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Stanislaw Burzynski: A deceptive propaganda movie versus an upcoming news report

Well, I’ve finally seen it, and it was even worse than I had feared.

After having heard of Eric Merola’s plan to make a sequel to his 2010 propaganda “documentary” about Stanislaw Burzynski, Burzynski The Movie: Cancer Is Serious Business, which I labeled a bad movie, bad medicine, and bad PR, I’ve finally actually seen the finished product, such as it is. Of course, during the months between when Eric Merola first offered me an “opportunity” to appear in the sequel based on my intense criticism of Burzynski’s science, abuse of the clinical trials process, and human subjects research ethics during the last 18 months or so, there has been intense speculation about what this movie would contain, particularly given how Merola’s publicity campaign involved demonizing skeptics, now rechristened by Merola as “The Skeptics,” a shadowy cabal of people apparently dedicated (according to Merola) to protecting big pharma and making sure that patients with deadly cancers don’t have access to Burzynski’s magic peptides, presumably cackling all the way to the bank to cash those big pharma checks.

The movie, Burzynski: Cancer Is A Serious Business, Part 2, was released to online sources on Saturday and will be released on DVD on July 1. As much as I detest Eric Merola and don’t want him to profit from his deceptions, I also wanted to see what the finished product actually looked like. So I swallowed hard, paid, and watched. It was probably the worst $15 I ever spent, but at least it’s tax-deductible for my not-so-secret other blog, from which I do earn a small amount of money for my writing. Of course, from my perspective, actually seeing the movie is almost anticlimactic given that we’ve had detailed reports from screenings of the movie by skeptics (excuse me, Skeptics) who attended, replete with conspiracy mongering, repeating claims to the movie to an echo chamber, and even Fabio Lanzoni. However, there are things one can’t adequately evaluate using second hand reports. Moreover, it just so happens that tonight the BBC will be airing an episode of its long-running news series Panorama about Burzynski. The episode is entitled Cancer: Hope for Sale? Although I fear the producers falling into the trap of false balance, I’ve heard enough from my connections to suspect that Burzynski won’t be happy at all about the story. After all, his minions have been pre-emptively attacking Panorama since Burzynski patients have let it be known that they had been interviewed for the report. Now, if we “Skeptics” were the all-powerful, overarching, nefarious force that Burzynski’s acolytes paint us as, one might think that we had planned it this way, to have the BBC Panorama episode come out the Monday after the release of Eric Merola’s movie. I’ll let Eric Merola puzzle over that one. No doubt he’ll build another one of his—shall we say?—imaginative conspiracy theories over this.

So what about the movie itself? First, let me point out that, after having seen the movie (which I will henceforth call “Burzynski II”, to distinguish it from the first Burzynski movie, which I will call “Burzynski I”), there’s nothing I would change in my original discussion of it. Burzynski II really is just like Burzynski I, only more so. I refer you to the link for my discussion of many of the problems with the movie. Here I will concentrate mainly on issues that I haven’t discussed before, because actually seeing Burzynski II was a revelation. (Heh, I put that sentence there on purpose Eric Merola; quote mine it if you dare!) First, as a movie, Burzynski II is at least as bad as Burzynski I. Eric Merola is a crappy, crappy filmmaker. The narration is done by the same creepy-sounding narrator such that it sounds like a low bit rate MP3 (say, 32 kbps); certain medical terms are mispronounced; there are lots of errors; and Merola demonstrates the same tendency to switch back and forth between camera angles in which the subjects of his interviews are looking at the camera to angles where they are not. The effect, I’m guessing, was intended to be edgy. What it ended up being (to me, at least) was irritating as hell. The music and cheesy graphics are also much the same as they were in Burzynski I.

The other thing that I wasn’t prepared for was just how unrelenting Burzynski II was in its propaganda. Burzynski I was one-sided to the point of ridiculousness, but Burzynski II takes that ridiculousness to the next level, much as each sequel to the original Transformers or The Fast and the Furious movies tends to be bigger, louder, and dumber than its predecessor. This is not a good thing. In Burzynski II, I mentioned that the messages are:

  1. Stanislaw Burzynski is a genius who invented “personalized gene targeted cancer therapy,” and is now being emulated by centers like M.D. Anderson, which are furiously trying to catch up.
  2. Burzynski is a Brave Maverick Doctor who is curing patients that conventional science can’t cure, and it’s not his fault when he can’t.
  3. Burzynski is a real scientist with tons of data supporting antineoplaston therapy who is being unjustly hounded by the FDA, the NCI, and big pharma to prevent him from bringing his cancer cure to market.
  4. The Japanese are on the verge of publishing definitive clinical trial evidence that antineoplastons work!
  5. Skeptics are evil meanies who cackle evilly as they terrorize cancer patients online and delight in crushing their hope.

Unfortunately, in Burzynski II the messages are even less subtle (if that were possible) than in Burzynski I. Whereas Burzynski I hit you over the head with its messages repeatedly if they were a series of 2x4s, in Burzynski II the 2x4s have bricks attached to their ends.

Burzynski II does have a slightly different structure than Burzynski I, however, although overall it’s very similar in many ways. Burzynski I spent the first 30 minutes or so discussing patient anecdotes to “prove antineoplastons work,” and then spent most of its last hour or so lambasting the FDA, the Texas Medical Board, and big pharma. Burzynski II, on the other hand, although it begins similarly with some text declaring just how awesome Burzynski is and how evil the FDA, the Texas Medical Board, and big pharma are, followed by a montage of news and TV segments extolling Burzynski and/or attacking his critics, is a bit more free-form, interspersing patient anecdotes with attacks on big pharma, plus a truly bizarre segment attacking “The Skeptics” near the end. I’ve already dealt with at least four of these anecdotes before, those of Laura Hymas (whose anecdote is the main one), Hannah Bradley (who gets surprisingly little screen time), Tori Moreno, and Amelia Saunders (whose anecdote is perhaps the most heart-wrenching if you know what happened—more on that later); so I won’t dwell on these anecdotes again here except for aspects that I haven’t discussed before that seeing the actual finished movie bears light on.

