Dr. Stanislaw Burzynski strikes again

I was originally going to write about an amazing article that appeared in the NEJM today, but then, as happens all too often, something more compelling caught my eye. Unfortunately, it's compelling in exactly the wrong way. It's infuriating and saddening, all at the same time. It's also yet another example of how it's so very, very difficult to blog about these cases. Yes, unfortunately, it's Dr. Stanislaw Burzynski again in the news, and this time around he's managed to snare yet another unfortunate family into believing the hype about his "antineoplastons," his "personalized, gene-targeted therapy" that isn't, and his rebranding of an orphan drug. This time, the unfortunate family is all the way in New Zealand, and their sad story popped up on my Google alerts. Sadly, the reporting is incredibly credulous, with the headline screaming out, Hope for toddler with rare tumour:

Parents must raise $375,000 to take Jesse to US for radical treatment

Shane and Michelle Bessant say Jesse, 2, has an inoperable tumour on his brain stem and a new cancer therapy trial in the US is his only hope of survival.

Auckland parents Michelle and Shane Bessant are pouring everything they have into getting their 2-year-old son to the United States for experimental brain tumour treatment they see as his only chance of survival.

That's about $314,393 in U.S. dollars as of when I write this. In other words, it's a huge heap of change, out of the reach of most people. Another family is being victimized halfway around the world by Dr. Burzynski. They have a child with a fatal brain cancer. As I said before three and a half months ago, when I wrote about a similar case, that of Chiane Cloete in England, not having a child myself I can only imagine what that must be like, what the Bessants must be feeling, how desperate they must be to save their precious child. They're so desperate that they'd be willing to pay anything, to bear any burden, to do whatever it takes. In this, they're just like the family of Chiane Cloete We don't yet know what Cloete's fate has been. At least I haven't been able to find anything more recent than last December, which is when I first wrote about the case. I do not know whether Chiane is still alive or whether she's died. I do know that, as he has done so many times before, profited from the desperation of parents who went so far as to hold major fundraisers to try to obtain the funds necessary to have Burzynski treat their children, or, as I described it a couple of years ago, harnessing the generosity of kind-hearted strangers to pay for woo. It's a recurring pattern with Burzynski that appears to be playing itself out again with Jesse Bessant.

Unfortunately, so is the credulous variety of reporting that doesn't actually look into Burzynski's treatment and the lack of evidence for it. In the news story about Jesse, we're treated to a story structured in the common form of a quack testimonial. The parents are told that their child has a horrible disease that will kill him. Conventional doctors regretfully tell them that there is nothing they can do that has a high chance of saving his life but that they do recommend chemotherapy. Then...the parents discover the Brave Maverick Doctor, who offers them hope where conventional physicians cannot. His patter is convincing because he sounds very science-y and presents a story that sounds compelling on the surface. But most of all, his patter is convincing because, infused with the love of their child, these parents want to save him at all costs. That credulity is understandable in the parents of a child dying of cancer. It's not so understandable in a reporter:

Then a family member alerted them to a cancer treatment facility in Houston called the Burzynski Clinic which is carrying out trials of a new therapy.

The treatment is called antineoplaston therapy, which has nearly completed its second stage of Food and Drug Administration-approved trials.

It involves injecting patients with synthetic chemicals called antineoplastons, intended to protect the body from disease.

"We were just gobsmacked," Mrs Bessant said.

"People with no hope, who had high-grade tumours and had been told to go to hospice were being treated there and were surviving.

Except that there isn't good evidence that they were or are. As I've described before, the testimonials that Burzynski presents to support his therapy are not particularly convincing. For all his claims of such fantastic results in clinical trials, the fact remains that Burzynski's therapy hasn't passed phase II clinical trials, and the results of these trials that I've seen reported are not particularly impressive or convincing. It's true that Burzynski has a phase III clinical trial registered, but, the last time I checked, Burzynski's trial was not open to accrual. So what we're left with is a series of patients giving testimonials on the Internet because they underwent Dr. Burzynski's treatment and lived longer than their doctors told them to expect. As I've noted time and time again, dead patients don't give testimonials, although occasionally we do see evidence of a more typical course. In fact, I wrote about just such a patient a couple of weeks ago, a child named Brynlin Sanders, who also had brainstem glioma. Brynlin had an inoperable brainstem glioma, underwent treatment at the Burzynski Clinic, and died about three months after diagnosis. Like the Bessants, the Sanders family tried to raise money to pay for the treatment, although their treatment, for whatever reason, "only" ran $50,000, probably because Brynlin didn't live long enough for Burzynski to get more. Meanwhile, here's what the Bessants are doing to try to raise the money:

Speedway-mad Jesse Bessant, 2, had a blast watching the cars while other fans dug deep into their pockets to help get the potentially life-saving treatment he needs.

At 22 months old the Browns Bay resident was diagnosed with a rare brain stem tumour.

He is the first known case in New Zealand.

There is nothing that can be done for him here and Jesse's family needs to raise $375,000 to get him treatment in Texas.

A fundraising event was held at the Rosebank Speedway on January 29.

Jesse's mum Michelle says they raised $953 by walking around the crowds with buckets and asking for donations.

"Almost everyone donated," she says.

Like the parents of Chiane Cloete, Brynlin Sanders, Billie Bainbridge, and a host of other highly unfortunate children suffering from inoperable brain tumors, Jesse's parents are trying their best to do what they think is right for their child. Their love for their son has been channeled into a single-minded pursuit of the means to reach what they think to be a cure, and they're doing whatever is necessary to get access to that cure, whatever the cost. What parents wouldn't do that? According to the article, they need $100,000 to get Jesse to Texas and begin the first stage of his treatments at the Burzynski Clinic, of which they appear to have raised approximately $25,000, if their fundraiser page is any indication. They've done all that work, and they're still only one-quarter of the way to the first milestone. It's maddening because Dr. Burzynski's therapy, such as it is, is certainly not better than anything offered in New Zealand, but his hype has convinced the Bessants that it is.

For all the similarities between Jesse and the other children I've mentioned, it should be noted that there is at least one big difference between Jesse and Brynlin, their both having brainstem tumors notwithstanding. Unlike Brynlin, Jesse is reported to have a tumor known as a ganglioglioma. I was unfamiliar with this tumor type, but its name suggested that it was probably not malignant. So I looked it up. According to the St. Jude's website, gangliogliomas are "rare, benign tumors" that arise from ganglia-type cells and are also known as gangliocytomas and ganglioneuromas. The prognosis is described thusly:

Following a complete resection of the tumor, chances of long-term survival are near 100 percent. If the surgeon could not remove the entire tumor, sometimes radiation therapy is necessary. The prognosis still remains very high, 80-90 percent.

Malignant progression of ganglioglioma can happen, but it is rare, and even benign tumors like gangliogliomas can regrow after being surgically resected if they are not completely resected. In any case, this is how the Bessants describe their child's plight immediately after they finally had a diagnosis:

Everything moved on very quicky from here, we felt like we were being shuffled out of the room, sorry Bessant family we can't do anything for your son, thank you for your time, good luck and good bye. We hadn't even had time to digest Jesse's diagnosis when we found ourselves meeting Jesse's Oncologist and discussing the merits of chemotherapy, brain shunts, hydrocephalus. The Oncologist did his best to explain the tumour to us, working in Jesse's favour was that Gangliogliomas can be very slow growing low grade tumours, what was not working in Jesse's favour was the location of the tumour in the brain stem, he made it very clear that chemotherpay and radiation treatment had shown no benefit in treating these Ganglioglioma's overseas. Our best option would be to adopt a "wait and watch" approach, to monitor the tumour growth and only intervene if absolutely necessary or when Jesse's condition deteriorates. Surgery was still out of the question due to the high risk of neurological damage, disability and fatality.

One notes that Jesse's case had puzzled his doctors for a long time before the diagnosis was finally made. There is a long description of his symptoms, which apparently began shortly after birth but got worse a few months ago, the long and winding workup, and how even after the initial biopsy the doctors weren't sure if this was a neoplastic process or an infectious process. Finally, as is often the case with rare tumors, it took consultations with experts overseas examining the biopsy to come to a definitive diagnosis. Most hospitals just don't have the expertise to diagnose such rare tumors.

