Respectful Insolence

I’ve made no secret of my opinion of a certain “alternative” cancer doctor named Stanislaw Burzynski, MD, PhD, of the infamous Burzynski Clinic. When last we left Burzynski, his propagandist lapdog bootlicker documentary film maker Eric Merola was most unhappy with bloggers like me for having the temerity to tell it like it is when it comes to his film subject’s activities. Merola, you might recall, was responsible for Burzynski the Movie – Cancer Is a Serious Business, which I characterized as pure propaganda so incompetently made that it would make Leni Riefenstahl blush. After a couple of weeks, I change my characterization to say that it would have made Riefenstahl vomit in revulsion at its sheer incompetence. Be that as it may, I view Burzynski as highly unethical and pseudoscientific, an incompetent purveyor of “personalized medicine for dummies,” and someone who might at one time have been on to something but, like all cranks, just couldn’t let go when it became clear that his antineoplaston therapy was far more toxic than advertised and way less efficacious, if it’s even efficacious at all, which is highly doubtful.

One of the things that most disturbs me about Burzynski is how he takes advantage of patients who are at their most vulnerable and desperate. They are, after all, dying of cancer, usually cancer of the most horrible kinds: Brain tumors, pancreatic cancer, and the like. Over the last year or so, I’ve gone through multiple stories of patients who trusted Burzynski and ended up dying. In fairness, these patients would have died anyway. However, when they go to Burzynski they end up being charged tens or hundreds of thousands of dollars for his antineoplaston therapy, which can’t help them. Many of the families of these patients hold fundraisers and try to generate publicity, the better to attract donors to give them the money that they have been led to believe is the only hope their loved ones have to survive. These patients uniformly all die, as is unfortunately expected given the nature of their disease, but there’s no evidence that Burzynski prolongs their lives or contributes to their quality. Worse, Burzynski extracts huge sums of money from their families for the “privilege” of being on one of his many dubious phase II clinical trials. He also has a phase III trial that the FDA foolishly approved two years ago, but hasn’t even opened to accrue a single patient.

Since last I wrote about Burzynski, I’ve become aware of yet another such patient, and it’s a truly sad tale. Meet Amelia Saunders, who was diagnosed with a brain tumor earlier this year:

…she was then operated on, on Monday 6th February by Mr Peter Richards of the John Radcliffe Hospital, who has been a neurosurgeon for some 30 years – working on children for 16 of those years. He sees around 5 cases a year of this type and we understand around 40 kids a year in the UK are diagnosed. The operation had two goals – one was to biopsy the tumour, which produced 4 tissue samples during the operation. The second was to try and remove any tumour other than the samples – which they were unable to do.

After several days we were told that the samples showed a grade 2 diffuse astrocytoma, indicating that the core of the tumour was likely grade 3 or 4. We were then told that there was no chance of survival of a tumour of this type.

Chemotherapy and radiotherapy were offered, however we were told that a median increased survival of some 4 weeks was achieved after this treatment. We declined with the reason that we would rather spend quality time with our daughter than spend more weeks in hospital for such a dismal outcome. Amelia came home on Friday 10th February. Amelia returned home unable to walk, she had speech problems, she was half paralysed and generally in a very bad state.

You know what’s coming next. In their desperation, Amelia’s parents heard about Stanislaw Burzynski, and, because they loved their daughter and were desperate to see her live, they were susceptible to his blandishments, particularly since their daughter had gotten somewhat better after her surgery. They somehow raised over £200,000 in 12 weeks in order to pay for Burzynski’s treatments (as of October 4, they reportedly have raised £249,776), as related in the blog and in this video:

What brought Amelia to my attention was actually one of you sending me a link to her Facebook page, where it was recently reported:

Tonight is the update we’d always hoped we’d be able to write, but it has taken an enormous amount of faith and hard work to get this far – and there were many times we didn’t think this would happen.

Amelia’s tumour is dying, from the inside. We’ll be getting another opinion from here on this, but the scans do back this up. There are cysts forming inside the tumour where cancer cells would have been before.

For the moment, we seem to be winning our little battle.

We are trying our hardest not to get too excited yet. These cysts are forming inside the tumour but it isn’t shrinking – however this proves the treatment is working. Remember that Amelia has received no other treatment.

It pains me greatly to do this, because, no matter how I write this, it will be perceived as trying to take away the hope for Amelia’s survival that the Saunders family holds. Such is not my intent, by any stretch of the imagination. However, these “cysts” almost certainly represent areas of ischemia (low blood flow) leading to tissue death as the tumor outgrows its blood supply. This is a phenomenon commonly seen in advanced malignancy. I know this because tumor angiogenesis ia one of my areas of research interest. Basically, as I’ve described before, tumor cells are constrained in their growth to the diffusion of oxygen and nutrients in aqueous solution unless they can induce the ingrowth of blood vessels, a process called tumor angiogenesis. Tumors frequently can outgrow their blood supply, and when that happens, areas in the center of the tumor will die and liquify. Surgeons are very familiar with this phenomenon, as are radiologists. Tumors frequently, as they progress, consist of a relatively thin rim of viable, growing cells surrounding a central area of necrotic tissue. Sometimes, if you get into a tumor while trying to resect it, that necrotic cellular debris will squirt out like so much disgusting toothpaste out of a toothpaste tube. (We try to avoid this happening, as it means we didn’t get a good margin of normal tissue and can seed tumor cells.) In contrast, when tumors shrink due to chemotherapy or other treatment, they often shrink from the outside in (because that’s usually where the most rapidly proliferating cells are. True, they don’t always shrink that way and sometimes do have spread-out areas of necrosis, but that’s less characteristic.

Sadly, then, seeing “cysts” growing in Amelia’s tumor most likely says nothing one way or the other about whether or not it’s responding to Burzynski’s antineoplastons. That’s assuming that Burzynski’s interpretation of the scans is even correct, which I wouldn’t bet money on. Most likely, these “cysts” indicate that there is no therapeutic effect. I take no pleasure in saying this, but most likely this is true. If you don’t believe me, take a look at some images here, particularly the grade III astrocytoma of the 33 year old woman, which shows what’s known as a “mixed attenuation lesion,” which means it has both solid and cystic regions.

Having encountered Amelia makes me all the more disturbed to learn from that font of quackery defense, Patrick “Tim” Bolen that apparently Burzynski might have slithered away from justice yet again. The last time Burzynski slithered away, his hearing in front of the Texas Medical Board to strip him of his license was postponed by various legal maneuvers. Yesterday, Bolen gloated about the failure of “skeptics” and cited a letter from Burzynski’s attorney Rick Jaffe:

On November 19, 2012, judges of the Texas State Office of Administrative Hearings dismissed the Texas Medical Board’s pending case against Dr. Burzynski. The investigation started by the board in 2008 involved Burzynski’s novel off-label use of combination gene targeted therapy. Early on, two medical board informal settlement panels found that the use of these combination drugs on the advanced cancer patients involved was within the standard of care. However, the Texas Medical Board refused to drop the case and instead filed a formal complaint against Dr. Burzynski alleging the same standard of care violations previously rejected by the board settlement panels. After two years of intense litigation, the case was set for trial in April 2012. However, a week before trial, the administrative law judges dismissed most of the charges against Dr. Burzynski which forced the Board to seek to adjourn the case to do some reevaluation. After the judges denied the Board’s attempt to reverse the previous partial dismissal of the case, the Board did more reevaluation and moved to dismiss the entire case. We didn’t oppose the motion and on November 19, 2012, the case was dismissed.