An ethical conundrum dealt with correctly

One of the things I wondered about last time was a segment in the movie in which Laura and her fiancé Ben Hymas, having decided to go to the Burzynski Clinic, met with Ms. Hymas’ NHS oncologist to try to find out if the NHS would continue to cover her MRI scans, blood tests, and other medical “necessities” once she returned home to the U.K. Ms. Hymas, as you might recall, is a young woman who developed a brain tumor, underwent conventional therapy that only had limited success in slowing the tumor, and ultimately ended up deciding to go to the Burzynski Clinic. It is revealed in the movie that Ben Hymas had decided to record the conversation with the oncologist, and Eric Merola decided to include the recording in his movie. The results are not exactly what Merola intended. Merola clearly intended it to be damning of the NHS; in reality what I saw was a clinician desperately trying to do the right thing and dissuade Laura from a course of action that he considered to have almost no likelihood of helping. For instance, when Ms. Hymas says that the oncologist (who is not named) would not treat her if she went to Burzynski, here’s what he said:

Oh, no, no, no, no, no. Let’s make it very clear. Dr. Burzynski is a person who provides “private care,” in a non-conventional way—that we do not quite understand, or would condone.

Later, he says:

It’s not just his antineoplaston approach, which is controversial to say the least. I’ve had patients there who got cocktails of medications that could have a rationale to work in brain tumor patients but have never been tried and tested in this excessive combination.

The oncologist tries to point out that Burzynski’s clinical trials are not supported by the NHS or his hospital and explains that Ms. Hymas can’t expect the NHS to pick up the tab for tests required by Burzynski for a clinical trial not sanctioned by the NHS. He goes on to explain how the trial is not ethically approved at any NHS hospital and that because he’s not convinced that this is a useful therapy he can’t treat her according to Burzynski’s protocol and that he can’t provide care to her as long as she is under Burzynski’s care.

And here’s where the FDA’s failure has put doctors like this one in a bad position. Ms. Hymas’ mother keeps harping on how if the FDA approved these trials they must be legitimate and can’t be unethical. You know and I know that that’s not necessarily true (and, in fact, I’ve recently learned a lot about how and why these trials were originally approved by the FDA despite the lack of adequate preclinical evidence, but that’s a topic for another post). Another doctor at the NHS also apparently did agree to such an arrangement, which also put this poor oncologist on the spot in talking with the Hymas. Still, in the end, this oncologist said point blank that he does not feel it would be right of him to take instructions or even advice from Burzynski for what is and is not required, although he did appear to indicate a receptiveness to ordering Laura’s scans.

I keep thinking of what I would do if I were in that oncologist’s shoes. I don’t know. I do find it despicable that Merola would use an apparently secret recording of a private conversation and put it in a public movie. This should serve as a warning to all cancer doctors: If you have a Burzynski patient, expect to be taped and conduct yourself as though your words could show up in the next Merola infomercial.

The patients again and an ethical conundrum dealt with incorrectly

To the old familiar anecdotes are added new ones. I’m going to start with the one that is both new to me and most horrifying to me as a cancer surgeon, even more so than the cases I’ve discussed before such as Amelia Saunders or Hannah Bradley. I’m referring to Chris Onuekwusi, a man who was diagnosed with stage I colon cancer. Yes, you read that right. I’m referring to a patient with a stage I colon cancer. You should know that stage I colorectal cancer is very, very treatable. Resecting the involved segment of the colon or rectum containing the cancer has a high probability of curing it. Assuming it really is stage I, chemotherapy might not even be needed. (We don’t know for sure that Onuekwusi’s cancer really was stage I, because often surgeons don’t know the full stage of colorectal cancer until after surgery.) Instead of undergoing straightforward surgery that we know to have a high probability of success (which, I’ll also point out, can be done these days through minimally invasive laparoscopic techniques), Onuekwusi balked, as described in more detail than in the movie in this article on the Burzynski Patient Group website. He had even gone for a second opinion at one of the leading cancer centers in the world, the University of Texas M.D. Anderson Cancer Center, where the surgeon told him the same thing. He needed surgery first.

So what did Burzynski recommend instead of surgery? He recommended a cocktail of three drugs given off-label: Zolinza, Xeloda, and Avastin. Zolinza is vorinostat, a histone deacetylase inhibitor; Xeloda is capecitabine, which is a prodrug for 5-fluorouracil (5-FU), a pyrimidine analog that inhibits the enzyme thymidylate synthetase and thereby inhibits DNA synthesis to toxic effect in rapidly dividing cells; and Avastin is bevacizumab, a humanized monoclonal antibody directed against vascular endothelial growth factor-A (VEGF-A). As I described in a previous post about Burzynski’s “personalized, gene-targeted cancer therapy,” apparently Burzynski sent Onuekwusi’s tumor to Caris for testing. Caris generated a report, as it always does, and Burzynski came up with a witches’ brew of new expensive targeted agents, all said to be “off-label.” Well, not exactly. One of these drugs is just an old chemotherapy drug in a new form. Xeloda is, in essence, 5-FU, a chemotherapeutic drug that has been used to treat colorectal cancer, both as adjuvant chemotherapy and first-line therapy for metastatic disease, for over 40 years. There’s nothing really “targeted” about the drug except that it inhibits an enzyme, the way that many drugs do and have been known to do for decades. The advantage of Xeloda is that it can be administered orally, which is a good thing. Similarly, Avastin, although relatively new, is also commonly used for colorectal cancer, albeit usually for metastatic disease and not as adjuvant chemotherapy. That leaves Zolinza, which is an HDAC inhibitor used to treat cutaneous T cell lymphoma. One wonders if Burzynski included a second HDAC inhibitor, his second favorite drug after antineoplastons, sodium phenylbutyrate.

