Eric Merola doesn't much like me.
Actually, no one who is an apologist for Dr. Stanislaw Burzynski, a.k.a. "Stan the Man," who over 30 years ago unleashed antineoplastons on unsuspecting cancer patients, much likes me. It's not surprising. As you might recall, antineoplastons are chemicals that Burzynski found in the urine of cancer patients and that (or so he claims). Claiming that antineoplastons were endogenous inhibitors of tumor growth made by the body and of which cancer patients are deficient, thus allowing cancer to grow, he embarked on a campaign to treat cancer patients with them. None of this would have been too bad if only he had actually bothered to do the proper science and clinical trials to demonstrate that antineoplastons (1) have significant anti-cancer activity and (2) have acceptable levels of toxicity. Oh, sure, he has a bunch of clinical trials listed on ClinicalTrials.gov, but virtually all of them are listed as having "unknown" status, and it's unclear whether most, if any, of them are actually accruing. I've written extensively about this, beginning with a review of a propaganda movie about Burzynski, then moved on to describe how Burzynski is co-opting and abusing the concept of "personalized therapy" for cancer, and finished up by discussing how he's also co-opting an orphan drug in his therapy.
The movie itself is arguably Stanislaw Burzynski's chief sales tool. Entitled Burzynski The Movie: Cancer Is Serious Business, Merola's movie was such blatant propaganda that it would make Leni Riefenstahl blush were she still alive, not so much at the blatantness of the propaganda as at the utter talentless and risibly bad film making. Basically, Merola's a hack. Unfortunately, I also found out that Merola is planning on releasing another propaganda "documentary" about Stanislaw Burzynski later this year. Merola decided to call it Burzynski: Cancer Is Serious Business, Chapter 2 | A Modern Story:
Wondering what it is with Merola and the multiple subtitles, I had been hoping he would call the Burzynski sequel something like Burzynski The Movie II: This Time It's Peer-Reviewed (except that it's still not, not really, and I can't take credit for that joke, as much as I wish I could) or Burzynski The Movie II: Even Burzynskier Than The First, or even Burzynski The Movie II: Burzynski Harder. Mercifully, I doubt even Merola would call the film Burzynski II: Antineoplaston Boogaloo. (If you don't get this last lame joke of mine, it's probably because you are either not from the US or too young to remember the movie that spawned that particular catch phrase. Check out the Urban Dictionary forthwith!)
As I said, it looks as though Burzynski I will be even Burzynskier than Burzynski I.
In any case, Merola named the sequel what he named it, and we can all look forward to yet another propaganda film chock full of conspiracy theories in which the FDA, Texas Medical Board, National Cancer Institute, and, for all I know, the CIA, FBI, and NSA are all out to get Merola's heroic "brave maverick doctor," along with a website full of a "sourced transcript" to be used by Burzynski minions and shills everywhere to attack any skeptic who dares to speak out. The only good thing about it, if you can call it that, is that I'm guaranteed material for at least one juicy blog post, at least as long as I can find a copy of Burzysnki II online, as I was able to do with Burzynski I, thanks to Mike Adams at NaturalNews.com, Joe Mercola, and other "alternative" websites.
Somehow, I doubt that Eric Merola will send me a DVD review copy when the movie is released.
Part of the reason that Eric Merola doesn't like me, aside from the fact that I am willing to help publicize Bob Blaskiewicz's present to Dr. Burzynski for his 70th birthday on January 23, is that I think that every so often I happen to run into stories about the bad science and unethical nature of Burzynski's work, and I blog about it. I also run into patient stories. Although I don't cover them as systematically as Bob does, I like to think that what I lack in comprehensiveness of coverage I make up for with my in-depth knowledge of cancer science and treatment.
So it was a couple of weeks ago, when readers started sending me blurbs about a documentary broadcast on the Irish television station TG4. Then, I was sent a link to the actual video, allowing me to watch it for myself. The television show, Tar éis na Trialach ("After the Trial") is in Irish, but it has subtitles, and it's very much worth watching. It's about a young man named Seán O'Laighin who is celebrating his 21st birthday while battling an inoperable brainstem glioma. Part I of the 30 minute show can be found here and embedded below (note that part II will start playing automatically after a commercial at the end of part I):
Tar éis na Trialach is a moving (and depressing) portrait of a young man named Seán Ó'Laighin, who at age 19 was a talented hurler and nursing student with a promising career and his whole life ahead of him when he was diagnosed with an inoperable brainstem glioma. The show begins with shots of him as a boy (who really liked Eminem and Michael Jackson), as a vigorous and athletic young man, and as a student interspersed with pictures of Seán in a wheelchair, having drugs infused, his family holding fundraisers to send him to the Burzynski Clinic and, most poignantly, sitting on the sidelines of the hurling pitch watching what I assume are his former teammates practice, himself no longer able to play because of the deterioration of his motor function to the point where he has difficulty walking. We learn that the first symptom that something was wrong was photophobia and difficulty learning to drive because he had trouble coordinating shifting and acceleration. He went to Beaumont Hospital, where a workup revealed that he had a mass in his brain accounting for his symptoms, and a biopsy of the mass revealed glioma. Seán was apparently given a prognosis of surviving approximately eight months to two years, and we see a shot of an oncologist named Dr. Aengus O'Marcaigh saying:
We can contain it with chemotherapy and/or radiation, but it's incurable because it's too dangerous to operate.
I'm sure that regular readers know what's coming next, and it does. We see a shot of Seán's mother, who tells viewers:
In the irish side, all really the talk was was of containment. And then we heard about Burzynski, and they offered the hope of a cure for us. Seán was only 19 so we decided to go for it.
Next is a very familiar story to those of us who have been following Burzynski. Treatment at the Burzynski Clinic easily runs into tens of thousands, if not hundreds of thousands, of dollars. Through a monumental effort, Seán's family managed to raise €120,000 (which at today's exchange rate is approximately $160,000) to go to Houston; so go to Houston they did. We see the video that appears to have been taken with an iPhone camera of the family, including Seán, his mother, his brother Tomás, and his sister Deirdre mugging for the camera in front of the Burzynski Clinic, overjoyed to be there because they think that this is Seán's best hope for survival.