One thing that I need to emphasize here is that just because a tumor is "benign" doesn't mean it can't cause serious problems or even kill. As with real estate, location is key. If a "benign" tumor is growing in a location where its growth can impinge on vital structures (like the brainstem), erode into huge blood vessels (like the aorta), or obstruct vital structures (such as the trachea), its "malignant" or "benign" nature becomes almost a secondary consideration. In other words, in the wrong location a benign tumor can kill just as readily as a malignant tumor if it's inoperable. In any case, while I was initially baffled by the recommendations of the oncologists in New Zealand, their reasoning became more clear when I looked up old medical school information about this tumor type and realized it is a benign tumor that's generally slow-growing. Such tumors rarely respond to chemotherapy, although, depending upon the tumor type and how rapidly it's growing, sometimes radiation will shrink them. The problem with such slow-growing benign tumors, of course, is that the efficacy of chemotherapy and radiation depends up the tumor having a higher growth rate that the cells in the surrounding tissue. The greater the difference in proliferation, the more toxic such treatments are to the tumor compared to the surrounding tissue. Benign tumors like this tend not to be growing much faster than the cells in the surrounding tissue. Also, because they are not fully malignant, they also tend not to lack as much of the DNA repair machinery that malignant tumors do, and it is defects in that machinery that contribute to the sensitivity of malignant cells to DNA-damaging agents, such as radiation and some forms of chemotherapy.

Once again, as I've pointed out before, writing a post like this is very difficult. It's quite possible that the Bessants might see it, given that I've linked to their fundraiser page and given that it's not uncommon for Burzynski parents to Google their child's name in order to see what sort of news coverage they're garnishing. I almost didn't write this, given that I've written about Burzynski's luring in desperate parents of suffering children facing a terminal illness on multiple occasions and sometimes received criticism that I'm somehow "kicking them when they're down." Such is not my intent. Such has never been my intent. However, it is my intent to warn others.

Burzynski's treatments are unproven and most likely do not work. At the very best, his antineoplastons might have modest antitumor effects, but only at incredibly high doses. Moreover, as I've pointed out time and time again, Burzynski does use chemotherapy. He uses a lot of it. Moreover, his "personalized gene-targeted cancer therapy" is nothing more than using a commercial gene test to profile the tumor, then incompetently guessing at what targeted therapies might work based on that profile. It's nothing more than throwing everything but the kitchen sink at the tumor, using cocktails of extremely expensive targeted therapies in combinations that have never been tested and might well result in synergistic toxicity. Meanwhile, Burzynski's antineoplaston therapy has "evolved" into nothing more than the repackaging of an orphan drug as a cancer therapy. Meanwhile, because he is not allowed to use antineoplastons outside of the context of a clinical trial, he has a bunch of useless clinical trials that never end and rarely see print in a peer-reviewed journal indexed on Medline to which he signs up patients and charges them for the drug. This is, as I've pointed out before, generally frowned upon. Patients on clinical trials are not supposed to pay for the experimental drug or any treatments that are not routine standard-of-care. Finally, when bloggers start criticizing Burzynski for his activities, he hires hamfisted and incompetent reputation enforcers to threaten them with legal action, while on various discussion forums Burzynski disciples will swarm in like flying monkeys to complain to admins that criticism of Burzynski's activities constitutes "abuse." In addition, recently Burzynski has been sued for misrepresenting his clinical trials. That's all on top of the hearing in front of the Texas Medical Board scheduled for April, in which he could very well lose his medical license.

I know the Bessants are suffering. We all hate to see a child suffer, and the parents among us can't even imagine what they're going through. The death of a child is generally one of the most painful events any parent can go through. Our children are supposed to outlive us. Certainly, they are not supposed to die after only two or three years on this earth. However, as hard as it is to say, I hope that the Bessants will realize that Burzynski can't save Jesse any more than the doctors in New Zealand can, but he can extract huge sums of money from them and put Jesse through hell before he finally dies. As hard as it is to accept, it is likely that the best option for Jesse is exactly what his doctors have said, as unacceptable as that might be. The only other option I can think of that might hold out some hope would be to seek out Dr. Charles Teo in Australia. Complete resection of Jesse's tumor is the only hope he has to survive, and the surgeons in New Zealand consider it unresectable. Dr. Teo might--might--be able to resect this tumor where other surgeons cannot. Certainly, if the Bessants are going to raise hundreds of thousands of dollars to try to save Jesse, that money would be much better spent on a treatment that might actually save Jesse. Burzynski's antineplastons are not that treatment.

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As much as I try, even when I'm on vacation in an undisclosed warm location near a beach (actually, our hotel room has a balcony overlooking the ocean), occasionally news finds its way to me. Part of it is because I still get the odd e-mail or two, and I do check my e-mail every so often on…

you go Vicki! you are absolutely correct in every assertion, especially the freedom FROM medical martinets, pharma whores and FDA rotating door shills.

buh-bye.

some day we will have other choices. AND MUCH BETTER HEALTH.

you go Vicki! you are absolutely correct in every assertion, especially the freedom FROM medical martinets, pharma whores and FDA rotating door shills.

buh-bye.

some day we will have other choices. AND MUCH BETTER HEALTH.

katie, how does giving lots a cash to a quack lead to much better health? Be specific by citing the papers with the results of the Phase 3 clinical trials by Burzynski.

you don't get to frame this.

i'll use my frame, thanks.

and my frame is based on personal freedom to make considered adult choices about my body. my frame is based on my learned-distrust of FDA and AMA medicine.

better without it, really. public sanitation is good, yes, but the romans had that.

and patriarchal medicine has been founded in error and reductionism and cares nothing for the precautionary principle.

i would welcome your advice, your opinions, even your experience, but your mandates and criminalizations: no thanks.

better without it.

So you prefer demonstrated quacks and frauds to those with some semblance of oversight? Real smart.

katie is demonstrating the inverse of genius.

Why do I have a feeling that katie doesn't understand what the precautionary principle even means?

Protip: Burzynski is the one violating the precautionary principle.

"medical martinets, pharma whores, and patriarchal medicine"

New insults I have not heard before! Now "and patriarchal medicine " throws me. Is there a "feminist medicine"

By Kelly M Bray (not verified) on 09 May 2012 #permalink

Patriarchal medicine = The doctor knows best. The patient shouldn't ask questions, just do as they're told.

No particular connection or opposition to feminism; it's a gender-neutral concept.

@kate

Thanks for that unabashed display of pure ignorance and stupidity. I am having a good laugh at your idiocy.

Patriarchal medicine = The doctor knows best. The patient shouldn't ask questions, just do as they're told.

No particular connection or opposition to feminism; it's a gender-neutral concept.

I'm certainly familiar with it. Alties are fond of their almighty wise guru and don't take kindly to honest questions. It's seen as a challenge to the guru's absolute authority.

Indeed, I would want nothing to do with any of that crap that the other "Vicki" is posting. I had missed that particular outbreak of nonsense on this thread by being off-line at just the wrong, or right, time, and it was a bit disconcerting to see what looked at first like people yelling at me. But that's what comes of posting with just a first name, I guess.

Katie,
Nobody who has ever sent me $100,000 has ever had a single health problem.

Please consider that when deciding where to spend your money.

By Mephistopheles… (not verified) on 09 May 2012 #permalink

and my frame is based on personal freedom to make considered adult choices about my body.

It isn't a question of frame: it's a question of facts versus falsehood. One can only make a considered adult choice when that choice is informed by fact, after all. and the bottom line is that despite a couple of decades of supposed 'clinical trails' Burzynski's offered zero evidence his antineoplastin therapy works--lots of cherry picked testimonials maybe, but that simply isn't the same thing.

And we're not wrong to point this out.

In the obituary, the family of Laura Hofsess is still asking for more money to send Burzynaski so he can continue his "research".

If I had donated money to one of these fundraisers for Stan's witchcraft I'd be tempted to ask for my money back.

By Marc Stephens … (not verified) on 09 May 2012 #permalink

Katie:

Medical quackery is fraud.

Fraud is a violation of the property rights of the victims. In the case of medical quackery as fraud, it is also a violation of the victims' rights to person.

In short, this has nothing to do with health freedom. It has to do with unscrupulous criminals charlatans like Burzynski fleecing patients for tens or hundreds of thousands of dollars.

it's spring and the property rights are blooming.

especially the property rights of the medical martinets to my property in my money and my property in my body.

how do we say this more clearly:

You Do Not Have A Right In My Body. None.

I have all the rights in my body. All.

how do we say this more clearly

katie, I wish you would...

I have no idea what your little message is all about. Try English or French next time: I speak both those languages.

By Marc Stephens … (not verified) on 09 May 2012 #permalink

I wanted to help katie, I really did. I was going to explain this using an analogy to a used car with a turned back odometer, or or buying a fake Warhol painting. But then I realized she already bought one. Too late.

By Kelly M Bray (not verified) on 09 May 2012 #permalink

I have all the rights in my body. All.