So why was I so horrified by this anecdote compared to others? The reason is simple. Onuekwusi appears to have had a relatively easily curable cancer with standard surgery, and that surgery is usually not particularly morbid, given that the scans shown in the movie indicated that it was a right colon lesion, as opposed to a sigmoid or rectal lesion. It is, in my opinion, medical malpractice to treat such a patient first with chemotherapy (and yes, what Onuekwusi received was chemotherapy, as Xeloda is basically an oral form of one of the workhorses of chemotherapeutic drugs, 5-FU). We know that chemotherapy usually doesn’t do a lot of good as primary therapy of solid tumors like colorectal cancers, although as adjuvant therapy it is quite effective at decreasing the risk of recurrence after surgery. In contrast, we know that surgery is highly effective for stage I colorectal cancer. We even know that if this really were stage I colorectal cancer, Onuekwusi wouldn’t even have even needed chemotherapy! Surgery alone is the treatment of choice. So, by Merola’s own description, what Burzynski did was to administer a toxic form of treatment that was probably not needed (chemotherapy) using drugs that were not approved for that indication, and apparently didn’t insist that the patient needed surgery. Now, it’s possible that the combination of drugs did eliminate the tumor. It’s also possible that the tumor was very small and completely removed with colonoscopic biopsy, leaving an inflammatory reaction behind to be imaged on the PET-CT images shown in the movie, a reaction that subsided over three months. Either way, Onuekwusi (and Burzynski) might have gotten lucky. But they both took an enormous gamble that could well have cost Onuekwusi his life. In my opinion, Burzynski deserves to have his medical license taken away on the basis of how he treated Chris Onuekwusi alone, not even considering all the other dubious things he’s done.

The rest of the “new” cases (i.e., cases I hadn’t been familiar with) followed a similar pattern to cases I’ve discussed before, wherein it’s impossible to tell whether the patient’s good fortune is due to Burzynski’s treatment or not. That includes the patients with brainstem gliomas. We are told repeatedly by the narrator that spontaneous remission of a brainstem glioma has never been documented in the medical literature, despite an exhaustive search. All I can say is that Merola and Burzynski must not have searched very hard, because I quickly found a few, for instance, of pontine glioma (and two more) and a brainstem cavernoma. Remember Tori Moreno? She is a teenager who was diagnosed with a brainstem glioma as a neonate who features prominently in this film as a Burzynski success story. Despite what Tori’s father and Eric Merola claim, it’s quite possible that she underwent a spontaneous remission. True, such remissions are rare, but it’s not correct to say that they never happen. Truly, Merola’s “exhaustive” research skills need some upgrading. It took me two minutes to find those articles. No, I’m not saying that that’s definitely what happened; I’m merely pointing out that it could have happened, which is why clinical trials are so important.

Among the “new” patients is also a woman named Patricia Clarkson with multiple myeloma, who is filmed with her husband in front of large windows with the sun shining in. Yes, they are mostly backlit; one would think that Merola could have found a better, less distracting room to interview them in. Be that as it may, the segment is introduced with in essence a rant about the FDA requiring that patient fail standard therapy before they can have antineoplastons. That is, of course, a standard requirement for new cancer drugs because on an ethical basis doctors can’t administer experimental therapy whose efficacy is unknown if there are treatments whose efficacy is known. Another common design for a clinical trial is to compare standard of care treatment against standard of care treatment plus the experimental therapy.

This segment is introduced by a black screen of white text that says:

Even if the FDA’s prerequisite if fulfilled, the FDA holds full dictatorial rights to refuse patients’ access to antineoplastons if they choose.

Merola says that as if it were a bad thing. It’s a rule designed to protect patients. Merola makes it sound as though this is an arbitrary rule designed solely to keep patients from getting antineoplastons. Mr. Clarkson, of course, rails against the FDA for making it so difficult for his wife to be treated with antineoplastons. What is not shown is that Burzynski did treat her with sodium phenylbutyrate, the orphan drug that is a prodrug for one antineoplaston. As is the case with nearly every Burzynski testimonial, it’s impossible to tell whether Burzynski’s treatment has done any good due to confounding factors. In Clarkson’s case, multiple myeloma tends to be a disease that has a highly variable clinical course and can take years before it can kill, sometimes several years. In other words, its survival curve tends to have a long tail. Mrs. Clarkson was only diagnosed in 2011 It’s also a drug that almost always seems to be included with Burzynski’s “personalized gene-targeted cancer therapy regimens,” almost no matter what.

Seeing is believing?

I can’t do a review of this movie without revisiting stories we’ve seen before. Even though I’ve extensively covered the cases of Laura Hymas and Amelia Saunders before, to me seeing is knowing just how intellectually dishonest Eric Merola is. For instance, seeing the Saunders family, rather than just hearing about them from second-hand reports, was truly heart wrenching. They are such a caring family who were so desperate to do anything for their daughter. Worse, however, is the way that Merola makes it sound as though the reason that Amelia Saunders ultimately did not survive her tumor is because her parents decided to take her off the antineoplaston therapy. I’ve discussed this issue before. Briefly, in November 2012 it was noted that Amelia’s tumor had started to develop cystic regions. Burzynski told the Saunders that this was evidence that the tumor was dying. As I pointed out at the time, this was almost certainly nothing more than the tumor outgrowing its blood supply and developing necrosis in the center, not evidence of an antitumor effect. Sadly, two weeks later, pediatric oncologists at the Great Ormond Street Hospital told the Saunders the same thing and that they thought Amelia was in the end stage of her disease. It was at that point that the Saunders made the completely reasonable decision to take Amelia off the antineoplastons.

This is how Merola describes it:

Two months after this interview, Amelia’s brain tumor began to swell and fill with fluid. There was confusion and disagreement between their local radiologists and the radiologists in Houston about why this was happening—so her parents decided to discontinue antineoplaston therapy. Amelia passed away with her parents at her side on January 6, 2013.

Merola then opines:

Brainstem glioma is as rare as it is deadly. Approximately 500 children a year in the United States and 40 a year in England are diagnosed with it. An exhaustive search spanning 27 years of all available medical literature worldwide reveals the absence of any patient ever being cured or living five years after diagnosis.

As I said before, Merola’s research skills leave much to be desired. True, five year survival is very uncommon, but not so uncommon that it can’t be studied. Similarly, as I pointed out before, it’s not true that spontaneous remission of brainstem tumors in children “never happens.” It’s rare, but it does happen.

Seeing The Skeptics

I’ve already extensively discussed Merola’s attacks on skeptics before, in particular his misinformation and paranoid conspiracy mongering. He goes out of his way to portray us as either incredibly misguided (“they mean good but do evil!”), hopelessly in the pay of big pharma, or so evil that we, as I put it before, cackle with glee as we condemn cancer patients to certain death by taking their antineoplastons away. It’s so heavy handed that even Leni Reifenstahl would turn away in embarrassment if she were alive today and subjected to a viewing. (Some of that would also be due to her recognition of Eric Merola as a talentless hack when it comes to being a filmmaker.)