The cutting-edge, multi-agent gene targeted therapy devised by Dr. Burzynski which was at the heart of this proceeding is still being given at the clinic and is helping countless patients. The Burzynski Clinic thanks all of its supporters and wishes all a Happy Thanksgiving and thanks – Rick.

The “cutting edge, multi-agent gene targeted therapy devised by Dr. Burzynski” is, as I have described, is nothing more than “targeted therapy for dummies,” in which Burzynski picks a cocktail of highly expensive targeted therapies mixed with chemotherapy (yes, Burzynski gives a lot of chemotherapy) based on his simplistic interpretation of a commercial test of dubious predictive abilities. There’s nothing “cutting edge” about it, nor is there anything nontoxic about it, given that Burzynski mixes and matches targeted therapies in ways they were never intended to be mixed and in ways likely to enhance synergistic toxicity. Be that as it may, it is disturbing to learn that Burzynski appears to have gotten off when in my opinion he should have his license removed forthwith to protect patients. Here is a copy of the order. It’s pretty bare bones, and it would be nice to see exactly what the motion to dismiss said. In fact, if there’s anyone out there with a legal background who can look into this and explain it to me, I’d be grateful.

As of now, all I can tell is that, despite extracting hundreds of thousands of dollars from patients like Amelia and being slapped down by the FDA yet again, it looks as though Stanislaw Burzynski is going to slither away from justice again.

Comments

  1. #1 Marc Stephens Is Insane
    La Belle Province
    November 21, 2012

    I only dicscovered the world of skeptic blogs this past March, but in that short time I’ve become aware of at least 15 people who have raised funds publicly for Burzynski. A couple never made it there but many did. Using lowball figures, let’s says 10 people at $150,000 each. That’s a million and a half dollars in less than one year, and that’s only the patients who went public.

    This has been going on for three decades. It just breaks my heart to think of all that money wasted, to think where and how it could have been better used, to think of all the people who donated in good faith, and to think of whose pockets it is now lining.

  2. #2 thenewme
    November 21, 2012

    Ugh. This is utterly depressing. How can he possibly get away with this??

    What can we do to put this jacka$$ out of business? Other than commiserate here, I mean? I’m at a loss for ideas, but surely there must be *something* we can do…? Anybody?

  3. #3 Renate
    November 21, 2012

    What makes things even worse is that I seriously start doubting any form of fundraising for some sort of cancer treatment, even if it appears to be genuine.

  4. #4 Christine (the public servant Christine)
    At home, hugging the cat
    November 21, 2012

    I couldn’t watch the video.

    My dad had benign astrocytomas, and from what I learned from the neurosurgeon, they rarely stop growing, and I doubt would “die from the inside out.”

  5. #5 Lawrence
    November 21, 2012

    @Orac – and for criticizing the parents for going in this direction, we are all made to look like heartless monsters, when in actuality, it is Dr. B who is the monster – promising false hope, while at the same time guaranteeing that the family will be left destitute when their loved one finally passes away…..

  6. #6 elburto
    November 21, 2012

    He is an amoral monster. To lie to the parents of a dying child, to give them hope where none exists, is cruel beyond belief.

    He’s living it up in his mansion, while desperately ill patients hole up in the cheapest possible motel, to conserve money for “treatment”. I would rather stay in my dilapidated rented house forever, than swap lifestyles with him, if it meant taking even a penny made by swindling terminally ill people.

    I smell a rat with these frequent legal victories too, but that’s to be expected in places where justice is dispensed or dismissed by elected, and not appointed officials.

  7. #7 Ken Lewis
    November 21, 2012

    @Orac

    The full motion to dismiss doc is available on the SOAH website. I can email a copy if you like.

    It seems that the TMB are not able to pursue the case because Dr B’s lawyer has successfully argued that Dr B did not treat the patients in question and also is not responsible for the physicians that did treat the patients.

    Sad that in the end the case was about this rather than the patient’s plight.

  8. #8 Orac
    November 21, 2012

    The links would be helpful, as I don’t know where to look. I’m thinking about blogging the decision on my other blog for Monday. Thanks.

  9. #9 Ken Lewis
    November 21, 2012

    You need to go here:

    https://cis.soah.state.tx.us/tokopenweb/

    Click on “Guest account”

    search for docket 503-11-1669

    Then click on the folder that returns. Full case history is there – quite a lot of reading.

    Document #61is the board staff’s motion to dismiss.

    Look forward to reading the new post.

  10. #10 LW
    November 21, 2012

    It seems that the TMB are not able to pursue the case because Dr B’s lawyer has successfully argued that Dr B did not treat the patients in question and also is not responsible for the physicians that did treat the patients.

    I wonder if that would be an effective argument to prospective victims: “Burzynski won’t treat you and won’t even supervise or take responsibility for the doctors who will treat you, even though they use untested combinations of evil chemicals. And here’s his lawyer on record saying so. You may as well stay home and be treated by local doctors whom Burzynski equally will not supervise or take responsibility for.”

  11. #11 lsm
    November 21, 2012

    Thenewme: what can we do to put this jacka$$ out of business? I wish someone would beat him at his own game and make a “real” documentary about him. Plaster it everywhere.

  12. #12 Adam
    November 21, 2012

    I wonder if you lined up all the dead who paid dearly for for his promises if they would reach to the end of his driveway.

  13. #13 Calli Arcale
    November 21, 2012

    Burzynski really seems to be turning into the modern “goat gland” doctor, though at least his work is less likely to directly kill the patient. Equally slippery in the legal arena, every bit as mendacious, just as extortionist in his persuasive tactics to prospective marks. The best we all can do is keep spreading the truth, and hope for saner medical boards.

  14. #14 Adam
    November 21, 2012

    @lsm there definitely needs to be some kind of reader’s companion or response video to rebut the nonsense that video contains.

  15. #15 Lawrence
    November 21, 2012

    I wish there was a way to get the families to take action….I’m also pretty miffed about people from the UK, which has the National Health Service & would be receiving treatment through it for no-cost, are raising the equivalent of $400,000 + just to come here to the States to waste the money…

    But for the families, who are already facing losing a loved-one to Cancer, I doubt they would be open to taking any sort of action that would only prolong the overall suffering of the family…..

  16. #16 Yodelady
    November 21, 2012

    I’m very disappointed he got away again.

    I witnessed someone working a cancer message board recently, apparently on Burzynki’s behalf. He/she offered to refer patients to Burzynski “on request” and seemed to be trolling for people whose chemo options had been exhausted. Does he pay commissions to people who bring in patients, or was I watching an over-eager volunteer?

  17. #17 Todd W.
    http://harpocratesspeaks.com
    November 21, 2012

    @lsm

    I wish someone would beat him at his own game and make a “real” documentary about him. Plaster it everywhere.

    Perhaps a Frontline episode on PBS?

  18. #18 Marc Stephens Is Insane
    November 21, 2012

    On the subject of Dr. B, there’s a man in Italy who has a brain tumour and is appealing to the public for their solutions and suggestions. He’s set up a website where you can “vote” on his treatment and unfortunately Burzynski is one of the top suggestions (his name actually appears twice, spelled differently, so the votes are actually higher than they appear to be.