Have fun with them. In the meantime, it seems as though there are others whose rights-laden bodies have taken a head to pointing out what's actually going on with Burzynski's brand of Health Freedom, in which you better find some people to give you money to give to me, and stop at the pharmacy with my initials on it once you're done.

156
it's spring and the property rights are blooming.

especially the property rights of the medical martinets to my property in my money and my property in my body.

how do we say this more clearly:

You Do Not Have A Right In My Body. None.

I have all the rights in my body. All.

Katie, there are goals and there are methods.

If you assert to us that no one except you has a right to determine the goals you want to achieve, for you and for your body, you'd be on quite solid ground.

Problem is, you go farther than that and assert that this gives you the right to determine what methods will and will not work for the goals you want to achieve. Absolutely no one has that "right," not even the grand hierarch of the "medical martinet" hierarchy, because it's reality that determines what works in reality, not any human being.

If you tell us you want to fly from the West Coast to the East, to get a good look at what the land looks like from far above, who are we to stop you? It's your right to set that goal. If you tell us you're going to do it by jumping off a tall building with a feather in each hand and flapping your arms real hard, don't tell us that you have the "right" to determine that this will successfully give you flight. Doesn't work that way. And all the whining in the world about "rights" is not an adequate answer to what we've been telling you about Burzynski, that the methods he claims "beat cancer" don't actually do anything but beat up the patient's pocketbook.

By Antaeus Feldspar (not verified) on 10 May 2012 #permalink

Katie, you're atacking a straw man. No one here is telling you that you don't have "all rights in your body".

The fact you have all rights in your body, however, doesn't mean that the FDA, the Texas medical board, etc., do not have both the responsibility and authority to regulate and where appropriate hold Burzynski or others liable for professional misconduct.

It doesn't mean that Bursynski's claims re: the efficacy of antineoplastin therapy cannot be questioned and where appropriate rebutted.

And it certainly doesn't somehow make charging desparate patients exorbitant amounts to participate in clinical trials of an unproven therapy ethical.

@ Katie:

Nobody's talking about limiting your rights in any way. We're talking about the fact that BURZYNSKI doesn't have the right to commit fraud and malpractice.

hello again,

http://www.wakingtimes.com/2012/05/12/mainstream-science-another-religi… ;

i think this is largely accurate as to how i see your predicament, although it is not particularly satisfying as a map.

and i would like to help you out of your quagmire of error and destructiveness, but i don't see a path from where i am to where you are. somehow you must move off your pyramid, and i give you my hope that you can and do.

a gentle way to climb off is to hunt for new myths. i like these myths: the gnostic teachings of john lash over at metahistory.org

also, the cleary translations of the *early* taoist books may be useful.

finally, i'll share with you the only two facts of which i am certain:
1. i have a body.
2. i have a life.

take care.

One more fact of which we are certain, katie: you're a friggin' idiot.

(Being able to construct a sentence in readable English might help your case, but I doubt it).

Aw Shay, now her chakras will be out of whack and she will have to burn herbs and see her healer to get over that comment ;)
Personally, I hate that it always seems to be women blabbing this sh*t all over the place. (I haven't forgotten the men but seriously, the believers do tend to be women).

Agashem -- I know. It makes me blush for my gender.

Did anyone notice the article katie linked to was written in conjunction with a "David Icke writing contest"?

(Who would want to win that contest?)

Doesn't that qualify as a Scopie? David Icke, whale.to, Mike Adams, et al?

And the website itself, WakingNews.com is another crackpot conspiracy cesspool of garbage a la whale.to or EducateYourself.com. It makes Natural News look moderate.

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

i think this is largely accurate as to how i see your predicament,

I was unaware I had a predicament.

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

i like these myths: the gnostic teachings of john lash over at metahistory.org

Yes, it's the Archons. The way out of "quagmire of error and destructiveness" is space aliens. And let us not forget the Aeons, "mass-free, high-porosity current[s] of stellar plasma." The "world above" is in the "galactic core." Nice work, Katie. Excellent recommendation.

The article was very informative but I think that Jesse is a boy.

By Patricia Weinberg (not verified) on 02 Mar 2012 #permalink

What saddens & sickens me about this is Dr. B charging these outrageous sums - when real clinical trials are basically free.....what gives him this special dispensation to go around charging hundreds of thousands of dollars to desperate families? If his treatment is so "revolutionary" and "successful" why isn't he doing this for free? Wouldn't that just stick in "Big Cancer's" craw that he's curing all these people for little or no money?

Hi Mate

I have read many of your blog posts on this and similar matters and thought you may be able to help me.

Have you, or anybody else, ever seen an invoice from Burzynski or indeed any other "paying xxx hundred thousand dollars to go to america" cases?

I ask because such a charity has recently been active on twitter over the heartbreaking story of a daughter, an incurable cancer, a drug trial and a $450k bill to attend "Children's Hospital of Philadelphia". On some basic web searches it appears that this institute do NOT charge for their trials and I can find no exemptions listed.

I am not trying to accuse anybody of anything, just interested whther anybody has ever proven where the charitable funds are going. Simultaneously though I do not doubt that Burzynski would deny charging if that were the case.

Just an idea that I dont really know who to ask about.

Cheers and keep on blogging

M

By Martin Nash (not verified) on 02 Mar 2012 #permalink

I check Chiane's dad's blog occasionally - the last entry says that Chiane has survived her latest round of chemo (Thiotepa, undertaken in order to give her time to get to the Burzynski 'clinic') and is at home awaiting the second round.

Moreover, as I've pointed out time and time again, Burzynski does use chemotherapy. He uses a lot of it.

No, no, no. Didn't you read the news article? It's not chemotherapy. It "involves injecting patients with synthetic chemicals called antineoplastons, intended to protect the body from disease."

BIG difference.

By Marry Me, Mindy (not verified) on 02 Mar 2012 #permalink

Dr. Charles Teo? Hm. I haven't heard of him, and now I'm curious why he might be able to do it where others wouldn't.

By King of Ferrets (not verified) on 02 Mar 2012 #permalink

Awful.

Is this the kind of tumor that might be resectable by a very, very skilled surgeon using something like a gamma knife?

Will this (alleged) charlatan never go away? I hope there is a special place reserved for him in hell.

By nigel thompson (not verified) on 02 Mar 2012 #permalink

@King of Ferrets, #6:
Charles Teo is a very prominent pediatric neurosurgeon who practices in Sydney and teaches in the US. Orac is probably recommending him because, while there are undoubtedly fine and dedicated surgeons in New Zealand, it is unlikely that they will have either the experience or the support that a specialist surgeon in much-larger Australia will have. In American terms, it's something like going from Vermont to New York City, or Idaho to Los Angeles, for advanced or highly-specialized treatment.

By Old Rockin' Dave (not verified) on 02 Mar 2012 #permalink

OT- but seriously, can there be any more craziness and irresponsibility in Texas?**

@ NaturalNews today, Mike Adams asks:"When do we get to abort all the mad scientists?"
"If we kill them at age 55, it's not really murder, remember. It's just a really drawn-out post-partum abortion." A disclaimer follows.
( He might be trying to wrangle himself some cred amongst his more conservative followers by saying 'abortion' several times.What's next- nonoxynol murders pre-foetuses?)

** Dr B, AJW, Mikey. Probably others.

By Denice Walter (not verified) on 02 Mar 2012 #permalink

Could those comments from mad Mike be construed as incitement to violence? Isn't he, after all, suggesting, then excusing murder?

@ King of Ferrets:

Orac has discussed Teo previously:

http://scienceblogs.com/insolence/2011/12/on_leaping_to_conclusions.php

The relevant point here is that he's more willing to push the boundaries of "unresectable" than most neurosurgeons, either due to arrogance or genuinely greater skill. If the parents want to try and he'll do it, the possibility exists that he'd pull it off.

The possibility also exists that the child would die due to pushing the limits this way, but since it might actually work it's a superior option to Burzynski.

There is this deep feeling of Déjà Vu... The same press releases, the same denials (no, it's not chemo, and it's not toxic at all), the same empty promises...
The same "phase 2 ongoing, confirmed results anytime soon", for 25 years straight.
It's maddening. Like shouting at a wall of brick.

@ Martin Nash

I am not trying to accuse anybody of anything, just interested whther anybody has ever proven where the charitable funds are going.

Well, according to the press releases (plural, because it's not such this child, but plenty more - see Orac's links):

There is nothing that can be done for him here and Jesse's family needs to raise $375,000 to get him treatment in Texas.

