.

    And yes, I get what you’re saying about the consent. I guess I just need to learn more about what’s standard and what’s not.

  112. #113 David N. Brown
    December 4, 2012

    @leah,
    Willhelm Reich is not a name that is going to get respectful attention. He was, by the kindest appraisals, a psychiatrist who was hopelessly over his head when he tried to go into the physical sciences. By the unkindest appraisals, he was a sexual deviant and not much of a psychiatrist either. That said, I would STILL take him over Burzynski.

    David N. Brown
    Mesa, Arizona

  113. #114 thenewme
    December 4, 2012

    @Leah,
    Are you the same Leah from the Entelev, Protocel, Cancell thread here a while back?

  114. #115 Lawrence
    December 4, 2012

    @Leah – so, if Dr. B is now “free” to continue treating people, why was his defense based on around the fact that he, personally, isn’t actually treating people anymore?

  115. #116 Mark McAndrew
    United Kingdom
    December 4, 2012

    It’s really very simple.

    Burz hides his results – and has done for 30+ years.
    Burz once claimed he could cure AIDS, as well as cancer.
    Burz claimed to invent a miracle toothpaste too.
    Burz doesn’t compensate people for being part of his clinical trials (as everyone else does), but actually charges them a fortune.
    Burz campaigners do not include any other doctors.
    Burz charges $500 to his PERSONAL account just to look at a prospective patient’s case history. Just to look!
    Burz openly uses, and sells, conventional chemo for 20x the normal price – yet followers claim he only uses ‘non-toxic alternatives’. (Anyone saved has been on chemo.)
    Burz ‘the poor persecuted little guy fighting Big Pharma’ lives in a $6m, 15-bedroom mansion with golden ironwork gates featuring the decals ‘SB’.
    Burz has never treated a patient for free. He can’t afford to.

    Burz is pure narcissistic evil, surrounded by a bunch of well-meaning but terribly misled followers* who believe his outrageous snake-oil lies. There’s a very good reason he moved to Texas – anywhere else and he’d be in jail by now.

    *And a few outright scumbags like Marc ‘we know where you live’ Stephens.

  116. #117 Beamup
    December 4, 2012

    What I found interesting about that document flip linked to is that there is not a single mention of the treatment regimens being “investigational” or “experimental”. Further, antineoplastons are mentioned as a treatment for cancer, despite the fact that they are not approved to treat cancer. That packet is completely, IMO, a marketing piece, in violation of Federal regulations. But then again, IANAL.

    The perspective of Mr. Saunders also points in the same direction. He clearly views this as “Amelia is being treated with antineoplastons” not “Amelia is in a clinical trial investigating antineoplastons.”

    At an absolute minimum Burzynski isn’t making it adequately clear to the subjects that this is a clinical trial of an as yet unproven new drug. IMO the evidence is far more consistent with him deliberately and knowingly presenting it as a well-proven treatment plan, and using the supposed “clinical trials” as a fig leaf to try and evade the FDA.

    If only the FDA had the resources to realize they’re being conned and shut him down accordingly.

  117. #118 Krebiozen
    December 4, 2012

    HDB,

    Well of course you have to boil it; if you don’t concentrate it down, you soon run out of mason jars and space in the basement.

    At least someone understands the problems I have to deal with. Those fox cadavers take up more space than you would think…

  118. #119 Denice Walter
    December 4, 2012

    @ Krebioze:

    Don’t you AT LEAST use the tails for something? A few** sewn together might make an attractive scarf?

    ** I’m joking. I do not advocate the usage of fox fur for personal adornment- silk and cashmere are better anyway.
    I DO love the little critters.

  119. #120 Lawrence
    December 4, 2012

    I wonder if the FTC could get involved under “truth in advertising,” since Dr. B is obviously advertising under false pretenses?

  120. #121 Marc Stephens Is Insane
    December 4, 2012

    Lawrence,

    That’s a good point. As far as I know Burzynski’s marketing is restricted to online. Has anyone ever seen a newspaper ad, a TV ad or a radio commercial for the clinic? I am thinking specifically of the myriad Cancer Centers of America commercials I see constantly late at night. I am sure every word of those commercials is vetted by the broadcasters and the advertiser’s legal team to make sure the content is compliant with advertising codes. But as far as I know the online world is still the wild west when it comes to enforcing trade regulations.