Although it grated me to hear the narrator describe antineoplaston therapy as "controversial" (it's not controversial from a scientific standpoint; there's no evidence that it works), I give the producers credit for making it very clear that antineoplastons have never been "granted a general license by the FDA," and calling them in a relatively dismissive tone "just a trial drug." Also to their credit, the producers point out that Burzynski has never submitted his drug for conventional randomized clinical trials, and indeed he hasn't. Not really. As I've described before, after having claimed to have discovered these magical chemicals in the urine and to have discovered that they are endogenous natural inhibitors of cancer, Dr. Burzynski has set up a lot of preliminary phase I and II trials whose results he never seems to publish in the peer reviewed literature. Instead, he likes to publish case reports and minuscule patient series in journals that aren't even indexed by PubMed. No wonder, as the narrator puts it, the "medical profession here in Ireland are completely against it [going to the Burzynski Clinic]." Unfortunately, that didn't stop Seán's family doctor from agreeing to oversee Seán's care in Ireland, which the Burzynski Clinic requires before it will let someone return to his home country under his treatment.
It's definitely an ethical dilemma for doctors like this, because monitoring someone like Seán as he undergoes antineoplaston therapy isn't just a matter of making oneself available in case there are problems. It involves ordering MRIs and other tests, as well as ordering blood work three times a week. I can't help but note that if as a physician you order blood tests on a patient you are obligated to follow up the results and act on them if they are abnormal. Given that, contrary to Burzynski's claims, antineoplaston therapy is not "non-toxic," there's a not inconsequential chance that a patient like Seán will end up in the emergency room and need to be admitted at some point. Then it's up to you to fix the hypernatremia that antineoplastons cause. (I couldn't help but note that the concentration of the antineoplaston infusion listed on the bags was 300 g/L, or a 30 per cent solution. That's mighty concentrated stuff!
Although I knew a lot about Burzynski and antineoplastons already, what Seán's story taught me is just how difficult the treatment is that Burzynski puts his patients through. Fortunately for Seán, his mother is a registered nurse and was able to handle mixing up the solutions under sterile conditions, infusing them into his Hickman catheter, drawing the blood work, and in general being his around-the-clock private duty nurse. According to Seán's sister, it takes his mother 45 minutes just to prepare the infusion by mixing up the antineoplaston solution. Meanwhile Seán's father quit his job to help take care of him, as Seán quite understandably laments that he can't take care of himself anymore and has a very hard time just doing routine activities of daily living. In fairness, Seán would still require much of this care even if he were not being cared for through the Burzynski Clinic, but certainly the intense labor that is required to mix up and administer the antineoplaston solution would not be necessary if he were not being treated by Burzynski, nor would the expenditure of €120,000 or the massive effort it took to raise that much money.
The last half of the show alternates between preparations by Seán and his family for his 21st birthday party, with his friend taking him shopping for clothes, his family bringing his sister back home to Ireland from San Francisco, where she lives now, to surprise him, and other preparations, and Seán undergoing an MRI to determine whether his tumor had responded to the several months of antineoplaston therapy he had been undergoing. Fortunately, for Seán, his results took a few days to come back, which meant that he could enjoy his birthday party without the devastating news that later came. Not only did his tumor fail to shrink, but it didn't even stabilize. In fact, it grew by 35%. Since tumor growth is usually measured on a 2D image, that means in terms of volume, his tumor grew by as much as (1.35)3 = 2.46-fold. He was taken off the antineoplaston therapy and is next shown looking for other alternatives, with his doctors suggesting that he go on Aviston, which appears to be a different spelling of the word "Avastin" or an alternate trade name. Assuming that's the case, this is not an unreasonable option, given that gliomas tend to undergo a lot of angiogenesis.
There are a number of things about this documentary that one can learn if one is involved in caner care and knowledgeable about Stanislaw Burzynski. First of all, I find it rather telling that no one from the Burzynski Clinic, not even Stanislaw Burzynski himself, apparently agreed to appear either on camera or via telephone interview. Burzynski loves media attention; you can tell when he's on camera that he's just eating up the attention. Indeed, from my perspective he's an egomaniac, full of the arrogance of ignorance about things like personalized cancer therapy, prone to contemptuously dismissing and attacking anyone who has the temerity to question the Great and Powerful Burzynski. Indeed, he's even taken credit for pioneering the concept of personalized cancer therapy based on genes and the concept that cancer is a genetic disease, claiming to have published a journal article about it 20 years ago, allegedly long before conventional scientists and oncologists even thought of it. The problem, of course, is that, as far as I can tell, he published no such paper and personalized therapy is a concept older than 20 years. Of course, Burzynski tends to clam up when questioned about patients who didn't get better pursuing his treatment or from interviewers who are not likely to be sycophants, toadies, and lackeys (e.g., Eric Merola). Whenever he does agree to be interviewed by a real journalist, generally he can't prevent himself from lashing out at critics and making grandiose nonsensical claims.
More importantly than no one from the Burzynski Clinic showing up, there's the question of the clinical trial. Remember how, in the 1990s, the agreement between the Texas Medical Board and Stanislaw Burzynski that allowed him to keep his license stipulated that Burzynski:
- Cannot distribute unapproved drugs [like antineoplastons] in Texas
- Can distribute "antineoplastons" only to patients enrolled in FDA approved clinical trials, unless or until FDA approves his drugs for sale
- Cannot advertise "antineoplastons" for the treatment of cancer
- Must place a disclaimer to his website, promotional material and ads stating that the safety and effectiveness of "antineoplastons" have not been established
Interestingly, although in the Irish television show antineoplastons are described as "trial therapy," we learn nothing of the actual clinical trial, nor do we hear any mention of informed consent, protocol documents, etc. I'd give my proverbial eye teeth to get a look at the informed consent, protocol documents, and the description of exactly which clinical trial into which Seán was enrolled. If you go to ClinicalTrials.gov and type in "antineoplaston" plus either "glioma" or "glioblastoma," you'll find 16 trials. Eliminating the trials for children or for which glioma is not the tumor type being studied, that leaves four trials:
- Antineoplaston Therapy in Treating Patients With Brain Stem Glioma. The status of this trial is unknown. The study start date was listed as 1998, and the database entry was last updated in 2008. Given that it is very unusual for a phase II clinical trial to remain open for 14 years, it's hard not to assume that this trial is dormant or closed. A search of the trial number (NCT00003459) on PubMed shows no publications.