    Other high-scoring woo suggestions include Gerson, “energy,” baking soda, cannabis and vitamin C. Fortunately there are also high scores for surgery, chemo, and seeking medical opinions.

    I really hope he doesn’t become another Burzynski victim down the road.

    Here’s his website, in Italian and English:

    http://www.artisopensource.net/cure/

    You can click on each subject and read the comments and suggestions provided.

    And here’s the summary from The 21st Floor website:

    http://www.thetwentyfirstfloor.com/?p=6789

  19. #19 W. Kevin Vicklund
    November 21, 2012

    It seems that the TMB are not able to pursue the case because Dr B’s lawyer has successfully argued that Dr B did not treat the patients in question and also is not responsible for the physicians that did treat the patients.

    I concur with this assesment. IIRC, the clinic and the treating doctors are also being sued separately. This is covered in Order 12, which won’t open for me. So while Burzynski himself is getting off, the other doctors and his clinic are still subject to justice.

  20. #20 Todd W.
    http://harpocratesspeaks.com
    November 21, 2012

    Perhaps those who would like to see a Frontline episode on him could drop a line to PBS here

  21. #21 BKsea
    November 21, 2012

    From what I can tell, Burzynski has only gotten approval from the FDA of a Special Protocol Assessment (SPA) for his phase 3 trial. My understanding is that this is just an approval of the trial design, not permission to enter into the trial. He will still need an Investigational New Drug (IND) approval, which requires evidence of efficacy from phase 2. Presumably, he has not started phase 3 because he has no evidence of efficacy and cannot get an IND approval from the FDA.

    Thus, your statement “He also has a phase III trial that the FDA foolishly approved two years ago” is probably misleading.

  22. #22 Captain A
    November 21, 2012

    Frontline would be great. That would generate the public pressure on the politcians in Texas to do something.

    The Texas Medical board apparently has no teeth. They are behaving like a court rather than a regulatory authority charged with protecting the public. It seem that quackery is immune to medical boards. They are quick to jump on substance abuse, and sexual misconduct, but quackery…. Sorry, cant help ya.

    I think in Burzynski’s case the approach should be an attack on his fraud. Find a pissed off family or three and bring in the cops for a perp walk and a pile of subpoenas . Once the case is rolling, then you can bet more victims of his fraud will come forward. No one wants to be the first. That approach would require a motivated local DA or Chief of police.

  23. #23 Todd W.
    http://harpocratesspeaks.com
    November 21, 2012

    @Captain A

    Use that contact form for Frontline to suggest they cover the topic. I’d also suggest any disgruntled former patients to get in touch with Frontline, too.

  24. #24 elburto
    November 21, 2012

    I wonder if you lined up all the dead who paid dearly for for his promises if they would reach to the end of his driveway.

    My first thought (in the twisted grip of insomnia) on reading this post today was actually “I wonder if his walls are awash with the blood of his victims?”.

    I like your measuring system very much too.

    WRT NHS patients – the heartbreaking shame of it all is when children are dragged off to Texas. We have some world-class paediatric oncology services. Great Ormond Street Children’s Hospital (GOSH) attracts patients from all over the world.

    Consultants based there have had to see patients suffer terribly because of Burzynski, they’ve received patients back at GOSH and tried to palliate the horrendous consequences of his “treatment”.

    Parents – your dying children deserve so much better. Burzynski offers the worst hope of all, false hope. His staff misread scans to make it appear as if tumours are shrinking. He prescribes glucocorticosteroids that obfuscate certain types of matter on MRI scans, making it appear as if there are no tumours.

    Your children deserve a little dignity and fun in their final months. Many of us would donate what little we have if you want to take them to one of the Disney parks, or another holiday of a lifetime. Alternatively, you could get them to write a ‘Bucket List’ and get help from the public, and charitable donations from businesses, so they can fulfill it wish by wish.

    Anything’s better than hypernatremia, being schlepped around Texas, being used as a guinea pig or cash cow, or spending the last days of their life being dosed with cocktails of random drugs.

  25. #25 Narad
    November 21, 2012

    I concur with this assesment. IIRC, the clinic and the treating doctors are also being sued separately. This is covered in Order 12, which won’t open for me.

    Yah, it’s behaving oddly, but it came down properly when I switched to the “download” link. But I’m not seeing any mention of separate proceedings in it.

  26. #26 Robert Blaskiewicz
    November 21, 2012

    Folks, be aware that there are some major public actions coming Burzynski’s way. Stay tuned and be ready to take action.

  27. #27 thenewme
    November 21, 2012

    @ToddW,
    Thanks so much for the Frontline suggestion link! I’d LOVE to see an evidence-based Burzynski documentary! Done right, I really think it could rank right up there with the best of true-crime thrillers, with the added benefit of helping to spread the word about this despicable “doctor.”

  28. [...] Orac on Amelia and the ruling: http://scienceblogs.com/insolence/2012/11/21/yet-another-patient-wasting-money-on-burzynski/ [...]

  29. #29 Grant
    http://sciblogs.co.nz/code-for-life/
    November 21, 2012

    On very grass-roots approach would be to write to editors of newspapers and magazines that present advertorial articles supporting fund-raising efforts aimed at taking a child to some dodgy practitioner. (Any practitioner, not just Dr. B.)

    I did this a while ago for an article drawing attention to raising money for Dr B. It might be my ego and/or confirmation bias talking, but my impression is that there’s been less of this since. The thing I tried to do was suggest that the newspaper was carrying some weight – in including details to funding raising efforts it was effectively advocating the effort. The implication is that they’re advocating a dubious enterprise, which would have legal and moral issues; I let that last run between the lines, but I doubt an editor would miss it.

    Although very grass-roots, this may have at least some impact. The oxygen these things depend on is publicity, after all. (On that note, there is simply no way to stop the lousy Facebook, etc., pages.)

  30. #30 thenewme
    November 22, 2012

    @Robert Blaskiewicz,
    Can you tell us more? Where should we stay tuned, and what kind of action can we prepare to take?

    @Grant,
    Thanks for the link. I like your letter to the editor. I’ll definitely start making more effort to do this myself. Sometimes I think, why bother. I feel like I’m whispering in the midst of a woo-ful cicada song, but maybe all our small voices together can help reach critical mass.

  31. #31 Narad
    November 22, 2012

    Folks, be aware that there are some major public actions coming Burzynski’s way. Stay tuned and be ready to take action.

    If this scenario requires blog commenters to “be ready to take action,” I’m pretty sure “major” is misplaced.

  32. #32 herr doktor bimler
    November 22, 2012
  33. #33 Guy Chapman
    November 22, 2012

    I am in contact with Amelia’s family – let’s not forget that in the middle of this there is a little girl with a terrifying disease and a family living on their nerves. They deserve our moral support even while we challenge the way Burzynski does business.

    I hope Amelia’s dad won’t be too angry with me for saying this: he has seen this blog, I believe, and has sent the MRIs to a respected oncology centre in the UK for a second opinion, which is the sensible thing to do. There is little doubt that the progression of Amelia’s disease is not following the classical route (that form independent oncologists).

    I think the worst ting Burzynski does is to put people in the position of having to defend a decision which will have seemed perfectly rational to them at the time, but where they later find out they were only given a part of the picture. He seems to be using patients as a human shield to deflect criticism of his failure to provide sound evidence. I wonder how he can fail to be aware of this?

