After yesterday's epic deconstruction of the latest propaganda-fest from everybody's favorite Leni Riefenstahl without the talent, Eric Merola, on his most admired subject, "brave maverick doctor" Stanislaw Burzynski, I needed something science-based to cleanse the rancid taste of intelligence-insulting nonsense from my mind. Through a quirk of fate that couldn't have worked out better if I had planned it myself, a long-expected investigation of the Burzynski Clinic by the BBC, presented on its venerable news program Panorama. It was entitled, appropriately enough, Cancer: Hope for Sale? Ever since learning that the BBC was working on this back in January or February, skeptics have been looking forward to it with a mixture of anticipation and dread, anticipation because we expected that the Panorama crew would "get it" (full disclosure: I was interviewed over the phone by a producer of the show and exchanged e-mails to answer questions), but a bit of dread because we feared the bane of all news reporting on issues of science and medicine: False balance.
So now that the report is finally out, how was it?
Although it's better than the vast majority of reports on Burzynski that I've seen, I'm afraid it's still a mixed bag. I'll start with my general impression and then discuss some specifics that particularly stood out to me. Fortunately, there are parts of the report that hit home, and hit home hard. Unfortunately, every time I think that Panorama is going in for the kill, the reporter (Richard Bilton) seems to back off. Perhaps it's the editing. From reports that I've had, the producers seemed to "get it," but one wonders if something got watered down in the final edit. Or perhaps it's the story structure imposed on this report, which is simultaneously a "he said, she said" portrait of a patient who believes in Burzynski and think he saved her, two Burzynski patients who died but whose families still express little or no regret over having decided to make the trip to Houston, and one patient who thinks Burzynski ripped him off. Interspersed with these stories is an overarching "where's Waldo?" meta-story of Bilton trying to score an interview with the elusive subject of his report (which, of course, finally does happen near the end of the report), all peppered with brief interviews with experts whose comments are generally critical but often softened with caveats that turn some of the criticisms into mush.
What is simultaneously the greatest strength and greatest weakness of this episode is its relentless focus on patients. Specifically, the stories of four patients are covered: Hannah Bradley, Luna Petagine, Amelia Saunders, and Wayne Merritt. The first three patients were U.K. patients who travelled to Houston to be treated by Burzynski; Merritt lives in Georgia. This focus is a strength, because it provides an emotional hook upon which viewers can hang their attention, and, of course, the reason Stanislaw Burzynski However, it's simultaneously a near-fatal weakness in that the obsessive focus on the patients seems to prevent the report from delving into a lot of issues that are also very important in any discussion of Stanislaw Burzynski. For instance, there is no mention of the recent FDA investigation of the Burzynski Clinic, zero mention of how Burzynski recently managed to beat an effort by the Texas Medical Board to strip him of his medical license by throwing his employed doctors under the bus, and only the most superficial treatment of how in general it is considered unethical to demand payment from patients to participate in clinical trials. No, and there isn't any mention of how the Burzynski Clinic waged a campaign of harassment against bloggers who criticized Burzynski back in 2011. Indeed, one of the victims of that harassment, Rhys Morgan, was interviewed by the Panorama crew, but he was informed that his interview was cut from the final version because it didn't fit the narrative. There is even at least one howler in which Bilton intones that "nobody knows exactly what's in his treatment," when in fact it is fairly well known what antineoplastons are and has been for at least 25 years. All you have to do is to read Saul Green's reports on Quackwatch and in The Cancer Letter from the 1990s.
Unfortunately, the story repeatedly falls prey to that weakness and devolves into, in essence, a "he said, she said" narrative, in which one patient believes Burzynski saved her, the family of two patients who died despite Burzynski's ministrations express no regrets, and only one of the four patients complains that he felt ripped off by Burzynski. The overall impression of Burzynski is not entirely unfavorable. Of the patients, Luna Petagine's and Amelia Saunders' stories are the most heart-wrenching. Indeed, Luna's story was featured last year on a BBC documentary about the Great Ormond Street Hospital, and some excerpts from this documentary are shown to introduce Luna and her story. One of them reminded me very much of the conversation with her NHS oncologist that Laura Hymas recorded and allowed Eric Merola to include in his propaganda piece, except that in video it is so much more intense. In this scene, the oncologist tries to point out to Ms. Petagine that he doesn't know what Burzynski is doing or how to take care of her daughter when she returns. I really felt for this oncologist, too. However, this segment on Luna also highlights another irritating aspect of this report, which hit me over the head in the very next scene, when Ms. Petagine in essence lambastes the NHS oncologists because they couldn't save her daughter's life, saying, "The NHS told me Luna's going to die. This man is telling me that he thinks he can cure her."
The report includes interviews with experts like Professor Richard Grundy of Nottingham Children's Hospital. Grundy points out that Burzynski has not published the complete results of any of his phase II clinical trials. Right after him Professor Peter Johnson of Cancer Research U.K. discussing the importance of reproduction of results. Actually, this is one of the stronger segments in that it points out the importance of publishing scientific results in the medical literature and how that is the key to convincing other scientists of the validity of your work. That was very clear and concise. It's also, unfortunately, simultaneously one of the weaker segments in that it ends up sounding as though there's just no evidence and we don't know about antineoplastons. In other words, it sounds as though they very well could work, if only the clinical trials were done. It's a theme that is repeated throughout the report but that ignores the astounding level of sheer deception that goes on at the Burzynski Clinic, the allegations of overfilling, and how Burzynski has abused the clinical trial process to keep treating patients with antineoplastons without actually having to do the science that any other doctor would be required to do to validate a new treatment. True, not all the doctors who question Burzynski's treatment are that wishy-washy. Dr. Elloise Garside, a research scientists, echoes a lot of the questions I have, such as how Burzynski never explains which genes are targeted by antineoplastons, what the preclinical evidence supporting their efficacy are, or what the scientific rationale is to expect that they might have antitumor activity. (Yes, we're talking prior plausibility, baby!) This explanation was provided right after Bilton and she sat through a screening of the first Burzynski movie, which was a fairly nice touch.
None of this is to say that there weren't aspects of the report that were very powerful and spot on. I just wish there were more of them or that more time had been allotted for them. For instance, there was the discussion of how Burzynski attracts new patients, which led to a trip to a screening of Eric Merola's first foray into medical propaganda; i.e., his first movie in 2010 extolling the glory that to him is Stanislaw Burzynski. There's even a sarcastic little rejoinder about how Burzynski takes his message to the movies rather than publishing in the peer-reviewed scientific literature. Particularly amusing is how Panorama includes a scene from the first Burzynski movie in which Burzynski lambastes the panel evaluating him, saying how he will get his antineoplastons approved all over the world and bring them to justice, while promising the hundreds of patients who died because of them will come back to haunt them until their deaths.
Yeah, Stan's as warm and fuzzy as ever.
Panorama also confirms what skeptics have suspected for a long time now, namely that the Burzynski movie has been very, very effective in attracting patients to the Burzynski Clinic. During an interview with Hannah Bradley, whom we've met before. There's no real evidence that Burzynski's treatment is responsible for Bradley's good fortune in having lived more than two years with her cancer thus far, but she attributes her survival to him. Unfortunately, she is also incorrect when she says that there's no evidence that antineoplastons work or that they don't work. The preponderance of evidence supports the contention that they dont' work, but there is uncertainty, which Burzynski exploits to the max. In any case, as lovely a young woman as I think Ms. Bradley is, the whole segment is painful to watch, as she asks ignorant questions like, "What says radiotherapy works?" When the reporter points out that the peer-reviewed literature says it works, Ms. Bradley says, "But not for everyone," which is technically true but ignores that there isn't any evidence comparable to that for radiotherapy that antineoplastons work for anyone. As much as I like Hannah Bradley and her boyfriend Pete Cohen and hope Hannah continues to do well, I can't let such statements go unchallenged.
Ironically, I can't help but note that Pete Cohen also showed up on the radio to be interviewed by Victoria Derbyshire on BBC Radio 5 Live (at around the 1:44 mark). I can't help but mention it here, because Mr. Cohen gives away several interesting tidbits. For instance, it's very obvious that the Burzynski Clinic is in communication with him, because Mr. Cohen claims that Burzynski is preparing manuscripts for publication and that he has even submitted several to "top journals." He even claims that Burzynski has asked that they be independently reviewed. In doing so, Cohen echoes the claims in some of the Q&A's after screenings of Eric Merola's most recent movie that Burzynski's papers have been rejected without being sent out for peer review. It's also not exactly clear what Cohen means by that. Studies submitted to journals won't be published without going out for peer-review. Maybe he's referring to some of the papers we've heard about from Mr. Cohen and others that were editorially rejected and not even sent out for peer review because the editor either didn't think them appropriate or didn't want to waste the reviewers' time. Mr. Cohen also repeatedly says how he has approached experts in brain cancer and begged them to come out to the Burzynski Clinic to "see for themselves." Seemingly, he can't understand that it is not necessary for a scientist or doctor to meet Dr. Burzynski or visit his clinic. It means nothing. Nada. Zero. Zip. In science, all that matters is what you publish, and Burzynski hasn't published anything other than case reports, tiny case series, and unconvincing studies, mostly (at least over the last decade or so) in crappy journals not even indexed on PubMed.
Without a doubt, the most effective part of the story is the segment in which Dr. Jeanine Graf of the Texas Children's Hospital is introduced. Dr. Graf is the director of the pediatric intensive care unit there and has taken care of lots of Burzynski patients, as her hospital is "just down the road" from the Burzynski Clinic and these unfortunate children are brought to her hospital when they decompensate. Indeed, coupled with this segment is an interlude where Luna Petagine's mother complains that the staff there know and recognize Burzynski patients (and, she notes, hate the Burzynski Clinic). Particularly damning is how Ms. Petagine said that the Texas Children's Hospital Staff "were always cleaning up Burzynski's messes." Luna was brought to the Texas Children's Hospital during her time in Houston, and the staff there recognized right away that she was a Burzynski patient because they had seen so many similar patients suffering the same complications before. It was also clear how much contempt the staff there had for the Burzynski Clinic. If there's one thing Panorama did right in this report, it's showing how seeing so many already dying children show up in our ICU because of hypernatremia due to antineoplaston therapy will do that. Perhaps the most devastating part of this segment was seeing Dr. Graf stating, point blank, that she's never seen a Burzynski patient survive. True, she does point out that patients don't come to her until they are in extremis, but the fact remains that she's never seen any of them live.
It's a sad and devastating segment.
Unfortunately, during the most critical part of the story of all, in which Bilton finally "finds Waldo" and is granted an audience with Stanislaw Burzynski, Bilton came across (to me, at least) as rather unprepared. Fortunately for Bilton, Burzynski was his own worst enemy, smirking and behaving in his usual arrogant, dismissive manner to any sort of challenge. (You can see a sample of it here, towards the end of the promo.) If Burzynski were a bit less full of himself and the greatness that he thinks he possesses, he could have wiped the floor with Bilton. As it is, the interview was pretty much a draw. Burzynski claims that antineoplastons can cure cancer, but not for everyone. Burzynski smirks when asked how many patients he's treated and how many have survived, dodging the question by saying that the FDA won't let him until he's published his results. Bilton tells him that's not true; the FDA has told him that Burzynski can tell him as long as he doesn't promote antineoplastons. Burzynski asks Bilton why he doesn't have a letter from the FDA. Burzynski dismisses Bilton with dismissive retorts like:
You look like a bright man but you’re asking me the same question again and again. Are you catching Alzheimer’s disease or what?
As I said, Burzynski's arrogance, dismissiveness, and condescension make him his own worst enemy. Bilton was very, very lucky.
Burzynski also pulls out the old trope that, if the FDA has been letting him use antineoplastons for 20 years in clinical trials if they weren't safe and potentially effective, that the FDA wouldn't let him "sell hope without evidence." (Those of us following Burzynski for a while know, unfortunately, that that isn't necessarily true.) Burzynski then promises that antineoplastons will be approved "soon" (they almost certainly won't), after which he goes on to repeat the same refrain he's been repeating for the last decade or so about how he's on the verge of publishing all the results that will convince everyone. "Just you wait," Burzynski is saying, in effect, "I'll show them. I'll show them all!"
One notes that we're still waiting.
Ultimately, the Burzynski Clinic did release some results, stating that 776 patients with brain tumors were treated in trials and that 15.5% have survived five years. Of course, this is an utterly meaningless factoid (if factual it even is), because we don't know what kinds of tumors, what gradess, how they were treated beforehand, or any other confounding factors. Burzynski needs to publish, but I highly doubt that he will, at least not in a form that is informative to real oncologists.
Overall, the producers of Panorama did a decent, but flawed, job of taking on Burzynski. Part of the problem might have been that a half hour is just too short. It's really difficult to explain 36 years of history and the ins and outs of Burzynski's battles with the law and patients in just a half hour; so apparently Panorama didn't even try. That left it asking the question at the beginning of how Burzynski has gotten away with this for so long but not really even trying to give an answer at the end. It also might be that expectations were too high in the skeptic community, myself included. While I can understand the decision to concentrate on patients as the center of the story, the problem with that decision is that it it's a well-trod path that crowds out too many other important issues that ended up getting short (or, far more commonly, no) shrift in this Panorama episode. In the end, Panorama played it safe, and its report ended up being fairly unoriginal and guaranteed not to be the definitive look at Burzynski. It's a very good thing that Panorama decided to shine a light into the recesses of the Burzynski Clinic, but at best it's a first, flawed step. As good as much of this episode is, some of it is not, and I fear that an opportunity has been lost.
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The general reaction as it was airing, it seemed to me, was horror on the part of the British public, so I think there will be a disconnect between how most people will see the episode and how skeptics do.
I was surprised that it wasn't one of their occasional hour-long episodes. Maybe it was originally slated to be, and then cut down, hence all the cut segments?
This was actually one of the better episodes of Panorama. What was once a hard-hitting, investigative news programme, is now usually nothing more than half an hour of vague, watery pablum. That this episode contained any actual experts at all is what made it an unusually good effort. Also, the fact that they chose to go after an actual 'bad guy' rather than demonising or scapegoating vulnerable minority groups is a welcome change. Some of last year's episodes were basically thirty minutes of govt. propaganda.
Pete Cohen is barking up the wrong squirrel with his idea of trying to convince actual oncologists by taking them to the Ant(ineoplaston) Farm
. That's what supporters don't get. Science makes no character judgements or snap inferences. The cuddly, avuncular, gentle giant peddling snake oil, and the flint-hearted, puppy-munching, baby-punching fiend who can prove that he can save lives are not scientifically judged by the content of their characters, but by the content of their peer-reviewed, replicable research.
Mr Cohen can't seem to grasp that people aren't ignoring Scamleys "research" because they don't like him, but !that they don't like him precisely because of his research, or lack of, and the way it harms people.