Someone is collecting a large sum of money for the child to go to this clinic. I doubt the plane tickets and the hotel bill for the child and his/her parents will account for more than 10% of those 300 thousands dollars.
If it's not the good doctor who collects the extra money, you may want to let him know, because someone is ripping off his patients (again, plural, it's not just one case) for the privilege of joining his "trials" (which, ethically, should be free).
If he doesn't know that his patients' families are raising so much money, he should read more newspapers, it's not as if the calls for donation are kept secret.

By Heliantus (not verified) on 02 Mar 2012 #permalink

@Heliantus

I basically have very little doubt that Burzynski is taking the money. His general love for publicity would make him refute these claims if they were not true.

But from the UK, a lot of people raise a lot of money to send kids to the US for treatment and not all are with Burzynski. As mentioned, a recent one that came to my attention is a girl raising 450k to go the Children's Hospital of Philadelphia, to be a part of this trial: http://clinicaltrials.gov/ct2/show/NCT01163383.

The hospital's own website suggest that no costs are associated with the trials.

Now, I am not a medical, or research professional, just a humble IT monkey. I was hoping someone with more knowledge may know whether such costs may be realistic.

I certainly don't wanna piss on anybody's pain or start any trouble just curious.

Cheers

By Martin Nash (not verified) on 02 Mar 2012 #permalink

Denise @11: this will probably have been in reaction to a piece I saw reported in our local paper (the NZ Herald) yesterday, wherein a number of medical ethicists have apparently argued that parents should be able to have newborns killed if they were "deformed" in some way. The explanation given in the news story was that the ethicists believed this to be no different to abortion as neither foetus nor newborn is (their word, not mine) capable of conceptualising their life in such a way that the loss of such life would be significant to them. I found the whole thing highly distasteful. No doubt MA feels he is taking the 'argument' to its 'logical' conclusion.

I'm giving a talk tomorrow on evidence based medicine. I intend to lead off with the Observer article of last November. I will now incorporate the New Zealand case.

In the process of investigating Burzynski I compiled a page of selected links. Of some interest is the physical location of the clinic. The building is impressive at the Burzynski Clinic web site, but it appears to be an office building and it's not clear how much floor space the clinic actually occupies. Burzynski appears to be president of a (mail order?) pharmacy which operates out of the same address.

It's clear that the government will never be able to convict him of anything due to heart rending testimonials from grateful patients.

wherein a number of medical ethicists have apparently argued that parents should be able to have newborns killed if they were "deformed" in some way. The explanation given in the news story was that the ethicists believed this to be no different to abortion as neither foetus nor newborn is (their word, not mine) capable of conceptualising their life in such a way that the loss of such life would be significant to them. I found the whole thing highly distasteful.

A pair of Italian / Australian academics recently published a paper to that effect (one suspects that they are ex-Catholics swinging to the other extreme), and the conservative-Catholic reps on the Internet have been collectively hyper-ventilating and working themselves into a crescendo of indignation. Moral bankruptcy! Symptomatic of moral liberalism! That kind of thing.
That's probably what brought it to the Herald's attention (and Mike Adams).

I'm not entirely sure of the raison d'etre for 'medical ethicist' as a vocational niche. I mean, if you want to know whether a given medical procedure is acceptable to society, you could ask society... rather than asking some theorists whether, according to their personal philosophies and religions, it should be acceptable to society.

By herr doktor bimler (not verified) on 02 Mar 2012 #permalink

One thing that I need to emphasize here is that just because a tumor is "benign" doesn't mean it can't cause serious problems or even kill.

Very true. I still miss Hamlet, a big standard poodle. My parents got him the year I started college; he died in 2004. He was put to sleep due to severely declining health that had finally been traced to a benign tumor in his aorta. The location of the tumor made it impossible to remove it without killing him; in humans, an attempt would likely be made using a heart-lung machine, but dogs don't fare well on those, and, well, he was 11 and suffering congestive heart failure. Quite likely he wouldn't survive such a surgery anyway, even if we could've found a vet willing to try.

This family's case saddens me, because I fear they are very much misunderstanding what the doctors told them. They're definitely misunderstanding Burzynski, and I have little doubt that if they raise the funds and the boy's tumor doesn't grow a lot or at all (which, since watchful waiting was recommended by his oncologists, seems a reasonable outcome), I anticipate Burzynski will take credit for that. And this family will be a lot poorer, and Burzynski a lot richer.

I had to grimace at the "nearly through phase II trials". This usage is comparable to saying the Moller Skycar is "nearly in production".

By Calli Arcale (not verified) on 02 Mar 2012 #permalink

Good to see another story about the old quack, it is almost a hobby following
the old coot. It would be funny if it wasn't so sad.

I wish I could get well meaning charities to raise hundreds of thousand of dollars
for the privilage of doing business with me. You gotta had it to the guy, if nothing
else he is a great salesman

By mark davidson (not verified) on 02 Mar 2012 #permalink

Anyone who says Dr b is ripping ppl off seriously needs to do their research. My brothers fiance has spent 60k so far.. and her tumor has shrunk 77%. She is only on antineoplastens. It's true he uses chemo drugs but only if the patient needs it, and in low doses..

(a) Antineoplastons ARE chemotherapy.
(b) If he's actually getting such results, he's still unethically ripping people off by charging them for clinical trials. AND killing other people in droves by not bothering to publish them.

IOW, even if we accept your statement as accurate, it makes Burzynski's activities even WORSE.

While I appreciate everyone is entitled to their own opinion I would appreciate it if you would remove your blog link to my sons name. As parents we are going through the toughest most heartbreaking time in our lives, something we do not wish any other family to ever go through. We are not desperate parents who have gone into this blindly, we have done an immense amount of research on Dr Burzynski including many many cancer treatments available. We have done the research and have chosen a treatment that we feel is in the best interest of our son. It is very upsetting to read your comments & linking them to my son's name.

By Michelle Bessant (not verified) on 02 Mar 2012 #permalink

And for those who call Dr burzynski a quack.. try looking back 30 yrs when Dr b was lauded by the medical community for his antineoplastens. Yes the AMA and fda were on his side.. until they done the dirty on him. Now they try to put him away...

They were considered promising until they were shown to not work. Staying 30 years in the past despite new evidence is in no way a recommendation.

Michelle,
I'm curious as to what specifically convinced you to commit to Burzynski's treatment as opposed to others after doing an "immense amount of research." Is there a particular article or reference that really convinced you to go that route? I'm genuinely curious as to how the decision was made.

It is very upsetting to read your comments & linking them to my son's name.

I'm sure it is very upsetting to discover that the doctor you thought you could trust is ripping you off. But don't blame the messenger.

And if you don't want people talking about your son, then keep his name out of the newspaper. You made the story public. Sorry that not everyone likes it.

By Marry Me, Mindy (not verified) on 02 Mar 2012 #permalink

So.. clinical trials cost millions. For usual pharma companies they get subsidies and money from sponsors. Burzynski is getti.g none of this. He has to charge money.. he has no choice, hopefully after phase 3 trials ppl can get his life saving treatment for less.. gd luck Michelle! Ppl should have the choice to what treatment they get.

to Marry Me Mindy, please don't put words in my mouth, I won't stoop down to your level. I hope you feel very proud of yourself.

tobias,

You CANNOT charge money for entrance into a clinical trial. It's completely and utterly unethical and unscientific. There are many funding sources available for clinical trials if one can present a reasonable amount of preliminary data suggesting that a clinical trial would in fact be useful for patients and the scientific community. Why has Burzynski not sought out funding in the form of grants if he is so convinced that his treatment is effective and beneficial for the public at large?

There are other sources of funding. The NIH, for instance.

And that's not even mentioning the annoying little fact that Buryznski is really just LYING when he claims to be doing clinical trials. If he were telling the truth, he'd be publishing the results.

Critical analysis on whether the patients are adequately informed; what tests of the original one trick pony, "antineoplasteons", are still appropriate; and the toxicity and any known inefficacy of the molecular target cocktails of approved drugs seem to me to be Orac's most legit discussion. Accountability without distraint, interference and bias has been a big fundamental problem in the Burzynski saga.

The exceptional criticism on high oncology charges, seems misfocused and hypocritical. US oncology strikes me as typically overpriced and historically, greatly underperforming. Online I see high volumes of mCRC patients race through $1/5 - 1 million per year with unsatisfactory stats all the time with approved treatments.

Ultimately patients with fatal diseases should have a right to choose. How to fairly and individually allocate patients' paid in insurance funds for experimental medicine is a far more interesting question to me. Current insurance policies tend to shaft attempts at even the most intelligent choices. Unmitigated paternalism strikes me as depriving people of their basic rights, and potentially their lives.