    At least that’s the way it is here in Canada. The CRTC (the broadcast regulators similar to the FCC in the US) has no power at all when it comes to regulating online content.

    When I worked in terrestrial radio a local ice cream shop wanted to advertise their product as “all-natural”. Before we could allow the commercial to air, we had to submit an actual list of ingredients from the dairy to the government regulators so the claim could be substantiated.

    That kind of consumer protection is lacking in the online world and that’s why the quacks congregate there.

    My point is that type of regulation doesn’t seem to exist online. Anyone can say anything, it seems, with or without a quack miranda warning.

  121. #122 Judith
    December 4, 2012

    @JGC

    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?

    I am trying to understand your position, @JGC. Are you saying that it’s not okay for Burzynsky to charge for treatments that show anecdotal evidence of efficacy while it’s okay for the medical establishment & the pharmaceutical industry to charge hundreds of thousands for treatments that maybe prolong life for a few months?

  122. #123 Narad
    December 4, 2012

    Are you saying that it’s not okay for Burzynsky to charge for treatments that show anecdotal evidence of efficacy while it’s okay for the medical establishment & the pharmaceutical industry to charge hundreds of thousands for treatments that maybe prolong life for a few months?

    Did you miss the part where this is done under the guise of clinical trials, Judith?

  123. #124 AdamG
    December 4, 2012

    Oh Judith, you’re adorable. You can’t even see the difference between “anecdotal evidence for efficacy” and “treatments that maybe prolong life for a few months.”

  124. #125 Narad
    December 4, 2012

    Oh Judith, you’re adorable. You can’t even see the difference between “anecdotal evidence for efficacy” and “treatments that maybe prolong life for a few months.”

    Or even what “efficacy” means in the first place, given that prepending “anecdotal evidence for” is oxymoronic.

  125. #126 herr doktor bimler
    December 4, 2012

    Don’t you AT LEAST use the tails for something?

    Ahem. Foxes do not have “tails”. They have “brushes”.

  126. #127 herr doktor bimler
    December 4, 2012

    As far as I know Burzynski’s marketing is restricted to online.

    Like everything else, he likes to outsource the advertising and keep his own hands clean. Hence the “patients-for-Burzynski” websites set up for plausible deniability.

  127. #128 Krebiozen
    December 4, 2012

    Denice and HDB,

    Don’t you AT LEAST use the tails for something?

    Ahem. Foxes do not have “tails”. They have “brushes”.

    You’ll have to wait until I perfect the extraction of the anti-rejection drug from the boiled urine, and the xenotransplanation surgery (tricky using a mirror), to see what I plan to use the brushes for.

  128. #129 Krebiozen
    December 4, 2012

    Judith,

    Are you saying that it’s not okay for Burzynsky to charge for treatments that show anecdotal evidence of efficacy while it’s okay for the medical establishment & the pharmaceutical industry to charge hundreds of thousands for treatments that maybe prolong life for a few months?

    I think they are both wrong, but then I live in a country that doesn’t make people pay for treatment like this; so do you, don’t you? Anyway, this is not the choice that this patient’s parents face since she is from the UK and could get excellent medical care, including all medications, completely free.

  129. #130 S
    December 4, 2012

    Am I correct in thinking that it would be even more unethical for a physician to treat a paying patient with experimental protocols without telling the patients they were part of a ‘trial’ or medical study? Especially if later the physician then advertises and publishes the results of such treatments as if they had done as proper clinical studies and/or ‘trials’, given the patients never consented to being a part of a study or trial in the first place?

  130. #131 Denice Walter
    December 4, 2012

    @ Kreb:

    Hmmm.. I don’t know. The red doesn’t quite go with his dark hair. Perhaps he should have tried a grey fox. You know, the carpet should match the drapes.

  131. #132 flip
    December 5, 2012

    @Beamup

    IMO the evidence is far more consistent with him deliberately and knowingly presenting it as a well-proven treatment plan, and using the supposed “clinical trials” as a fig leaf to try and evade the FDA.

    This makes it even more obvious that the FDA are toothless: they’ve sent him letter after letter about not misreprenting the antineoplastons, but he continues to do so. And yet he’s clearly being fraudulent and knowingly so.

    He must have a lot of protection worked into his ‘business’.

    @Lawrence

    I wonder if the FTC could get involved under “truth in advertising,” since Dr. B is obviously advertising under false pretenses?