Particularly seemingly damning are a series of Tweets flashed on the screen saying things like the Hope for Laura fund (the fund set up by Laura Hymas to pay for her treatment at the Burzynski Clinic) “appears to be just a money laundry for a lying quack fraud” and “when Laura dies #Burzynski will just move on to his next mark if she doesn’t run out of money first.” I think I know whose Tweets these were, and all I can say to that person is this: Zip it. In fact, if I’m correct about whose Tweets these are I think I have already done so on Twitter when I’ve seen this person getting too close to attacking cancer patients. Still, as utterly insensitive and “dickish” as those Tweets were, they do not represent the majority of skeptics, but rather a few jerks. However, we as skeptics need to remember that a few jerks perceived (or painted) as attacking cancer patients can do immeasurable damage to the cause of science-based medicine. So if you’re one of those skeptics making comments like that, knock it off. If I see you doing it, I will call you out publicly.

In contrast, I find it very hard to believe that any but the most deluded hard-core Burzynski believers will find the segment in which Bob Blaskiewicz, creator of The Other Burzynski Patient Group and the force behind the idea of promoting donations to a real cancer charity and challenging Burzynski to match it, anything but completely risible. His voice is electronically altered to make it sound ominous and evil; his face is blurred out, and the Virtual Skeptics podcast in which he discussed Burzynski is represented as a “Skeptics’ teleconference,” in which it is implied that Merola somehow obtained a secret discussion. It’s all very silly. I’d say it’s almost Monty Pythonesque, except that Monty Python were brilliant and produced such effects on purpose. Merola is a hack and is only funny by accident because he has no filters that tell him when he’s going way over the top.

So is Merola’s treatment of yours truly. There’s a hilarious picture of my SBM page with my picture partially blurred out, onto which Burzynski places marks for emphasis that I’ve been funded by the DoD (past tense, Eric, not the present tense that you used), the NIH, ASCO, and other organizations (as if getting peer-reviewed research funding were a bad thing). Then there’s the bit about my former funding, a small grant that’s been expired nearly a year now from Bayer Healthcare. Then, of course, there’s my not-so-super-secret other blog, which—gasp!—accepts advertisements from pharmaceutical companies. I knew about all of that before, but actually seeing it onscreen was rather bizarre. I can only wonder what it would have been like to be sitting at a screening of this movie and seeing it.

Then, there was the kicker.

Eric Merola and Laura Hymas’ fiancé Ben Hymas called me a liar. Regarding this particular blog post, they claim that I intentionally linked to an older blog post describing Ms. Hymas’ MRI results and ignored a more recent MRI. Their claim is patently untrue. Note the date of the post in question: November 30, 2011 at 1 AM. (Yes, the post was written on November 29 and set to go live at 1 AM the next day.) Now note when Ms. Hymas underwent that other MRI scan: November 29, 2011. Finally, note when Ms. Hymas posted the results of that scan? November 30, 2011, after the blog post in question went live. I suppose the accusation is that I am not psychic and able to have anticipated that there would be an MRI scan. Moreover, I agree with a commenter who showed up on January 8 and pointed out:

He never claimed they were the November results. He was analyzing the October vs. September results. In fact, the October vs. September results are more significant (in terms of size) than the November vs. October results. Laura is misrepresenting the report.

Here is a breakdown of the sizes of the tumor (in cm or cm2:

Sept = 2.0×2.5 = 5.00

Oct = 1.8×2.1 = 3.78

Nov = 1.7×1.9 = 3.23

Now, the percent reduction in size:

Sept->Oct = (5.00-3.78)/5.00 = 24.4%

Oct->Nov = (3.78-3.23)/3.78 = 14.6%

Sept->Nov = (5.00-3.23)/5.00 = 35.4%

In other words, the 36% reduction was over 12 weeks, not 6 as claimed, and about 2/3rds of that reduction occurred between the two scans ORAC analyzed. Interesting that Laura never posted the MRI from the November scan for comparison, nor any of the earlier scans from when she was undergoing conventional treatment. Also interesting that she claims she was told that her radiotherapy couldn’t have any effect because she only completed 7 of 44 doses of chemotherapy.

My post from November 30, 2011 was correct as written at the time it was written. Ben Hymas is quite mistaken in saying about me, “He’s lying to them.” Moreover, if I had screwed up, I would have admitted it. Indeed, part of the reason I looked into this so closely was because I wondered if somehow Merola had actually found a mistake I had made. You know the saying about the proverbial blind squirrel occasionally managing to find a nut? It’s possible, albeit unlikely, and in fact there was no mistake. Well, that’s not entirely true. I did misspell Ms. Hymas’ name; it’s a mistake I went back and corrected when I discovered it. (You’ll have to forgive me, as it was the first time I had read about the Hymas case.) In any case, the only reason I didn’t post an update was because the commenters had done such a good job addressing the criticisms that showed up a couple of days later. Whether you think that I should have posted an update or not, one can’t help but note that nowhere does Eric Merola mention that I wrote a much more recent analysis of Ms. Hymas’ clinical situation in February 2013 that incorporates all updates. It also pains me that Mr. Hymas would take Merola’s explanation at face value. I feel nothing but sympathy for relatives and friends of cancer patients, and I want Ms. Hymas to do well, but it hurts to hear Ben Hymas repeat Eric Merola’s demonstrably false accusation against me.