As for pay-for-play experimental medicine, restricting self pay patients beyond informative warning strikes me as outrageous. The underlying tones here often smack of distraint and interference.

Michelle,

I sincerely hope you take Orac's suggestion to contact Dr Charles Teo seriously.

I understand that you are trying to do what's best for your son, and I wish you strength in the times ahead.

@prn

The criticism of the prices he's charging are in large part because he forces patients to purchase prescriptions through his pharmacy at prices significantly higher than what patients would pay elsewhere for the same chemotherapy drugs.

Ppl should have the choice to what treatment they get.

And they should be fully informed in making such choices, something that the Burzynski rah-rah brigade that oozes from the woodwork seemingly at every opportunity actively tries to prevent.

"Orac",

Thank you for covering this in depth - the effort is appreciated here. A science-writing colleage, Siouxsie Wiles, wrote about this earlier at sciblogs.co.nz and I followed her effort with one aimed more at the journalism (Iâm glad youâve called out the journalism too, at least now I feel Iâm not alone in saying it!). Like Siouxsie have a letter to the editor drafted; other New Zealanders might like to try the same. Iâve linked readers to your post in the hope that it might get wider attention in New Zealand, not that I have many readersâ¦

Regards Chiane Cloete, there is an update at 29th February, followed by another at March 1st:

http://helpmefightcancer.co.uk/2012/03/01/chiane-diary-update-29-feb-10…

Their twitter feed is probably a good place to watch for updates: https://twitter.com/#!/chianecloete

to DMcIlroy: thank you, we have already been in contact with Dr Teo, please understand we have done our due diligence as any parent would, we have researched & considered all our options.

Iâve a comment in moderation with links to updates on the Chiane Cloete story - two links in the comment so itâs hit the moderation queue!

I, too, am curious about how Michelle and her family came to the decision to employ Dr. Burzynski. As an adult CF patient, I do my due diligence as well regarding the ongoing decline in my own health whenever we have to go to "the next level" to keep me alive (which, lately, has been unnervingly frequent). But unproven therapies are unproven therapies. If I'm going to sink my financial ship trying to stay alive during the coming years, the treatment regimen better damn well have a proven, high success rate.

we have researched & considered all our options.

But not adequately or accurately.

Todd@39
Thanks. I think that information about SB's "company store" should be available to his patients upfront. However, in general, there are a number of pharmaceutical market access issues for patients and grossly overpriced medicines in the US. e.g. a 2 cent tablet of low tech leucovorin, a type of folate long known, is typically available for $20-25 in the US because of other market restrictions.

#24

She is only on antineoplastens. It's true he uses chemo drugs but only if the patient needs it

What part of "injecting patients with synthetic chemicals called antineoplastons" didn't you understand?

Without fail, each time Burzynski's name comes up here, a Burzynski follower (always the same tone & grammar) turns up with it's illiterate droppings.

You all the "Burzynski Patient Group".

Burzynski Patient Group states that:

Its purpose is to collect and disseminate testimonials from some of the past and present patients of Dr. Burzynski whose cancers were successfully treated using his advanced cancer treatment.

Anyone ever seen one of these fan/shill type groups fronting public relations for an authentic clinical trial?

By Sauceress (not verified) on 02 Mar 2012 #permalink

we have researched & considered all our options...
It is very upsetting to read your comments & linking them to my son's name.

Surely the people whose donations you solicit are entitled to information about the extent of Burzynski's chicanery.

By herr doktor bimler (not verified) on 02 Mar 2012 #permalink

herr doktor bimler (@47): âSurely the people whose donations you solicit are entitled to information about the extent of Burzynski's chicanery.â

On a similar note I feel journalists, & the editors that accept their articles, should lay out what is known especially if they are to include details of how readers can support an appeal.

Something else I noticed a while back on The Burzynski Clinic's Facebook page, (back when Marc Stephens was running around threatening science-based bloggers who were shining the light of evidence on Burzynski's operation), was that Burzynski was big on constantly playing the religious card in his comments.

I can't seem to find that Facebook page now, but one the comments by Burzynski that was memorable entailed his thanking God for giving him the ability to discover antineoplastons and their miraculous properties.

I thought at the time that the framing tone of his comment smacked of narcissism.

Most of the other comments also adopted more of a religious tone than anything else, nearly every one of them at least mentioning God, with most of those waxing lyrical on the subject.
Honestly, that page read more like a commentary on a religious worship site.

So I often wonder how much Burzynski's continual reaffirmation of his status as a "true believer" and "one of the chosen" may also be a factor in suckering clients into his "clinical trials".

May also explain the cult like worship we see from his "followers".

Goes back to:
Most people are more inclined to believe whatever it is that they want to believe.

By Sauceress (not verified) on 02 Mar 2012 #permalink

This will be my last post, I do not appreciate receiving personal emails with attacks on myself & my son, the language used was absolutely disgusting, our situation is already stressful enough we certainly don't need to be subjected to a nasty email campaign as well. Nice blog you have here, you must be so proud of your members.

Michelle Bessant, if you are already planning to come to the USA to treat Jesse, I beg you to look into St. Jude's Children's Research Hospital in Memphis, Tennessee instead of the Burzynski clinic.

If they find ANY kind of clinical trial they can enroll your son in, St. Jude will pay for practically everything-- they even put us up in a hotel while my brother was undergoing treatment! You needn't be out a fortune to treat your child!

By Melissa G (not verified) on 02 Mar 2012 #permalink

I do not appreciate receiving personal emails with attacks on myself & my son, the language used was absolutely disgusting, our situation is already stressful enough we certainly don't need to be subjected to a nasty email campaign as well. Nice blog you have here, you must be so proud of your members.

I wouldn't be too sure that those emails are coming from the regulars of this blog Michelle. I know most of the regular commenters here would condemn such an attack in the strongest possible terms. Myself included. You'll also notice that the use of disgusting language is certainly not the norm here.

I think it's highly possible that the emails you are receiving are coming from those trying to discredit Orac and the regular contributors here.

It wouldn't be the first time and would be reminiscent of the lack of credibility we've witnessed so often from Burzynski's troll brigade.

By Sauceress (not verified) on 02 Mar 2012 #permalink

p.s.
Michelle, if you truly believe that any of the email attacks you are receiving are emanating from those posting here,(excluding the disingenuous trolls), I'm sure we'd all love to know which posters are sending them.

By Sauceress (not verified) on 02 Mar 2012 #permalink

I just heard from my pals at SciBlogs (the New Zealand science & skepticism site)

Siouxie Wiles () Infectious Thoughts wrote http://sciblogs.co.nz/infectious-thoughts/2012/03/02/nz-herald-does-no-research-helps-spread-false-hope-again/. The post is her letter to the editor.

Grant Jacobs (Code for Life) wrote http://sciblogs.co.nz/code-for-life/2012/03/02/dear-journalists-and-editors/ it's an open letter to journalists,

Please, when you decide to âadvocateâ for a familyâs fund raising efforts towards treatment for their sick child, parent or sibling*, check what the money is being used for is sound.

Articles about families raising funds in the hope of curing a seriously ill child* no doubt sell copy, but with that comes responsibility.

These articles, with their details of how to support the appeal at the bottom, effectively advocate the appeal to the reader.

They both raise good points. If the media didn't enable fundraising efforts for Burzynski and other quacks, they'd be closer to going out of business.

Michelle - I don't understand. You are not upset to learn that this guy is ripping you off?

And I stand by it, if you don't want people to talk about your son's case, then keep it out of the newspaper. Because once you put it there, you have NO right to control the discussion about it.

By Marry Me, Mindy (not verified) on 02 Mar 2012 #permalink

Oh and Michelle, if you read through the commentary on the posts that Orac linked to (bolded in the quote below)above in this section of his post..

Finally, when bloggers start criticizing Burzynski for his activities,, he hires hamfisted and incompetent reputation enforcers to threaten them with legal action ., while on various discussion forums Burzynski disciples will swarm in like flying monkeys to complain to admins that criticism of Burzynski's activities constitutes "abuse.

...you will get a good idea of the type of language and nasty deceitful tactics favoured by Burzynski's trolls. Most likely just a few posting under a plethora of pseudonyms.

By Sauceress (not verified) on 02 Mar 2012 #permalink

I have a comment in moderation, on the NZ science/skeptical bloggers coverage of this particular case.

Dear Ms. Bessant,

Please accept my strongest feelings of sympathy on your son Jesse's illness. Brain stem glioma took one of our family members; it is a cruel thing.