    I was wondering this myself.

    @MSII

    My point is that type of regulation doesn’t seem to exist online. Anyone can say anything, it seems, with or without a quack miranda warning.

    Consider the case of Meryl Dorey, she actually was shut down (for a while anyway) and had to provide a quack miranda because of what she posted on her site. I know it’s probably not the same in the US, but one would think you could sue/regulate according to what an organisation publishes, no matter what medium the publication uses.

    @HDB

    Like everything else, he likes to outsource the advertising and keep his own hands clean. Hence the “patients-for-Burzynski” websites set up for plausible deniability.

    This is what I mean about building in protection, and layers, like a mob boss. They get their own patients to do the marketing for them, creating a low-cost scheme and at the same time, boosting anecdotal ‘evidence’ and believability. This guy is very slick.

    @Judith

    Are you saying that it’s not okay for Burzynsky to charge for treatments that show anecdotal evidence of efficacy while it’s okay for the medical establishment & the pharmaceutical industry to charge hundreds of thousands for treatments that maybe prolong life for a few months?

    Er, what the? Since when do science experiments include anecdotal evidence? Sheesh, you still haven’t got it have you?

  132. #133 Krebiozen
    December 5, 2012

    Denice,

    Perhaps he should have tried a grey fox. You know, the carpet should match the drapes.

    We have red foxes only on my part of the planet, sadly. Anyway, I’m pushing back the frontiers of xenotransplantation here, and you complain about the color scheme? Sheesh. Now I know how Burzynski feels – never mind the results, look at the concept!

  133. #134 Denice Walter
    December 5, 2012

    @ Krebiozen:

    But that’s what I’m here for!
    Unfortunately we only have red ones too. You might need to send out to Russia.
    -btw- your work in xenotransplantation is truly spectacular but SERIOUSLY NOT matching makes it SO obvious that you’ve ‘had work done’!

  134. #135 kidsnurse
    December 10, 2012

    Well it seems from reading the family FB page that the neoplasm treatment is being stopped for “a few days” and that the parents are admitting that Amelia is getting worse from a neuro standpoint and that they family will be meeting with the pediatric teams at Great Ormond Street soon to decide on possible tradition treatment. Very sad.

  135. #136 Marc Stephens Is Insane
    December 11, 2012

    kidsnurse,

    Thanks for the update. Those poor doctors at GOS have to deal with the aftermath of Burzynski’s patients and they do it with the grace of superhumans. Did you see the GOS episode on BBC that covered Luna Petagine’s story? A little four-year old who was being treated at GO, seemingly successfully, but the mother didn’t like the odds they were given. She did her laptop “research” and chose Burzynski, even though her doctor begged her not to. They went off to Texas, and the little girl was in absolute hell from the sodium levels. She suffered almost fatal side effects to Stan’s stuff so they eventually stopped the “treatments”. The GOS doctors had to clean up Stan’s mess.

    Luna died this summer.

  136. #137 Marc Stephens Is Insane
    December 11, 2012

    Another update on Amelia today after meeting with Great Ormond doctors.

    I take no pleasure in stating it looks like Orac was correct about the cysts.

    Poor little kid. Poor family.

    https://www.facebook.com/ameliasmiracle

  137. #138 Lawrence
    December 11, 2012

    @Marc – that’s extremely sad….too bad the family wasted so much money on Dr. B & time they could have spent with their daughter.

  138. #139 Marc Stephens Is Insane
    December 11, 2012

    Lawrence,

    I know I keep harping on it but did you see the Toronto Star series on the three-year girl who just died of a brain tumour, and what how her parents spent their last few months together?

    They got it right.

  139. #140 Narad
    December 11, 2012

    Am I correct in my understanding that the “cyst” assertion came from a Burzynski et al. MRI review in the first place?

  140. #141 Marc Stephens Is Insane
    December 11, 2012

    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…

    The words “we have been shown” implies it was Burzynski. Their local oncologist hadn’t even been sent the scan when this was written. So who else would have shown it to them?

  141. #142 Narad
    December 11, 2012

    Yah, this “cystic formation” story doesn’t appear to be new and is reinforced despite radiological assessments.

  142. #143 Marc Stephens Is Insane
    December 11, 2012

    From their Facebook entry, Nov. 17. The good thing to which he refers is the cyst theory, which he confirms in a follow up post on Nov. 20.