. They're pissed off because he rides roughshod over the lives (and bank accounts) of the desperate. He could be the sweetest, kindest old man on the planet, but it wouldn't make him any less morally bankrupt.
I'm fairly pleased with how it turned out. A credible effort with several well-spoken experts who did an excellent job at critiquing Burzynski's claims.
Never underestimate the power of these sorts of documentaries. In 2010 the BBC Newsnight program aired an expose on companies selling pseudo-scientific and ineffective bomb detection devices to the Iraqi government. Last month the chief player in this racket was sentenced to 10 years at the Old Bailey. We can only hope.
You know, given the "craptastic" bad science that still manages to get published nowadays, how can Dr. B make any sort of excuse that he's been "unable to publish?"
Hell, there are dozens of "pay to play" medical journals, with fairly lousy peer-review standards.....he could just publish away...maybe his results are so bad that not even paying would get his stuff through the "shinning the turd" process.
@Lawrence - Exactly. Hell, there's nothing stopping him publishing his own journal, is there? He could rope in any supporters to help with capital (why change the habit of a lifetime?) and publis/distribution
I had all the same misgivings that you did about this programme, Orac. I felt that they had definitely pulled their punches in places, had fallen prey to false balance, and had probably taken a decision that minimising the risk of a libel suit should take precedence over exposing just how big a crook Burzynski is.
However, then I saw the reaction on Twitter. Watching the #burzynski and #bbcpanorama hashtags just after the programme aired was a truly heartwarming sight. The audience, at least the subset of the audience minded to tweet about it, had absolutely got it. The sentiment was absolutely overwhelming: the British tweeting public had seen this film, and were left in no doubt that Burzynski was a crook.
I don't know if the people who tweet about the programme are a representative sample of the audience in this respect, but if they are, then I think the programme, despite its flaws, was a great success.
Peer reviewed cookie, please.
Have you guys lost your minds? There is one MASSIVE flaw in your argument. They aren't offering Anteneoplaston treatment at the Burzynski clinic! Targeted cancer therapy yes, Anteneoplastons no. Do your homework boys and girls.
The good old British "tweeting" public eh Adam, truly a cast iron representative selection of the population.
Do you know what makes my blood boil, that skeptics and bloggers who have nothing better to do with their time other than refer to people like me (GBM 4) as "vulnerable". Arrogant is not the word! I'd like someone to explain to me why exactly I am vulnerable as a GBM stage 4 patient. Limited time yes, but any one of you may come across that problem crossing the street or driving to work today! I've been "vulnerable" every day for the last 15 years sat at the end of a runway with 2 big Rolls Royce engines strapped to my backside.
Programme a great success? What you have is tunnel vision! Have any of you considered what you are writing here may very well come back to haunt you if Burzynski's data is published?
I think that it is likely his data will be published and I hope it is proven as an effective cure for cancer FOR SOME. It won't work for all but nor does anything else.
Thanks
Martin if they don't do anteneoplastons what the hell is going on at around 21.15 of the Panorama programme. They seem to be manufacturing a hell of a lot of the stuff.
Heh. Taking into account his publishing history (what it is? three decades? - of pretty much nothing) I think it's pretty safe bet that it won't.
Martin Vizzard @9:
You personally may not be vulnerable. Other people, however, are.
Many people with terminal illnesses are desperate and grasping at straws and would do anything for a cure.
People like Burzinsky abuse this by offering false hope, scamming them out of their money and making the time they have left miserable when they should be spending it in a way that makes them happy.
Burzinsky does the equivalent of some guy conning an old woman out of her life savings by pretending to be her grandson. Only worse, because he convinces people to forgo actual treatment that is proven to work.
I SAY AGAIN.
YOU CANNOT GET ANTENEOPLASTON TREATMENT AT THE BURZYNSKI CLINIC AT THIS TIME!!!!!
How do I know, because I asked myself in person at the Burzynski clinic last Tuesday. I asked if it was available and was told from the horses mouth in no uncertain terms that it was not. Just incase some of you want to try and question my motive or agenda here, my name is Martin Vizzard, I'm a 38 year from Manchester UK and on 15/5/13 diagnosed with GBM stage 4. I came to the U.S because I was interested to discover if gene targeted cancer treatment (something not available in UK) could help. I have had my brain biopsy analysed and have an over expressing HER2 gene. I came here of my own free will understand there are no guaratees and my wife and I are happy with what we are paying, and have set down what service we expect. It's all very simple for the organised! I can have my brains blasted out and take Themozolomide when I get back if this doesn't work! Not that the Harley Street Clinic said that will do much other than an extra 3-6 months.
Back to the programme, basically what you are saying is this is a very interesting documentary about a doctor who is manufacturing a product he is not doing anything with? Now that's down to you skeptics to "deconstruct" why he may or may not being doing that (manufacturing). The fact is I am here in Houston and being treated by them and was told it is NOT available to ANYONE. It's a non story!
The reason I left the UK private system was because there are no options of targeted cancer therapy. I could have gone anywhere, I came here. Everyone is very nice and we are all open and honest about my predicament.
@puppygod: If he's manufacturing it but not using it there's no need for you to get so excited.
@pris: Please explain why other people are vulnerable and you feel placed to talk about mental state of anyone other than yourself?
Thanks
Sorry @puppygod that was supposed to be for @wrysmile!!
@Martin - except it has been available for the past three decades, used by an unknown number of patients (unknown, because Dr. B doesn't publish his studies), with unknown effect, again, because he doesn't publish his studies.
As for the "Targeted Gene Therapy) - there is also no evidence that what Dr. B does is a) Targeted b) Gene Therapy or c) Effective.....
So, get off your high-horse and start demanding real evidence from Dr. B, because his platitudes are going to kill you.
Martin, I'm sorry to tell you that what Burzynski claims is targeted cancer therapy is unlikely to be efficacious either.
@Martin - and I would suggest you read the stories posted over at "The Other Burzynski Patient Group" - as it includes a number of, now dead, patients who were on the "Targeted Gene Therapy" - which is nothing but an untested mix of various Chemo drugs.....
Is that really the way you want to go?
I watched the program with someone unfamiliar with the saga of Stan and both of us were left reeling at the end. In a weird way the fact that it pulled its punches and gave Burzynski every chance to offer a rebuttal made it all the more damning than a straight take-down. They gave Burzynski enough rope to hang himself, which he definitely did during his interview at the end - arrogance personified. His body language and demeanour really gave the impression he couldn't care less about his patients. This section coming after the interview with Dr Graf from the Texas Children's Hospital really drove the point home. The stark contrast of the arrogance of Stan with compassion of the Doctor who has to clear up the mess he leaves behind says more to the lay person than any academic debate on whether he publishes or not. I think this is where the reaction on twitter stemmed from.
One thing that really stood out was the fact that he now uses the defence that he is working with the FDA approval process and is straight-jacketed by their regulations, rather than being persecuted by them. From a narrative point of view he is running out of places to hide. Hopefully there is an end game at play and his practicing days are numbered. Kudos to Orac and all the dastardly Sceptics for keeping a constant spotlight on this story. Just a pity it has gone on for so long.
@nastylittlehorse: Please elaborate using the details of my brain biopsy and my current medication.
@lawrence: I'm dead anyway my friend and just so you know I intend to be a nasty ass ghost so play nicely! At least I gave it a shot rather than putting all my eggs in the radiation
and Themozolomide basket.
I posted this the other day so if I'm repeating myself please accept my apols but it depends on how you are wired up. I have spent the last 15 years circumnavigating this planet as a captain, flying a beautiful aircraft quite possibly with some of you here down the back. For those of you about to embark on your holidays, you may be relieved to hear that if (for example) we have some major catastrophic failure mid Atlantic or way North over Canada then the rule book go's out of the metaphorical window. What you do is in the most urgent of cases is what is needed to be done to survive. Some survive, some don't that's life. However, you try everything no matter how untried it is. There are MANY examples in the flying world of how a proven method of operation has resulted in multiple fatalities and the unproven complete success.
I am far from saying aviators are superior creatures, however the medicine industry (at least in the UK) did adopt some of our most "basic" procedures so we must have been doing something correctly.
@Martin - it is certainly your money & your right to do what you will for your treatment. Of course, if you go to Dr. B, all you are going to get is a mix of untested chemo drugs & no actual evidence to show that it works.
You know, there are great Cancer hospitals in the States, even some right there in Houston. You might want to check them out first - at least they publish the results of their treatments, unlike Dr. B - so don't come here criticizing us for holding him to the same standards as every other Cancer researcher in the world.....
@Martin
Orac has done several dissections of Dr. B's ideas of targeted therapy. Perhaps take a look back through the blog if you want to read about them.
I wish you the best of luck, and I wholly understand that you would try anything you could, but I think there are probably better things to do with your money than throw it at a man with no record of publishing his results, let alone a proven record of actually helping anyone.
Your last paragraph (in my opinion) is exactly the problem and exactly what you clearly didn't grasp in my last post. And by the way I am free to express my own opinion on this subject just as you are, so don't tell me where to go and what to do. The undertones in your post speaks volumes.
Let me ask you, would you like me to start researching mid Atlantic with you and your family on board when the decision I make could end in disaster OR b save you all? No matter how improvising one has to be, you do what is needed to save life. If at the end you cannot then you cannot. At that second when the problem (whatever that example may be) occurs your fate is sealed.
You seem to have skimmed over what I said originally.
I was sat in one, if not the most prestigious clinic in London to be told I would receive standard treatment. I will try other methods then standard treatment, what's the big deal. At least I have people who seem half interested in what's making my cancer tick and I did not get that in the UK.
There is nothing advanced or complex about what I am doing and I know FOR A FACT I am getting what I would get elsewhere because I've checked.
So basically your problem is
A) Burzynski is making Anteneoplastons but not using them
B) Money
@Martin - for a seemingly educated individual, you're really not getting our criticisms......
Dr. B has been treating patients for over 35 Years now - in all that time, he has not proven (or fully published) his results, yet he continues to charge ludicrous sums of money to desperate people.
It would be easy for him to get us all to shut up. Just publish the results. Is that so hard? And why should he be treated any differently than anyone else that is pushing a Cancer treatment?
If you think Dr. B & his staff are interested in anything other than how long you can pay for the "treatments" you really are fooling yourself. Again, you really should read the patient stories available at "The Other Burzynski Patient Group" they speak volumes as to the efficacy of his treatments.
Martin, check out this page under SOAH Complaints for Burzynski, for the "appropriateness" of the other anti-cancer drugs that he prescribed for a variety of types of cancer.
http://reg.tmb.state.tx.us/TMBPublicWebSite/BoardOrders/ViewBoardOrders…
I'm sorry that you have been diagnosed with cancer. I'm also sorry that you seem to think that your experience as an aviator in any way qualifies you to understand oncology treatments.
BTW, Burzynski has a slew of employees who cruise the internet for blogs written about the Clinic and Burzynski's "gene targeted therapies"...so he already knows you have a bundle of money to pay for his "treatments". Rest assured, he will string you along until your financial resources are depleted, prescribing the most expensive "traditional" anti-cancer drugs...whether or not those drugs have proven anti-cancer properties for your type of cancer...and, whether or not there are published case studies that show effectiveness when used as an "off label" treatment.
You're just lining the pockets of Burzynski.
@Martin Vizzard
There are a number of cancer institutes around the states that are doing clinical trials (i.e., experimental treatments) for various cancers, likely including yours. The difference between them and Burzynski is that they will not charge you for the experimental portions of the treatment. They also publish their data, unlike Burzynski.
Please understand that when we advise you to go elsewhere it is not because we don't want you to try everything possible, but that we want you to try those things that a) have an actual chance of working and b) are ethically run.
As for myself, I truly hope that you fare well, regardless of what you try. But I also hope that you will direct your efforts to areas that are more promising. To use your flight analogy, try adjusting the flaps (i.e., legitimate research centers) instead of hopping around the cockpit on one foot while rubbing your belly (Burzynski).
@Martin:
"At least I have people who seem half interested in what’s making my cancer tick"
Has it occurred to you that that is exactly what Burzynski wants you to think? In reality, all he's interested in is your money. If he were truly interested in cancer, he would participate in the scientific method.
I appreciate that it must be devastating being in your position and hearing doctors telling you that there's little they can do for you. It's absolutely not what you want to hear. Burzynski understands that. That's why he's prepared to tell you "yes! I can help you!", even though he has to be completely dishonest to do so.
Sometimes the truth is unpalatable. But in the end, it's always better to face it.
Martin - you are receiving standard treatment. Burzynski's "targeted therapy" is nothing of the sort, it's just a cocktail of the same chemotherapeutic drugs you can get here, in the UK.
Oh, and there's almost certainly some phenylbutyrate chucked in. Have a guess what that is? If you are on that, then I can tell you that you're paying way over the odds for it.
The only reason antineoplastons aren't available at the moment is because the FDA have finally stepped in. If Stan had his way he'd still be selling his stinking bags of false hope to dying children.
Also, I'm not quite sure what your history as a pilot has to do with being able to tell if you're being swindled. I think I'll trust the oncologist and the assorted science professionals on that one.
I know it's hard to come face to face with your own mortality, and harder still to think that the "treatment" you've been sold (at enormously inflated costs) is a con, but don't shoot the messenger. I hope you're one of the incredibly rare lucky ones who escapes this experience alive.
Martin, we all understand that you feel angry at being told you're probably making the wrong decision. As a highly qualified professional who is daily responsible for peoples' safety, you prefer to think that you make the right decisions all the time. And, when you're piloting an aircraft, you undoubtedly DO make the right decisions. After all, that's what you spent years being trained for. It's your job and you're right to be proud of your skills.
However, you're not medically trained; in the field of medicine, you have to take the experts' advice and guidance. The writer of this blog is an expert in the field of cancer - he's a cancer surgeon and researcher, with at least as many years of training and practice in his field as you have in yours. Why can't you trust his judgement in the matter of Burzynski's treatment?
Martin, the reason they are not using the AP therapy right now is that SB was allowed to use them exclusively for clinical trials - something he's done for decades now. It has been noticed on this site before that a lot of his clinical trials seem to have disappeared from the clinic's website, probably for legal reasons. He might just not have any FDA accepted clinical trials left to enroll people in to legally use the AP.
If you truly believe in is you can have your UK practitioner give you phenylbutyrate, that's one of the 2 compounds he seems to like. It's an orphan drug, and costs about $60 a kg, so you'll be getting a slightly better deal than with the B clinic.
Martin,
In the event of an unexpected midflight emergency, I'm sure you make some assessment of the likely efficacy of the "everything" you try "no matter how untried it is". From what I have read, most of Burzynski's successes are the equivalent a passenger desperately flapping his arms during an engine failure, and then claiming he saved the day, when it was actually down to the skill of the pilot performing an emergency landing.