- Antineoplaston Therapy in Treating Patients With Recurrent or Refractory Mixed Gliomas. Same as above, except that the last update was in 2009, and the study start date was in 1996. A search of PubMed for this clinical trial number (NCT00003473) was similarly negative.
- Antineoplaston Therapy in Treating Patients With Brain Tumors. Same as above. A PubMed search for clinical trial number NCT00003457 yields nothing.
- Antineoplaston Therapy in Treating Patients With Glioblastoma Multiforme. The same, except that it was last updated in 2008. A search for clinical trial number NCT00003456 yields no publications.
So what we have here are a bunch of phase II clinical trials, which are meant to be preliminary, all started in the 1990s, all with statuses on ClinicalTrials.gov listed as unknown, none having been updated in at least three or four years, and none, apparently, having been published in the peer-reviewed literature, at least in a form linkable to the ClinicalTrials.gov entries. As the NCI states:
Antineoplaston therapy has been studied as a complementary and alternative therapy for cancer. Case reports, phase I toxicity studies, and some phase II clinical studies examining the effectiveness of antineoplaston therapy have been published. For the most part, these publications have been authored by the developer of the therapy, Dr. Burzynski, in conjunction with his associates at the Burzynski Clinic. Although these studies often report remissions, other investigators have not been successful in duplicating these results.
Given that these are all phase II studies, it's hard to believe that the FDA would allow Burzynski to keep them open over 13 years, but apparently it has. All of this brings up the question yet again: Which clinical trial was Seán enrolled in? Inquiring minds want to know! What "clinical trials" are all those other patients being enrolled on? Again, inquiring minds want to know! Finally, why doesn't Burzynski offer Seán his "personalized gene-targeted cancer therapy." It probably wouldn't be that big a deal to get the blocks of tissue from Seán's biopsy and have them analyzed. Yes, inquiring minds do want to know.
Perhaps the saddest part of the show is the end, because it demonstrates how a person like Burzynski, by offering false hope, can tempt even highly intelligent people who would normally be skeptical of such claims. As I've said before, if I were facing a terminal disease like the Seán is facing, even I'm not entirely sure that someone like Burzynski couldn't tempt me. I don't want to die any more than Seán does. But that doesn't change the insight into Burzynski's hold on his patients, even when his antineoplastons don't work. For instance, here's Seán's mother's response to a question asking whether she thought going to Houston was a waste of time given that the antineoplastons didn't work:
No, not at all because there was a girl that was there a month before us from England. She's now tumor-free. if you didn't try you wouldn't know.
How often do we hear this rationale? Burzynski families and their patients often fall into this trap, like Seán's sister:
I think with everything you do in life you will always have people who make negative remarks. One of my friends started telling me that she had heard bad things about Burzynski, and I just said, "Do you know what? I don't want to hear it." A positive mental attitude is so important. It's so important to a person who is ill, to feel as if he has hope. To feel as if he has a reason to get out of bed in the morning.
The show concludes with an image of Seán sitting in his wheelchair, watching his ex-teammates practice hurling, and saying how after he is through with his cancer he wants so badly to get back to playing again. It's a devastatingly poignant moment that increased my contempt for Stanislaw Burzynski and the false hope he gives cancer patients under the guise of research, often at the cost of hundreds of thousands of dollars borne by their families and friends.
How does he keep getting away with it? I don't know.
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Another terribly sad story. It's just unbelievable how Burzynski keeps getting away with this.
There's another troubling aspect to the fact that Burzynski requires a local doctor in Ireland to oversee the treatment. This is, of course, an FDA-mandated requirement for clinical trials: there must be a local investigator taking responsibility at any site involved in the clinical study.
The investigator is required to complete form FDA 1572, to show acceptance of various responsibilities as a trial investigator. This is true not only of this case, but also of various cases where patients have been treated in the UK (where I'm based).
I do not know whether any of these local doctors have completed form FDA 1572. If they haven't, then that's yet another rule Burzynski is breaking. If they have, I wonder if they really understood what they were signing.
One of the commitments they make by signing the form is to get ethical approval for the study from their local ethics committee. I gather that, despite various patients being treated under Burzynski's "clinical trials" in the UK, no applications for ethical approval have been made here. I don't know what the situation is in Ireland.
If these patients have indeed been treated without local ethical approval, which looks likely, that raises a whole load of interesting questions.
I can understand why families just "don't want to hear it" (any adverse reports about Burzynski), and dismiss anything bad they hear as being the complaints of a lot of whinging pharma shills/whatever.
It's classic cognitive dissonance. When you have invested so much (huge amounts of time, effort, money, social and family commitments) and combine it with the desperate wishful thinking you need to believe your child will survive, then nobody wants to hear or take on board any criticism.
mixing up the solutions under sterile conditions, infusing them into his Hickman catheter
One thing I have learned over the years -- on account of poor choices of family and friends -- is that anything that needs to be administered through a Hickman line is chemotherapy, and anyone who tells you that it isn't chemotherapy is also capable of p1ssing in your boots and telling you it's raining.
Ahh, but Herr Doktor, there are different types of chemotherapy, of course. There is the type conventional doctors give, which is always highly toxic and lethal, and the type enlightened maverick doctors like Burzynski give, which is soothing and a gentle as a light summer breeze blowing through a bluebell carpeted forest, caressing the manes of the peacefully grazing rainbow unicorns.
While I can understand the family grasping at these straws, what I find fascinating is the Burzynski defence force that leaps up around these videos. The logic to these people (if you can call it logic) is that a) the FDA is the boogeyman. And b) the FDA is trying to nail Burzynski. So therefore the treatment works.
None of them seem to wonder why if Burzynski is the brave maverick doctor they portray him as why he doesn't release the evidence and hasten more widespread adoption of his treatment. Or why if his treatment works he doesn't allow a major pharmaceutical pick up the tab for the trials so he can treat more people for nothing. Or why he charges extortionate sums of money for people to participate in a trial instead of providing it at cost. Or why if his treatment works so many people end up dying and so few (if any) are actually cured. Or why he has abandoned so many clinical trials. Or why he has spent the last 20 years advancing no further than phase II.
If they were honest and critical in asking those questions their logic might not be so broken in the first place.
If antineoplastons were so spectacularly effective in curing cancer starting in the late 70s, why did Burzynski later start adding his untested cocktails of potent chemotherapy drugs?