In case either Hymas sees this post, let me briefly repeat my most recent assessment of Ms. Hymas’ history as described online, my basic conclusion about Ms. Hymas’ case in February was this:

Laura Hymas is different in that she provides somewhat more suggestive evidence for a possible antitumor effect from antineoplastons, given the longer period of time since she finished her radiation therapy and since her still being in complete remission five and a half months after her first scan showing no residual tumor. However, her case is by no means the slam-dunk evidence that Burzynski supporters claim it to be (or, for that matter, that Merola touts it as in his upcoming movie), given that it has been less than six months since confirmation of a complete response. Moreover, given that HDAC inhibitors do seem to have some efficacy against glioblastoma, it is not unreasonable to expect that antineoplastons might actually have had activity in Laura’s case. Making claims, as Burzynski does, however, that his antineoplaston therapy is more efficacious than conventional therapy is unwarranted based on a single patient. Conventional therapy can produce durable remissions and complete responses, too, and, although they are still rare, they are becoming more common. That’s why legitimate randomized clinical trials are needed to determine if PB/antineoplastons have antitumor effects in humans; which tumors are sensitive; if there are any biomarkers of sensitivity; and to separate the signal from the noise. Anecdotes like those of Hannah Bradley and Laura Hymas can be suggestive, but in and of themselves prove nothing.

There is nothing in Merola’s deceptive movie to change my assessment of what happened in the case of Laura Hymas’ brain tumor or my opinion of Eric Merola. If anything, having seen Burzynski II, my opinion of Merola has plummeted even further, something I hadn’t thought possible.

Evidence, evidence, wherefore art thou, evidence?

Another section of the movie that I was highly interested in, having discussed it before twice, was Dr. Hideaki Tsuda’s antineoplaston research in Japan, which Keir Liddle characterized as underwhelming, and rightly so. This segment came near the end of the movie, right after the segment on The Skeptics and obviously meant as a retort to Burzynski critics.

What I learned about the trial was this. The trial was of a design like what I mentioned above, chemotherapy alone versus chemotherapy plus antineoplastons. Specifically, the trial tested 5-FU infused directly into the hepatic artery for liver metastases versus 5-FU plus antineoplaston A10 and AS2.1. A10 was administered intravenously for one week, and AS2.1 was given in the form of capsules for at least one year. Dr. Tsuda takes pains to insist that he got no advice or assistance from Burzynski, but that protocol is very specific. Why antineoplastons A10 and A2.1? Why A10 for only one week? Why A2.1 for a year? I also note that this is a rather old technique. Back in the 1990s, intra-arterial chemotherapy for liver metastases was all the rage, but these days, because of more aggressive resection of liver metastases and newer, more effective chemotherapy regimens for metastatic colorectal cancer, intra-arterial chemotherapy is seldom used anymore, much less intra-arterial 5-FU. That’s not even considering the technical complexity of placing the intra-arterial infusion pump and the potential complications from having a catheter in the hepatic artery. Dr. Tsuda is behind the times. Indeed, one notes that the CT scans shown from Dr. Tsuda’s group purporting to demonstrate responses to his combined regimen all date back to 1999, which makes me wonder just when this trial was done and, if it was done so long ago, why it hasn’t been published already.

As for the trial, were 65 patients, 33 in the control group and 32 in the antineoplaston group. Dr. Tsuda reported in the movie that the median survival for the control group was 36 months (which is actually rather long for liver metastases treated with intra-arterial 5-FU alone) and that the median survival for the 5-FU plus antineoplaston group was 70 months. Again, all I can do is to emphasize the usual things. This study is not published in peer-reviewed literature, and it was, in my estimation, highly irresponsible of Dr. Tsuda to promote it in a propaganda film before he actually published the results. We have no way of knowing whether the two groups were well-matched or if there were other methodological problems with the study. Let’s just put it this way. It’s way premature of Dr. Tsuda to proclaim that it’s “obviously not anecdotal any more.” Publish first, and let the scientific community be the judge of that.

There was also another part that makes me wonder whether this study will ever be published. Right after Dr. Tsuda proclaims antineoplastons not to be anecdotal any more, we’re treated to this quote from him:

We can’t go any further with these clinical trials allowing antineoplastons to gain market approval exclusively for the Japanese people—due to the Unites States FDA and the power they have over the world market.

The FDA would retaliate against any Japanese pharmaceutical company who would try to get antineoplastons approved in Japan by no longer approving their other drugs for the market in the USA.

It’s the perfect conspiracy theory. Dr. Tsuda claims to have data from a randomized clinical trial that’s good enough to use to gain approval for antineoplastons from Japan’s equivalent of the FDA, but he says he can’t because the FDA would retaliate against Japanese pharmaceutical companies. As I said, one wonders whether Dr. Tsuda will ever publish the results of his trial.

That leaves us with John James, who is listed as a research scientist with Targacept Pharmaceuticals, ranting about how cancer is profitable, how pharmaceutical companies have no incentive to find cures for cancers, instead preferring chronically administered drugs, and telling the sheeple (OK, he doesn’t actually use that word, but the meaning is clear) to “wake up.” What’s not pointed out is that Dr. James no longer works for Targacept and instead has started working for Healing Seekers, a group that does expeditions to remote areas of the world looking for “natural” cures. In fact, he appears to have left Targacept in October 2012, which makes me wonder whether if his participation in this movie had anything to do with it, as the timing fits. Or perhaps he was just a victim of the wave of layoffs that hit in October in the wake of the failure of Targacept’s two ADHD drugs in recent clinical trials. After a similar round of layoffs earlier in 2012, perhaps James saw the writing on the wall.

No, none of it is particularly convincing if you know anything about cancer research. I could change my mind if Dr. Tsuda actually published his results and it turns out that his trial was very well designed, but from seeing him describe them in a propaganda movie like this? Not so much.

In the end, if Burzynski had the evidence, he would have very likely published it by now. Through other skeptics who attended a screening of Burzynski II in the San Francisco area, I’ve learned that Ric Schiff, whom we’ve met before both here and elsewhere and who is now, according to reports I’ve been getting, really peeved that I questioned his claim that he is an “expert” in detecting medical fraud when as a cop he views himself as a “fraud expert,” is claiming that all the phase II studies recently wrapped up and are being prepared for publication. I have my doubts about that, but let’s assume it’s true for the moment. If that’s the case, then I submit that Merola should have waited until after some of those complete phase II have been published in the peer-reviewed literature to release his movie. Then his trumpeting of Burzynski’s “triumph” over the FDA, the Texas Medical Board, big pharma, and The Skeptics might have been somewhat more convincing. Data talks. BS walks. And there’s no doubt that Burzynski II is pure BS.

Now, all I have to do for now is to wait until I have access to the episode of Panorama airing tonight in the U.K.