    Stanislaw Burzynski: publish your clinical trials and data. Do it now. You owe it to your patients.

  34. #34 Bob G
    Los Angeles
    November 22, 2012

    Perhaps someone can explain why the government continues to allow phase II clinical trials, in spite of 30 years of failure. Is there a way for the federal authorities to take away the authorizations to do these trials? The same holds for the even more dubious phase III trial. What would the effect be in practice if Dr B could no longer operate with what is, in effect, a license from the federal government to experiment on humans? Would this have any effect on his ability to continue these efforts?

    A second thought which I believe I have mentioned before: The simplest way for the British to save the money of these desperate families is to allow some private clinic in England to do the same treatment, including offering the same drugs, but do it for the price of the drug, which seems to be minimal. But while they are doing this nonsense, do competent medicine including following the process of the disease as usual, including MRI scans or CAT scans or whatever is indicated. Invite Dr B to explain how to treat the patients, but not to take their money. I realize that this is an imperfect method, but it would accomplish a couple of things: Make clear the uselessness of this treatment or demonstrate its marginal effectiveness, save British families stress and money, and ultimately discredit this nonsense for what it is.

  35. #35 Bob G
    Los Angeles
    November 22, 2012

    One additional comment, which is so obvious to any aging biologist that it generally goes unsaid. Perhaps it would be useful to say it:

    The “antineoplaston” approach, which apparently involved extracting material from human urine, goes back to a day when essentially nothing was known about what causes cells to grow, divide, differentiate, or die. During the 1970s, science developed methods to isolate and sequence genes, to look at the activities of specific genes, and to start developing methods to look at relative protein expressions. In later years, the details of the pathways that control cell growth and development have been explored in increasing detail. You can go to the websites of modern companies that sell research supplies and download diagrams of cell-regulatory pathways that could only be dreamed of back in 1980. (see for example

    http://www.sabiosciences.com/pathway.php?sn=Akt_Signaling

    From this modern perspective, it is possible to target specific points in these pathways that may allow effective therapeutics. Attacking the estrogen receptors of breast cancer, for example, is an established treatment with demonstrated effect. What is pertinent here is that it is consistent with our increasing understanding of the basic science of how the estrogen receptor (and lots of other molecules) drive cell growth.

    The “antineoplaston” approach comes from an earlier era in which there was nothing much but empiricism — that is, the search for naturally occurring “magic bullets” that could kill cancer the way penicillin kills some bacteria, and the way that aspirin reduces a fever. We now know how penicillin and aspirin work, but at the time of their discoveries, the underlying mechanisms were opaque.

    The problem with the “antineoplaston” approach is that it is empirically weak to begin with, and has obviously not led to anything better in the meanwhile. It has not led to advances in cancer biology, in spite of the fact that other researchers have explored the connection between histone acetylation and deacetylation and cancer. It would appear that Dr B was never a very good researcher and has long since stopped trying to add anything to science. What’s left is a therapeutic procedure which is analogous to bloodletting for a fever. It’s strange to read the websites of the parents of dying children as they refer to the Burzynski approach as “experimental.” The implication is that this is somehow leading edge and might be an advance in science, rather than a trailing edge of long discredited assertions based on little if any science.

    It is of course possible to find effective treatments from raw empirical observations — luck is always a possibility in some things — but in the meanwhile, thousands of workers are putting in long hours figuring out the biochemical details of cell growth and cell death, and out of that work, understanding will emerge, and out of that understanding, effective therapeutics will emerge.

    Shorter version: At some point, improved therapies for these horrible childhood tumors will appear, and at that point, the source for Dr B’s patients will dry up.

  36. #36 frozenwarning
    November 22, 2012

    Bob G
    “The simplest way for the British to save the money of these desperate families is to allow some private clinic in England to do the same treatment, including offering the same drugs, but do it for the price of the drug, which seems to be minimal.”

    The answer to this is simple. In the UK we have a thing called the Cancer Act, which “prohibits anyone from taking any part in publication, except under specified conditions, of advertisements that “offer to treat any person for cancer, or to prescribe any remedy therefor, or to give any advice in connection with the treatment thereof”.

    It’s designed specifically to stop cancer quacks from promoting their nonsense. In fact it’s what scared Burzynski off from coming to the UK for a quack “conference”.

    The only way Burzynski’s treatment could be used here is in the context of proper clinical trials overseen by real oncologists and real ethics committees, and we know he won’t ever do those.

  37. #37 dingo199
    November 22, 2012

    http://www.artisopensource.net/cure/

    The magnetic resonance I did a few days ago shows that the tumor in my brain has not grown, and that it is positioned in a way that allows for surgery with few risks. The dietary strategies, the changes in lifestyle, the homeopatic oncology, the traditional chinese medicine and the many energies which you all have given me have all had the best of results.

    In a few days my surgery will take place

    Why bother with that, if the homeopathy and energy healing are so wonderful and have had the best results?

  38. #38 Christine (the public servant Christine)
    Eating lunch at my desk
    November 22, 2012

    The Fairfax newspapers in Australia featured this story about some guy who defeated cancer with qi gong, vegan diet and medation:

    http://www.smh.com.au/lifestyle/life/power-to-the-people-20121121-29psd.html

    The comments feature the usual cranks insisting that kooky supplements and diets will cure cancer, a bloke who insists it was the chemo that killed his mother, not the advanced pancreatic cancer, and of course the “it’s all your negative energy that makes you ill!” And fortunately, a good number of people taking on the cranks.

    I do wish there was more distinction made in the media between “alternative medicine” (woo) and “integrative medicine” (the allied health approach, incorporating diet and exercise as well as drugs and surgery). As I’ve said before, when my mother was being treated for cancer, she had regular sessions with a dietitian and exercise physiologist, as well as the daily radiation. Medical practice today knows full bloody well a “holistic approach” achieves great results, even if the woo-meisters insist they are the only ones who treat the whole person.

    The campus where I’m currently based hosts free weekly Look Good, Feel Better seminars for cancer sufferers, and it’s wonderful to see the way the attendees are empowered by what they learn, to hear them laughing and joking as they try different wigs and makeup. If that’s not an “integrative” approach, feel free to take my lunch off me.

  39. #39 David N. Brown
    November 23, 2012

    I find the grounds given for the dismissal a very interesting development. I have suggested several times in discussions of Dr. Burzynski at RI that Dr. B might NOT play an especially active role in day-to-day operations of “his” clinic. Therefore, I find the claims made by Burzynski’s defense to have at least some plausibility. The fact that the clinic’s own representatives have raised the issue could be a hopeful development in its own right, because it could open the way both for more specific disclosures by the clinic and further inquiries by others.

    The scenario of the Burzynski’s clinic operating to a substantial extent without Burzynski raises some darker possibilities, the most ominous being that the clinic, as a self-sufficient enterprise, could continue to operate even if Burzynski died, as happened with Hulda Clark.