Also please accept my sympathy on the receipt of the hateful emails from persons purporting to be readers of this blog (it doesn't really have "members"). Like Sauceress, I suspect the vile emails are not from regular readers here, but from those who seek to discredit Orac or others who have publicly criticized Burzynsky.

Ms. Bessant, I am terribly sorry that you feel you are being attacked. This is a stressful time for you.

I am also wondering if people in your real life have read the criticisms and are questioning your choices.

I agree with ent. Name them. I will do my best to shame them, right here on this very blog. Send me the e-mails. Seriously.

As I pointed out, I realized that what I wrote might cause you pain. While I'm sorry about that, seeing kind-hearted people funding quackery is something I can't say silent about. If I can't persuade you, maybe I can warn others. Please read these links for detailed analyses of Burzynski's "therapy":

http://scienceblogs.com/insolence/2011/11/burzynski_the_movie_subtle_it…

http://scienceblogs.com/insolence/2011/12/personalized_gene-targeted_ca…

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

And these links for Burzynski's tactics:

http://scienceblogs.com/insolence/2011/11/you_dont_tug_on_supermans_cap…

http://scienceblogs.com/insolence/2010/05/harnessing_peoples_good_to_pa…

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

The reason I recommended Dr. Teo is because he would have a much greater chance of helping Jesse than Burzynski. If you're going to spend hundreds of thousands of dollars, spending them on Dr. Teo's talents would be far more likely to get the result you quite rightly so desperately want.

@ Ms Bessant:

I truly feel sorry for you: many regulars are involved because they are concerned about medical fraud- often having witnessed it firsthand in their own families; Orac is a surgeon( specialising in breast cancer) who writes tirelessly about medical fraud, alt med schemes and useless health products that endanger people or simply waste time and money. Please read his words again : he understands how much you and yours are suffering and is trying to *prevent* more pain for you.

By Denice Walter (not verified) on 02 Mar 2012 #permalink

Ms. Bessant, I have a son who is facing open heart surgery. It is a scary time, but fortunately we know that insurance will pay for it. We only have to pay for travel to another state (much like you would have to travel to see Dr. Teo).

But still, your world is being turned upside down. We know it does not help that the person you have decided to trust with your son's life is not well regarded. Digging in your heels and refusing to read the bad publicity about Burzynski is not going to help your son.

It is not my business to argue with the Bessants about their decisions for their son's treatment, or to try to change their minds, for I do not live in Auckland. Their decision to work on Burzynski's behalf as proxy collectors to call on the generosity of strangers and swell his income stream does not impact personally on me.

However, the incompetent journalism of New Zealand newspapers *does* affect me. Since the NZ Herald's reporters are not interested in research or providing their readers with anything that doesn't sell copy, I support Orac -- and the people at SciBlogs -- when they do what they can to publicise Burzynski's history of fraudulence.

Of course it's an uphill battle. Burzynski has web designers to push his clinic up in Google ratings and promote his therapy in an entire network of 'patient-testamonial' web-sites (occasionally, as we have seen, his web designer goes off the reservation and has to be sacked for threatening his detractors with legal action). But at least the information is available.

By herr doktor bimler (not verified) on 02 Mar 2012 #permalink

Michelle, I read your website, and your son's story breaks my heart. As I read through the history of symptoms, I felt your frustration at not getting a correct diagnosis. I am a mother of a son with a potentially life-threatening condition, but I also have worked in cancer centres. I have followed Orac for a few years, and while I rarely comment, I can echo the others by saying that there aren't any I can think of that would send you personal attacks. On the contrary, I find his blog and related blogs a godsend when trying to determine treatment options for my son. He is a cancer surgeon and a researcher, so his opinion is definitely worth consideration.

I sincerely hope that whatever path you choose you are able to get some results!

By Bogeymama (not verified) on 02 Mar 2012 #permalink

Michelle,

In all the years I've been reading this blog, the regulars have always been sincere, genuine, always willing to present their case - just generally well-mannered.

I cannot imagine any one of them emailing you as you describe. Not one. It's utterly disgusting and you have my utmost sympathy.

However, I've also seen some of the hate mail from the Burz clinic, as sent to various bloggers who dare question him in public. And it's nasty stuff.

There is a genuine possibility you're being set up - and we can find out. Please forward every last one of those emails to Dr Gorski (Orac). He know the IP address of anyone who comments on this blog, so if it's someone here then they're in big trouble.

In fact, get the police to look at them. Email can nearly always be traced and a court order can find out who owns any Yahoo or Hotmail account. Get them caught, the scumbags.

Best wishes, anyway. The hatred of Burzinski is nothing to do with you guys, please don't take it that way.

Cheers,
Mark

PS. Why not contact that expert Aussie doctor mentioned above, see what he says? No pharma company ever held sway over a brain surgeon, of that you can be sure. Can't bottle surgical skill.

Did anyone notice that the person posting as Michelle Bessant went from posting as "Michelle Bessant" to "Michelle"? Hopefully, it really is her, but considering the cheap tactics that Burzynsky's incompetent henchmen engage in, I wouldn't be surprised if one, or both of them isn't really her. I suppose Orac will be able to tell us if the isps are authentic. I also concur that if she's really Michelle Bessan and getting anything but compassionate, concerned emails regarding her situation, they're not from any of our regular (non-troll) posters. If the actual Mrs. Bessant is posting and reading this, I would hope you stick around to discover what fine, compassionate human beings most of the RI regulars are. Passionate about science and medicine? Yes. But always champions of those suffering at the hands of quacks, charlatans and the self-deluded. I won't pretend I'm even capable of putting myself in your shoes, but my heart goes out to you and your family.

By Pareidolius (not verified) on 02 Mar 2012 #permalink

Burzynski is an unforgivable bastard. My mother tried to get me to pay him when my stepfather developed brain cancer, and our relationship has never been the same since. How is he not in prison? Why is he allowed to practice such fraudulent quackery?

I've emailed Matthew Theunissen, the author of the NZ Herald article.

I explained that I believe the article was misleading and potentially harmful to readers, since it presented this very controversial clinic in a favourable light. I then went on to describe the various legal and ethical issues.

I'll comment again here if I get a reply.

I would love to see someone open a museum of quakery. Good old Burzyinski
would get his own wing, heck, why not call it the Burzynski Museum of Quakery?

By mark davidson (not verified) on 03 Mar 2012 #permalink

@Pareidolius: I'm guessing, since Orac asked Mrs. Bessant to send him the emails, that at least her ISP matches up whether she comments as Michelle or Michelle Bessant. I would imagine that if "Michelle" was a sockpuppet he'd crack down on that one hard.

Thanks Dawn, I missed his comment earlier in the thread.

By Pareidolius (not verified) on 03 Mar 2012 #permalink

If they come to Houston (I live in Houston) could we hijack the car and take them to a REAL hospital that specializes in cancer treatment, such as M.D. Anderson?

By Erehwonmai (not verified) on 03 Mar 2012 #permalink

Michelle,
Please read this testimonial that you won't find on Burzynski's site, from a patient who wasted over 100 thousand dollars on his sham treatments http://lymphomation.org/story-kandj.htm

I sincerely hope you don't waste your time with Burzynski.

Nükleer programı nedeniyle baÅta ABD olmak üzere Batı ülkelerinin yaptırım uyguladıÄı Ä°ranâın atom bombası denemesi yaptıÄı iddia edildi. Ä°ddiaya göre, Kuzey Kore 2010 yılında Ä°ran adına atom bombası denemesi yaptı

The testimonial anjou linked to is one of the best average person/former victim's takes on alternative medicine and conspiracy beliefs that I've ever read. This is someone who had the intelligence and courage to acknowledge where he went wrong. Unusual and powerful reading.

http://lymphomation.org/story-kandj.htm

By Dangerous Bacon (not verified) on 04 Mar 2012 #permalink

This will be my last post, I do not appreciate receiving personal emails with attacks on myself & my son, the language used was absolutely disgusting, our situation is already stressful enough we certainly don't need to be subjected to a nasty email campaign as well. Nice blog you have here, you must be so proud of your members.

Posted by: Michelle | March 2, 2012 8:06 PM

We have no email link from this site unless you were foolish enough to type it out for us in a post. So did you? Because I haven't seen it.

Give that Michelle said that the very nature of this post was upsetting I'm a bit skeptical about the nature and source attribution of the "nasty email campaign".

By Robert S. (not verified) on 04 Mar 2012 #permalink

Receiving "nasty emails" without having posted your email address? Must be psychics sending them.

Receiving "nasty emails" without having posted your email address? Must be psychics sending them.