Posted in: Cancer, Clinical Trials, Science and the Media

Leave a Comment (71) ↓

71 thoughts on “Stanislaw Burzynski: A deceptive propaganda movie versus an upcoming news report

  1. Oh great, the new Burzynski movie is out. David wastes no time to drag the next cancer patient onto the spotlight. Chris Onuekwusi this time.

    The decision to not get surgery for stage 1 colon cancer is questionable, but this man did get informed advice about surgical options, and its not our place to judge him as we are not in full knowledge of his medical record. He may have other conditions that make surgery risky.

  2. BobbyG says:

    Wow. Kudos for calling bullshit. It is scary how so many scoundrels take advantage of those fighting cancer. Man, I’ve been there.

    http://www.bgladd.com/1in3

    Not much has changed for the better in the ensuing 15 years.

    I’m probably gonna ask to interview you at some point for my new project: http://www.KHIT.org

    We could do an offline (“podcast”) rather than streaming so you can review it — i.e., I’ll give you final cut.

    KHIT will focus on “Health IT”, but so much of the “Information” on the patient side is weak or outright bogus. Pisses me off.

    See also my REC blog:

    http://regionalextensioncenter.blogspot.com

    I am also one who doesn’t suffer fools gladly. SBM has long had a permanent above-the-fold link on my REC blog.

    BobbyG

    1. David says:

      If Burzynski’s protocol is BS, why has the FDA cited it as Safe, (Phase 1 Clinical Trials)
      it has been proven to have positive results, i.e. Efficacy, (Phase 2 Clinical Trials) and advanced to Phase 3 Clinical Trials, (final proof Of Phase 1 & 2 Clinical Trials)?

      Common sense tells me that things aren’t always so black and white, i.e. surgery , radiation and chemotherapy do have positive effects in certain cases.
      However, in the case of a DIPG, or in layman’s terms, an inoperable tumor located in the brainstem..any reputable neurosurgeon will tell you that there is NO CURE and that radiation is the only method of choice, only temporarily delaying the inevitable death of the patient with the potential for debilitating side effects..

      Our founding fathers had the presence of mind to initiate separation of church and state, which protects the rights and freedom of individuals to practice their faith without government intervention…*and* to ensure that no particular religion shall influence the government, hence encroaching upon the rights and freedoms of its citizens.

      Doesn’t it seem almost un-american for an agency to have so much power over the individuals’ freedom of choice…brings to mind the folly of Prohibition in the 1920s and the power over the masses in Nazi Germany, or dare I say, the very reason we Yanks dissented against British rule way back when?

      Happy 4th Of July!

      David

      1. WilliamLawrenceUtridge says:

        If Burzynski’s protocol is BS, why has the FDA cited it as Safe, (Phase 1 Clinical Trials)

        Phase 1 clinical trials are to determine whether a protocol is in fact safe. Burzynski hasn’t reported out any of his trials, certainly not in any sort of scientifically-meaningful way, so we don’t know if his piss extract is safe. Further, we already know the safety and efficacy of the mish-mash of high-dose chemotherapy, all he’s really adding is his piss extract, but given his penchant for throwing high doses of whatever chemotherapy he can find at his patients wthout any specific protocol, his results are extremely unlikely to be interpretable.

        it has been proven to have positive results, i.e. Efficacy, (Phase 2 Clinical Trials) and advanced to Phase 3 Clinical Trials, (final proof Of Phase 1 & 2 Clinical Trials)?

        Are there such results? Can you link to them? From what I understand, Burzynski has basically released uninterpretable case series, lacking control groups, when he bothers to release any results at all. He has had small-n trials (30 patients) that have been ongoing for over a decade now. He’s charging patients for the “privilege” of being in such a clinical trial, charging them a lot in fact, but never seems to close them.

        Common sense tells me that things aren’t always so black and white, i.e. surgery , radiation and chemotherapy do have positive effects in certain cases.

        First, common sense is often wrong. Common sense tells us the sun revolves around the earth, but it doesn’t. Common sense tells us animals are designed, but they aren’t. Common sense tells us that if two things happen in proximity, one is causative, but that’s not necessarily true. Science tests and often common sense. Second, we know surgery, radiation and chemotherapy have positive effects (and horrible negative effects too). That’s not really controversial. The issue is that Burzynski charges his customers (not patients, since they’re not really in clinical trials) large amounts of money for the privilege of getting conventional chemotherapy plus his piss extract, which he’s not even sure has any actual effects.

        However, in the case of a DIPG, or in layman’s terms, an inoperable tumor located in the brainstem..any reputable neurosurgeon will tell you that there is NO CURE and that radiation is the only method of choice, only temporarily delaying the inevitable death of the patient with the potential for debilitating side effects..

        So what’s your point? That Burzynski is making claims unsupported by science? That cancer treatment is imperfect? That Burzynski is enriching himself off of desperate patients? All true.

        Our founding fathers had the presence of mind to initiate separation of church and state, which protects the rights and freedom of individuals to practice their faith without government intervention…*and* to ensure that no particular religion shall influence the government, hence encroaching upon the rights and freedoms of its citizens.

        Again, what’s your point? Doubly-so, since religion isn’t even mentioned in the article or other comments. “Freedom” shouldn’t be “freedom to lie to people to make money off of them”.

        Doesn’t it seem almost un-american for an agency to have so much power over the individuals’ freedom of choice…brings to mind the folly of Prohibition in the 1920s and the power over the masses in Nazi Germany, or dare I say, the very reason we Yanks dissented against British rule way back when?

        What’s up with the word- and concept-salad? Are you hoping that if you just say enough positive and negative words in a row, somehow you’ll be coherent? Is that the Lois Griffin approach to reasoning? Restrictions of freedom of choice is a form of consumer protection against dishonest hucksters who are happy to lie to your face if it’ll help them buy a ranch home. The real problem here is that Burzynski is permitted to keep making money under the sham of clinical trials, when really all he is doing is pillaging the bank accounts of friends and family of desperate cancer patients. You’re essentially defending Burzynski’s right to lie for money. Are you OK with people lying for money? Do you think there should be some fairness in cases of assymetrical information? Should there be some sort of obligation for, and legal penalty in case of dishonest dealing? I think there should be, but then again I have ethics and a brain.