Re: Form FDA 1572,
I hadn't thought of that, probably because I haven't had to deal with a clinical trial patient from out of country or so far away that a local doctor is needed to agree to help oversee her care. (Also, one of the advantages for working for a large university and cancer center is that there are clinical trial offices to deal with the nitty gritty of various FDA forms.) I wonder if Sean's family doctor signed such a form.
Over and over again, we're hearing that "Dr. B" had to check to see if he could enroll a patient into a "trial." Is this actually happening? (And I would guess it's nothing but window dressing)
Seriously, how is the FDA letting him get away with spreading all of this misinformation & lying to patients?
Sean's sister: "A positive mental attitude is so important. It’s so important to a person who is ill, to feel as if he has hope. To feel as if he has a reason to get out of bed in the morning."
Speaking as a psychologist, I have to say that this sort of thing - which is not only pushed about by the 'mental self-help gurus' but also by many supposedly-reputable counsellors, psychologists and psychiatrists - absolutely irks the living fucking shit out of me. There is no evidence that a 'positive mental attitude' (however they define that!) actually gets rid of or even slows down the development of cancer. Especially if there's nothing going on to feel happy about. Even Aaron Beck had to get his head round the fact that depression isn't always an abnormal response: often, it is a very much the appropriate response to shitty circumstances, and no amount of happy-pills or CBT/RET will change the situation that the depression is a reaction to.
What I found was this: RET gives you the tools to find out if the emotional responses you have are actually ultimately down to you and therefore self-modifiable. If they are, you can do something about and all's well that ends well; but, if they are not changeable because they are responses to stuff that is outwith your control, then the situation has to change in order for the mental state to change. All this 'positive-mental-attitude-ism' shit is just a very subtle, but very powerful, way of blaming the bloody victim. And, generally (and especially in cases where cancer is the problem), it's not as if the person hasn't enough to try to deal with, without having - on top of all that - trying to figure out what a bloody positive mental attitude actually is and then trying to make one happen.
Orac: "the false hope he gives cancer patients"
And this is why I object to this PMA-ist crap. The hope is pretty much false: it has no grounding in reality. It's just the Pollyanna Effect, and little more. Might help in none-threatening situations but otherwise it's a line of thinking that has fuck all use. And I see too much of this shit, especially where I live... everything here is about rehabilitating people and the system is assumed to work perfectly. So, a person's depression cannot possibly be about the fact that the system is making a bollocks of their lives... because of that assumption, ergo we have to rehabilitate the person, using psychotherapy and medications.
And if the Finnish were highly scientifically literate, which they claim they are, they'd realise that the 'perfect system' assumption is a parochialised version of the 'just world' belief. and has no value in determining that the person is the one with the problem.
False hope is always bad, no matter how you package it.
comment in moderation ....
Nach mór an trua é.
-r.c.
@ David N. Andrews, M.Ed., C.P.S.E.
Exactly.
One of my profs held that perhaps some depressed people felt that way because they are more realistic than the non-depressed: they understand how truly crappy life can be ( there may be some evidence along these lines; but there is also data that shows that some depressed people assume that they can control more than is possible and become depressed when they fail. Too many details to go into here )
-btw- it was the same guy who despised Sir Cyril and detailed his manner of fraud- scaring us all into honesty.
I'll defer to your expertise, but one indirect benefit I've heard comes with optimism is that patients will be more likely to take their medicine regularly. Naturally, this benefit only works if they're being given an effective treatment in the first place.
Of course, I recognize that a patient shouldn't be expected to change their attitude just because people tell him it's healthier. People are more complex than a handful of toggle switches, and though we can learn and adapt, it's not as easy as quacks and self-help gurus claim.
Agreed wholeheartedly. That right there is one of the biggest memes quacks use to cover their asses. And even if the patient does display a positive attitude, the quack can claim that they were harboring bad subconscious thoughts that are conveniently quite difficult to monitor. It's ingrained in the general culture, not just altie culture, and it's an idea that we really need to dump.
Over the years, I've read a lot of comments from people who suffer from clinical depression, worsened by the stigma of this meme. The depression is hard enough to struggle with, and treating it like a moral failing can't be good.
On the other hand, you don't need to make yourself miserable just because you're going to die.
@ Bronze Dog:
Another benefit is that people who have hope will also TRY to do things that might be useful in themselves e.g. if they aren't absolutely convinced that they'll fail a test, they might worker harder and study more.
However in the medical area, hoping and trying might often translate into IN-appropriate actions - ones that have nothing to do with the outcome- e.g. eat less toxins, de-tox, do more good works, not have negative thoughts.
Stan "I am not an oncologist" Burzynski, from the clip:
"Many oncologists don't understand how these medicines work. They treat the NAME of the cancer. They're looking at the outside of cancer as a black box, and they treat this box without looking at what is inside. (huh?)
. . .They would be more creative, they will identify what is really going on in this individual patient at the genetic molecular level, and use the right combination. Then, with the available resources, they can already save the lives of numerous patients--but they don't do it." (huh?)
Burzynski characterizes this as "stable disease." I kid you not; if the tumor grows by less than 50% in 12 weeks, he considers it stable disease. That's 3% growth per week.
As a mother I can say I would do just about anything to heal my child's cancer. To think that this miscreant preys on that natural desire just makes me so angry that all I can think is a string of expletives.
I do also have to comment about the positive attitude nonsense. There were days during my cancer treatment when the only thing that I was positive about was that cancer sucked. I am not really sure what a positive attitude is. Is it denying that I have an illness that could very well kill me and saying that all will be well if I believe? Is it living in a lollipops and rainbows world in denial that anything could go wrong? Is it removing all negative people from my life?
I am sick of people coming up to me promoting quack remedies. Their attitude seems to be that if I had not done something wrong I would not have cancer. That apparently makes it easier to face the world because, of course, they are doing everything right.
@ Rose:
I wholeheartedly agree:
I would venture that some of the promoters of dubious cures for serious illnesses ( like cancer, hiv/aids, Alzheimer's etc) in addition to manipulating frightened people in order to get their money, are also denying reality by believing that living 'perfectly' will protect them, themselvs, from ever manifesting a serious illness.
Maybe I'm missing something, but if the tumor grew by a factor of 1.35 in 2 dimensions, wouldn't that make the growth in any given direction sqrt(1.35)=1.16? Or a volume growth by a factor of 1.57?
It may well be stable, relative to the rest of his fraudulent practice.