    It sounds like the MRIs are being done in England then sent to Texas for phone consultations.

    After the last scan, there appeared to be some changes within the tumour itself. I’m not going to elaborate, but it could be a good thing and it could be a bad thing. To back this up, we went and had yet another MRI scan yesterday. The scan went well, we were home in the afternoon and Amelia was fine. We are going to have a call on Monday with the Burzynski clinic to get their view, but clearly Amelia’s deterioration of her right hand side means something has happened inside the tumour. Chantal and I have spent some of today talking about it, and we’ll just have to wait until Monday to see what to do next.

  143. #144 Narad
    December 11, 2012

    That latter link should actually have been two. This is the second.

  144. #145 Marc Stephens Is Insane
    December 11, 2012

    Yup, it’s Burzynski’s people reading the MRI.

    From Nov.19:

    I realise a lot of people are waiting for news on Amelia’s MRI from Friday. I’ve just finished a call with the Burzynski clinic, and we unfortunately have a few IT glitches that have prevented them from having all the scans visible to them across the whole year.

    What I don’t want to do is get ours, and everybody else’s hopes up about things. I could not b
    ear thinking that this is working and then to be told it isn’t.

    What I will elude to is that the Burzynski clinic feel that there is a cyst forming inside Amelia’s tumour, very slowly. This does seem apparent on the scan images but we want to make sure this has grown over the longer timeframe. A cyst will form where there is cell breakdown, so clearly is a good thing from a ‘killing the tumour’ viewpoint, but possibly bad in that you then have fluid in a very difficult place to get to. We’ll address that little hurdle if we get to it being a problem in the first place.

    This sounds exciting (it is), but we are really trying to be careful about getting too much so. Amelia has got worse, although she has had some improvement over the weeks before her MRI. This could be due to a number of factors and we know the tumour has not grown.

    Another point with this is that the tumour isn’t shrinking, but if a cyst is forming then it might be some time before the tumour does shrink. We’ve always said that due to Amelia’s tumour being very slow growing, we have more time on our hands more than most kids who get this.

    The next steps will likely be to adjust the treatment slightly so that we can reduce Amelia’s symptoms a little. If we are going to be doing this treatment for a long time period then it is important to balance her quality of life with the treatment itself.

  145. #146 Marc Stephens Is Insane
    December 11, 2012

    So he tells patients that even though they’re getting sicker and the tumour is getting bigger, it’s only growing because it’s turning into a cyst and getting sicker is a sign it’s working.

    Did I get that right?

  146. #147 Lawrence
    December 11, 2012

    @Marc – it is a shame that Dr. B’s people led the parents down the “primrose path” instead of giving them what any decent oncologist would have told them – that this wasn’t a “good” sign and was part of the natural progression of the Cancer towards a more terminal stage.

    Instead, they were given false hope & had to get the real information from real oncologists after the fact…..

  147. #148 Marc Stephens Is Insane
    December 11, 2012

    Isn’t it malpractice to read an MRI and either not see what is really happening or lie to the patient?

    It seems we’ve heard about Burzynski misreading MRIs a few times already.

  148. #149 Lawrence
    December 11, 2012

    @Marc – yes, that’s exactly what they seem to have said. Unfortunately, Orac’s prediction came true – which absolutely sucks for the child & parent….but it was what could be expected, if the Cancer was allowed to progress along its natural course – which again shows Dr. B’s treatment to be no better than letting the Cancer go on its own.

    This man is a monster.

  149. #150 Lawrence
    December 11, 2012

    @Marc – Dr. B can always claim the treatment is “experimental” which, actually, it is – which limits liability (I believe).

  150. #151 kidsnurse
    December 11, 2012

    Sorry guys this is a busy week and I just got back. Read the update from the Father and it is clear that she is not acutely in the final stages of this terrible disease which is about the time frame given by the original team. Sadly in the Pediatric world we have to deal with the “aftermath” of quacks and alternative therapy to much and the kids suffer. How much did this constant infusion of the “Dr. B treatment” limit this child’s last days!!!! Wonder if they are stopping treatment because they “see the light” or the wonderful miracle worker in Texas said “no more” treatment. I am glad that at this these parents are not forcing any more useless treatment on this child. Also the group at Great Ormond are wonderful.