I doubt there is very much any US hospital can do for you that the Radcliffe or the Royal Marsden couldn't do on the NHS. If you want US treatment, you would be far better off going to the University of Texas M.D. Anderson Cancer Center than Burzynski's clinic, or to the Australian surgeon Orac mentioned.
To be clear, the Australian surgeon isn't in the US.
Yes, Mr. Vizzard, we know that. However, when the FDA put a hold on antineoplastons at the Burzynski Clinic, it allowed Burzynski to keep treating clinic patients who were already receiving antineoplastons. It only dictated that he could not enroll any more patients in clinical trials and could not start treating any new patients with antineoplastons. That's still a lot of antineoplastons. I do admit, however, to some surprise that Burzynski's manufacturing facility is still apparently going full steam and producing 300 L of antineoplaston solution a day. I would have thought that the demand would be steadily falling since the clinical hold was placed on antineoplaston use back in January.
I'm sorry you have cancer. I really am. But I highly doubt that Burzynski really cares all that much about what makes your cancer tick. He's just good at using the latest buzzwords in oncology to put a glossy sheen on incompetently administered chemotherapy.
Look at it this way. Despite his presenting himself as being some sort of genius who dreamt up the idea of cutting edge gene-targeted therapy, he is not. He is a guy in a clinic who uses a commercial test from Caris that anyone else can use if he wants to. He then basically mindlessly does what the test tells him, even though there is as yet no good evidence that using the test to guide therapy improves outcomes, without considering synergistic toxicities that could result from throwing together various witches' brews of very expensive targeted drugs willy-nilly just because the Caris test said the tumor might be responsive to individual drugs in the cocktail.
Real cutting edge researchers don't do that. They develop their own tests. They or their collaborators take next generation sequencing results and interpret them themselves to come up with new therapies. Burzynski is about as far from "cutting edge" as you can be.
As for his antineoplastons, they're a 46 year old idea (at least) that he's been treating patients with for 26 years and doing trials on for nearly 20 without publishing any complete clinical trial results. He's had more than enough chances to prove they work. Indeed, in the late 1980s and early 1990s the NCI bent over backwards to try to help him determine whether they work but failed because Burzynski was too intransigent to cooperate and collaborate.
Martin,
I don't know what kind of airliner you drive, but with a good altitude at flameout, you may be able to glide for a hundred miles. That doesn't give you a whole lot of time to think about it, and all the time you're losing options along with your momentum. Cancer, meanwhile, seldom kills people that quickly. A day or two to review the literature will not usually affect the outcome. So I'm not really sure you picked the best comparison there. Cancer treatment, even for advanced cancer, isn't usually a panic-mode situation.
You are definitely entitled to your opinions, and your choice of treatment. But so is everyone else. You will encounter people who disagree with you and who may even think you have made a poor choice; try not to take other people's opinions too personally. It'll go a long ways towards getting your own opinions respected.
It is true that Burzynski has never published results from his clinical trials of antineoplastons nor from his targeted cancer therapy. Targeted cancer therapy is actually offered by many clinics; Burzynski has never adequately explained what makes his different. He claims it's different. He just doesn't really explain why.
@Martin - if you read only one more site, then read this:
http://burzynskiscam.com/
That covers the experience of someone who went to the clinic expecting cutting-edge targeted therapy.
BTW, I tend to think of Burzynski as a modern version of Dr Brinkley, though Burzynski is more qualified and probably directly kills fewer patients than Brinkley did. His marketing practices are eerily similar, and like Brinkley, he has a devoted legion of fans who are convinced the he helped them or their loved one. I doubt he'll get as far as Brinkley did; few quacks are so bad that shutting them down eventually requires creation of a new agency (the FCC) and an international treaty. He was a spammer extraordinaire, long before the Internet, blasting radio waves from Mexico so powerful you could pick them in Canada. He'd have loved working with someone like Eric Merola.
@Martin. I too am stage IV (but with renal cancer). I used to fly planes as well. My drug therapy has grounded me - thanks to the FAA which appears (on the surface) to be more concerned about my health than the FDA - at least when it comes to Dr. B.
If you are truly willing to go slightly outside the box I suggest contacting Dr. Thomas N. Seyfried up at Boston College. Read his book, "Cancer as a Metabolic Disease" wherein he describes both the theory and ongoing clinical trials that have resulted in some remarkable results for GBM patients.
Thanks for that Neil. I'll certainly have a look at that.
I can tell you this Adam, for the brief period I saw Dr Burzynski he said nothing of the sort. He never said he could help, he said there are drugs which MAY help me but it was by no means guaranteed. You all seem very interested in all things factual so let's keep it factual. He pointed out to both me and my wife I am in a very bad position and he came up with a very clear plan to try the FDA approved medication based on my biopsy but if that didn't work " i needed to return straight home for radiation" That is word for what I was told. Yes, disappointing to be clocking out at 38 (hopefully 39) but I can assure you I'm not devastated. I'll let you into a little secret, it will happen to you all as well. It's just how you deal with it!
I was offered Standard treatment ONLY in the UK as a private patient of the Harley Street Clinic. This is what I am annoyed about. Come on boys, think outside the box.
I am taking FDA approved cancer drugs in the States. Also just as an aside I am absolutely stunned that educated people will get on a public forum and say that already approved and widely used cancer drugs DO NOT WORK! Please don't second guess what I'm taking, it's all approved and being used widely.
You are correct I am not trained in the field of medicine. It is even more complex than the basic situations I have described to you. This in turn would demand a more inventive solution than "standard care". I said this on an earlier posting but I was told anything other than standard may "harm" me. Hmmm bit late for that.
Also is anyone interested in how my GBM was found? I have an acoustic neuroma treated with Gama Knife in 2010. Glioma missed in 2011, 2012 and finally picked up on 2013 scan. Right to question the medical profession? I'll leave that open.
@Martin
Nobody is saying that approved medication doesn't work (well, except things like phenylephrine...), just that it is very unlikely that Dr B has anything useful to give you here. If you feel the UK system has failed you and you could get better treatment in the US, then why not engage withg the mainstream US system instead of someone who shows all the signs of being a quack?
You have already had Charles Teo suggested to you.
Martin, you don't seem to be getting this, but I know that there's bound to be cognitive side-effects with your type of tumour, so I'll explain it again.
All you are getting at Burzynski's "clinic" is standard chemotherapy. That's it, that's all, end of. It's bog-standard chemo, the same stuff you could be prescribed by any oncologist. The only differences are that Stan isn't an oncologist, he's using the drugs off-label and apparently at random, oh - and he's charging way over the odds for them. Getting cancer treatment from a noncologist like Stan is like going to your dentist for a broken leg, then being charged two grand for him trying to repair the fracture with dental amalgam.
The problems with his approach are legion, but one of the most common results of being prescribed his Chemo Colada is an ineligibility to enter into any other clinical trials run by actual oncologists.
You're not the first person who's said "Chemo? I don't want that! I'm going to fly across the world to get Burzynski's 'Gene-targeted therapy' instead", without realising that chemo and GTT are the same thing. Sadly, you won't be the last.
WRT costs - he overcharges for every drug he prescribes. His phenylbutyrate costs about $300 a bottle at any pharmacy, but his patients are only allowed to buy it from him for thousands of dollars. One woman got a drug company to waive the fees for the chemo that Stan was using on her, and had them shipped directly to her. Guess what? She was still charged tens of thousands ed dollars per month for "case management" and "drug storage and administration", even though they were neither storing nor administering the drugs.
Sorry, but it's a racket. They'll wring you out until you're dry, and then throw you out into the street.
There are only two possible scenarios with regard to Burzynski.
1. He has the cure for cancer. It's effective against a number of cancers, but he won't publish anything that will allow the scientific community to replicate his success and develop treatment programs that will save lives. He's keeping it to himself instead and denying the chance of a cure to millions of people, forcing dying cancer patients to spend their final months schlepping to Texas.
That would make him an amoral scumbag.
2. He knows he's lying and that his treatments are bogus, and that's why he won't publish trial data and commence Phase 3 trials. Instead he's stringing along the families of terminally ill kids (some of whom are only infants), and he's fleecing dying adults up until the moment of death, knowing that it's all a sick lie.
That would make him an amoral scumbag.
Oh, and BTW, there are no "boys" here. Just grown men and women. Some are scientific/medical professionals, others are just lay people, but we're brought together by our desire to stop charlatans like Burzynski taking advantage of the desperate and the dying. You're not telling us anything we haven't heard before, and we all hope you'll survive your brush with this conman.
And I thanked him for the suggestion. Already in contact and MRI scans on the way to Oz.
@Martin
If you were told that there are no ANPs involved, then it would appear that SB is lying to somebody. He's telling his patients "no ANPs" (according to you), but telling the medical community that ANPs are the answer, that he's been doing successful trials with ANPs and he's ready to publish and he has all the answers. Also, if he's not using ANPs, why is his website plastered with ANP propaganda and studies that he has done?
If I were you, I'd go down the road to Texas Children's Hospital and see some of his ex-patients for myself before committing myself to his hands!
"... 776 patients with brain tumors were treated in trials and that 15.5% have survived five years."
Hmmmm - Is that better or worse than the Gerson protocol?!
Elburto, how can you possibly make any comment on the cognitive impact my tumour is having? You are just guessing in a pathetic attempt to strengthen your arguement. You know nothing about size location etc.
What I am getting here is not standard in the UK. How many times do I need to repeat that? It may be standard here but not at home and they point blank refused to do it. Also you do not know the exact medication I am on OR if this is the same as I would get in the U.S mainstream system. All I would say is I am a VERY proactive person and check everything, then check again.
Just grown men eh. That made me laugh you thought the need to point that out. Embarrassing.
As for the last bit, you clearly have zero sense of humour and frankly what you posted was embarrassing.
Let's see.....776 patients.....$100k a pop......that comes to $77,600,000.
$77 million???
No wonder the guy has a house that looks like Wakefield's.
There's women here too, you know. Interesting you left that out. You're the one who called us all 'boys,' remember?
I would keep very detailed records of all of your financial dealings then. Make sure you get hard copies of everything as each document is issued. Burzynski is notorious for financial trickery:
http://theotherburzynskipatientgroup.wordpress.com/2013/01/18/burzynski…
Adrian,
Just to clarify what I said earlier. I have been told very clearly that Anteneoplastons are NOT available at the Burzynski clinic.
The inference I was making earlier is that in my opinion he is continuing manufacturing them for a reason. That reason I do not know. I'm not sure why that would be a lie. He clearly believes in it but and is "selling" it to the medical community but not administering it to new patients. Big difference.
I'll let you guys (happy elburto) slog it out here or in the medical journals as the the effectiveness of Anteneoplastons. I admit I'd like to see some more numbers, we'll see I suppose.
He can still use phenylbutyrate, though, which is in effect "AS2-1."
Wow, a lot of sense of humour failures here. Adam, it's not about the money. I paid a lot of money for private treatment in London. Basically it was crap.
Checking. I'm not talking financial.
@ Martin: Elburto is one of our most respected "RI Regulars", who posts from the U.K., and is one of our "experts" about the NHS.
I believe you stated up thread that you are seeking treatment (a "traditional" anti-cancer drug?), that is not available in the U.K. My question to you would be, why did you chose Dr. Burzynski, who is not a trained oncologist, who has no hospital affiliations whatsoever and who...will get those "traditional" anti-cancer drugs from his family-owned Southern Family Pharmacy/Southern Family Pharmacy IV Infusion Company...at inflated prices?
If there is such a "traditional" anti-cancer drug that is licensed in the United States and not in the U.K., every oncologist in the United States who is affiliated with large cancer treatments in the United States, can easily prescribed that drug and will not charge you at exorbitant prices.
Elburto also mentioned a woman who successfully sued Burzynski (Lola Quinlan), to recover damages for the poor quality care she received and for using her as an ATM...depleting her life savings ($60,000 USD)
Scroll down to see the lawsuit and other lawsuits brought by patients of Burzynski:
http://josephinejones.wordpress.com/2012/04/29/if-the-media-care-about-…
Sorry, I must go offline for now.
@Martin - then you'll enjoy paying even more for crap treatment here in the States....have fun!
Narad, is that medication illegal in the U.S?
Nasty ghost Lawrence! I've told you already
@martin
The MD Anderson Centre (Houston) is world famous for all the right reasons. Like the Starship Enterprise compared to Burz's broken horse cart.
Please check them out first. Good luck from a fellow Manc.
PS. Burz would not be allowed to do what he does anywhere but Texas - and maybe Nigeria. He also claims to have invented anti-cancer toothpaste and miracle anti-aging cream... Total charlatan.
Martin, you saying that the treatment you are getting is not standard in the UK is like saying deploying the landing gear during cruise isn't standard for pilots.
Burzynski uses known chemotherapy agents in a way that has no justification and charges a mint for the privilege. Unless the clinic has changed its SOP you can also expect him to disclaim any responsibility for your treatment if anything goes wrong (see reports on the clinic's past legal troubles).
No, nor did I suggest that it was. Sodium phenylbutyrate is an orphan drug, and it's orally metabolized into PAG ("AS2-5") and PA, which in combination are "AS2-1," viz., "antineoplastons."
I'm not a man Martin, and I am British, not American.
I know what Burzynski uses because that information is available all over the place, posted by hopeful patients. It's been discussed here on this site too, and others. It. Is. Chemotherapy,
You could have asked:
-Maria V
-Janet E*
-Kathy B
-Kenneth J
-Denise D
They're all dead. All victims of Burzynski's lies and his "Gene-targeted therapy' scam.
I notice you've nothing to say about the woman charged tens of thousands of dollars for drugs she'd obtained for free from 'evil' Big Pharma.
Are you getting sodium phenylbutyrate as part of your "treatment"? You can get that over here for standard prescription cost, about £8**
*Janet's husband Dave was doing exactly what you're doing now. Defending Burzynski to the hilt, railing against actual oncologists, claiming that Burzynski had all the answers to his wives problems, and claiming that anyone who was against Burzynski was a shill, or evil, an agent of Big Pharma, trying to hide the truth, etc.
Now he's a widower. A penniless widower, who spent his wife's last months chasing a fantasy and being force-fed lies
Here he is in the same position you're in now:
skepticalhumanities.com/2011/11/26/stanislaw-burzynskis-public-record/
(ctrl+f for the word 'Janet')
They comment for a while, insisting that Janet is healthy thanks to the GTT.
Here's Janet's story:
theotherburzynskipatientgroup.wordpress.com/2013/05/17/burzynski-patient-janet-e-s-story/
We just don't want to see 'Martin V's Story' on TOBPG. None of us know you, but we don't want you or anyone else to throw every penny of your hard earned savings making Burzynski richer, while leaving your family grieving and destitute. It's so sad to see yet another obviously intelligent, hard-working person being victimised by someone who's either holding back the cure for cancer, or is just pretending that he is, for financial gain.