  3. LCSW says:

    “# FastBuckArtiston 03 Jun 2013 at 7:24 am
    Oh great, the new Burzynski movie is out. David wastes no time to drag the next cancer patient onto the spotlight. Chris Onuekwusi this time.

    The decision to not get surgery for stage 1 colon cancer is questionable, but this man did get informed advice about surgical options, and its not our place to judge him as we are not in full knowledge of his medical record. He may have other conditions that make surgery risky.”

    Hmm. FastBuckArtist’s name leads to homeopathic directory. FastBuckArtist, Eric Merola called, he needs his computer back.

    Excellent deconstruction Dr. Gorski. Hopefully his medical license will be taken away as he appears to have strayed from his Hippocratic Oath. He also appears to be hiding behind “research” as a way to protect himself from civil litigation which will/should be his downfall. One can only hope.

  4. WilliamLawrenceUtridge says:

    How is Dr. Gorski dragging someone out into the light when Dr. Gorski got the information from a film in which Onuekwusi appears? Did Oneukwusi think he was being filmed for a private screening available only to Merola and Burzynski? In which case, he’s probably got a legal case against them for allowing this footage to be included in a film screened widely and sold for a nominal fee.

    The decision to not get surgery for stage 1 colon cancer is questionable, but this man did get informed advice about surgical options, and its not our place to judge him as we are not in full knowledge of his medical record. He may have other conditions that make surgery risky.

    In which case, since he appeared publicly in a film designed to promote an unproven cancer treatment, a fair way of depicting his case would include discussion of the reasons why he couldn’t get surgery. In fact, I’m surprised this wasn’t discussed openly, why did he go with Burzynski instead of conventional surgery?

    I do object to judging people’s personal medical decisions, to a certain extent. However, when those medical decisions are used as anecdotes as part of advertising an expensive, unproven cancer treatment, the decision bears analysis. Other people will judge and adjust their treatments based on these anecdotes. And we know anecdotes are not reliable; if if they are going to be used as evidence, they must be carefully selected and presented – ideally as representative of the best medical practice we have. This is not the case, this is a commercial advertising an expensive, unproven medical treatment (and in Onuekwusi’s case, one that appears to completely avoid conventional, curative care).

    If Onuekwusi didn’t want his medical choices to be discussed publicly, he shouldn’t have become a public figure.

  5. elburto says:

    FBA, you dull little man, surely it’s Merola who’s dragged Chris Onuekwusi into the spotlight?

    Let’s see here, your little man-crush Merola has:

    - committee Chris’ image and voice to film

    - laid bare his medical history

    - discussed the ins and outs of his consultations at various clinics

    - disclosed the details of his treatment at the hands of Count Scamula

    - held him up as proof of a ‘cure’

    Chris himself has written up his story and a testimonial for the BPG site.

    OTOH we have Dr Gorski who has:

    - told us what Merola has done.

    Now tell me again, who put Chris in the spotlight, the filmmaker or the blogger?

    Get back under your bridge.

  6. elburto says:

    Ha, my post crossed WLU’s, looks like we had the same idea.

  7. @WilliamLawrenceUtridge

    There are multiple risk factors that can make surgery dangerous. Surgical site infections, poor organ function, malnutrition, immune system disorders, all these factors are looked at in preoperative risk assessment. He didnt avoid conventional care, he went to 2 different surgeons first for assessment. They found a significant risk and he decided not to go ahead with the surgery.

    In the end he went into remission without surgery. You have to respect his decision as a patient.

    Gorski hears “stage I colon cancer” and instantly knows laparoscopic surgery is the way to go! Colonoscopies, CT scans and blood tests are not needed apparentl. A post on the patient group was sufficient evidence! Or an old facebook post in case of Sheila Herron.

  8. Badly Shaved Monkey says:

    Posting in haste…here’s a link to the BBC website news article to accompany the television report to be shown in 2 hrs.

    http://www.bbc.co.uk/news/health-22717245

    Interesting quote in the news article;

    “They say 776 patients with brain tumours were treated in trials before 2008. And that 15.5% had survived more than five years, which compares favourably to other treatments.”

    I think that is unintentionally revealing. I thought antineoplastons were a complete cure. But this looks like an honest and potentially accurate claim, which puts him down in the statistical noise of natural history and responses to the conventional therapies that the patients were already receiving.

    A bit like homeopathy, “It’s a COMPLETE CURE, that maybe kinda sorta works a tiny bit when we do trials and they prove that it’s a COMPLETE CURE”

  9. WilliamLawrenceUtridge says:

    So before you criticized Dr. Gorski for having the temerity to drag Onuekwusi’s case into the spotlight, now you’re perpetuating it? That’s a little hypocritical, don’t you think?

    Not to mention, why is it awful for Dr. Gorski to say Onuekwusi’s cancer treatment was riskier than it should have been based on what was reported on Burzynski’s website and propaganda film, but you can proclaim it fine and appropriate based on the same information? That’s a little hypocritical too it seems.

    Also, why do you go to such lengths to defend Burzynski, who basically gives loads of conventional toxic chemotherapeutic agents plus some piss extracts thrown in for good measure, but conventional care is damned and condemned for using lower doses of well-tested drugs, plus surgery? I realize your profession is almost solely based on knee-jerk, evidence-free, acontextual criticism of, and conspiracy-mongering regarding mainstream medicine, but why does that mean you have to support someone who offers essentially the same chemicals as conventional oncology (plus some piss extracts) and happens to bundle it with the same meaningless conspiracy mongering? Shouldn’t you be criticizing Burzynski, like you do conventional care, for dosing people with all those harmful drugs?

    Onuekwusi was diagnosed on May 2nd, 2008. At five years post-diagnosis he’s hardly out of the woods, but good on him if he survives. Unfortunately other people with similar cancers might not be so lucky if they decided to avoid surgery. I may grant him the right to pick his own decision as a patient, that doesn’t mean I’m willing to let his use in a propaganda film stand unchallenged, nor does it mean I respect his decision. Patient choice and informed consent doesn’t mean a free pass if you start playing cheerleader to an unethical and greedy bastard.