    David N. Brown
    Mesa, Arizona
    http://www.exotroopers.wordpress.com
    http://www.evilpossum.weebly.com

  40. #40 Deb
    U.S
    November 23, 2012

    So how many of you posting on here has lost a Child ? Your baby? How many of you really checked out this tumor? If you have then you should know by now that Amelia’s tumor would have took her life by now if this treatment was not working. My daughter had the same tumor we found out Dec. 17,11 in Jan she started her radiation they told me without it she had maybe a month or two if she was lucky. She has her last radiation Feb 15, 12 she did get better in July we noticed that she was starting to go down again. I tryed to get her to the clinic but because of people like you the clinic was shut down to her. I want to know how many of you people have held your 8 yr old daughter while she cryed she didn’t want to die she wasn’t ready to go. Have you ever had a Dr. tell you that we are going to starve and dehydrate your daughter and let her die that way cuz it’s the human way to go. I laid 24/7 beside my daughter trying to keep her alive till the clinic reopened for her. It was my daughters only hope. For the last 10 months I watched my child die. She took her last breath in my arms Sept. 28, 12 I carried my daughter for the last time to the car that carried my daughter away. If any of you have children at all think about how you would feel in the same situation. I would have done anything to keep her alive on earth with me where she belonged. My daughter hated pokies I.V.s but pointed to the door she wanted to go get them why because she didn’t want to die. I believe if she could have had treatment in Texas she still would be alive. I have ran into people her whom had friends treated there and said its the place we need to be. If Texas was my last hope I should be allowed to seek treatment there it should be up to me. No one offered any other help but to just let her die. It broke my heart when my 8 yr old begged me to save her life and I couldn’t. I would have been happy with it just being stable.
    that would have meant she could be here watching her niece grow and being with her mom, sister, brother and grandparents this Christmas. I watched my daughter fight hard to stay here on earth her spine stuck out 3 inches he eyes begged me to help the tears she shed not wanting to go to heaven. I lost a piece of my heart the day she took her last breath and I’m angry that I could not take her to Texas. Amelia is doing well on her treatment better than my daughter that had to pass. She needs to be able to keep it up. Her family chose the right thing to do. At the rate her tumor was growing she should have been gone before my daughter.

  41. #41 Chris
    Neither here nor there...
    November 23, 2012

    My sincerest sympathies for your loss. But the desperation that you experienced does not make it okay for Burzinski to charge ten of thousands of dollars for false hopes.

    If you read some of the other articles about Burzinski you will learn that he has not been shut down, uses painful chemotherapy, charges high prices from his own pharmacy (the drugs are cheaper elsewhere), and the children die after suffering even more.

  42. #42 Edith Prickly
    November 23, 2012

    Deb – I am deeply sorry for your loss. Your hurt and anger are completely understandable, but please don’t add to your own burden of grief by imagining that Burzynski could have done anything for your daughter that conventional medicine couldn’t. He has not discovered any miracle cure – he just pretends he has so he can prey on desperate parents like you. All Burzynski would have done is lie to you, cheat you out of thousands of dollars and waste the remaining time you had left with your child.

  43. #43 MI Dawn
    November 23, 2012

    @Deb: First, my sincere condolences for your loss.

    Second:

    Have you ever had a Dr. tell you that we are going to starve and dehydrate your daughter and let her die that way cuz it’s the human way to go.

    No, I’ve never heard any physician say that, and I hope you reported the doctor who said that to you to your state board. No decent physician worth his/her salt would say that. I’ve NEVER known a hospice physician who would say that.

    As Chris pointed out, Burzynski has never been “shut down”. Curious that you would have been told that. Seems to me you would have been a perfect mark for that clinic – a dying child, living in a place where fundraising to save a child is very common, desperate to save your baby. Please remember your beautiful child as she was. Your baby, a very precious person who lost her battle.

    Again, my condolences. I hope you find peace in your life.

  44. #44 MI Dawn
    November 23, 2012

    (is it weird that the blockquote also italicized what is in it? Never noticed that before – and I only used blockquote, not italics…)

  45. #45 Grant
    http://sciblogs.co.nz/code-for-life/2012/03/09/were-so-used-to-getting-a-prescription-thats-its-surprising-when-we-dont/
    November 23, 2012

    Deb,

    While I have the greatest sympathy for those who lose their children too young,
    you wrote: “No one offered any other help but to just let her die.”

    I wrote an article based around an excellent comment posted on my blog titled “We’re so used to getting a prescription that’s it’s surprising when we don’t”.

    http://sciblogs.co.nz/code-for-life/2012/03/09/were-so-used-to-getting-a-prescription-thats-its-surprising-when-we-dont/

    I’d encourage you to read it. (Some of the comments that follow are worth reading, too. [Ignore the troll, Ron Law.])

    People will not have not offered no “other help but to just let her die.”

    They will have not offered a miracle cure.

    They won’t have offered a cure because they realised there was none.

    For some illnesses there are not even prescriptions for treatment at all. It’s not what people want, of course, but it’s how reality can be.

    I sympathise that people might want to “try everything” and “leave no stone unturned” but there’s also a need for recognising that you’ve tried the things that might make a difference and any other “treatments” will just be giving false hope to the patient (and their parents, family).

    For it’s worth, you may be hurting yourself in persisting with the idea that there was miracle cure that you were not able to access. Better to recognise life’s realities I think – that some things don’t have cures.

    If you read the comments to my piece, you’ll see the media has to carry part of the blame here, through raising expectations. All those daft articles in cheap newspapers and sometimes even (supposedly) quality papers play on people’s wants.

  46. #46 Deb
    November 24, 2012

    His clinic shut down for children in April.

  47. #47 Lawrence
    November 24, 2012

    @Deb – my condolences for your loss, but if you had taken your daughter to Texas, she still would have died & you would have paid out hundreds of thousands of dollars for nothing….

    You should look up the case of a girl from the UK that went to Dr. B & returned back to England in such horrible shape that it was a miracle that the plane ride alone didn’t kill her….Dr. B does not offer a cure, he offers false hope – and he’ll empty your bank account at the same time….

  48. #48 Chris
    Neither here nor there...
    November 24, 2012

    Deb, that is actually a good thing, even if we just have your word on that. If you would read the other articles here about Burzinski, you will learn you were saved from even more heartache. There s no evidence that Burzinski has a better treatment.

  49. #49 Chris
    Neither here nor there...
    November 24, 2012

    Can we get verification that children are now barred from Burzynski’s scam? I tried checking (it helps to spell it right), but all I get from Google are articles about the scam, and the clinic’s website is having “technical difficulties.”

  50. #50 bad poet
    November 24, 2012

    ProPublica and/or ICIJ would both be excellent sources of independent investigative reporting on the corruption, lies, and deceit Burczynski has put countless people through in pursuit of pride and profits. ProPublica works with Frontline, as well as with newspapers like the Chicago Tribune. ICIJ might be interested since many patients have come from Europe and Australia.

  51. #51 David N. Brown
    November 24, 2012

    @Grant,
    “…you may be hurting yourself in persisting with the idea that there was miracle cure that you were not able to access.”

    Part of the problem with this kind of thinking is that even a real “miracle cure” will take years if not decades to develop into something that will do anyone real good (and that’s not even taking into account all the hoops that “big government” and “big business” introduce), and even then, there’s lots of ways that it can not get to the people who need it most. Scorpion anti-venom is a case and point where I live: The market is relatively small and the expense to make it is relatively high, so evidently companies are reluctant to make it available. Then, on top of that, the risk of being stung presumably rises with physical isolation, so even if anti-venom were plentiful and cheap, it would still be an open question how many of the people who need it would get it in time.

    David N. Brown
    Mesa, Arizona

  52. #52 JBenal
    November 25, 2012

    Concerning the discussion of “letting a child die of thirst and hunger”: Dying people are often neither thirsty nor hungry; the loss of thirst and appetite is part of the process of dying. Feeding and hydration at that point won’t do anything but add discomfort.