You'd be better off buying 30,000 Euromillions tickets.
Bonne chance.
**Not sure of the exact cost, mine are free so I'm not up to date on the standard fee.
Martin, permit me to make an observation, one that I have picked up on in over 30 years of clinical practice observing how terminally ill patients react and respond to bad news, and how they react when they are then "sold hope" through the back door.
That's how they hook you in. Classical tactics direct from the pseudoscience playbook, following behavioural psychology 101.
First thing is to drive you down to rock bottom. Pull no punches, and make sure to extinguish all hope. Basically, you are as good as dead. Then, when you are truly in despair, let a little chink of light shine in, and suggest there is just a tiny possibility of a glimmer of something which might occasionally help. Which only they can provide, of course.
Human nature being what it is, you grasp at this straw for all it's worth - it really is your one and only chance of life. Once you are hooked, you are cleverly played. They give you stories of patients "surviving", and before you know it, you start down the path they want you to follow. Once committed, they make sure you know that to stop now would make you end up in a worse place than you were to start with. You can't risk any deviation from their agenda. They are home and dry. On your part, no cost is too prohibitive, no effort too much. You want to live, and you need to believe, and part of your subconscious way of coping and surviving is through eliminating any suggestion that you might be making the wrong decision. Cognitive dissonance can often be the most powerful driver of irrational human behaviour, and it seems to be so wrt Burzynski.
Just checked, still not a bloke. Happy? Given my situation yeah, as happy as I could be.
If you feel cheated by the "crap" you were charged for here in the UK, you won't like the Burzynski clinic. They'll bill you for every syringe, every sticking plaster, infusion bag, cotton ball etc.
If you don't care about the money, then fair play to you, must be nice, but be warned - the more money you've got, the more Scamley will squeeze you for.
It can't hurt to pay a visit to MDA.
@Dingo - Don't forget that Burzynski (and other charlatans) have one final song in their playbook - if the treatment works it's all down to them, and if it doesn't? That's the patient's fault for not following the protocol/following the right diet/being positive enough.
That lets other patients believe that they'll be fine, it fulfills the 'Just World Theory'. They'll eat the right foods, follow the protocol to the letter, keep positive and keep praying for a miracle, and they'll live. The others, the ones who died? They must have done something wrong.
Let's not forget the proposed prophylactic cigarette (PDF).
@ Martin Vizzard:
I truly hope that there is help for you but I doubt it will come from Dr B.
Being a psychologist, I'm not expert in cancer therapies, but I do survey alt med / natural health and their methods of inveigling patients away from SB care. I can second Dingo199's excellent presentation of how charlatans work.
You are obviously intelligent and accomplished but that is no absolute guarantee against being fooled especially when you are facing such a dire situation: emotions can and do affect our judgment. No one is immune.
If you were not helped at Harley Street, there are other reasonable places and clinical trials. I am glad that you are following up on the Australian surgeon. The suggestions for American clinics like MDA or SK are also wise.
Whatever happens, I sincerely hope that you are amongst the fraction who do survive despite the odds.
@Denise - I agree. I wish Martin nothing but the best & do hope that he finds a treatment that at least helps him prolong was seems like a very interesting a fulfilling life.
I also hope that he doesn't get swindled by Dr. B & spend whatever remains of his life under a quack treatment that has no good evidence to show that it will do anything other than empty his bank account (for whatever loved ones he leaves behind).
Martin Vizzard - this is meant in all seriousness and with no agenda. What evidence (besides a few patient testimonials) has the Burzynski Clinic given you on the effectiveness of their gene targeted therapy? If he's actually getting better than standard results, it would be good to know.
Thanks.
BTW - I think you have exaggerated the General Prudential rule. I understand that when you're in (or approaching) an extremis situation then you cannot stick to all the published flight rules if doing so will cause an accident. On the other hand, you cannot go outside the envelope (outside the box, maybe, but not outside the envelope). You don't pull Gs that would rip your wings off; you don't open the cabin door at 30,000 feet, you don't try to extend landing gear at mach, etc. You never throw away all the rules.
My apols Elburto, it was the name the foxed me. Trying to be a PC as possible but had you down as small, maybe slightly tanned with a small handle bar moustache. It's the interwebs fault, all these user names, that's why I just use my name, less confusion.
Allow me to assure you all that I am no shrinking violet. Some may even go as far as saying gobby Northerner. However I will not be railroaded by anyone. I have been "shopping around" and am fully aware of all my options. I have been in contact with numerous facilities who if I think can help will be helping me.
Try not to worry too much about Mrs V, she'll be more than alright!
Have any Anteneoplaston patients ever been on here? My goodness I bet you lot pull them to shreds!
Martin,
Just to be clear, I am interested in your well-being, and that is my only motivation in trying to persuade you to seek better medical care.
"Standard treatment", as you put it, is the best available, as assessed by NICE. I have worked in NHS hospitals and in a BUPA hospital in the UK; private treatment may allow you to jump the queue, and you may get a nice private room, but you will generally get the same treatment you do on the NHS, often from the same doctors. There are some cancer drugs that aren't available on the NHS, but they are mostly very expensive and unproven. There are doctors and scientists worldwide thinking outside the box and looking for safe and effective treatments, but conventional treatment is the best we have at present.
If they refused point blank to do it, they must have had very good reasons for doing so. The point is that Burzynski, who is not a trained oncologist, uses these drugs in combinations and doses that have not been tested, for types of tumors they were not designed to treat. That's a dangerous and cavalier way of going about clinical innovation. Unexpected side effects are far more likely than unexpected benefits.
Yes you can. The aircraft manufacturers do not issue guidance on all events. It would get very boring very quickly if I started war stories but let me assure you overspeeding the flaps or gear or exceeding any limitation when you have a cockpit full of smoke. And I have had a cockpit full of smoke, amongst other things. At that point it is basic survival mode. I have friends who have done strange things and lived. Others stuck to the rules and have died. Allow me to point you to the Swissair Canada accident as an example of how NOT to do things. I am not being over the top with that in any way.
If burst ski (that's what autocorrect gave me and I think it's better than his actual name), anyway, if Burst Ski genuinely wants to publish, all he has to do is stick his data up on the interwebs. He's very keen to exploit modern media modalities when it suits him. The FDA could do absolutely nothing to stop him presenting all the objective data for his competently performed controlled trials that he has filling up his filing cabinets after all these years.
For Burst Ski to say he'll be publishing "soon" after decades of supposed trials, hundreds of patients and tens of millions of $$ is pathetic.
@Martin - I know, that if you'd look, you'd see that we have nothing but the greatest sympathy for the patients....and unfortunately, we've seen few, if any, because the vast majority of those who received Dr. B's treatment are now dead.
Again, if you want to see how the clinic operates, all you need to do is take a look at the patient histories posted on "the Other Burzynski Patient Group." The final quality of life of those individuals is not something I would wish on my worst enemy.....
It would make all of us extremely happy to be proven wrong, that Burzynski actually does have an effective treatment, but unfortunately, because of the way he operates & refusal to make any of his results / trials known, it is impossible to know what is effective....but in light of the results that are seen (the dead children, husbands, wives, mothers and fathers) and the same sickening descent and progression of diseases, with the same platitudes, like read from cue-cards from the clinic, it really doesn't look good, not at all.
You've been pointed in much more promising directions, to organizations and researchers / oncologists that actually publish results and stand behind them - which Dr. B does not....in situations where people are desperate, it is horrible that all he offers is empty hope.
Please take our advice in the manner in which it is intended, to prevent you from making a grave mistake with what remains of your life.
Lawrence, that's cancer isn't it and that's the hand I have been dealt so I need to play it now. Be assured I will not be wasting any time (please no-one mention money AGAIN) in having my treatment analysed (and not by the Burzynski clinic) and if it doesn't work I'll shake their hands thank them for trying and move on to my next option.
I imagine that a lot of red arrows drawn all over the page could go a long way.
You clearly are more experienced than I am. It was drilled into me that the emergency procedures and system specs were written in blood. I withdraw my comment.
However, if you do find some information from the Burzyinski clinic that shows that their techniques are more effective than the current standard of care, please do let us know.
You know what BSM - I never even thought about the straight-to-web route. Couple of mouse clicks and it would all be there, all that lovely evidence.
@Martin no 'tache I'm afraid. Tried it, couldn't pull it off. If I can't have a perfect Poirot 'do, then I'm not bothering!
We've had Burzynski families here. We don't shred them at all. We're scared, sad, worried for patients and their families, the only people we're angry at are Stan's Scam Clan. They lie, and wheedle, and spin fantasies and false hope. They show people who are in a dark tunnel a bright light. Unfortunately it isn't a beam of hope, it's an oncoming money train, bearing down at full pelt.
That's why we're angry at him. Every single person here has lost someone to cancer or fought it themselves. We know how easy it is to be manipulated when you're that desperate. Even Orac himself has been there, watching someone die, knowing that even as an oncologist at the bleeding edge of cancer research, he couldn't help.
I know that if I was offered a cure my my problems I'd desperately want to grab it with both hands, I would do almost anything to get out of this room, but "almost" is that key word. If there's no evidence that it will help, then I can't put Other Mrs elburto through that out of false hope, she's got enough on her plate.
Working for the NHS I heard heartbreaking stories from people who were trying to come to terms with imminent death. I saw my own grandmother aggressively resuscitated over and over, because nobody wanted to let her go. As I lay holding her, telling her it was ok to just let go, that wasn't because I didn't love her. I told her to let go because I loved her to death, literally. I didn't want any more pointless pain, but at the same time I was desperate for a last minute breakthrough.
We know what it's like.
If you check out The Other Burzynski Patient Group (links upthread) you'll see in Amelia's Story that her dad, Richard, came here because Orac had explained that Burzynski's claim that little Amelia's tumour growth was "cysts forming as the tumour dies", a lie that made the family ecstatic with hope, was just that. A vicious, wicked lie. One that's told to every brain tumour patient at the clinic.
Orac recommended that. Richard get a second opinion from a real oncologist. Amelia died soon after, and in the second Burzynski film Merola implies that her death was because the ANPs were stopped.
She was a beautiful little girl whose parents did what they thought was best, who fought to keep their precious child alive. They were sitting ducks for the Burzynskiites, who bombarded them with success stories, and love-bombed them during a dark, bleak time. They were conned into taking that poor kid halfway round the world, and having her pumped up with stinking, toxic infusions around the clock, while being told that a few months of discomfort were worth it, because she'd have so much time left after the treatment.
I've cried real tears over Amelia, and over little Luna Petagine who suffered so horribly, while her parents were being told to stick with the treatment because it was working. Tiny little Luna, slobbering and urinating constantly, desperately trying to chug water, her little face bloated and distorted. That image haunts a lot of us.
I truly, honestly hope we never, ever see 'Martin V's Story' on TOBPG, and that you have years ahead of you you.
Gan canny man.
Aren't you worried that they'll give you inaccurate interpretations of your tests in order to retain you as a patient? How can you make sure you're not being lied to, given that you aren't qualified to analyze the test results yourself?
And this is the central issue. It's not that Buttinski's treatments definitely don't work; they probably don't work. The real issue is that he clearly holds in his hands plenty of evidence by now that would show whether his treatments might work. The resolution to this is entirely in his hands. The only fact we know about his treatments is that he holds data and will not release it.
As you have said there are only two scenarios available to us and both lead to the same conclusion.
That was a really nice post Elburto, thankyou. I realise that most contributors here are either involved in treating or developing new treatments in the U.K and U.S and it certainly isn't my intention to be disrespectful. I understand your pain with the loss of your Grandmother, I have seen that first hand also.
I have read a lot on these pages but not really looked at patient testimonials. My treatment is my treatment, it mind sound cold but I'm not interested, especially in those who have recovered. I'm not going to be conned into thinking all will be well by my mind. Why? Because all is not well and the odds are complete crap.
All I wanted to do is get a multiple option plan which included off label drug use then chemo and radio if appropriate followed by a couple of other options I've been chasing up both in the UK and US. Not just one option. Option B is at a world class establishment with a new plan c of Australia (scan dependant). Other options in place also.
To be honest I feel a little annoyed by the UK system. I have been scanned 4 times since 2010 (right Acoustic neuroma) and this was picked up early Feb 2013. Early 2011 find and it's a different scenario (but not ultimately). Going back and reviewing the scans I was told sorry we missed it. It's abit unusual really, I've no headaches, seizures, blackouts, numbness, tingling, nothing. I was in Queens Square having function tests before the biopsy and the doc was saying "your stronger than me". Cognitive, seem ok but after today some here may say I've lost the plot. The scans say something different though. Until 7th May flying around, high speed decision making, co-ordination fine. It is really strange, feel like I should be at work!
However I'm aware the onset could be rapid, that's why I won't have anyone waste my time. Simple question, 3 weeks, is it changing? No I'm gone, Yes look closer, independent check, review implement continue.
Adam G, I won't be analysing, that will be done by someone very qualified and totally independent, in the UK.
I have friends who have done strange things and lived. Others stuck to the rules and have died.
I imagine that it is difficult to design a double-blind random controlled trial for different approaches to cockpit emergencies.
herr doktor bimler - they generally frown upon blind pilots. But then, those pilots don't notice the frowns.
Mephistopholes - nor does smoke impede their vision.
Your quite correct, it doesn't dingo. Nice post Herr Doktor by the way, thanks for that.
Best wishes, Martin.
Thanks.
Best of luck Martin - if you do end up with more interactions with Dr. B, we'd love to get a full report (since there is no other way to get information out of that man, it seems).
Martin, I second everyone else. Best wishes to you.
In case you haven't seen this, one man's successful experience with DIY glioma treatment. Some of the parents of children (who else) with recent experience may help extend BW's effort to the most current opportunities.
Don't expect many positive recommendations here. MOB@65 is correct about distinguishing "the box" and "the envelope" but you probably knew that. Personally my own effort with other refractory material has been to develop multiple trendlines and data from tests as fast as possible, recognizing problem components, trialing strong, low toxicity candidates asap. False positives are not our friends, so objective attitude and data gathering are very important to success.
Beyond a certain amount of initial learning, traditional oncs weren't a lot of use or hope, and even the surgeons agreed. Beyond the MD, PhD, PhD-MDs that one can "consult" in the literature, I have had help with specific recommendations, research and tasks from MD and PhDs from places like UCSF, Stanford, Berkley, Illinois etc as well as more international ones doing uncommon things where average is a nonstarter. Not just Dr Google. This site discusses some of the natural adjuncts proposed for brain tumors.