No, you're being way too sophisticated compared to how medicine is generally practiced in the trenches. Measurements are not that precise, and our way of thinking about comparing tumor size hasn't caught up with newer 3D imaging techniques. The way tumors are generally measured in routine practice is by how much its diameter is estimated to have increased in size, assuming a rough sphere. Consequently, in med-speak when we say a tumor has "doubled in size" we mean that its estimated diameter has roughly doubled; hence its volume has increased by eight-fold.
Indeed, because of the uncertainty of imaging measurements, in general we do not say that tumors are increasing in size unless the longest diameter of the tumor increases by at least 20%.
http://imaging.cancer.gov/clinicaltrials/imaging
Ism:
Strikes a chord - I'm looking at how crizotinib does (is claimed to do) it's thing on behalf of a relative. It strikes me as a good example of "individual patient at the genetic molecular level," etc.
As far as the idea of positive thinking leading to good things, I offer this quote from Babylon 5's inestimable Marcus Cole:
"I used to think it was a terrible thing that life was so unfair. Then I thought, 'what if life *were* fair, and all of the terrible things that happen to us came because we really deserved them?' Now I take great comfort in the general unfairness and hostility of the universe."
I honestly do not understand why the idea of positive thinking is so popular. Sure, it sounds good at first, since it means that you can take credit for all the good things, but even a brief look at it reveals that it's actually pretty horrible, since it means all the bad things that happen are your fault. Maybe there is a lot of self-delusion in the world, so people don't get past the first part of that to see the sinister underside that inevitably goes with "the power of positive thinking".
I mean sure, think positive. Why not? Just don't expect it to work miracles.
@ Calli:
I will intrepidly go out on a limb and TOTALLY speculate that people may associate positive thinking with positive results because of the error that what precedes a desired effect CAUSED that effect- which occasionally happens ( like Skinner's pigeons repeating the actions that they engaged in directly previous to getting their RANDOMLY- timed feeding) Intermittent reinforcement takes longer to extinguish.
People know that intention that precedes ACTION- like movement and effort- causes the desired results: perhaps the idea that precedent beliefs ( or wishes or desires) can lead to results ( sans action) is another generalisation they make- like a short circuit...
We're not talking about logic here but wishes, hopes, emotions and fantasy. I would venture that a major constituent of what occurs in everyday living is based in fantasy.
Regarding percentages re: overall volume: So, when the doctors tell me that my pituatary is 1/4 normal size, would it be 1/4 in all three directions, thereby 1/64 the volume of a normal one? Maybe they already did the volume conversion. I really need to take notes at the doctor's office.
"Assume a spherical pituitary..."
I was told by my RCT handler that I had a good, positive attitude. That is not what cured me, but it did help in coping with the fun-time effects.
Logic is secondary to how something makes you feel for a lot of people. Almost like it is wrong to rely on it because you are denying love(??) when applying logic to psychic claims or what have you.
Since Dr B has had 4 phase II trials on this type of tumor without any published results, why can't we all point out that B's trials have all been failures when it comes to this kind of tumor? That seems like a fair opinion that is strongly based on the facts in evidence.
Then, when some miserable family starts talking up the fundraising back in Britain, they can be told that the process is a failure instead of the totally ambiguous term "controversial." If they question that assertion, point out that there has been a total coverup regarding deaths that have happened under B's care and that B refuses to publish complete and accurate studies. The more obvious argument, that this treatment would have been snapped up in a month if it did any good at all, might have to be left out of the discussion, since it is a little too rational.
Of course the ultimate cure for the Dr B sickness is some treatment that works. The short term cure for the Dr B sickness is some treatment that is promising enough to justify some legitimate clinical trials.
@Calli
Dammit, you beat me to the Marcus Cole quote.
@Calli
Dadgummit, you beat me to the Marcus Cole quote.
Wordpress is not my friend.
WordPress isn't a friend to anyone who doesn't draw a paycheck by virtue of perpetuating the mess.
As another psychologist who works with families of terminally ill children on occasion I couldn't agree with David N Andrews more.
Being a child and knowing you are dying deserves an angry response. It warrants tamtrums and fear and any other emotion that presents itself. Refusal to acknowledge and "get on board" with this because it is "negative energy" denies the child the right to make choices for their living as well as their dying - "not only are you dying but I the adult will decide how you get to feel and think about what is happening to you!"
@ Quokka:
Agreed.
Woo-meisters - rather than the person EXPERIENCING the illness- apparently know BETTER about how the sufferer should feel. Just like they know BETTER about everything else under the sun.
Declaring another person's feelings or reactions 'in-appropriate' or 'wrong' illustrates solipcism and beliefs of superiority: very common afflictions in woo-topia, I afraid.
Re: Positive Thinking
Barbara Ehrenreich wrote 'Smile or Die' on the topic. She ripped the whole concept to shreds in a very awesome way.
The positive thinking crap is pure victim blaming. Especially drives me up the wall applied to small children (<3).
My uncles second wife (first died of breast cancer) developed breast cancer as well. She always lived healthy, did everything 'right', had few risk factors aside from her mother dying of breast cancer.
She was convinced she wouldn't get breast cancer like her mother. She was devastated when she did despite doing everything 'right'...
And jumped to the conclusion she did something 'wrong'.
BURZYNSKI II:
THIS TIME IT'S PERSONAL
gene-targeted therapy.
Starring Danny Trejo as Doctor Stanislaw "Rock" Burzynski.
Directed by Michael Bay.
[Indoors, dark room: Close-up side view of man's mouth, speaking in a tired and gravely voice:]
"I used to be a calm and peaceful man..."
[Outside, night: Fade to clip of Burzynski screaming in anger while holding up a bloody fist, fade back to mouth closeup]
"...until they came..."
[Outside, day: Burzinski stands on rear of medical supply truck, hurling barrels marked "antineoplaston" at a mob of pursuing fanged cancer patients.]
Denice -- oh, I know about positive reinforcement; it's a hard thing to get away from. You drink some tea, your headache goes away, you might well credit the tea, especially if that's why you took it. That's not what I mean. I mean how when people actually think about it, they like the idea of living in a world where everything happens for a reason, and everyone can totally control it if they try. It takes a remarkable amount of self-delusion for that not to become horrific.
Shay -- glad to see it appreciated. ;-) Marcus Cole rocked.