To be fair, it's possible that some digging with various search engines might turn up her email address. Or maybe someone sent nasty emails to the webmaster of the charity website and/or to the administrator of the website's DNS entry, and that email got forwarded to her.

By Matthew Cline (not verified) on 04 Mar 2012 #permalink

If they really had 'completed' Stage 2 trials as the family as been told and relayed tompitential donors, would that be listed somewhere?

By David Driscoll (not verified) on 05 Mar 2012 #permalink

God almighty. What a fucking scumbag.

Look, I try not to get too nasty on here, or let myself get too caught up in hating people, but I think it's a fair judgement to say that Mr. Burzynski deserves to, at the very least, be eaten alive by rabid wolverines.

By missmayinga (not verified) on 05 Mar 2012 #permalink

If they really had 'completed' Stage 2 trials as the family as been told and relayed tompitential donors, would that be listed somewhere?

According to the records at clinicaltrials.gov, the Burzynski clinic has started 61 trials over the decades, 60 of them as Phase-2.
http://clinicaltrials.gov/ct2/results?term=burzynski

Of those, precisely one (1) has been completed ("Antineoplaston Therapy in Treating Patients With Advanced Mesothelioma"), in 2009, but with no results published. Some have been cancelled, some terminated, but most remain open, being the legal loophole Burzynski uses to recruit and charge patients.
-----------------------------

Last year the NZHerald was equally uncritical in their promotion of

The Hope4Cancer Institute in Tijuana provides an alternative treatment called Salicinium therapy, which the clinic says can kill cancer cells by disrupting a key enzyme.

It is difficult to shame them into a sense of ethics.

By herr doktor bimler (not verified) on 05 Mar 2012 #permalink

I, too, was wondering where her email address came from, since I don't remember seeing it (although I never click on names, so I wouldn't know).

I doubt that the "nasty emails" were coming from folks trying to discredit the site. More likely is that the "nasty emails" were simply people telling her to not go through with it, and that Burzynski is ripping her off. As she has demonstrated, that is enough to be very upsetting for her. Not supportive = nasty.

By Marry Me, Mindy (not verified) on 05 Mar 2012 #permalink

@85 (herr doktor bimler):

âIt is difficult to shame them into a sense of ethics.â

They havenât (yet) published our letters to the editor, either :-(

The information you write about the trials is useful & counters some of what was offered in the NZ Herald article. Might file that away for if the topic comes up again.

Maybe I'm just cynical, but I too get the feeling that this move has something to do with the ongoing litigation.

@hadr0n - cynicism is entirely justified when talking about anything Burzynski does. I think you and Kevin are right - this way he can keep the long con going while he ducks and runs from the lawsuits.

By Edith Prickly (not verified) on 06 Mar 2012 #permalink

Slightly off topic, but I just wanted to say thanks to Orac and all the sane commenters on the cancer quackery posts he does. My brother has just been through six months of chemo, radiation and surgery for a leiomyosarcoma. He's only 32 and has two young kids (his wife was actually pregnant when he was diagnosed). Anyway, we've all been under a huge amount of stress and would probably be easy pickings for charlatans and quacks. Coming here and reading the sanity has been a great help. I have been able to deflect a lot of well-intentioned nonsense with some quick facts. So, thanks to you all.

Hugs to you, papango, and best wishes to your brother and family for a speedy recovery!

By Melissa G (not verified) on 06 Mar 2012 #permalink

@ papagando...thanks for sharing your story. We all send best wishes to your brother and your family. Please come back to post here, again.

I looked at the Facebook fundraising page, which ironically is titled : "Lets Get Little Jesse The Help And The Professionals He Needs". If only. Burzynski's definitely NOT want he needs.

It's truly heartbreaking to see the photos of this innocent little angel, and almost as heartbreaking to think of all the people donating money in good faith.

By Marc Stephens … (not verified) on 06 Mar 2012 #permalink

@89, 90-
Interesting. As I've mentioned in a previous comment, I think it's conceivable that Burzynski doesn't actually do a great deal in the day-to-day operations of his "clinic". At the least, I think it can be taken as a given that his operation supports many people besides himself, and with such a critical mass, the enterprise could sustain itself even if Burzynski died.

I've just finshed watching a documentary on the subject of Dr Burzynski. the antineoplasin medicine is claimed to be a non toxic treatment.

It is used to encourage the patients body to shut off oncogenes (which are known to promote cancerous cell growth) as a result tumor supressing genes are switched on.

This is the claim Dr Burzynski has made in his patented medicine.

http://topdocumentaryfilms.com/burzynski-the-movie-cancer-is-serious-bu…

Going by what I have watched in his documentary I find your blog post highly irresponsible and perhaps even dangerous.

You have failed to provide a clear arguement against the mechanisms of antineoplasins and instead have attacked the credibility of a man involved with onocolgy practise and research for almost 40 years.

There are many issues surrounding the failure for anitneoplasins to obtain FDA approval.

The FDA have been in no way fair towards Dr Burzynski, this much is well documented. I consider the FDA shameful at best.

By Dr SJ Nicholas M.D (not verified) on 09 Mar 2012 #permalink

SJ Nicholas,

It is used to encourage the patients body to shut off oncogenes (which are known to promote cancerous cell growth) as a result tumor supressing genes are switched on.

Wow, that sounds pretty miraculous! Any compound, or suite of compounds, that reliably produces this effect would surely be accompanied with scores of publications in high profile journals demonstrating this effect. Surely you've read them instead of taking a self-produced movie at face value?

Wait, hold on a second, actually there are exactly zero peer-reviewed publications that demonstrate the cited effect in humans or any model organism. 'Antineoplastin medicine' is pure fraud, nothing more. I'm afraid you've been duped.

@Dr Nicholas,

That movie is not a "documentary". It's a commercial.

The company that produced it makes Old Navy and Campbell Soup commercials. Dr. B. hired them to make the movie. It's completely one-sided. The filmmaker is not a documentarian nor a writer. He's a graphic artist with no other documentary credits to his name on IMDB.

If you're a real doctor you would have seen through this sham and asked yourself lots of critical, science-based questions.

By Marc Stephens … (not verified) on 09 Mar 2012 #permalink

"Dr. SJ Nicholas, MD" (#98):

"It is used to encourage the patients body to shut off oncogenes (which are known to promote cancerous cell growth) as a result tumor supressing genes are switched on. This is the claim Dr Burzynski has made in his patented medicine."

Here's the problem with that over-simplistic view, Dr. Nicholas - most "oncogenes" are genes that code for cell-cycle regulatory proteins, pro-apoptotic proteins, and DNA repair enzymes. They are - oddly enough - only "oncogenes" when they are "shut off". So, shutting off "oncogenes" is the trigger for cancer, not the other way 'round.

I'm not surprised you got it wrong, since the propaganda put out by many of the "alternative" cancer therapists also gets it entirely backwards. It's hard for a physician educated several decades ago to get caught up with all that's happened in cancer biology unless they are involved in oncology (which I fervently hope is not your specialty).

"Going by what I have watched in his documentary I find your blog post highly irresponsible and perhaps even dangerous."

Not surprising, that. If you go by what you saw in that infommercial, you could be expected to be wrong about a great number of things. Cut your losses and stop while you're behind - that video has as much valid biological information as the book of Genesis.

"There are many issues surrounding the failure for anitneoplasins [sic] to obtain FDA approval."

Yes, not the least of which is the failure to complete phase II and phase III studies. You can't really expect the USFDA to grant approval to a "drug" that hasn't passed the minimal amount of testing, can you? If "antineoplastons" (or whatever they're calling them this year) ever complete the requisite studies, then you can start saying nasty things about the FDA - until then, responsibility for the lack of approval is entirely Dr. Burzinsky's.

"The FDA have been in no way fair towards Dr Burzynski, this much is well documented. I consider the FDA shameful at best."

I won't say that "Dr. Nicholas" is a shill for Dr. Burzinsky, but he/she seems to have a lot in common with the denizens of my sock drawer.

Prometheus

@Prometheus

If he is a shill he's not doing a very good job. He misspelled "antineoplastons" three times. If you're going to sell the Kool-Aid at least know how to spell it.

By Marc Stephens … (not verified) on 09 Mar 2012 #permalink

"Dr. Nick",
What's the technology by which inactive genes are "switched on"? How much control do the people who allegedly have it have over WHICH genes turn on? And if they can do all that, couldn't they come up with something better to do with it than prolonging the lives of a few elderly cancer patients? For example, they could switch on a few recessive genes in a chicken and turn it (back) into a dromeosaur. I'd pay money to see that.