  53. [...] I had tentatively planned on doing an update on Stanislaw Burzynski, given that he appears to have slithered away from justice yet again. Then what to my wondering eyes should appear in my e-mail in box but news of a study that [...]

  54. #54 Jamie
    Texas
    November 26, 2012

    Please tell me what the success rate is for the treatment of cancer through surgery and radiation?

    Are you really bold enough to point the finger at alternative medicine as the bad guy when so-called modern medicine would have you believe that chemo, aka hopefully kill the cancer and not you through toxic radiation is the only treatment? I’ve had many friends on chemo that have died, I’m sure just as many as those who sort alternative means.

    I don’t expect to see this on your board though, I’m sure you prefer only to associate with those in agreement

  55. #55 Orac
    November 26, 2012

    You would be wrong, of course.

  56. [...] started to notice Burzynski and his followers in a big way. Most recently it was Rachael Mackey and Amelia Saunders. Before that, it was a parade of children and adults that included Brynlin Sanders, Jesse Bessant, [...]

  57. #57 Krebiozen
    November 26, 2012

    Jamie,

    Are you really bold enough to point the finger at alternative medicine as the bad guy when so-called modern medicine would have you believe that chemo, aka hopefully kill the cancer and not you through toxic radiation is the only treatment?

    Of course there are other treatments. The important question is whether there are other effective treatments. We don’t know if Burzynski’s treatments are effective or not, because he has failed to publish his results despite having had plenty of opportunity. Did you know Burzynski uses lots of chemotherapy? The only difference is he appears to prescribe it incompetently and charges vast amounts of money for it. By the way, chemotherapy and radiotherapy are entirely different things.

    I’ve had many friends on chemo that have died, I’m sure just as many as those who sort alternative means.

    Why are you sure of this? It isn’t true. We know how effective conventional treatments are, as well as most alternative cancer treatments. That’s why they remain alternative (because they don’t work) and oncologists prescribe conventional treatment (because it’s the best we currently have).

    Anyway, Burzynski is only “alternative” in the sense that he hasn’t bothered to publish his results and go through the peer review and replication process as conventional treatments have to.

  58. #58 Thomas
    November 26, 2012

    “I’ve had many friends on chemo that have died, I’m sure just as many as those who sort alternative means.”

    You do realize that Dr. Burzyinski’s treatment is chemo, don’t you?

    “I don’t expect to see this on your board though, I’m sure you prefer only to associate with those in agreement”

    When you notice you were wrong, will that affect your confidence in your other judgements?

  59. #59 Politicalguineapig
    November 26, 2012

    Jamie: My aunt had both surgery and chemo..that’s why she’s alive today. And she’s just one of millions. I’m sorry about your friends (if that’s true), but they are outliers. And,by the way, you’re mixing up chemotherapy and radiation therapy which are two different animals. I’ll leave it to the other intellects here to explain it to you.

  60. #60 Alan P
    Toronto
    November 27, 2012

    Deb,
    All sympathies and condolances, I lost my child (Rebecca) in September 2003. It made me bat shit crazy for a long time. What her death at 2 years old did not do, was help me to think clearly about science or reason or logic. When you are just so fresh and present with grief…you just can not think calmly , or critically.
    I often used to ask my trusted friends “am I talking crazy talk again?” If they didnt answer, I knew.
    If or when your kid dies, you must (ok should) take a holiday from giving, or taking advice or offering opinions. They will probably be saddly removed from the real world, and a little bit “crazy” or “off base”. It wont feel that way, but your friends will help you.
    Its an unfair and cruel world but false hope is worse, much worse. Appologies for the spelling, I just dont give a damb about spelling.
    I know I have been there.

  61. #61 Richard Saunders
    Reading, UK
    November 29, 2012

    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

  62. #62 Chris
    Neither here nor there...
    November 29, 2012

    Mr. Saunders:

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

    If you click on the name, Orac, under the title of this article you will learn that the author is an oncologist who does real research at a university cancer center. Why don’t you think he does not know about is or is not chemotherapy?

  63. #63 JGC
    November 29, 2012

    Antineoplastins are metabolites of the compound phenyl butyrate (e.g., ASN-1 is phenylacetic acid, A10 isphenylacetylamino piperidine 2,6-dione treated with alkali to improve solubility. Even if all your daughter’s getting is antineoplastins she’s receiving chemotherapeutics–just not any chemotheraeutics ever shown to be safe or effective.

    As for ‘charges too much”, no ethical drug developer charges subjects tobe participants in clinical trials . Further, Sigma ALdritch will sell you ASN-1 (AKA phenylacetic acid) for less than $5 for a half kilo–how much does Burzynski’s pharmacy charge for the same? You do the math.

  64. #64 Lawrence
    November 29, 2012

    @Mr. Saunders – my heart goes out to you and your family, and your daughter for having to bear such a burden.

    You do realize that your daughter is part of a “clinical trial” since none of Dr. B’s treatments have ever been officially approved for use by the FDA? Do you also realize that as such, you should not be paying a dime for what is an “experimental” treatment – which, up to even today, has no actual published research to show that it works?

    As a parent, I understand the desire to do anything to save your child, but there is no evidence whatsoever that the treatment she is receiving will do anything – other than completely empty your bank account. You will be broke and your child will still have Cancer.

    If you read this, I would ask that you put our direct questions to the doctors at the clinic:

    1) Why does Dr. B requirement massive payment for what are “clinical trials?”

    2) Why hasn’t Dr. B published any of his trial results, ever?

    3) Ask point blank if your daughter is receiving Chemo.

    I do hope for the best….but Dr. B is offering you nothing but false hope.

  65. #65 Grant
    November 29, 2012

    @ Richard Saunders,

    Just to add to what others have written:

    You wrote: ‘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.’

    I once presented a comment written on my blog as a post because I thought it elegantly made the point that people can be reluctant to accept that there may be no treatment available at all. I linked to it earlier in these comments but here it is again:

    http://sciblogs.co.nz/code-for-life/2012/03/09/were-so-used-to-getting-a-prescription-thats-its-surprising-when-we-dont/

    People selling treatments can play on the fact that parents want to try everything they can. It’s quite understandable parents would want this, and admirable from one standpoint, but it has it’s flaws too. Rather than repeat myself, if you track back up to my comment of November 23, 2012 you’ll see some of my thoughts there.

    Best of luck with your daughter.

  66. #66 lilady
    November 29, 2012

    @ Richard Saunders:

    As others have explained to you on this site, Dr. Burzynski is a scam artist. He combines his antineoplastins with “tradiitonal chemotherapy” and charges patients and their families exorbitant fees for his *treatments*.

    He has absolutely no training here or in Poland as an oncologist; neither does his son Gregory who is a partner in the Burzynski clinic. He has a history of prescribing *traditional* chemotherapy for various types of cancers, where research studies in cancer research laboratories and in cancer specialty hospitals, have proven that these particular chemotherapeutic medications are in ineffective for his patients’ types of cancer. He has a history of using patients’ credit cards to pay for these ineffective and inappropriate medications with prescriptions filled at his family owned pharmacy.

    You’ve made assumptions about Orac, other posters on this blog and cancer treatment trials up thread, that are not based in fact.