  151. #152 flip
    December 12, 2012

    Just getting a cookie from the cookie jar…

  152. #153 trina
    December 27, 2012

    I’m confused about your concerns about the cost of Burzynski’s treatment and your complaints that it isn’t efficacious. On cost, it seems that for the conventional standard of surgery, chemotherapy and radiation cost is estimated by the Brain Tumor Foundation for treating a glioblastoma at more than $450,000 and says costs of treating a brain tumor can reach $700,000 in a lifetime. (http://health.costhelper.com/brain-tumor.html) and crosschecked on Livestrong, http://www.livestrong.com/article/153376-the-average-cost-for-cancer-chemotherapy-treatment/ which puts just chemo alone, in the $30k range. From Cancer.org on cost of Burzynski’s antineoplastons: a year of treatment can cost from $30,000 to $60,000, depending on the type of treatment, number of consultations, and the need for surgery to implant a catheter for drug delivery. Seems like a bargain. On efficacy, one of the reasons the Texas Medical Board failed to shut down Burzynski’s practice is because the Founder of the Neuroradiology (brain tumor) Section of the National Cancer Institute, who is a board-certified radiologist, and professor of radiology at Georgetown University—Dr. Nicholas Patronas [source NCI]—testified as a brain cancer expert from our own National Cancer Institute in a Texas court in Burzynski’s defense—stating “… it’s amazing, the fact that they [Burzynski's brain tumor patients], the fact that they are living …. and they are not handicapped from the side effects of any treatment, and the side effects of the most aggressive previous treatment are worse than the tumor itself. So these particular individuals not only survived, but they didn’t have major side effects. So I think it [Antineopalstons] is impressive and unbelievable.” I’m researching for the most effective brain cancer treatments (my definition is length and quality of life focused). The science explained in the Burzynski movie and on Cancer.org about his treatments made sense to me and didn’t report life threatening side effects as is the case with conventional chemo and radiation. I may have missed it in an earlier blog of yours, so could you please share with me scientifically why you are so passionately against his treatments? Gotta say right now his treatment option for brain cancer seems cheaper (really not an issue for me when it comes to being alive to be honest : ) and more effective and the one I’d start with. If you had glioblastoma, what would you choose to do? Welcome evidence to the contrary for standard treatments especially for brain cancer.

  153. #154 LW
    December 27, 2012

    @trina: Dr. Nicholas Patronas testified in 1993 — almost twenty years ago — about a group of just seven patients (two of whom had died despite Burzynski’s treatments), handpicked by Burzynski as the *best* results from, at that time, his sixteen years of treating patients.  His testimony is not persuasive as to the thousands of patients who *weren’t* his best results.  

    The science as described may make sense to you. It might make sense to me too.  But we are not oncologists, physicians, or even biologists. We don’t know enough about the human body in general or cancer in particular to be able to judge whether the science is good or bad.

    Orac *is* a physician and a cancer researcher. A lot of people who comment on this site (not me though) are physicians or otherwise involved in medicine. They are *not* convinced by Burzynski, and they have no financial interest in convincing you.

    You will not go to Orac for treatment just because he persuades you that Burzynski is wrong.  He has no financial interest in persuading you, only a humanitarian interest. But you might go to Burzynski if he persuades you that he is right. He *does* have a financial interest. Think on that when you evaluate their respective arguments. 

    Orac has commented on Bursynski many times. Just enter Bursynski in the search box and start with the earliest posts.

  154. #155 Lawrence
    December 27, 2012

    @trina – you might want to read a few of these stories first, before you jump on the Dr. B bandwagon:

    http://theotherburzynskipatientgroup.wordpress.com/

  155. #156 LW
    December 27, 2012

    @trina, before you make any decision about going to Burzynski, you should go to this site:

    http://theotherburzynskipatientgroup.wordpress.com/

    These are real stories of real patients of Burzynski. Former patients, I should say.

    I entirely agree that price is no object when it comes to survival, but on the other hand, by going to the Burzynski Clinic you lose time and comfort as well as money. Those things count a lot.

    Also, the numbers you are quoting for treatment at the Burzynski Clinic are much lower than actual patients and their families reported in their blogs. Perhaps cancer.org is not including the inflated cost of chemotherapy drugs purchased from Burzynski.

  156. #157 Krebiozen
    December 27, 2012

    trina,

    If you had glioblastoma, what would you choose to do? Welcome evidence to the contrary for standard treatments especially for brain cancer.