@104,
Actually, the historically correct phrase would be "drink the flavor aid". Perhaps an even better analogy for shilling Burzynski...

the antineoplasin medicine is claimed to be a non toxic treatment.

Feel free to mainline the stuff. Inject as much as you like.

By herr doktor bimler (not verified) on 09 Mar 2012 #permalink

Dr. SJ Nicholas, (alleged) MD

the antineoplasin medicine is claimed to be a non toxic treatment.

Bernie Madoff claimed his fund was a sound investment. Tow former co-workers of mine encountered a man on the bus who claimed to be the "Legal Prime Minister of Canada".

Prometheus

I won't say that "Dr. Nicholas" is a shill for Dr. Burzinsky, but he/she seems to have a lot in common with the denizens of my sock drawer.

I would hope the denizens of your sock drawer are less odoriferous.

By Militant Agnostic (not verified) on 09 Mar 2012 #permalink

the antineoplasin medicine is claimed to be a non toxic treatment.
Feel free to mainline the stuff.

I should add that it's pretty damn cheap if you obtain it from a pharmaceutical supplier and avoid Burzynski's profit margins, so price is no object!

By herr doktor bimler (not verified) on 10 Mar 2012 #permalink

@Dr SJ Nicholas M.D.,If you can point to the high quality evidence that shows that Dr. Burzynski's treatments produce better outcomes (say, higher cure rate with lower side effects) than the current standard of care for the same cancer, I (for one) could be convinced.Where's the data? What is the quality of that data? How do the results compare with the current standard of care?

By Mephistopheles… (not verified) on 10 Mar 2012 #permalink

Dr. Nicholas would appear to be an orthopedist specializing in sports medicine, with a clinic in Scarsdale and a background including experience working for professional sports teams. That's just from quick poking around with DuckDuckGo and Google—if I have the wrong S. J. Nicholas, of course feel free to correct me.

Why is it, when I read Dr. Nicholas's comment, do I imagine him saying "I got these gloves free with my toilet brush!"?

By General Factotum (not verified) on 10 Mar 2012 #permalink

Vicki @110

if I have the wrong S. J. Nicholas, of course feel free to correct me.

Perhaps someone should inform Dr. S. J. Nicholas that some asshole has been signing his name to stupid comments.

Actually, it would not surprise me if the Burzinski noise machine is digging up the names of MDs on the internet and using them to sign comments on blogs criticizing Burzinski.

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

Dr. S.J. Nicholas should be notified that someone who is shilling for Burzynski is using his name. The Stephen J. Nicholas that Vicki refers to, is affiliated with several orthopedic practices and a number of large medical centers.

There is nothing on his website to indicate that he practices any sort of "alternative" orthopedics.

David Brown:

For example, they could switch on a few recessive genes in a chicken and turn it (back) into a dromeosaur. I'd pay money to see that.

So would Dr John Horner. (Not a doctor of medicine. He's a paleontologist.) He's working with some geneticists who are attempting to do just that. So far, they got them to grow teeth. So if they really can switch genes on and off so easily, they should write to Montana State University. There's probably some grant money in it.

By Calli Arcale (not verified) on 13 Mar 2012 #permalink

David Brown:

For example, they could switch on a few recessive genes in a chicken and turn it (back) into a dromeosaur. I'd pay money to see that.

So would Dr John Horner. (Not a doctor of medicine. He's a paleontologist.) He's working with some geneticists who are attempting to do just that. So far, they got them to grow teeth. So if they really can switch genes on and off so easily, they should write to Montana State University. There's probably some grant money in it.

By Calli Arcale (not verified) on 13 Mar 2012 #permalink

Terrible, biased article. You just rant on and on as if you actually intimately knew those patients, not to mention, their entire genomic DNA sequences (sarcasm). If you are going to bash Dr. Burzynsi, then do so by refuting the premise upon the biochemical pathways that the antineoplastons work (which you don't). If he's such a fraud why are the japanese interested in his research? Certain rare melanomas would probably require nano tech with a virus vector in addition to antineoplastons surging the mutated genes in order to be efficient, but it appears that the more basic melanoma is likely to be tamed via Dr. Bs treatment. Peace.

Auechre, perhaps you should read the many other articles on this website discussing a variety of topics related to Burzynski before commenting. Many of them are linked to right in this very article. I would post them but since there are so many the spam filters would grab my message and put it into moderation. But the links are there, as well as a search engine.

As for your post, what Japanese are interested? The Ministry of Health, Labour and Welfare? Some researchers? Some random people? To be honest I have no idea why they would be interested as the results of 30 years of phase II trials have not been published.

It goes back to 2006
1996, in fact.
The first author of that study (Dr Hideaki Tsuda) is an old mate of Burzynski's who has set up a one-man Antineoplaston Study Group at the private university where he works, Kurume. He is himself an anaesthesiologist ("Tsuda and Burzynski worked together at Baylor when Burzynski was a technician in the anesthesiology department").

Tsuda was a one-man paper mill in the 1990s, publishing a handful of papers in such prestigious journals as the Kurume Medical Journal, in this case. Burzynski has been touting those 1990s claims ever since, in the absence of anything more recent.

As for your post, what Japanese are interested? The Ministry of Health, Labour and Welfare? Some researchers? Some random people?

Not the Japanese National Cancer Institute, who tried Burzynski's regime a few decades ago but gave up on account of negative results.

If you are going to bash Dr. Burzynsi, then do so by refuting the premise upon the biochemical pathways that the antineoplastons work

If I were a potential patient, I would be more interested in the question of whether antineoplastons actually work. In the absence of any 5-year survival results from Burzynski -- despite DECADES of charging his experimental subjects -- I would not give a flying f*ck for his postulated "biochemical pathways".

By herr doktor bimler (not verified) on 15 Mar 2012 #permalink

WHOEVER WROTE THIS ARTICLE IS A QWACK!!! AND ANYONE WHO AGREES WITH YOU ARE IGNORANT PEOPLE!! HOW ARE YOU GOING TO SIT THERE AND WATCH THE PATIENTS WHO HAVE SURVIVED TELL THEIR STORYS AND NOT SEE THAT THIS DRUG IS SUCCESSFUL OF COURSE THERE ARE GOING TO BE PATIENTS WHO DONT SURVIVE SAME AS IN A REGULAR HOSPITAL WITH CHEMOTHERAPY MOST OF THE PATIENTS DIE A MISERABLE DEATH..WELL WITH Antineoplaston therapy MORE PATIENTS ARE LIVING AND THEY ARE NOT SUFFERING FROM HORRIBLE SIDE EFFECTS. THEIR QUALITY OF LIFE IS GREAT. YOUR RETARDED AND YOU DISGRACE THE HUMAN RACE JUST LIKE THE AMERICAN GOVERNMENT AND THE FDA ARE DISQUSTING CRIMINAL BASTARDS WHO ONLY CARE ABOUT MAKING MONEY AND THEY DONT WANT TO CURE CANCER BECAUSE THEY MAKE MORE MONEY WITH NO CURE!!! FUCKING JACKASS~!!!!

I think Amanda might be the new PR person they hired at Burzynski's clinic. She certainly seems to have been well-trained by Marc Stephens. They have the exact same level of illiteracy. The same ranting. The same nursery school name calling. The same Big Pharma conspiracy theories.
The same random patient anecdotes. The same lack of any evidence. We've heard it all before here, and I'm relatively new!

By Marc Stephens … (not verified) on 22 Mar 2012 #permalink

Amanda, do you know how useful the "shift key" and "caps locks key" are on your keyboard? Did you actually go through high school without knowing how to use a basic typewriter type keyboard?

Please read the other articles on Dr. Burzynski. He uses regular chemotherapy, though not very effectively and at a high price.

Please, the next time you grace us with your "ALL CAPS" brilliance do present the results of the Phase 3 clinical trials. That would be much more convincing.

I call Poe on amanda @120

Although a true Poe might take the time to capitalize the bits of text they copied and pasted from elsewhere...amanda, if you are for real, I recommend actually reading the article and the various others about Burzynski on this site. If someone had a true potential treatment for cancer and chose not to publish their results to share this knowledge with the world, wouldn't that person be more of a 'disgrace?

She had a nice rant going until she forgot how to spell Dr. B's treatment & had to go cut and paste it into the comment....

Lawrence, please remember to refer to him as Dr BS as one of his previous worshippers did. It's far more appropriate!

What about all the successful treatments? What about all the people who are alive today because of this doctor? No therapy is 100% effective, but if some people who were given a death sentence by oncologists are alive and well today should we not be pursuing this?

Sure, Kirk, show us who they are: please link to the conclusions of the Phase 3 clinical trials where their case studies are discussed.