Make sure you watch part two,and see what the oncologist in Ireland has to say at 6:25.I have much more respect for him than I do Burzynski.
@ Calli;
I think that the belief in a just world can be self-protective: as long as I don't do anyting wrong, nothing terrible will happen to me.
I just suggest that perhaps unrealistic beliefs may come about through the process of learning.
Anymore, I don't think that it is enough to just go after the quacks. We need better mainstream doctors, especially primary care providers. Even mainstream doctors tell patients that they can get cancer by having too much stress. I understand chronic stress may lower one's immune system response, but to tell patients that they will essentially think themselves into getting cancer is inappropriate, I suggest.
I wonder what the medical profession in Ireland would say if they were told someone was coming over to go to St Jude's? I suspect they would not be completely against it...
I just wanted to announce that this week marks the fourth anniversary of Burzynski's initial approval from the FDA for the single Phase III trial so often touted by his fans. it came January 9, 2009.
You know, the trial that hasn't even started accepting candidates yet.
The "midway point" for that trial, when Stan would be expected to release some preliminary findings, was set at 2013.
Happy Anniversary Stan.
I was under the impression a Phase III trial itself hasn't been approved by the FDA, just that Burzynski had gotten a protocol design for a prospective Phase III three trial approved. Am I mistaken about this?
Well, whatever it is, it was granted four years ago.
If it was only a protocol approval, what (and when) is the next step? Does that mean the fabled, mythical, mystical Phase III trial still needs to be approved?
I remember some discussion of this on the other thread that Didy hijacked, but that thread was just too complicated to follow.
@MSII - I wonder how many "patients" have been told they are part of a Phase III clinical trial?
There was a recent case that Orac highlighted here: a 28-year-old woman was told she was "eligible" for the Phase III trial...even though it's only open to children under 18.
@JGC
From an email exchange with FDA's Center for Drug Evaluation and Research:
They can give feedback on specific questions about a protocol design, but they do not approve clinical trials, per se.
As I understand the situation, Stan presented a proposed experimental design for a Phase III trial. The FDA signed off on that, which was enough for the proposed trial to appear in the ClinicalTrials archive.
The next step is up to Stan, but he is not taking it... almost as if all he wants is an ClinicalTrials entry that he can point to while lying to his victims about "FDA approval" and their participation in a real experiment.
I don't suppose there is any reason for Dr B to ever complete any of the trials while there are people out there willing to pay for antineoplastons when it is possible to find anecodotes from patients who received them who are now 'tumour free' Or, willing to pay for the 'hope' of a cure even with a lack of evidence. Completing and writing up a trial would risk exposing the potential lack of efficacy of antineoplastons. Dr B has probably got too much to lose.
Also, shouldn't the FDA be auditing his trials? Or, does this only happen when a company is applying for a product licence or, for a treatment already on the market?
Why does it cost so much when you seem to have to administer the treatment yourself? Is the cost in the training you undergo initially to learn how to administer it, shipping costs? Manufacturing? What? The money raised for treatment doesn't always get spent as was the case for Amelia Saunders (according to the Facebook site). It seems that that money will go to the Yes to Life charity in the UK. Do google them! DC's Improbable Science has an interesting entry on this charity.
What really gets me is that Burzynski supposedly only gets to administer ANPs as part of clinical trials (as I understand it this was part of his deal with the medical board to keep his license). But all of the patient stories talk about receiving treatment not participating in a trial.
To me this says that he's violating said agreement and should have his license yanked.
Here is where our friend Eric Merola makes an awkward and pathetic attempt to intimidate a skeptical blogger by contacting his employer:
http://wp.me/p1gm1e-Fc
Don't worry Orac, no one is going to mistake you for Vincent Kennedy McMahon; HE actually has a Gigantic Pair of Grapefruits! I find it amazing that you can communicate with EM about getting to say what you want to say, but then amazingly can't communicate about not wanting any videos, music, pictures, or whatever else "Conspiracy Theory" misgivings you fear. It's not about "Carpe Diem" for you, it's about "Carpe Don't!!" That's just a "Piss-Poor" excuse!!!
DJT: Of course Orac's urging people not to buy into Burzynski's scam- cause it doesn't work. And by the way, you need to brush up on your latin- Carpe Diem is 'seize the day' not 'buyer beware.'
I wouldn't bother feeding nickels into the Diddleodeon, as amusing as it is to see it whining for attention.
HE actually has a Gigantic Pair of Grapefruits!
"It is a flower of rhetoric culled from the kitchen-garden".
@Don't Know Diddly - My hovercraft is full of eels.
@Politicalguineapig
Carpe Diem was the motto of my high school which they mistranslated as "Seize the Opportunity" perhaps because they though we were too stupid to understand what "Seize the Day" meant.
I guess the Fugs song would have been a hard sell at assemblies and so forth.
Oh joy, Diddling Thomas is back. There'll be giant servings of copy-pasta and word salad alongside my lunch.
Lawrence, MSII - At least two patients that I know of have been told they are in a Phase III trial. Both adults.
So people do all this "research" online on Burzysnki but never encounter the truth about the Phase III trials? It was one of the first things I came across when I started researching the subject. Either a trial is open or not; and the age range of candidates is easy to find.
I swear, people put more effort into buying a car than buying healthcare sometimes.
Maybe it's time for Orac to look around in his own backyard if he wants to take on false hope and medical fraud.
http://med.stanford.edu/ism/2012/march/witteles.html
http://www.theglobeandmail.com/life/health-and-fitness/health/positive-…
LOL Marg...you realize these are examples of SBM working correctly right?
@marg
So, you and judith still trying to scam innocents out of their money, quack?
I was thinking that it's been so cold and dreary...
wouldn't it be lovely if someone dropped in and roused us from our winter doldrums..
and Marg appears.
@AdamG
No, these are examples of underreporting of side effects and of researchers changing goal posts when their experiments don't work as expected. These are examples of doctors and patients being hoodwinked into expecting drugs to act differently from the way they do.
@marg
I looked at the article, and your interpretation is very faulty.
But then again, what would we all expect from a fraud who likes to bilk innocents out of their money.
Regardless of interprestations, what does any of it have to do with Burzynski being a fraud?
Or is Marg jus trying to distract us or change the subject?
Does Marg agree with Burzynski's methodology?
@MSII
Well, it certainly takes a fraud to know a fraud, and since marg is known to be one....