    I would find the best surgeon I could and get as much of the tumor rmeoved as possible. I would then see if I was eligible for and could get onto one of the many clinical trials of treatments for glioblastoma that are currently recruiting patients. I think a combination of Temozolomide and accelerated hypofractionated external beam radiotherapy is looking interesting, and there are some clinical trials recruiting at present.

    I certainly wouldn’t go anywhere near Burzynski.

  157. #158 flip
    December 27, 2012

    @Trina

    If you have the time, I recommend reading every blog post and every comment on those blog posts, about Burzyinski. You will find an enormous wealth of information about Burzyinski and what he actually does, rather than what he says he does. Well worth putting aside several hours to read through.

  158. #159 Narad
    December 27, 2012

    From Cancer.org on cost of Burzynski’s antineoplastons: a year of treatment can cost from $30,000 to $60,000, depending on the type of treatment, number of consultations, and the need for surgery to implant a catheter for drug delivery. Seems like a bargain.

    Thirty grand is rather closer to just the down payment, cash on the barrelhead. Placing a portacath is an outpatient procedure.

  159. #160 trina
    December 29, 2012

    Thank you so much for your responses : ) I fear I have not made my request clear. I am looking for SCIENTIFIC sources to help me figure out why if I had cancer statistically, biologically and physiologically (let’s keep money out if it – it all seems very pricey) I would be best served by choosing surgery, radiation and chemo at all vs. Burzynski or naturopathic cures that I have been able to find numerous books, films etc. Right now I have read over 12 books on naturopathic cancer treatments (Secret History of the War on Cancer, Killing Cancer not People, National Cancer Institute and American Cancer Society, etc), but only one of those covered conventional cancer treatment (Emperor of All Maladies) and was not written by an anti-conventional medicine author. I need to even out my knowledge base with conventional cancer treatment books without having to go to allopathic medical school ; ) Cheers!

  160. #161 Narad
    December 29, 2012

    I am looking for SCIENTIFIC sources to help me figure out why if I had cancer statistically, biologically and physiologically (let’s keep money out if it – it all seems very pricey) I would be best served by choosing surgery, radiation and chemo at all vs. Burzynski or naturopathic cures that I have been able to find numerous books, films etc.

    The wholesale lack of positive evidence from the quarters that you seem to wish to be argued away from might be a start.

  161. #162 Chris
    Neither here nor there...
    December 29, 2012

    trina, no, you did not make your request clear. And your clarification is even less clear. I can suggest that you read The Emperor of All Maladies. That should help you understand how complicated all the forms of cancer are, plus get a feel of how real cancer research works.

  162. #163 Chris
    Neither here nor there...
    December 29, 2012

    Ooops, I see you mentioned the book. But it does not seem like you understood it.

  163. #164 MI Dawn
    December 29, 2012

    @Trina: a few things you have apparently missed: Burzynski uses chemotherapy. He uses a LOT of chemotherapy, along with his antineoplastin treatment, all of which he requires you purchase, at great mark up, at his pharmacy.

    Other places have performed clinical trials with antineoplastins. They found them to be MORE toxic than chemotherapy at clinical doses. They are not “natural” or “non-toxic” or anything else Burzynski claims.

    “Cancer” is not one disease. It has many variants, and what works for one type of cancer (i.e. a solid brain tumor) often does not work for another (i.e. a blood cancer like leukemia). Since it’s often due to rapidly growing and mutating cells, it’s hard to treat.

    There are no real “naturopathic” treatments to cancer. People have been trying to cure it for thousands of years without much success. And the items they found to be successful have become part of the conventional chemotheraputic treatments (think tamoxifen). They took a natural item that appeared to have an effect, isolated the part that had any effect, established a consistent dosage to make it effective and prevent either under- or over-dosing and a convenient way to dispense it. Same thing pharmaceutical companies have done for generations, all the way back to willow bark tea becoming Ba*yer’s As*pirin and foxglove tea becoming digitalis.

    There is no such thing as “alternative” medicine. There is medicine that is shown to work, and quackery. Burzynski uses medicines shown to work, mixed with stuff not found to be safe or effective, charges outrageous amounts, and lies to his patients. If that’s not quackery, I don’t know what is.