I followed the link to the second site linked in PRN's post. It was at least composed in standard English and in a reasonable sounding tone, with citations to one or another study. One might think it worth trying...buying some of the supplements coincidentally available there.
But it's actually a reading comprehension test: there's a helpful note at the bottom of the page, which is an image rather than html text. Should you continue reading that far, it says in effect
"April Fool's, the fool is you!"
FDA disclaimer short" src="/images/mercury/template/hg-footer-disclaimer.gif"><img width="955" height="92" alt="FDA disclaimer long" src="/images/mercury/template/hg-footer-disclaimer-information.gif
I have a genuine question -- if antineoplastons are decidedly ineffective, why has the cancer division of the NIH supposedly received 11 patents for similar drugs?
Any info would be appreciated. Thanks.
I've also followed the link and read what Ben Williams wrote.
His points about the limitations of RCTs seem to be reasonable, but he doesn't really present any meaningful alternative. His idea of using small weak studies and historical controls simply opens the door wider for false +ve results. It's the perpetual trade-off. Which error do you want to live with?
The other problem is that he speaks from the relative comfort of having survived 17 years after his diagnosis. But he describes studies that really only demonstrate differences in survival measured in modest numbers of months over typical survivals of a small number of years as if these small differences in some way have contributed to his very lengthy survival.
All over the Burzynski saga we have Survivorship Bias writ large. We get to see the outliers and those outliers comment either on their own behalf or let Burzynski use them as if they tell us what happens to most patients. It seems to me that the piece by Ben Williams does the same.
Perhaps, with Martin in this thread I need to put that another way. The formulation I just used focuses on averages and typical and mean outcomes. That's not what matters to Martin. But the problem is the same even if we cast it in terms of a single patient. Outliers tell us nearly nothing about what the single patient in front of us can expect for their personal disease outcome nor whether any of the various strategies they might pick from this weakly-evidenced cocktail approach will provide any benefit that exceeds the harms even if that patient is prepared to expect high risks of harm and severe side effects for small pay-offs.
Sorry, one last thought. The whole problem is that every cancer patient wants to be told there is a way to live their full span of life as if they'd never had cancer. The big horrible truth is that for many cancers that is absolutely out of reach for us at the moment. We don't want to be discussing increases in survival expectation from 18 months to 22 months but that's where we are and for someone who is quite young this is unavoidably catastrophic.
Middle of the night cookie please.
As with any choice, people fundamentally decide to go down the Burzynski path for a reason. They do it because they find the expense, pain and risks of Burzynski preferable to the alternative, which is facing the reality of their imminent deaths. And I'm not going to judge them for that because I can't guarantee that I wouldn't be the same way, if I were in their position. So, much as I may deplore Burzyski for making such obscene profit exploiting people in extremis, the Hannah Bradleys and Martin Vizzards of this world must gain something, on some level, from the process, or they wouldn't be doing it. And I don't think it's that they don't know that it's bogus, they have seen all these well qualified people explain it at length. It's that they choose not to acknowledge it.
It's the Amelia Saunders and Luna Petagines, on the other hand, who are vulnerable in every sense of the word. They don't choose to go half way around the world, undergo invasive and painful procedures, be hooked up to a medication pump for months on end, and be exposed to toxic drugs, with often horrific side effects, so that their parents can be temporarily shielded from the reality of their prognoses. No child likes undergoing medical procedures and will often have to be coerced into submitting to them. The coercion is justified by the benefit the child will gain from the treatment, but isn't capable of understanding. Burzysnki and his staff victimise these children, by subjecting them to what is in essence an assault on their persons, without any realistic prospect of helping them.
@andrew s:
Sorry, not sure exactly what you mean? The cancer division of the NIH is not the Patent Office, and as far as I know, they don't "receive" patients. Could you maybe explain a little more about who exactly took out the patents and what for?
Sorry, I mean "patents", not "patients"
@ andrew s
Disclaimer: not a lawyer, not even in the US.
That being said, here are my two cents:
It depends a lot on what the patent is about.
If it's a patent on a production process (i.e. how to make tons of ANP), it doesn't matter one iota what pharmaceutical efficiency ANP have, if any. Here is how to make them, what you do with them is your own business.
By the same token, you can find patents for creating perpetual motion machines, not a single one of them actually working perpetually.
As a less extreme case, my former university lab registered a patent on a series of biomolecules naturally found in all humans, in the case one or more of them ends up being used as part of a new chemical/immunological diagnostic kit. Some preliminary experiences lead us to believe that these specific molecules could be worth monitoring in a clinical setting. However, that any of these molecules could be useful still remains to be proven - we only did pilot studies, and we were betting on our results being confirmed and used to market a new diagnostic tool. I may be overly negative, but I doubt very much that we would ever earn a single kopeck from this patent.
That uncertainty on our molecules' usefulness didn't stop anyone from writing and registering our patent.
Next, there is this whole off-label issue, i.e. drugs being used in a different medical setting than the original one they were registered for. ANP could have been patented/registered for a perfectly valid application. Simply not as all-purpose anticancer drugs.
As an example, vitamin C has perfectly valid applications as food additive/conservative/treatment of scorbut... But evidence for its efficiency as a cancer-killer is still lacking.
My only comment on the Anteneoplaston debate is that the National Cancer Institute did the study a long time ago (1991).
No motive in this comment but 22 years is a long time, is there a new trial on the horizon from them? Have become intrigued by this whole ANP debate. Is the following (NCI website) not enough to trigger a full scale trial by them? And I'm meaning in combination with other treatments?
The patient with anaplastic astrocytoma received antineoplaston AS2-1 in addition to other chemotherapy and radiation. An MRI 6 weeks after diagnosis showed a 50% reduction in tumor diameters.
http://www.cancer.gov/cancertopics/pdq/cam/antineoplastons/healthprofes…
@Martin - why not ask the folks at Burnzynski's clinic? They have been "conducting" over 60 different clinical trials, but don't seem to be able to publish any final results from any of them......
For those of us in North America who have not been able to see the Panorama episode yet, the entire 30-minute segment has just been posted on YouTube:
http://www.youtube.com/watch?v=GdZf5_El1Pw&feature=youtu.be
Elihphile, that was good.
If I had GBM just maybe I'd opt for sequencing (and measuring about 20000 mRNAs) and doing off-label treatments "for dummies" (as Orac so often claims about SB). What docs would I go see if I wanted to try that?
Would it work? Probably not. Will it be just a waste of time and money? Probably so. But if that's what a person wants to try, where do they go? Folks will increasingly want to try this.
Is there off-label use of targeted agents that isn't "for dummies"? Some, often as part of a new trial, but usually not of use for your particular situation. Trials and docs trying truly wild-west attacks are hopefully rare - I actually consider most to be unethical and what should or should not be allowed as part of research is very much in debate (I hope - but I fear it isn't debated enough because it's too complicated). It's a very detailed matter, which we rarely get to the kernel of even in the cancer community. I usually start the story with a famous von Hoff paper, which is the first targeted-therapy-for-dummies paper I know of. Very briefly, my objection to such trials is that I don't learn what I wanted to know from them, which is what therapies or combinations work best in particular tumors with specific genetic alterations. I want highly-stratified medicine, not personalized.
Anyway, for GBM I don't think it crazy to study what hedgehog inhibitors you could currently get your hands on, and trying to figure out if addition of trastuzumab would increase the toxicity, and perhaps try it on yourself, even though you'd know it probably won't work, and may make you very ill. Yes, personally, I'd try to put myself on a relevant clinical trial first - even just to have my death 3 months later or earlier informs future care. Perhaps that's cause I used to research GBM, and have a deep hatred of it. When I die, let it be for a cause worth dying for, like data, believe it or not. Other folks may not feel that way though.
PS: I am not trying to defend Burzynski by any means - clearly too many additional problems. I'm trying to explain the situation of the patient.
Andrew, ANP-like molecules have been patented because someone, at some time, thought that they might possess some monetary value and wished to secure exclusive rights to their production or use. Whether they were right or wrong-whether they actually are valuable commodities--remains to be seen.
And given that phenylbutyrate, the pro-drug molecule that metabolizes to phenyacetate, one of BZ's antineoplastons, is marketed as Buphenyl to treat urea cycle disorders, they might even be right. Maybe one of these other ANP-like molecules would also be effective at treating urea cycle disorders. Or athlete's foot. Psoriasis. Warts. Something.
But until such time as someone conducts clinical trials and publishes their results, we won't know.
What we do know is that Burzinski's clinic has published no results demonstrating that as claimed antineoplastons are effective at treating advanced stage cancers, despite initiating more than 60 Phase II trials over the past couple of decades.
Why do you think that is?
I have little to add to the dialog between commenters and Martin V., except that while it seems that for MV, money is no object and Mrs. V will be provided for no matter how much is spent at B's clinic, so therefore, it's not an issue. Not for him, perhaps (and I understand that at this point he is only concerned for himself, really I do) but what about the people who had to do fundraising to get to Houston and the "treatment"? What about all the compassionate people who gave money to those fundraisers thinking they were helping some poor little child get treatment, which only magnifies the idea that governments are conspiring to keep "miracle" treatments from their citizens?
It's debatable whether or not Martin has any moral responsibility beyond his own predicament and wallet, but I think this presents an opportunity for all of us to think about such moral dilemmas.
Martin, if I'm on a plane going down, my hope is for a calm and rational pilot who presents the situation truthfully, thus perhaps allowing me some meaningful goodbyes. Yes, I want someone brave enough to break some rules, but only within the bounds of reason. As someone said above, I do not want the hatch opened at 30,000 ft. in some vain hope of saving me.
I have only one thing of substance to offer here. I am aware of a couple, friends of a friend, who went to the Burzynski Clinic. During the initial evaluation, they were able to figure out that they were being scammed. When they raised objections in front of other patients, they were summarily ejected from the office (by the way, I think that says a lot).
If Martin is willing to listen, I am willing to attempt to get an e-mail address so he can talk to them. No guarantees. I really do not know if they would be willing to talk to him. Martin, if you are willing to listen to them, and I mean really listen, please contact me via Orac.
Yes Lawrence, I know that, it might of been mentioned a couple of times yesterday. Please assume from this point forward I am fully aware of that.
My question still stands. I assume a complex trial to arrange, but achievable?
There are some flying machines around where the bomb removal technique at high level is descend to FL250 depressurise the hold and eject the object. So maybe in some cases you do want a hatch opening. I am not making irrational decisions. I have other plans lined up and will follow through with them. I'm surprised no one has analysed correctly exactly what my mode of operation is. I've said it a few times now.
Thanks Michael, help is appreciated. All options being looked at.
The results from the earlier studies, however, don't support the need for additional investigation, much less full scale clinical trials, and in the 22 years since no new results have been published altering that assessment.
With respect to the patient who exhibited a 50% reduction in tumor diameter, it's impossible to attribute the outcome to the co-administration of ANP's. The reduction could be due to the chemo they also recieved, or the radiation, or even something else entirely. There are rare instances of spontaneous remissions, after all--no way to tell if this result isn't one of those outliers.
But one thing is pretty much a certainty. With 60+ Phase II trials later and hundreds of patients treated at his clinic, Burzynski must have sufficient data to accurately assess whether or not ANP's are effective at treating advanced --but he refuses to share that data with anyone.
Why do you think that is?
I think what makes Luna Petagine's case even more tragic than the typical childhood cancer stories is that her mother seems to blame herself for her daughter's condition.
Lucy Petagine is under the impression that it was her faulty breast implants leaking while she was breastfeeding Luna that might have resulted in her daughter's cancer.
Lots of stories from the British press here:
http://www.google.ca/#q=lucy+petagine+breast+implants&spell=1&sa=X&ei=F…
It's bad enough and unfair when a child gets cancer for "no good reason" but when a parent thinks it was her fault, whether real or imagined, well, I can't possibly imagine that guilt. and the lengths to which she'll go to try to help.
I noticed when I first watched the GOSH doc on Luna that her father never said one word, either to the cameras or to any doctor, about Luna's prognosis or treatment options. Her mother was clearly the one making all the decisions, and maybe that's because she felt responsible.
I take your point JGC. So basically the situation is that if a substance is looked at as a possible treatment is discounted (not sure if that was a numbers thing but I've seen it posted here that you need a decent size) then it never gets looked at again? Also worth combining with other treatments?
I cannot comment on the contents of Burzynski's data, but then again no one can. An assumption it is not favourable can be made but until the numbers are published it simply not fact. I've been asked "why I think that is?" about 10 times. Just as you guys don't know neither do I.
All I was asking was about the theory of a new study. Would put things to bed.
It gets looked at again once there's a valid scientific reason to do so--if new results suggest efficacy with respect to the original indication, if similar molecules show efficacy for different indications, etc. But if it showed no promise, and has not since showed any promise, there are always other candidates with evidence suggesting greater potential for success which are better investmenst of the limited resources we have available for study.
If Burzynski has evidence of efficacy and published it that would be a game changer, and other labs/companies would start running studies. As he hasn't, we're 'put to bed' with results from early studies failing to support a need for further study.
None of the results since though are valid because they have not been published. I'm talking about Burzynski there. Also that may cause future debate about data collection etc etc etc. So is it not just a case of forgetting about Burzynski for the purposes of a new trial. If you are saying his data is not valid, it shouldn't be used as part of any test.
It's put to bed because the study of the nine patients? Someone earlier said it needs to be a large (ish) number to get reliable data. 9 doesn't seem that many.
It's not that none of the results are valid because they haven't been published but that there are no results to consider in the first place, because they haven't been published. Only after they're published can anyone assess their validity or lack there-of.
ANP's haven't been 'put to bed' on the basis of any single study, but upon consideration of all evidence speaking to their potential as a therapy--in vitro and animal studies, mutliple human studies looking at multiple ANP's (A, A10, AS2-1, A5, etc.). There simply isn't enough evidence in their favor to warrant large scale trials.
If there were compelling evidence ANP's could treat or cure cancer, believe me: Pfizer or Glaxo or Wyeth--a big pharma company with deep pockets--would have a dedicated antineoplaston program going as we speak.
Martin,
It's worth noting that most of the patients held up as Burzynski successes had conventional treatment, including surgery and radiotherapy, before seeing him. It is only in recent years that we have begun to understand how tumor necrosis after RT can look like tumor growth on CT and MRI. I strongly suspect that this explains many of the patients with brain tumors that were still apparently growing after conventional treatment, who went to Burzynski, and whose tumors subsequently shrank and disappeared. If that is the case, delaying RT may be a serious mistake. Whatever course you pursue, I sincerely hope it proves to be the best one for you.
JGC, this is a very simplistic view on things. Wipe the slate clean and forget Burzynski and the treatment and any stories that come with that. There is obviously a lot of history and "my opinion" is he shouldn't be involved. There is a few cases on the NCI website that look curious though. Tumour remission, all spontaneous? Now I'm not saying its ANP, nor am I saying its spontaneous because there is no evidence to support either. You cannot help but wonder though if cases like Hannah Slater have seen success based on a combination of treatments? Worth a look, I think so!