Of course, it could just be her pathetic attempt to derail the conversation, but then again, marg hasn't proven herself to be very skillful in posting.
@Marg - It's clearly wrong for any scientist to publish in a misleading way, falsify the conclusions, or withhold data that doesn't agree with the preferred conclusions. It's too bad that nobody has ever done some sort of evaluation of those kinds of studies and gathered some statistics. It's also too bad that no blogger on the subject of science has ever commented on same. And finally, it's really too bad that Orac has never commented on misleading results that appear in a reputable journal.
And you, Marg, are an example of hoodwinking people into expecting hand-waving to act differently from the way it does, which is not at all.
Let me get this straight, biomedical researchers are criticising biomedical research and publishing ethics (and rightly so) a problem we know about and criticise ourselves (use the search bar Marg) and what this transparency is bothersome for you?
What does this have to do with Burzynski? Are you going to throw your altie sacred cow under the bus by using this to indict his own unethical research and publication methods? Really Marg, help me follow this inept attempt of yours at Tu Quoque fallacy.
@MO'B
I think you may have been a bit too subtle in your sarcasm. Not sure Marg will get it.
@Todd W.,
Sarcastic? Moi? I'm shocked, Shocked!, to find there's sarcasm going on here!
So Marg, what do you propose we do to determine if medical fraud is being perpetrated?
I do agree that it happens.
PGP, Orac is afraid to "Seize the Day" & appear in Part II. Hence "Carpe Don't."
PGP, are you the kind of Cavy which lives in a Cave?
http://en.m.wikipedia.org/wiki/Guinea_pig
I suggest you read my posts on:
http://scienceblogs.com/pharyngula/2013/01/06/lets-make-houston-cancer-…
and report back to us on that Phase III Clinical Trial in China which used Human Urine-Based Cancer treatment.
EP, enjoy the Pricks:
http://scienceblogs.com/pharyngula/2013/01/06/lets-make-houston-cancer-…
Maybe you should stick to sticking a Wooden Nickle between Narad's cheeks: in the end that's up. The other end is in the dirt.
Let's see... who goes running to Pharyngula when in need of attention? Oh, right, the "Guardian of the Poll."
Do enjoy the ride, though.
Oh, man, it's really gone around the bend at Pharyngula. Check out this inscrutable offering.
Damn, I wanted to donate some dough to the St Jude fundraiser but they want a credit card and I don't want to use mine... is there no way to send something via paypal?
At this point I am cynical and skeptical enough of Burzyinski to believe they aren't actually enrolled in trials at all. This is my guess based on patient testimony and marketing materials they have sent out.
It may have something to do with the toothless regulatory bodies...
@Ism quoting the clip
I swear that is word-for-word from one of his other interviews...
@Bob G
Probably because you can't say it's a failure without the results being published... all you can do is say it's unproven.
@Calli
I think positive thinking has more to do with the negatives than anything else. Everyone spends time thinking "what if?" It's far easier sometimes to say "if I'd just done this..." than to think "the universe is random and I had no control". Perfect example is of a car accident, where if you'd just slowed down before the amber lights... It's all a bit 'sliding doors'.
@All
I go away for a few weeks and am saddened to see Squidymus is still here. Sigh... (Can someone inform me about the Pharyngula reference?)
Oh, wait, Marg is back too? Teehee, it's like a reunion! ... A bad one.
What I want to know is why Marg, a reiki proponent, always pops up on Burzyinski threads. There's something fishy about that.
Narad, I didn't expect you to be able to understand:
"Antineoplaston A10 (N-[(3S)-2,6-dioxo-3-piperidyl]-2-phenyl-acetamide) is another glutarimide derivative, originally isolated from human urine. It has remarkable anticancer activity but lacks the toxicity of other common cancer drugs.. It has been suggested that A10 acts directly at the genomic level and alters the cellular responsiveness to steroidal hormones."
Narad,
This is the footnote for the above quoted paragraph:
Burzynski SR: Adv Exp Clin Chemother. 1988, 6:45.
Geez, Burzynski himself!
Actually, the paragraph has two source footnotes: the first comes from someone called Al Harris in a publication called Drugs To. from 1984 that doesn't seem to exist anywhere anymore. The last sentence "It has been suggested..." comes from Burzynski himself in the footnote I provided above.
flip,
He left us in peace for a while and only reappeared a day or two ago.
Squidymus has just dumped his usual mass of irrelevant and unexplained copy pasta there, apparently under the impression that it is also Orac's blog. It's not worth the energy expended in clicking on the link.
When did Stan start selling this crap? His anti-aging line of products is here. Same address as the Burzynski clinic:
http://www.aminocare.com/
someone called Al Harris in a publication called Drugs To. from 1984 that doesn’t seem to exist anywhere anymore.
"Drugs of Today", MSII. They have a website --
http://journals.prous.com/journals/servlet/xmlxsl/pk_journals.xml_journ…
-- but digitised back-issues are not available for dates earlier than 1998.
@Krebiozen
Thanks, I thought it was going to be something popcorn-worthy. :)
KreBlogLyin', is that a dog or fox? Because if it was a fox we'd know it would actually be intelligent & cunning.
flip,
That interview clip that sounds familiar was used in another interview Burzynsi did last summer in an insignificant alternative journal, subsequentally posted on Burzynski's website. Orac ripped it to pieces here.
And here's the part of the interview Stan recycled for Merola:
The cancers have names like breast cancer or lung cancer but what is really causing cancer is abnormality in our genes. Now everybody knows about it, but 20 years ago, very few people realized it. The right way to treat cancer is to treat the genes that are causing the cancer. Do not treat just the name of cancer.
When did Stan start selling this crap? His anti-aging line of products is here.
Obviously it works on himself -- see how dark his hair is, in the interviews!
Something something Shinola something.
"Michael Hamilton
Sales Consultant
MH@BurzynskiClinic.com"
G-d, I hate automatic mailto links.
Nor did I you, dunderhead. It's a passing reference. Where do the footnotes go? Exactly where one might suppose.
But herr doktor, didn't you know that Null and Feldman reported ( Townsend Letter, Oct 2008) that following a lifestyle plan-( including veganism, supplements, exercise etc) can turn darken grey hair and re-grow lost hair?
The author provides proof himself.
Denice, thank you so much for that.
It'll save me so much money rather than buying 'Just For Men'.