  164. #165 Krebiozen
    December 30, 2012

    MI Dawn,
    A minor niggle – I suspect you mean ‘Taxol’, not ‘Tamoxifen’.

  165. #166 Krebiozen
    December 30, 2012

    trina,

    I am looking for SCIENTIFIC sources to help me figure out why if I had cancer statistically, biologically and physiologically (let’s keep money out if it – it all seems very pricey) I would be best served by choosing surgery, radiation and chemo at all vs. Burzynski or naturopathic cures that I have been able to find numerous books, films etc.

    You will find a lot of outrageous claims about alternative cancer treatments, but if you look at them closely you will find that these claims are not scientifically supported. They are often based on testimonials that do not bear close scrutiny – either the patient did not have cancer in the first place, or they had successful conventional treatment but the alternative treatment is given the credit, or they still have cancer and in some cases have died, but their testimonials are still being used.

    Here’s a discussion of some of these treatments and how the scientific evidence shows that they do not work. For example, the trial of Burzynski’s antineoplastons mentioned was halted because they only found nine patients who were eligible and all nine died before the trial ended. It’s not conclusive, but it’s certainly not encouraging either.

    You might also find this website interesting. It is run by Dr. Moran, a retired doctor who has looked closely at the claims of alternative practitioners and their results. None of them live up to their claims. The whole site is well worth a browse.

    If you use the search box on this page and search for “Gonzalez” you will find a lot of information on a clinical trial of an alternative treatment for pancreatic cancer. The treatment is based on supplements, juices and coffee enemas and is similar to some naturopathic treatments such as Gerson’s which I’m sure you have read about. The clinical trial compared Gonzalez’s treatment to the best conventional treatment. The result was that the conventionally treated patients lived on average 3 times longer than those given Gonzalez’s treatment, and they also reported a better quality of life.

    It has been an interest of mine for decades, but I have been unable to find any reliable scientific evidence to support the claims of alternative treatments for cancer. Many of these treatments have been in use for a very long time, so there has been plenty of opportunity for practitioners to carry out clinical trials, or at least keep careful records that would demonstrate whether their treatment is effective. In the few cases where this has been done, the results are not at all impressive. It is quite certain that none of these treatments are miracle cures, and very probable that they do nothing at all. I have seen complaints from cancer surgeons that they are seeing more and more cases of untreated cancer that they had previously only seen described in old text books, because more and more people are falling for these outrageous claims and refusing conventional treatment.

    Conventional treatment for cancer is by no means perfect, but it is the best we have at present.

  166. #167 Krebiozen
    December 30, 2012

    trina,
    For information on specific conventional cancer treatments I suggest PubMed, which you are probably already aware of. Learning to use the advanced search and filtering options is well worth the time it takes to improve your searches, but do be aware that not all the information you will find is reliable. I also recommend The Cochrane Collaboration, for systematic reviews of all the available evidence. Cochrane has been criticized by some for being too tolerant of alternative medicine – it was notorious for always calling for further clinical trials of treatments that clearly (to most of us) don’t work, though it has improved in that regard recently. Despite that it is an excellent resource for finding all the available research on specific conditions or on specific treatments.

  167. #168 Krebiozen
    December 30, 2012

    Sorry about fumbled link closure – rushing on way out of door.

  168. #169 Scottynuke
    December 30, 2012

    Trina’s got my lurker’s “spidey sense” tingling:

    “without having to go to allopathic medical school”

    Methinks she’s looking to confirm her biases, not “even out” her “knowledge base.”

  169. #170 Lawrence
    December 30, 2012

    I would think a review of the cases listed on the “Other Dr. B Patient Group” would be enough to send someone screaming in the other direction – the amazing similarity between the progression of the diseases to the end, without a single change in Dr. B’s treatment regimen…..very scary stuff, and he’s still a monster.

  170. #171 MI Dawn
    December 30, 2012

    @Krebiozen: you’re right. Darn autocorrect on the iPad…

  171. #172 Narad
    December 30, 2012

    They took a natural item that appeared to have an effect, isolated the part that had any effect, established a consistent dosage to make it effective and prevent either under- or over-dosing and a convenient way to dispense it.

    Taxol isn’t really a comparable to aspirin or digitalis, as there was no existing folk use. It was more of a lucky find in a broad survey of plant-derived compounds.

  172. #173 herr doktor bimler
    December 30, 2012

    vs. Burzynski or naturopathic cures that I have been able to find numerous books, films etc.