    Orac is a breast cancer surgeon and is the director of a breast cancer research center. Many of the posters on this blog are physicians, scientists, researchers and health care providers. Each and every poster is extraordinarily well-versed and educated in evidence-based medicine. Some of us are cancer survivors.

    You stated…

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

    Anmtineoplastins is chemotherapy, Mr. Saunders.

    “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.”

    You are mistaken Mr. Saunders. There are trial treatments for DIPG…

    http://www.stjude.org/stjude/v/index.jsp?vgnextoid=4931bfe82e118010VgnVCM1000000e2015acRCRD

    ” 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.”

    There are clinical trials for your child’s type of cancer and they are provided free-of-charge to your child. And, no child with cancer is ever refused treat at St. Jude Hospital, based on an inability to pay for treatment.

    http://www.stjude.org/stjude/v/index.jsp?vgnextoid=4931bfe82e118010VgnVCM1000000e2015acRCRD

    “Mission

    “The mission of St. Jude Children’s Research Hospital is to advance cures, and means of prevention, for pediatric catastrophic diseases through research and treatment. Consistent with the vision of our founder Danny Thomas, no child is denied treatment based on race, religion or a family’s ability to pay.”

    “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.”

    Burzynski may not be charging you for antineoplastins, but he is charging you for his *expertise*. Eventually, you will be getting padded bills for his care.

    “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 have considered what I write about Burzynski, Mr. Saunders. He is a scam artist who offers false hope to his parents and to families who are hoping for miraculous cures. There may not be a cure for your daughter’s cancer and if such a cure exists, you will not find that cure within Burzynski’s clinic.

  67. #67 Bob Moore
    Hamilton, AL
    November 29, 2012

    Burzynski has a name. I have a name and it’s Bob Moore. Also, you required guite a lot of personal information before I was allowed to make this post. Let me ask you something. Who or what the hell is ORAC?

  68. #68 Infuriatingly Moderate
    November 29, 2012

    Something that’s been bugging me for a long time, and prompted by the comments re: Gleevec on another thread…

    If Burzynski’s protocol is so promising, why hasn’t anyone else in the world been petitioning to sign on with Burzynski to do trials in their own countries/regions, instead of requiring a flight to Texas?

    Or is Burzysnki just whining that “only WE can do it right – here in our super-special snowflake clinic”?. And apparently Burzynski has no hospital affiliations, either. Someone please correct me if I’m wrong, but AFAIK if someone in his care goes downhill and needs, say, ICU treatment that his clinic can’t handle, they get punted into the local “real hospital” emergency department.

    And I find it hard to believe that any children’s hospital anywhere in the known world wouldn’t be fighting tooth and nail to save children anyway and anyhow they possibly could. A toddler dying of cancer is a nightmare no matter where you live.

    What is wrong with this picture???

  69. #69 Grant
    November 30, 2012

    Bob Moore – widely known to those who look ;-) Seriously, though, pseudonyms are fairly common on-line – it’s not a big deal.

    Infuriatingly Moderate – others have pointed out antineoplastins are available elsewhere, too; if hospitals think them useful, they can use them, etc.

  70. #70 Marc Stephens Is Insane
    November 30, 2012
  71. #71 Politicalguineapig
    November 30, 2012

    Bob Moore: I think Orac has a bio on this blog. And seriously, a name,which doesn’t even have to be yours, and an email address is hardly a lot of information. I have to give out more for job applications.

  72. #72 Narad
    November 30, 2012

    Also, you required guite a lot of personal information before I was allowed to make this post.

    Too bad all that effort went for nothing.

  73. #73 Marc Stephens Is Insane
    November 30, 2012

    Cookie please…

  74. #74 herr doktor bimler
    November 30, 2012

    Burzynski has a name. I have a name and it’s Bob Moore.

    I have multiple names but I don’t go around boasting about it.

  75. #75 Krebiozen
    November 30, 2012

    Who or what the hell is ORAC?

    Looks like you require spoon-feeding. Look at the top of the page, where you will find the title of this blog post. Under that you will see it says “Posted by Orac on November 21, 2012″. The name “Orac” is underlined and in blue, a clue that it is a link. Click it and all will be revealed.

  76. [...] 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: [...]

  77. #77 flip
    November 30, 2012

    Also, you required guite a lot of personal information before I was allowed to make this post.

    Yeah cause a name and an email address is certainly a lot of information. Good thing I had my birth certificate next to me, otherwise I’d never be able to post a comment here again! Heck, I’m surprised it lets me comment at all, since I don’t use my real name or my real email address…

    Wait…. hang on… nope, almost had an idea there. Never mind.

  78. #78 flip
    November 30, 2012

    @Richard Saunders

    I drafted a reply, but won’t bother posting it. I’m in no mood to upset a worried father, and quite frankly, most of your comments and opinions have been dealt with amply by the various blog posts and comments on Burzyinski already.

    Instead, I’ll only post my sincere good wishes. I do hope, for your daughter’s sake, that we’re all wrong.

  79. #79 flip
    In the place where long comments aren't annoying
    November 30, 2012

    @MSII

    I only dicscovered the world of skeptic blogs this past March, but in that short time I’ve become aware of at least 15 people who have raised funds publicly for Burzynski. A couple never made it there but many did. Using lowball figures, let’s says 10 people at $150,000 each. That’s a million and a half dollars in less than one year, and that’s only the patients who went public.

    This has been going on for three decades. It just breaks my heart to think of all that money wasted, to think where and how it could have been better used, to think of all the people who donated in good faith, and to think of whose pockets it is now lining.

    and @elburto

    Parents – your dying children deserve so much better. Burzynski offers the worst hope of all, false hope. His staff misread scans to make it appear as if tumours are shrinking. He prescribes glucocorticosteroids that obfuscate certain types of matter on MRI scans, making it appear as if there are no tumours.

    Your children deserve a little dignity and fun in their final months. Many of us would donate what little we have if you want to take them to one of the Disney parks, or another holiday of a lifetime. Alternatively, you could get them to write a ‘Bucket List’ and get help from the public, and charitable donations from businesses, so they can fulfill it wish by wish.

    Anything’s better than hypernatremia, being schlepped around Texas, being used as a guinea pig or cash cow, or spending the last days of their life being dosed with cocktails of random drugs.

    and @Guy Chapman

    Stanislaw Burzynski: publish your clinical trials and data. Do it now. You owe it to your patients.

    Because they all deserve repeating.

    @Deb

    I’m sorry for your loss. However, criticism of the doctor is not the same as criticism of the patient. Most here are horrified not only that your daughter suffered and died, but also that other daughters will suffer and die *because* their parents have been given false hope at an exorbitant cost. We want all people to be cured by cancer; but only if the cure has been proven to be safe and efficacious.

    We also realise that parents like you are so desperate that they make for vulnerable ‘victims’ at the hands of snake oil salesmen. The more we talk about it, and argue for better patient protection, the better off everyone will be.

    It’s worth also pointing out that ‘any hope’ is sometimes just as bad as ‘no hope’ – see the many patients who have died anyway despite Burzyinski.

    Amelia is doing well on her treatment better than my daughter that had to pass.

    No, Amelia is *said* to be doing well. No one here has seen her medical records, so no one here can comment on an unverified story.

    His clinic shut down for children in April.

    You do realise that he can only do clinical trials can’t you? Technically speaking, he’s not offering ‘normal treatment’, but only medications in (the guise of) an experimental setting. And to top it off, there’s no data from these experiments – after 30 years – so there’s no way of telling his ‘clinic’ is doing any good at all.