I'm now concerned that you good folks will misunderstand this post.
@ Peebs:
Nothing wrong with a fellow dying his hair- unless if he then tells his followers how he got rid of the grey with supplements- which he sells.
And we will never mis-understand YOU.
-btw- I have one tiny white lock on my hairline which has been- variously- beige, yellow, amber, dark brown.. and I've just seen the younger Ms Osborne who does her whole head a light lilac tone: which has me thinking... perhaps.
It's not the gray that's so bad, but the occasional drawn-out yellow. I have but rare silver threads aside from what passes for a beard, but I would take henna over Just for Men any day. It's a mess, but it's a fun mess.
Thanks MSII. My google-fu sucked and I couldn't find the reference.
For a real eye-opening look at the nitty gritty of the Burzynski money-grabbing, check out a new patient listing on TOBPG website. The story of Denise D., unemployed and with no insurance. After she managed to get some of her drugs provided free by the manufacturers (conventional chemo), Burzynski's clinic tacked on a $1500 monthly "case management fee" to compensate for their lost revenues from the drugs they were no longer selling to her.
This story is perhaps the most egregious example so far of the extent to which the clinic goes to ensure their revenue flow.
Oh yeah, forgot the "best" part. When Denise called the clinic to say she couldn't afford the additional $1500 a month service charge, the financial consultant she spoke to callously said "well, we have to survive here..."
Scumbags.
@MSII - I read that listing & it really tore me apart. How this monster (and his equally monstrous staff) can be allowed to continue to get away with this is completely beyond reason.
At BoingBoing
http://theotherburzynskipatientgroup.wordpress.com/2013/01/16/burzynski-patient-wayne-merritts-story/
LD, nice "(photo at left)!!"
But maybe that's why the last name is DITZ!!!
Naray, need I remind you who indicated it was "Inscrutable???"
Diday, need I remind you that it is? You don't understand what the freaking paper is about and apparently think that barfing up anything that shows under "cited by" onto your flip-phone somehow bolsters your embarrassingly stupid efforts.
DJT: Do shut up; she's much smarter than you'll ever be.
As PGP didn't quite get there, I would like to invite you to blow yourself.
Well, as if it wasn't bad enough to insult Liz, he DARED to go on about Kreb's fox.
Big city wildlife are nearly as beloved here as SB bloggers
For shame!
MSII mentioned Burzynski's "Aminocare" range of 'anti-aging' snake-oil treatments upstream. According to BRI's Director of Public Relations (one Azad Rastegar), the Aminocare division has been an integral part of the Burzynski empire at least since 2009 -- it isn't merely one operative gone rogue.
Rastegar was speaking at the 2009 "Cancer Control Society", along with Gerson, Wallach, sundry Laetrile salesmen, and every other low-life cancer grifter you care to think of.
First link borked.
http://www.cancercontrolsociety.com/bio2009/rastegar.html
That's one hell of a lede. He "successfully completed" working for free as an undergraduate and ultimately received a "Bachelor or Arts" [sic] degree?
The sh*t frosting is spread on quite thickly here.
B.A, Business Administration... all the same, innit?
The sh*t frosting is spread on quite thickly here.
That certainly explains why Stan has to charge such astronomic fees... some of the money goes to pay Azad Rastegar to travel around visiting "Breathcare" Conferences to groom the next wave of recruits for the "Currently approved for Phase III Clinical Trial for Antineoplastons treatment" that isn't actually approved..
@Narad
You are too kind - I would invite DJT to experiment with the auto-erotic use of a demolition hammer and a dead porcupine if one is available.
MoroNaradic, PGP, DW, & MA, no wonder people are worried about the educational systems around the world. Y'all are all perfect examples of what's wrong with the education process.
1. MoroNaradic doesn't know how to read or comprehend,
2. PGP, you're obviously more talented than I with your vacuum cleaner attachments,
3. DW is like MoroNaradic & thinks the fox was being made fun of instead LW,
4. MA suffers in the Mental Acuity Department.
@Didymus Judas Thomas: "KreBlogLyin’, is that a dog or fox? Because if it was a fox we’d know it would actually be intelligent & cunning."
@Denice Walter: "Well, as if it wasn’t bad enough to insult Liz, he DARED to go on about Kreb’s fox."
@Didymus Judas Thomas: "DW is like MoroNaradic & thinks the fox was being made fun of instead LW,"
Oh, cool! I'm Krebiozen as well as Lawrence! Pretty soon I'll be every commenter on here, except for the iDJiT, of course.
Link to The OTHER Burzynski Patient Group:
http://theotherburzynskipatientgroup.wordpress.com/
It's been given before but might be overlooked. Anyone considering going to Burzynski should read it. And think about it: in thirty-five years, Burzynski has never managed to competently organize, execute, and report a proper clinical trial. It isn't that hard to do; I know a doctor in private practice who did exactly that, and in three years not thirty-five.
Why would you trust Burzynski to have a real cure, if he hasn't managed to competently organize, execute, and report a proper clinical trial to prove it?
It's always cute when a Yosemite Sam impersonation is trotted out.
@ Narad:
Coincidentally, Mike Adams informs us ( Natural News- "Why collectivism is doomed..") that " You will learn more in ONE YEAR of living on a working farm than you did in four years of college".
Oh, cool! I’m Krebiozen as well as Lawrence!
Narad and I are really each other.
@herr doktor bimler: "Narad and I are really each other."
So I'm not either one of you? Maybe I'm both. We'll have to wait for the iDJiT to reveal the truth
Just wanted to share this nice summary in case anyone missed it from the physician at the end of the Irish documentary, who was described as "the foremost oncologist in the country:
There are as yet no data from randomized trials which confirm what he (Burzynski) claims to be the case, that his treatment which he devised over 30 years ago represents some type of advance on other forms of cancer treatment. I would just also ask the viewers to be aware of a few other things.
We have moved a hugely long way over 30 years in terms of what we understand about cancer. Our knowledge of many aspects of cancer were incredibly primitive then compared to now—huge changes in 30 years, so one would have to have a certain level of cautious skepticism about a treatment which was devised over 30 years ago, which apparently hasn’t changed, which has not been validated by anybody else, and which has not yet been the subject of proven randomized trials.
Or, as someone said so eloquently in another post: "antineoplastons are so 1970s!"
I have been informed that Sean Ó Laighin passed away last night.