Now I will almost certainly get jumped on but big institutions make decisions based on numbers. Why bring a drug to market to treat a few people if you've already got a drug approved? Would I do it? Nope.
@Martin Vizzard
There is a claim that ANPs can treat inoperable brain tumors that have failed all other standard treatments. Do you really think that a Big Pharma company would not scoop that up and charge insurance companies a bundle if the claim were supported by good evidence? If the drug can only be given to a small number of people, then you can jack up the price to make it worthwhile. If the condition is so rare that it meets the criteria for an "orphan" condition, then there are government incentives to pursue a treatment.
Martin Vizzard, best of luck to you.
By the way, how would you feel about Boeing and Airbus deciding that they no longer needed a airplane validation and test program? Essentially just building the plane, and just letting the airline fly them out without any checking by very expensive flight test engineers and pilots. If car manufacturers can do it, why shouldn't aircraft manufacturers?
Especially if they changed the design, like replace the oval windows with square windows, to get back to that classic the De Havilland Comet. Would you be willing to fly it?
That is what you are doing when you put your health in the hands of Burzynski. He just mixes up some kind of treatment out of the blue, and has never published any results.
@Todd: I cannot say what a big pharma would or wouldn't do.
@chris: When the test crew get hold of the aircraft they are not expecting a hull loss. Work already done. A few examples of loss of control/stall in minimum speed conditions but that doesn't mean it is unsafe. That's an example using the population, based on the fact most people get in a car or aircraft at some point, whereas most of the population don't have cancer.
Burzynski has never made it onto the slate in the first place in order to later be wiped clean--he never published results from a completed trial.
What we're left with at the end are no studies where ANP's alone have been found effective, and some studies with small sample numbers (and high drop out rates) involving patients who received ANP's in combination with convential treatments (surgery, chemotherapy, radiation, etc.). It's impossible to attribute outcomes in these studies to the co-administration of ANP's.
Add to this the fact that phenylbutyrate, the pro-drug for one of Burzynski's preferred ANP's, AS2-1, was previously investigated pretty thoroughly as a possible cancer treatment without success and I really don't see evidence sufficient to justify further large scale study.
As to "Why bring a drug to market to treat a few people if you’ve already got a drug approved?", economically it would be because there's a profit to be made, and it's done all the time (why do you think you can choose between Alegra and Claritin for allergies, Viagra and Cialis for erectile disfunction, etc.?) But the fact is that at this moment there isn't an effective drug approved for treatment of the diffuse intrinsic brainstem gliomas Burzynski claims ANP's can cure, so it wouldn't be a case of bringing a drug which would compete with one you're already selling--we're talking being not only first-in-class- but first-to-market..
Martin Vizzard:
Ah, I see you did not get the big hint with the window redesign. Obviously you have no clue that changing a structure without test validation can cause catastrophic failure.
Seriously, you have never heard of the first jet liner, the De Havilland Comet? Yikes!
Perhaps you'd be happy if the landing gear metering pin was changed without test and validation, or if the tires were filled with plain air. Perhaps if they decided the gear should actually also be made out of aluminum, without any testing. Or perhaps if the electrical system was installed without checking to see if the wires were connected properly.
Because Mr. Vizzard, depending on Burzynski is just like getting in an airliner that has skipped basic analysis and testing. You might has well be flying a home built experimental made by reading plans written (or more accurately "drawn") by Ikea.
Humans are more complicated than flying tubes of aluminum. You should expect more exactness in the results of clinical trials done over the past thirty years.
Something something John Denver something.
Narad, one Monday I came into work and found out a co-worker had died in his home built over the weekend.
Chris how do you know what I have and have not heard of? Your just guessing! Is that what your all about Chris, trying to discredit people based on guess work? We can make this about flying if you want. I didn't answer the window design because it is such a crap example I couldn't be bothered typing a full response. All your other examples are also bad.
I bet your a CRM gem!
Mr. Vizzard, all Burzynski has is guess work. He claims to have thirty years of research, but none is properly published.
And it is not guessing when you did not realize the significance of square windows and metal fatigue. You don't have be a structural dynamics and loads engineer to click on a wiki link.
I am constantly amazed at how little evidence people are willing to accept when they buy into certain medical claims.
John Denver is definitely not a good example of the way to determine where a bad place to put the tank switch is.
So in your world Chris because I don't make a statement it means I don't know. Don't tell me what I did and did not realise. Please explain how over the Internet you can possibly tell what I know and what I'm thinking.
GUESSWORK CHRIS!!!!
You also don't know what other plans I have made so please limit your guessing. Are you in the medical profession?
As a mental health provider and a skeptic in training, please remember Martin when you feel you can not be fooled is when you are most susceptible to being fooled (Daniel Kahneman “Thinking Fast and Slow”). We must remind ourselves that our brains are deception engines and none of us are immune to magical thinking.
Cancer is the number one cause of mortality on both my mothers and fathers side of the family. I have had family members fooled into believing an unscientific method would work for them. I’ve tried to help them as best I can and assist them in educating themselves what their options truly are. Unfortunately for some there was no option and they went under care of Hospice.
Science is emotionless, cold, and logical. It tells us what is regardless of our desires. As human beings we are full of emotions, warm (some more or less than others) and like to think we are mostly logical. Pseudoscience likes to tap into our emotions and give us answers, even if those answers are fractally wrong.
I work in the dialysis field and deal with end of life issues frequently. It is a difficult topic for most of us to talk about. All life is finite. Some of us have more time than others. No one knows when the end will come. The best we can strive for is determining if we have accomplished all we wanted, did we do all we could. My patient’s have the option of deciding to discontinue dialysis and how they will leave this earthly plane of existence. In the end what we have left is dignity and quality of life. Each person must decide for themselves what this means. We have to remind ourselves that our best is good enough.
For you I would say come to an informed decision. This means gathering all the credible information you can and deciding for yourself what it is you want to do. Unfortunately Stanislaw Burzynski does not practice evidence based nor science based medicine. In my opinion he is a vulture preying on the weak and vulnerable. His motivation appears to be both financial and delusions of grandeur. He is credulous in his opinion on how his technique works.
I in fact have a patient who has decided due to her advanced age to not seek treatment for the type of cancer Orac treats as for her the side effects to not outweigh the benefits for her. Each person must make this decision but the bottom line is make sure it is an informed decision
I am shocked that a pilot is so unconcerned about the structural integrity of aircraft. Yet I am being accused of guessing. Which is exactly what Mr. Vizzard is doing about Burzynski.
You just cannot stop guessing can you! That is the worst possible sort of decision maker. You've taken a fact that you have assumed from a question I chose not to answer and trying to use it. So I am unconcerned about structural integrity why? Because I didn't answer a pathetically crap question on oval windows. If you did know anything, you'd realise why that is such a bad example.
I am not on ANP and will not be, I am taking off label medication and if that shows no signs of assisting I'm on my way back to Manchester. If it works it works, if not I've not lost anything.
Well, you will have handed over quite a bit of money to an organization dedicated to scamming other innocent, less well-off patients. So there's that.
Not necessarily true. In the worst case, if it doesn't work it makes you worse. If it merely doesn't work, you've lost time and have less of it to get a solution that does work.
MSII: Thanks for the link.
Rork: When I die, let it be for a cause worth dying for, like data, believe it or not.
Agreed. If they can't use my organs, I'd like to know my body could be used for a greater cause. You remind of a story I read a few months back: a little girl, not more than eight, died of a glioma. Her family donated her brain, in hopes th
That a cure could be found. I'll post links later.
Hit submit too early darn it!
Martin,
Are you aware of this clinical trial? It's in Texas, you appear to fulfil the inclusion criteria (if you are CMV +ve, which most people are) and it's currently recruiting.
Mr. Vizzard:
I am surprised that someone who makes that claim does not understand the analogy of testing basic aircraft structural criteria in regards to testing of cancer treatments. Both for safety and efficacy.
The reaction is baffling, and the reply that included crew response management, which has nothing to do with catastrophic structural failure, is odd. It is like something is fundamentally wrong, like not understanding airframe vocabulary.
Well of course you're not on ANP, Martin. Burzynski is not presently allowed to prescribe it, because he's being investigated by the FDA over it. He's not allowed to write any new ANP prescriptions until the investigation is complete, so he's taking great pains to make it clear he's complying. But the ongoing production suggests he fully intends to resume. Either that, or he's got a hell of a lot of old prescriptions to keep filling.
I can understand your frustration at the Comet thing. The deHavilland Comet is a much maligned aircraft; the well-publicized structural failures early in its history completely destroyed its reputation, even though the fuselage was redesigned and it went on to a very long service record. Today, people only remember the square windows on the first few Comets. The last of the Comet lineage went out of service in 2011: the venerable Nimrod.
Still, I see Chris' point. Commercial airliners, like medicine, are regulated, and those regulations require extensive testing prior to certification. I work in the aerospace industry, so I have first-hand experience with some of this testing, even though my company doe snot make airframes; we make things that go into the airframes. ;-) We spend a great deal of time testing.
So Chris' point with the question isn't really to test your knowledge of aviation history. It's to ask if you'd be okay with abandoning this level of rigor and regulatory oversight in the aviation industry, and adopting a level of rigor more comparable to Burzynski's.
Thank you, Calli. That is precisely my point.
And I only chose switching from oval back to square windows as a simple change that has some very serious ramifications, which would require a great deal of analysis and testing.
I added some more "simple" changes that would have serious consequences thinking that a pilot really does not understand metal fatigue and fracture. There is a very important reason why a jetliner's tires are not filled with air. I would hope he knows that.
Perhaps it is Mr. Vizzard's mindset that he does not want to understand the analogy. In real life he would probably not attempt to fly an experimental airliner, but is perfectly happy to be given an experimental cancer treatment. Airliners go from "experimental prototypes" to certified in less than three years, but Burzynski had had more than thirty years.
Perhaps Mr. Vizzard would be interested in Alternative Flight:
Crew RESOURCE Management reference was a reference to you personally Chris. Because I think you an autocratic guesser!
I understand the testing system and need for testing. Chris needs to actually read the points I was making earlier in this thread. Chris very lamely seized on a more complex problem than windows that I described to call into question my knowledge, which, I can assure you is far from lacking!
Thankyou
Again Chris your guessing again on the tire issue. Do I REALLY need to tell you everything I know?
Shall we talk contingency on NAT tracks, EROPS 180 procedures or something else of your choice?
I tell you what lets make it Pacific crossing procedures. So let me ask you this, is it RNP 1-5 or 10 in the PAC? Where does RVSM start and end and is longitudinal separation a)10 mins -/+. 0.1 or b) 20 minutes. Is SLOP recommended? Should we use standard weather avoidance?
How many fixed and how many transition routes on the NOPAC and where does it run from and to?
When does my window of suitability open at my first suitable diversion? Oceanic clearance required in WTRS area just off New York?
Dude, cool it. The analogy went over your head. You are trusting your life to someone who has had thirty years to prove his magic cancer cure. Yet, you would not fly in a plane that has not gone through rigorous flight testing, including structural tests. I'm sure that you would be most unhappy if a jackscrew failed or the nose gear shimmied you off the runway.
But you are willing to bet your life on someone who just gives promises instead of evidence. Burzynski has had thirty years to prove his magic formula works, but he has produced no evidence.
You are just mad at me because I showed your hypocrisy. I am sure it is cognitive dissonance, but you need to recognize that if you are willing to depend on the hundreds of engineers (like me) to make a safe plane, you need to ignore one man's empty promises.
Should I use VNAV in Russia for a non prevision approach? I'm sure your aware Russia is not WGS84 compliant, Jump to South America and South Africa should I?
Martin,
I want to be sure you didn't overlook my comment at #133 above about this clinical trial: It uses T-cells with HER2 antibodies attached, along with a protein called CD28, which will attack HER2 positive GBMs. I think it is well worth looking at.
Your questioning my professional credentials. I hope that has now been put to bed. Now lets leave that subject and we can move on and I can explain again what I was saying earlier.
That ok?
Hi Krezbolen,
Me and my wife are sat looking at it now and I do thank you very much. I always admit when I didn't know something and I didn't know about it.
Martin - I hope it proves helpful.
I'm inclined to concur that this analogy has run its course. And to wish Mr. Vizzard well, as strongly as I would echo the profound concerns about Burzynski's operation.
Ok, deep yoga breath (that's the Mrs)
What I was saying earlier is that there are certain things in this world that things are designed to do certain things. Of course they need to be tested and safe. For normal use!
My point (much) earlier was that sometimes in a dire emergency unproven techniques MAY yield successful results. Having been dragged around the space centre by Mrs V just a few days ago I cannot help but give the Apollo 13 event. Pure improvisation which could so very easily resulted in loss of life.
There are multiple examples (unfortunately in flying) where doing the standard thing killed everyone. By the way we have some good idea's. I have on my days off been involved in giving CRM lectures, and not to other crew. The medical profession did also adopt some very basic procedures from the aviation industry and had fabulous results.
This was my whole point earlier. As well as curiosity as to why you can't all get together, be nice and try and work out if this ANP stuff does work in combination etc.
Tiring work this posting business! Still no one has twigged how I'm playing this! I find that worrying!
Martin:
I think your analogy fails at a very fundamental level. You describe your situation as being that of a pilot who is in a crisis and must throw the book away in order to save lives.
In fact, a more accurate analogy would be that you are a passenger on a plane which is out of control and must select a pilot to save the plane. Your choices include trained pilots on the type of plane on which you are flying, other pilots who are certified on different, yet similar, planes, and one guy who hasn't flown since his service in the Falklands War* but says he has a radical new way to save a plane in crisis.
Looks like the old dude is getting the job, based on your comments above.
* The Falklands War was roughly contemporaneous with SB's discovery.
So I was curious about the 5-year survival rate for his brain cancer patients and went to GoogleU for a reference baseline (warning - this is gleaned from the internet and may contain errors).
Here's one very interesting statistic:
Patients with some types of tumors have relatively good survival rates. Five year survival rates for patients with ependymoma and oligodendroglioma are, respectively, 85% and 81% for people ages 20 - 44, and 69% and 45% for patients ages 55 - 64. Glioblastoma multiforme has the worst prognosis with 5-year survival rates of only 13% for people ages 20 - 44, and 1% for patients age 55 - 64.
So Burzynski's all-type 5-year survival rate is only slightly higher than the standard rate of the worst type for adults of child-bearing age* (15% v 13%). Unless he treats a lot of senior citizens with GBMF, this is not impressive at all.