    @Lilady

    Each and every poster is extraordinarily well-versed and educated in evidence-based medicine.

    You exaggerate. Some of us are not scientists or involved in medicine, but are humbly willing to learn.

    … On a side note, is it me or is there always an unusually high number of believers who end up on these threads? Anti-vax always brings the trolls, but compared to the occasional reiki lover, Dr B seems to get a disproportionate number of fans… Is there an unusually large anti-chemo contigent I’m just not aware of? (Hmm, maybe it’s that reiki is relatively left-of-centre compared to chemo which is far more prevalent in society) And oddly enough, usually from Texas too.

  80. #80 Renate
    Behind my computer
    November 30, 2012

    I’m not sure, but I think Dr. B. gets a lot of fans, because he promises a cure for people, who are supposed to be dieing. People just want to believe he is their last resort and their last hope for getting their life, or the life of their loved one back. And if people still die, there is always the excuse they would have died anyway.
    I think the mindset of these people is nicely described in ‘The spare room’, from Helen Garner.

  81. #81 flip
    November 30, 2012

    I agree Renate, but there’s other talk here of promises for cures, but it doesn’t seem to attract as much attention. Part of me thinks that along with hiring very stupid marketeers to harass bloggers, Dr B has also hired very smart marketeers to push the numerous testimonial websites, etc.

    But it’s also what I meant in the brackets: chemo will usually be more important to fight ‘against’ than fighting for reiki.

  82. #82 Todd W.
    http://harpocratesspeaks.com
    November 30, 2012

    Dear Mr. Saunders,

    My heart and best wishes go out to you, your family, and most especially, your daughter. If you happen to read this comment, there are a couple things I hope you will think about.

    I’m not certain how clinical trials are run in the U.K., but here in the U.S., charging subjects to participate is, although not unknown, very uncommon. Very specific rules apply. I’ve written more thoughts about this in this link.

    Second, since Dr. Buzrynski’s antineoplastons are not approved for use in the U.S. (or anywhere else), they are only available as part of a clinical trial. As a participant in a clinical trial, you and your daughter should have gone through an informed consent process in which the details of the specific study in which you are enrolling are explained to you and you are given a clinical trial consent form which details the trial aims, procedures, schedule, remuneration and so forth. Once you signed it, you should have been given a copy for your own records. This should all have taken place before any treatments began. If this did not happen, you should contact both Burzynski’s clinic and the Department of Health and Human Services’ Office for Human Research Protections immediately.

    I approach this from experience as a voting member of an institutional review board. My utmost concern is that people are not taken advantage of or put at unnecessary risk when it comes to medical procedures.

    Again, I wish you and your daughter all the best.

    Sincerely,
    Todd W.

    P.S. If you do, indeed, have a consent form for the trial, would you be willing to share it with me? My e-mail is todd (at) harpocratesspeaks (dot) com.

  83. #83 lilady
    November 30, 2012

    @ flip:

    “… Each and every poster is extraordinarily well-versed and educated in evidence-based medicine.

    You exaggerate. Some of us are not scientists or involved in medicine, but are humbly willing to learn.”

    You cherry-picked my post. :-) Here’s what I stated up thread:

    “Many of the posters on this blog are physicians, scientists, researchers and health care providers. Each and every poster is extraordinarily well-versed and educated in evidence-based medicine. Some of us are cancer survivors.”

    I consider the “RI Regulars”, including you,… are “extraordinarily well-versed and educated in evidence-based medicine.” :-)

  84. #84 flip
    December 1, 2012

    @Lilady

    My apologies. Somewhere my addled brain didn’t see the ‘many’ but read it as ‘all’…. wonder how that happened.

    And thanks for the compliment, but ‘well-versed and educated’ doesn’t really apply to me. I’m learning though ;)

  85. #85 Shay
    December 1, 2012

    Same here, flip. I’m a bioterrorism and public health planner, a job that is normally held by an RN with a background in epidemiology, not a retired jarhead with a background in WMD. RI is immensely valuable to me especially since I used my GI benefits to get a business degree. Wished I’d studied something more useful.

  86. #86 Shay
    December 1, 2012

    Wish I’d studied English, too (facepalm). Hate that lack of preview function.

  87. #87 flip
    December 2, 2012

    @Shay

    I’m currently wishing I had another degree to my name, in science. I’d love to do science communication if I could. I guess I just have to make do with this… (Incidentally I studied English, so no, it’s not as useful as you think ;) )

  88. [...] Amelia Saunders, a four-year-old girl from the U.K. who suffers from a large inoperable brainstem astrocytoma. As of October 4, they reportedly have raised £249,776 to pay for Burzynski’s treatments. [...]

  89. [...] blogosphere over the last two weeks is because, unfortunately, the Texas Medical Board (TMB) dropped its case against him. Basically, Burzynski got off on a [...]

  90. [...] before Thanksgiving, when it was announced that Stanislaw Burzynski got off on a technicality, I discussed as part of that post yet another patient whose parents had been lured by the promise [...]

  91. [...] see him as improving. Perhaps because they have been told so. This is unfathomably cruel, since the pattern of a tumor dying on the inside is more likely to be a sign that the tumor has outgrown i…. It turns out that an MRI in March confirmed that the tumor was in fact [...]

  92. [...] Yet another patient wasting money on Stanislaw Burzynski’s antineoplastons while Burzynski apparen… Share this:TwitterDiggGoogle +1TumblrFacebookEmailPrintLinkedInPinterestStumbleUponRedditLike this:LikeBe the first to like this. Categories: Random | Tags: morality, personal opinion, random | 1 Comment [...]

  93. [...] go after him for treatment decisions made by doctors he hired, I met an unfortunate girl named Amelia Saunders. Amelia had been diagnosed with a brain tumor back in February, specifically an inoperable grade 2 [...]

  94. [...] to Cayon, in the case of another patient, Amelia Saunders, Burzynski told the parents that the cysts forming in her brainstem tumor meant that the antineoplaston therapy was working. Unfortunately, [...]

  95. #95 prn
    my view
    January 14, 2013

    I’m plenty critical of BRI, and couldn’t justify BRI to myself if it were free, outside maybe some advanced brain cancers. But probably not, I suspect that there are now better experimental avenues there too.

    One thing I am not clear about, is whether the Philippics about BRI monthly expense are disproportionate. My metastatic CRC friends and acquintances are frequently running $30-$50k per month on conventional oncology, “chemo forever” until progression or burnout. Typically many are going down from what I consider inferior, standard care whether late stages or the post adjuvant followup from stages II-III.

    One conventional CRC case cost over $2 million in the first year or so, including post surgical sepses that I suspect were related to dogma. Some acquintances have spent more. I find all this outrageous – unnecessarily costly and relatively ineffective. Et tu, Brute?

  96. #96 LW
    January 14, 2013

    @prn: those “treated” by Burzynski are paying out large sums at best to be guinea pigs — moreover to be guinea pigs the results of whose suffering will never be published or used to benefit anyone else — and at worse to be deceived, lied to, and defrauded. This is not comparable, in my mind, to paying out equally large sums for treatment that has been proven to be of some use.

  97. [...] form of cancer as it progresses were seen, as evidence that her tumor was regressing. They were not. So let’s take a look at two cases frequently pointed out to me as Burzynski success stories: [...]

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