    If your criterion for “what works” is “who performs the most advertising and sets up the greatest number of promotional websites”, then you might as well spend your money on an expensive car and a diet of Mac burgers.

  173. #174 thenewme
    December 30, 2012

    I’m with Scottynuke. My spidey sense is tingling too.

    @Trina – You said, ” I need to even out my knowledge base with conventional cancer treatment books without having to go to allopathic medical school.”

    What, specifically, are you asking? What exactly do you want to know about “allopathic” cancer treatment? I suspect you may have some agenda other than improving your “scientific” knowledge base about cancer treatment, but I’d be really glad to be wrong about that!

  174. #175 Marc Stephens Is Insane
    December 30, 2012

    What exactly makes Burzynski NOT allopathic?

  175. #176 Militant Agnostic
    Where it is always better with cows around
    December 31, 2012

    @Narad

    you might as well spend your money on an expensive car and a diet of Mac burgers.

    Well, the diet of Mac burgers worked for blues pianist Pine Top Perkins (the oldest person to win a Grammy) – he had a Big Mac every day and lived to be 97. This is better evidence than Burzynski has.

    @MSII

    What exactly makes Burzynski NOT allopathic?

    His total lack of ethics and his lack of evidence?

  176. #177 Militant Agnostic
    Where it is always better with cows around
    December 31, 2012

    @Narad should have been the highly esteemed Herr dDoktor Bimler

  177. #178 MarkL
    London
    January 6, 2013

    Bad news.

    Little Amelia Saunders lost her battle against her tumor today.

    My thoughts are with her family and friends at this difficult time.

  178. #179 Lawrence
    January 6, 2013

    @Mark – damn, that really stinks.

    My condolences to her family and friends.

  179. #180 lilady
    January 6, 2013

    So sad. My condolences to her parents and to all her family and friends.

  180. #181 Antaeus Feldspar
    January 6, 2013

    Poor Amelia. I pray that her family can find comfort in this terrible time.

    One thing that I always think on these occasions is just HOW BADLY those who castigate us for being science-based misunderstand us. They suggest that we are so afraid of being wrong about SBM being the best option that we won’t consider the possibility that some CAM approach might be a miracle waiting to happen.

    If they only knew how much we WISH we were wrong. If I thought it would save even one innocent child like Amelia, I’d strip down to my skivvies, paint myself with glitter and parade myself through the metropolis on a float that blared through loudspeakers “I was wrong! I was wrong!” I never thought my dignity was worth terribly much as an end in itself; give me the chance to trade it for something truly precious, the saving of a life, and I’d jump at the chance.

    But you can answer ten thousand times the question “what would you do with a million dollars?” and at the end it won’t put a million dollars in your pocket. As much as we WISH the answer was as simple as “Throw away science and trust in the guru!” … it just isn’t.

    At a time like this, it isn’t about us. It just isn’t. Which is why I don’t usually say anything like this. I just wish that they knew that our grief and our sympathy for them is real. If there is an afterlife, may Amelia be there, knowing how much her family loved her and how very many people wanted so much to keep her here on Earth with us.

  181. #182 Marc Stephens Is Insane
    January 6, 2013

    Very sad news.

    Somewhat on topic since I saw this earlier today: there’s a fundraising campaign underway for a donation to St. Jude’s in “honour” of Burzynski’s upcoming 70th birthday.

    http://thehoustoncancerquack.com/

  182. #183 nickyh
    January 6, 2013

    @Antaeus Feldspar I’m sure her family, are very grateful and appreciate what was said. I myself work within the NHS and agree entirely on what you are all saying, however if it was myself in that position, I too would do the same, its just that whole glimmer of hope. I can’t lie, I know I may as well do the rain dance naked, but if someone told me even that would work and there was a chance to save my daughter, I’d do it, including the dancing in the rain naked. It’s called being a parent. God Bless little Amelia

  183. [...] father commenting on my blog, a comment that I couldn’t ignore and had to respond to. So I did. Unfortunately, Amelia was clearly getting worse, and I feared that the end was near. Knowing what [...]

  184. [...] Amelia’s father, as much as he wanted to believe in Burzynski, was an intelligent man. He took the MRI to a real neuroradiologist at Great Ormond Street Hospital who told him the truth: Amelia’s tumor was progressing. [...]