*children have an even better prognosis according to the article
Ok Opus we can work it that way. It is very very likely that the old boy's skill level is far superior in terms of crisis management and is less likely to make a rash decision. Young guy, rule based decision making until he realises he's really in the shit then he may well panic. That's when you could end up in real trouble.
Mr. Vizzard:
True. At first, when you did not understand the comparison between analysis/testing of aircraft and clinical trials. But I looked you up and your are legit.
A hint for the future: you can make people doubt you through your "I am smarter than you" arrogance. Because you are a pilot does not make you better at judging medical protocols, nor does it make you immune magical thinking. You are not unique, and there are a few mentioned here like this neuroscientist.
I am now of the opinion that your desperation is clouding your judgement. So I wish you the best, and hope that you would choose from a wide selection of cancer research organizations that employ many skilled researchers and actually publish their results instead of one lone maverick who has not published any results in thirty years. Two have been suggested to you, one in Australia and one in Houston.
By the way, since I was a minority among aerospace engineers my credentials were often questioned. Usually by those who had no clue that nonlinear second order multivariable differential equations exist, much less how to work with them. I was used to getting insults by those who have no idea how to pronounce Euler, nor know that there were several Bernoullis. I learned to ignore it over thirty years ago.
I am in no way desperate, that's why I made the comment earlier about CRM. Your assuming I'm desperate. Did you read the whole thread, including the treating clinic in London? Not setting any alarm bells off?
You can think what you like about my state of mind, but let me assure you I am perfectly in control. And i never said I was smarter than anyone. Certainly not amongst some of the boffins here (mean that nicely)
Have a look back a couple of posts, and let me know what you think. You keep ignoring things I'm posting.
Not getting involved in arguments about planes, of which I know nothing, but there are a couple of points that I thought should be made:
First, prn suggested, and Martin appeared to concur, that the way to do this is to try things and if they don't work, try something else. I am not in any medical field, but reading on this site I have seen numerous mentions of delayed responses to chemo or radiation. Thus, if you stop a treatment because "it isn't working", and you try some other treatment and "it works", you can't really be sure which, if either, actually produced the effect. That's one of the problems that researchers tackle with their careful experimental design. I bring this up just as a warning that the body is very complex and often you can't really tell what's working and what isn't.
Second, Martin asks why antineoplastons haven't been studied. Well, new treatments tend to be studied by companies that expect to make a profit on them. It's probably uncommon for a company to accrue thousands of patients for Phase II trials, but in at least one case it seems to have been done. Unfortunately it appears that the results in that case were so uniformly disappointing that the company never published its results or placed its products on the market.
I refer, of course, to antineoplastons. If Burzynski has not managed to prove any benefit despite thirty-five years of effort and thousands of patients, why exactly should anyone else suppose there was a benefit there to investigate?
+1 to Bruce Martin #126. I also recently read "Thinking Fast and Slow". Have also read a lot of other books in a similar genre (Gladwell, Pinker, Tavris, Schulz).... Which proves nothing other than I've read a lot of books.
Uh, huh. Sure, whatever you say. It is just that this reads as arrogant:
And exactly how many times have you had to throw out the rule book?
Actually, read what Opus wrote. That is more accurate. Foks like Orac and the researchers at MD Anderson Cancer are the skilled pilots. Burzynski is a former crop duster.
And as far as Apollo 13 goes, those astronauts were well trained, both as engineers and flight test pilots, they knew how to do the calculations. In that analogy, Burzynski would have been stowaway tourist who read Heinlein and imagined himself the hero.
Try some better reading: Emperor of All Maladies.
Sorry about that...
Not sure where "Child" came from. Should be "BS ChemE here - I can do this!"
But it kinda illustrates the point. Nothing worse than being blindsided with something out of your control. So, you scrabble around for something in your control to try and fix it.
Martin,
I'm guessing that you want to try trastuzumab, perhaps in combination with pertuzumab. If were in your position I might think that worth a try, though I think the enhanced T-cell trial I suggested looks more promising. Assuming I'm correct, what reasons did the UK oncologists give for not trying that?
Martin, one more caveat regarding "If it works it works, if not I’ve not lost anything." Having taken chemotherapy medications at all, let alone off-label, is often enough to disqualify as a suitable subject in other clinical trials. This has happened to some of the patients who were receiving Burzynski's targeted-therapy-for-dummies treatments, who were justifiably upset that they had never been warned of this possibility. In such a case if it it turns out not to work you will have lost something--the opportunity to enroll in a trial that might have been beneficial.
Chris, you misunderstand my use of the English language, lets just leave it at that. Design and testing for safety different than operating in certain circumstances. I didn't realise the Apollo guys were involved in the design and testing of the machine as well. Not what it was designed to do, what it can do! I think that line made it into the film.
Krebiozen:- It is so very basically simplistic. All I have heard on here is "people go there who are desperate". Do I sound desperate? I may in the future be desperate, however being from the UK and having basically having an unlimited budget (not that helps one scrap) where do you think I'll be getting treatment?
Actually, the Apollo astronauts did have some input, especially after the Apollo 1 fire. Which is why they knew what was on that craft. The important thing is that they had the engineering skills to do the fixes, and knew how the equipment worked. Plus they knew how to do the orbital calculations.
Plus they had military backgrounds and NASA training includes all sorts of scenarios. You should check out some of the training exhibits at NASA. Those are actually more interesting than the movie. (it is at this point where the resident NASA buff, Calli Arcale, needs to chime in)
Ugh, I am sleepy, "orbital calculations" should be re-entry calculations, they had to hit the atmosphere at a certain angle.
He's still sending ANP to patients who were already on treatment. There are no new patients on it.
Recommended reading on NASA. The first 3 provide special insight into safety, testing, and training.
Flight, Chris Craft
Failure Is Not An Option, Gene Kranz
Apollo 13, Jim Lovell/Jeffrey Kluger
For more information on the Apollo program, see Man on the Moon, Andrew Chaikin
My Gemini info comes from Gus Grissom’s book; for Mercury and prior Tom Wolfe’s the Right Stuff
Sorry about no links - I'm actually looking at that bookshelf (and no, that's a complete list of the books)
If it's going to go this way, I feel obligated to put in a recommendation for E. Myles Standish, long the steward of the JPL ephemerides.
Chris:
Do tell, because actually jetliner's tires *are* filled with air. ;-) You're probably thinking that they'd explode at high altitude, but actually, even the Space Shuttle had air-filled tires. Air-filled tires work really well, and honestly, something pressurized to 300 PSI at the 14 PSI of sea level is not going to mind the outside environment dropping down a few PSI. Even dropping to vacuum is just not significant at that point.
Regarding Apollo, yes the astronauts were involved in the engineering of the spacecraft. The idea was that in addition to giving them important familiarity at deep levels (though not as exhaustive as you may be thinking; some things you don't learn until after the engineering is over, which I'll get to in a minute), it would also enable them to provide essential input on human interface issues and also make safety a far more personal thing. It worked. It also helped that nearly all of them were test pilots, and that is also a job that requires a bit of an engineering background, at least if you want to do it really well, and of course these were the best of the best.
Now, this is not to say they could solve all problems themselves. They were trained on navigation, and even carried that quaint old navigational aid, the sextant. (And used it, particularly on Apollo 13, where it was used to plot out lines on the window that could be used as aids to the pilot conducting the engine burns.) But they had a lot of help from the ground, which could simulate things for them. It was folks working on the ground, including astronauts, who worked out the precise sequence of events needed to revive the Command Module without draining its meager battery reserves prior to reentry and leaving it unable to steer the reentry within the tight envelope of safety. And it was folks on the ground who worked out the CO2 scrubber kludge. And then there's a more famous example still....
Apollo 11. As the LM descended to the lunar surface for the very first time, and the world watched breathlessly, several things happened. The first thing was that Armstrong, one of the world's great pilots, had already noticed that their retrofire came slightly late, and so they'd overshoot the landing site. Not a huge problem . . . yet. Then they noticed their velocity was wrong, so they corrected that. And then they got a 1202 alarm, and then immediately a 1201. These are computer codes; they meant the computer was being overloaded. Armstrong and Aldrin had no idea what to do; Flight (Gene Kranz) had no idea what to do; CAPCOM (astronaut Charlie Duke) was freaking out . . . but the guidance officer knew, because he'd seen this happen once before during a training simulation. Only once. But he knew what it meant, and more to the point he knew it was a spurious indication. They were experiencing an unexpecting timing issue due to the phasing of the radar pulses used to measure their altitude. GUIDO knew that if the messages didn't come up again, they'd be fine, so with moments to spare before an abort would be commanded, he urged Flight to press on. Flight accepted his call, CAPCOM passed it along, and they kept going. Then the next big deal -- as a result of the first big deal, Armstrong could see they weren't going to get the nice smooth landing area that had been planned. It was a boulder field. So he took over and directed them downrange, concentrating hard, too hard to explain this to the ground or even his copilot. The LM was not an easy vehicle to fly. CAPCOM started reading off the number of seconds remaining in the fuel before abort would become impossible; they were only able to bring 120 seconds worth of extra fuel, so the atmosphere in MCC was doubtless very tense. Armstrong brought her down safely with just 18 seconds of margin left; CAPCOM famously radioed up that "you've got a bunch of guys about to turn blue down here."
So the Apollo missions had plenty of examples of quick thinking by astronauts, both on the ground and in the vehicle, and by non-astronaut flight controllers. But that quick thinking wasn't just guesswork; they were based upon exhaustive work
There have been lots of other close calls in spaceflight, but that was the most widely broadcast one. ;-) And there have been calls made where to this day nobody knows whether it was the right call, and calls that ended up disastrously wrong. But I like the stories of clever saves much better. ;-)
Just for fun, here's Akin's final Law of Spacecraft Design:
"Space is a completely unforgiving environment. If you screw up the engineering, somebody dies (and there's no partial credit because most of the analysis was right...)"
Okay, I was wrong. I was told they are filled with nitrogen to prevent fire on landing. Lots of heat, which combined with oxygen and rubber is bad news.
And, I knew Calli Arcale would have the goods!
Wait, I am not wrong:
http://www.b737.org.uk/landinggear.htm#Tyres
Chemmomo, here are a couple of other good books about some of the hidden history of NASA:
The Mercury 13 : the untold story of thirteen American women and the dream of space, by Martha Ackmann
and
Promised the moon : the untold story of the first women in the space race by Stephanie Nolen
I use the library, so I keep a record of what I check out and read on a spreadsheet. It helps me remember, and keeps me from checking out a book twice. Like the book above those, Astro Turf: the private life of rocket science. It had such an impact on me that I read it twice, and still can't quite remember it (I believe it was the author's relationship with her father).
Why are we discussing the design/piloting of aircraft on this thread? I believe that Martin Vizzard first brought up his job as a pilot and his belief that the knowledge he has about aircraft should serve him well, as he investigates treatments for his brain cancer.
Here's the deal Martin. None of you book-learning, none of your training...and none of your work experiences qualifies you as "an expert" in cancer treatment. And, IMHO, were it not for the fact that you have been diagnosed with a brain tumor, your utterly off-topic, thread derailing statements, would meet with more opposition from other posters here.
(hint) I am a retired public health nurse-epidemiologist with a huge knowledge base about communicable diseases, immunology and vaccines. I readily comment about my field of science, but rarely comment about chemotherapeutic cancer treatments. I leave that to the experts (Orac and other posters who are doctors and scientists involved in cancer treatments).
In spite of your first post upthread which slammed Orac and others who comment here, Orac did provide you with the name of a surgeon in Australia who has successfully treated some people who have been diagnosed with the cancer you have been diagnosed with.
May I make a suggestion Martin, that you take some time to read the comments and the links to other blogs that have been provided to you...before you post more off-topic comments.
We all have great empathy for you and your situation.
Um, kind of my fault. Sorry.
I kind of thought that he might actually appreciate all of the analysis and testing that goes into the machine that is his "office." And compare it to the lack of analysis and testing done by Burzynski.
@ Chris: IANA psychologist, but I think Martin is using some defense mechanisms and discussing extraneous topics, because at this time, he needs to focus away from the serious cancer that he has been diagnosed with....a very natural reaction.
I certainly did not mean to chastise you or Martin for your comments, but I have seen patients and people who are close to me, engage in elements of intellectualization to avoid thinking about the difficulty road ahead and their possible demise from their illness.
Chris, I do have Ackman's book, and I'm adding the other two to my summer reading list. Thank for you this and all other great suggestions you've given me over the last few years.
I do visit the library regularly, but for some topics I like having the actual book on hand.
Chemmomo, I have been known to actually buy a book after checking it out of the library. I actually did that yesterday with a book about local city stairway hikes (I was surprised to learn that Los Angeles had more public stairways than San Francisco!).
Another book on a similar vein is Managing Martians by Donna Shirley. It is her autobiography. It sadly does not include her accepting a job at Paul Allen's Science Fiction Museum to be near her daughter.
(Um, I feel embarrassed that you look at me for book suggestions. Some I have gotten from the JREF forum "What are you reading" thread.)
Thanks for the online assessment lilady but I can assure you I am perfectly aware of my situation. As I said earlier although disappointed its an early "clock out" for me any one if us here may experience that today crossing the road or in our cars. Referring to something you are familiar with and drawing parallels is not uncommon ref my job. Also i thanked Orac for the information by the way, AND have acted on it. I suppose I need to tell you the secretary is Scottish/British as well in advance of being quizzed to see if I'm being truthful.
Calli's post is great. Putting it into my example then, I was told "standard treatment" Themozolomide and Radiation based on testing trials etc which I am sure took many years and is safe. 3-6 months extra. Going back to Calli's post the Apollo guys built the scrubber! Was that standard, tested checked, double checked? Did it work? Yes.
Is my "scrubber" out there? Who knows, but I certainly intend to look! I'm trying off label medication to see if it works "for me". However I think the problem here is who I have selected to do that.
lilady:
Because it's cool. ;-)
Chris:
I misunderstood what you were implying about aircraft tires. It's true they aren't always filled with breathable air, but they are filled with gas, and that's what I thought you were saying. I've run into a lot of people who think tires would have to be solid to not explode, and thought that was what you were getting at. (Admittedly, these were often Apollo hoax proponents, who thought the LRV wouldn't work on the Moon because of exploding tires, which betrays a rather serious depth of misunderstanding.)
Martin:
Actually, yes, the scrubber was checked! The movie "Apollo 13" does a fair job of showing how rapidly the engineers in Houston devised the kludge and documented it, but because of time contraints of course they can't show you everything. NASA is a stickler for details. (Believe me, I've worked with them!) They don't just rapid prototype something that people's lives will depend upon. Overnight, they not only devised the scrubber adapter built from stuff in the launch manifest, they also tested it, documented it, and sent up stepwise instructions for constructing it. In a high-maturity organization, once you get into the habit of doing that, it doesn't really take that long. Something that always puzzles me when I meet cowboy engineers who insist that process will just slow them down unacceptably. I tell them that hey, if NASA engineers could design, build, test, and document a CO2 scrubber adapter made from common household items *overnight*, you can damn well put in a comment when you check in your code changes. ;-)
"Overnight, they not only devised the scrubber adapter built from stuff in the launch manifest, they also tested it, documented it, and sent up stepwise instructions for constructing it."
Yes and it was marvellous work. But from what you have said not at the original design stage. Probably because they did not expect the event. It's not the scrubber, it's the theory that it was not done at design and test but ultimately successfully done when needed. If they hadn't needed it they wouldn't have done it.
I'm mindful this is way off topic. Just a reminder of what I was trying to suggest to Chris yesterday that yes new medicines and drugs need testing but further down the road different applications are found. Hence use off label, which is what I'm doing. I cannot add any further comment or my wife's going to string me up!
No, not at the original design stage, of course. ;-) It was designed to fit the CM, not the LM. And I doubt very much they went to the trouble of giving the adapter kit a part number and bill of materials and everything. But I am still in awe of what those guys did.
There was one thing the movie did a great job of showing the testing effort for: the Command Module restart procedure. They ran it over and over and over and over again, because they did not want to give an untested startup procedure to the astronauts -- the stakes were far too high.
That's another example of where the comparison to cancer treatment breaks down, really. Modifying the CO2 scrubber was a matter of immediate life-and-death, with a very real and very imminent deadline. The CM restart procedure had a bit more time, but was more difficult to work out. It's deadline was fixed by Newton; they would reenter at exactly the same time no matter what they did, but the work being done in the simulator would determine whether or not they'd survive the experience. Either they'd have enough electrical power, or they would not. It was the 11th hour when they finally worked the precise sequence that would squeeze *just* enough power out of the battery to do what needed to be done.
Cancer is different. If you're to the point where a decision made today will decide if you're alive tomorrow, either the decision is going to involve surgery or the thing that's going to kill you isn't cancer. If you're still at the point where chemotherapy is relevant, then you're probably not in danger of dying tomorrow. You have a little more time. And there is also the matter that the human body is not as well known as the Apollo spacecraft. Finding the ideal bootup sequence for the command module was a deterministic problem -- you have X amount of power, you need this set of functions available, you know how much power each of those consumes . . . there is a finite and comparatively small number of options to try out. In a pinch, you could theoretically brute force the solution. And you have simulators. With cancer, there is no simulator, it isn't deterministic (not the way a computer is, anyway, being made of logic gates), and the set of possible course of action is nearly infinite. So what do you do? This is a more difficult question than any which the flight controllers of Apollo 13 faced. At least, until they themselves got cancer. Jack Swigert, CM pilot and replacement for Ken Mattingly. (The prime crew had been exposed to rubella, and Mattingly was not immune. In case of him developing rubella in flight, he was pulled and Swigert flew instead.) He died of cancer in 1982.
One last aeronautical reference/question:
When the squadron of clues flew over Martin's head was it
a. going less than Mach 1
b. flying at exactly Mach 1
c. exceeding Mach 1
Martin, I hope things go well for you. However, I also hope that doing well is not dependent on your ability to make well-reasoned decisions when faced with cancer. Someday, if all goes well, you'll look back at this thread and shake your head in the realization that it was not your finest moment.
I truly hope that you have years - or decades! - to chuckle over it.
@ Martin: When you came here with statements about Burzynski's *treatment*, you stated that we were unaware that Dr. B. is not, using antineoplaston for patients...as *if* we didn't know that. It was pointed out to you that he hasn't prescribed antineoplaston for new patients, since January 2013, but is still prescribing and dispensing them to patients who had started that treatment prior to that date. He is using a proprietary drug in its place and *traditional* anticancer drugs for his supposed "gene targeted therapies"....a virtual kitchen sinkful of them.
I provided a link to the Texas Medical Board and the SOAH cases against him that describe the consequences of Burzynski, an untrained oncologist, prescribing multiple *traditional* drugs and off label *traditional* drugs at jacked up costs to patients.
Let me repeat my statements.
Off label prescribing is used quite frequently by cancer specialists in the USA; Dr. Burzynski is not an oncologist....
http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes…
"...Is off-label drug use legal?
The off-label use of FDA-approved drugs is not regulated, but it is legal in the United States and many other countries. An exception to this is the use of some controlled substances, such as opioids (pain medicines like morphine and fentanyl). These drugs cannot legally be prescribed in the United States except for approved purposes.
While it’s legal for doctors to use drugs off label, it’s not legal for drug companies to market their drugs for off-label uses. Off-label marketing is very different from off-label use."
and,
"...How common is off-label drug use?
Little information is available on off-label prescribing in oncology in the US. Off-label use can vary greatly from one doctor to another, depending on doctors’ preferences, knowledge, and past patient experiences. A 2008 study found that 8 out of 10 cancer doctors surveyed had used drugs off-label. Off-label drug use is well-documented and very common in certain settings, such as pediatrics and HIV/AIDS care.
Studies have reported that about half of the chemotherapy drugs used are given for conditions not listed on the FDA-approved drug label. In fact, the National Cancer Institute (NCI) has stated, “Frequently the standard of care for a particular type or stage of cancer involves the off-label use of one or more drugs...."
Oncologists have hospital affiliations, with hospitals; Burzynski has no affiliations.
Dr. B. is clueless about interactions and monitoring patients for those interactions with the drugs he prescribes, as evidenced by the frequency of his patients ending up in hospitals with hypernatremia and other serious side effects.
Dr. Burzynski has a history of lying to his patients about the efficacy of his *treatments*, by falsely interpreting the results of brain scans...thus continuing to screw patients out of their financial resources...and raising false hopes for the patient and the patient's family (See all the links provided to you by other posters and see Orac's prior posts).
So yes, I am concerned when patients chose the Burzynski clinic, rather than a cancer treatment center with trained oncologists.
I've been waiting for Narad to provide this link...he posted it on Orac's NSSOB. Here, we have a *picture* of how Stan sucks patients in...and the sheer crazy megalomania, when he is interviewed about his *treatments*:
http://www.houstonpress.com/2009-01-01/news/cancer-doctor-stanislaw-bur…
BTW, What about those supposed case studies that Stan submitted to medical journals...which were rejected because he didn't provide "scans"? How did Stan happen to omit those *scans*?
lilady,
Coincidentally, I posted the link on Josephine Jones's site yesterday, blockquoting the paragraph where he calls the reporter "a little man," and "a sh!t" with a "liitle brain" and where he claims he' might win a Nobel Prize "in three years." (The interview was done back in 2008, so we're five years later and still no closer to him getting that Nobel Prize. I'm not holding my breath...) Oh, and the classic "I came to this country with $15 in my pocket..."
Funny how five years have passed and nothing has changed: he's no further along with the clinical trials, the FDA approval,etc.
@Chris, WRT homemade aircraft - my late father-in-law was an engineer. He was a bit crazy in the Fifties, he was a speedway racer, did the wall of death on his Triumph, but he and his friends were mostly obsessed with flying.
Their gang had four members; all scarily intelligent single blokes, with access to the sort of stuff that would get them arrested today. Dad had been the artillery engineer on his base during national service, two of his friends had been engineers in the RAF, and the final one had been involved in designing some sort of defence barriers I believe.
Anyway, their dream was of personal flight. You know the sort of thing, jet-propulsion, powered hanggliders, and their favourite? The gyrocopter. The personal, one-man, lightweight gyrocopter.
First flight was to be after two years of tweaking by B, the scary genius of the group, a complete savant who could barely speak to humans, had obsessive rituals, and liked to dismantle guns and explosives at his mother's kitchen table.
They used to go onto the local airfield and test their bizarre flying machines. Out of the four of them B was the only one not maimed in their experiments. A certain person shot himself through his own scrotum by accident...
So the big day came, they gathered at the airfield, and watched as B pulled off a perfect flight and landing. It was running really hot, but buoyed by the first success he attempted take-off again. It flew alright, fast, high, and straight into the side of a hangar. B's body was incinerated, two local airfield staff were burned trying to put the fire out.
Dad and the other two burned all of the plans, he even sold his bikes, settled down and married, and became a complete speedphobe.
He often used to wonder how the world might have looked if he and B had perfected the design, and gone on to make it a mass market device,
Can you imagine airfields letting young lads play about there with fuel, explosives and bits of sheet metal now?
They'd be in Gitmo!
Something that always puzzles me when I meet cowboy engineers who insist that process will just slow them down unacceptably. I tell them that hey, if NASA engineers could design, build, test, and document a CO2 scrubber adapter made from common household items *overnight*, you can damn well put in a comment when you check in your code changes.
As a technical writer, this, this, this, this, this.
Please specify a Ship To address for your internets, and tick the box to receive an optional side of fries.
As someone who lives and dies by making information available to others for their use (and hopefully not abuse), Burzynski's lack of publications distresses me, and makes me on the face of it pretty near convinced there's no there there, never mind the whole scientific plausibility issue. Unfortunately, he manages to make a pretty good living off the gullible rubes, so, short of legal action, he has no incentive to change.
Indeed--at this point I don't see that he would have a lot to gain by publishing, even if the results do indicate efficacy.
- Don't forget to check the comments on Orac's next page Odds and ends left over after the Panorama Burzynski Clinic report
- I added some commenst for Martin there
Martin,
The patient I mentioned has since died. I have given Orac the cell phone number of a friend of hers who was on the phone with her during the incident at the Burzynski Clinic. Hopefully you will be hearing from him soon.
Good luck.
This page is now top of the google rankings for Dr Stan.
I thnk that should help to counter the new film...
I'm not sure what the hell is going on here or why you people are so against Burzinsky. Cancer kills people. Not Burzinsky. Burzinsky's treatments are a tiny fraction of the price of the extremely toxic and statistically less effective radiation and chemo therapies currently accepted. A friend of mine with a rare form of brain cancer ended up paying over 1.2 million for a combination of surgery, radiation and chemo. Her insurance only covered about half so she and her family were out of pocket over $600,000. She died from liver failure induced by the chemo.
The real question is, do you believe in corruption? Do you believe that oil companies are involved in coverups? Well Pfizer, the top grossing drug company, profited 14.6 billion in 2012. I can promise you, big pharmaceutical companies control the FDA and pay big money to confuse the public. I see over and over, people on this blog stating that Burzinski's treatments are not effective. We'll guess what, they are in phase III of FDA testing which means they have been proven by the FDA to be both safe AND effective (phase I and II). If the FDA had something concrete on Brizinsky, why have they failed to convict him of any wrong doing after taking him to court five times?
Brizinsky is a victim, but the real victims are those who have been mislead or are unable to take advantage of brizinsky's breakthrough because of the FDA's global influence. Something to keep in mind... For you bloggers out there who are getting paid to bash Brizinsky, you could very well be killing every person you convince that Brizinsky is a quack.
Mr. Hubbard,
I am not being paid by big pharma to write these posts. I do it because I believe in what I'm doing.
Just so you know.
Orac
@Logan - does that word salad mean anything?
Ever read "The Other Burnzynski Patient Group?"
He's an extremely wealthy man, and yet all of those patients are dead.....care to explain why the Phase III study you mention hasn't accrued a single patient (in over a couple of years or more)?
Mr. Hubbard:
Blockquote fail, on the the first paragraph is supposed to be in italics.
@Logan Hubbard
This is wrong. First off, the FDA does not "prove" anything. Second, Burzynski's nonsense is not in phase III trials, as shown by Chris. Third, drugs may make it through phase I and phase II trials and still fail in phase III.
If you believe that Burzynski is not a quack and that his treatments actually work, then pressure him to publish the results of his completed phase II trials. He has yet to do this. The only thing he has offered are case reports from selected cases, no controls, and enough room to suspect the results are due to previous conventional treatment or chance alone.
Pete Cohen, speaking on behalf of the clinic on BBC radio June 3 (the day of the Panorama debut, said he doubted the Phase III trial would ever begin, due to the high cost of running trials. Money that Burzysnki apparently just doesn't have.
It was supposed to have reached its midway point by 2013 according to the document Chris linked to. And yet they're still not even open.
Make that Primary Completion Date for the Phase IIITrial which is coming up Dec. 2013. Think they'll make it?
Logan Hubbard
Lets begin at the beginning shall we:
"I’m not sure what the hell is going on here or why you people are so against Burzinsky"
Well there is a search tool here and I advise you to use it with Burzysnki as the search term. You will then find out quickly why regulars here feel like they do and hopefully your efforts will supply you with enough knowledge to make meaningful comments here in future.
"Cancer kills people. Not Burzinsky"
A hint. In trying to develop a logical argument you need at least two propositions. "Heart attacks kill people, not my Dad" is not a logical defense of my Fathers character.
"A friend of mine"
Blah blah blah we have heard it all before. You are arguing from Anecdote. I See your Anecdote and raise you one. I know lots of people with Cancer. Hundreds in fact. A majority of them are in the US. None of them have spent anywhere near that sort of money not even those who took off label cutting edge pharmaceuticals and paid out of pocket. As for the fabled land of Oz we pay bugga all.
"She died from liver failure induced by the chemo."
Oh that's a no no around here. You cannot make a statement without offering some proof. If you can convince us that you were her treating physician then your statement may have some gravitas with us.
"The real question is, do you believe in corruption"
Typical loaded question. The inference is that if I believe in corruption that proves that company X is corrupt. For further proof of this corruption you pointed to their profits. Too many logical fallacies to even start adding them up here.
"I can promise you, big pharmaceutical companies control the FDA and pay big money to confuse the public" Ipse Dixit ...look it up
"Brizinsky is a victim"
Is this the same guy or one of Stans relatives that Lives in Brisbane? Your meaning of the word victim is something far removed from what I understand as being the definition, if indeed you are referring to Stan.
"For you bloggers out there who are getting paid to bash Brizinsky"
This is reserved for Orac then ? As this is not the blog of any minion here then I can just ignore that. Orac BTW does not require money, just a steady stream of electrons.
"you could very well be killing every person you convince that Brizinsky is a quack."
You base this in the fact you believe Stan to be the brave maverick doctor. However your statement contradicts itself especially if I can prove Stan is a quack.
Now Logan read a bit and next time try to present a cogent argument that we can follow and try to avoid getting myself playing logical fallacy bingo with your posts.
Well done Martin Vizzard....they tried to be negative...and you were having none of it Great.
What works, works....achievement is it's own chronicle....not the paper its written on
wish you a great recovery.
Sheila Jones: "What works, works….achievement is it’s own chronicle."
Well, we don't know if it works. Burzynski has not published any results, and he has thirty years of data. Perhaps you should go and offer to write up the results for all of those clinical trials. Or at least see why so few were completed.