  10. windriven says:

    ” [T]he FDA holds full dictatorial rights to refuse patients’ access to antineoplastons if they choose.

    Merola says that as if it were a bad thing. It’s a rule designed to protect patients.”

    I must say that I have a certain sympathy for Merola’s perspective on this single issue. Adults, it can be argued, should enjoy more or less absolute agency vis-a-vis their own bodies. Adults do all sorts of arguably stupid things to themselves. Some subject their bodies to incredible physical abuse for the titillation of others* (boxing, American football, etc.). Others cover their bodies with tattoos and piercings for … well, I have no idea why. Currently about 78,000 people have signed up to be considered for a one way mission to Mars that has a considerable chance of being a suicide mission. We accept these arguably self-destructive behaviors but feel free to reject the freedom of even terminal patients to make themselves guinea pigs for quacks.

    In the event that an adult develops a serious disease, even one where medicine has a well-established therapy with a near absolute positive prognosis, that adult should be free to pursue whatever nonsense s/he desires so long as that pursuit does not present a danger to others (i.e. treating TB with reiki or not vaccinating their puling spawn).

    All this, of course IM(rarely-H)O.

    *And at least for the hope of a fat paycheck

  11. @Badly Shaved Monkey

    You are aware that conventional care for these brain tumors produces around 1% cure rate?
    If those numbers are accurate, 15% is amazing. A 15% cure rate for brainstem cancers would mean a substantial improvement over conventional care.

    Have to watch the BBC program now. Lets see where the numbers are from

  12. David Gorski says:

    Perhaps I should have said “designed to protect patients from unscrupulous practitioners who would sell unapproved treatments without giving patients sufficient information to make an informed decision.”

  13. David Gorski says:

    Have to watch the BBC program now. Lets see where the numbers are from

    I know from where they are not. They are not from any sort of peer-reviewed medical publication. Given that, they are pretty much worthless.

    As for Mr. Onuekwusi, if he can walk about and look relatively normal on camera for Eric Merola, chances are good that he’s almost certainly healthy enough to undergo partial colectomy. Even though I don’t do colorectal surgery anymore, in the past I’ve operated on patients who couldn’t walk and needed home oxygen. Now that’s a risky patient.

  14. Narad says:

    Have to watch the BBC program now. Lets see where the numbers are from

    I take it you’re new at this.

  15. elburto says:

    Hey FBA – Panorama =! peer-reviewed clinical trials.

    I wish Panorama was doing one of its one hour specials, half an hour doesn’t do this issue justice. We’ll see.

    Hopefully it’ll spark off some googling and Twitter debate.

    @WLU – Fast Bullsh*t Artist won’t condemn Burykidski for selling standard chemo at inflated prices, packaged as ‘Gene Targeted Therapy’. Seems that FBA will condone anything that doesn’t follow SBM protocols.

  16. Badly Shaved Monkey says:

    FBA

    As Dr G says, the numbers themselves are pretty worthless. My comment was on the interesting retreat into damning with faint praise these supposed miracle chemicals. A detailed analysis of the statistic itself is pointless. There are simply too many confiunders.

    But, now to you. As WLU says, it is frankly ridiculous that someone like you would step up to defend Buttinski. He uses toxic chemicals in high doses. Homeopathy uses content-free sugar. The only thing you and he have in common is that you practise something that is Not Medicine. You homeopaths spend so much time defining yourselves solely by your opposition to actual medicine that it seems you lose track of the people with whom you are cuddling up.

    Let’s get this straight. It Buttinski’s methods work, you’re out of a job. If yours work, he is.

  17. windriven says:

    There is an interesting case report in the Jan 2013 issue of the Journal of Pediatric Hematology/Oncology:

    “We report on 2 patients with diffuse intrinsic pontine glioma treated with radiation, followed by temozolamide 200 mg/m/d for 5 days every 28 days and bevacizumab 10 mg/kg/dose every 14 days. Both patients have ongoing PFS of 37 and 47 months from diagnosis. A decrease in tumor size by >65% was observed in both the patients. Both patients continue treatment. No steroid requirement since 10 weeks after radiation. Quality of life is excellent and the chemotherapy regimen is well tolerated.”

    Again, this is simply a case report out of Emory/Children’s – not an RCT. Radiation and temozolamide have been used together, at least experimentally, for a number of years with modest result. Bevacizumab is an angiogenesis inhibitor. Its addition has, at least, prior plausibility. The survival times reported are impressive.

  18. weing says:

    The enemy of my enemy is my friend.

  19. @Badly Shaved Monkey

    I am skeptical of Burzynski treatment and wouldnt refer a patient to his clinic. Yes, he uses highly toxic chemicals. Why am I not outraged by this? Unfortunately I do not have a non-toxic treatment to offer to brain cancer patients! Thats what stops me from criticising his clinic.

    The chemo drugs he uses have anti-cancer cell activity. He claims to personalise the mix according to patients genetic profile, not clear to me how exactly. I wont mention his urine antineoplastons as I dont understand how thats meant to help. It’s plausible this cocktail of chemo is killing the cancer cells and benefited some of his patients.

    I think attacking his patients is a dirty tactic. Some of these people were given no chances of survival by conventional medicine. Is it surprise when they went into remission, they are crediting Burzynski with the success? Good luck convincing them it was “spontaneous remission”.

  20. WilliamLawrenceUtridge says:

    Indeed, I made a comment a while back about the “big tent” nature of CAM – the important thing is tearing down your opponent, everyone can agree on that. But one must never make positive claims that can be tested. Nobody can criticize the mutually-contradictory assertions made by everyone else in the tent. It reminds me very much of creationists, where “intelligent design” liars-for-Christ who believe in a 4.5 billion-year-old Earth sit next to and nod along with young Earth liars-for-Christ who believe in a 7,000 year-old-earth as both claim the real problem is that evolution is a faith-based proposition. When you have nothing of substance with which to promote your own product, you fall back on a false dilemma – if I can just tear down my opponent, I can pretend that means my product works. It’s a logical fallacy, and like so many fallacies it is very compelling to people who aren’t aware of how prone the mind is to illogic. It’s the reason reporters “tell both sides”.

    That BBC article quotes Burzynski as saying:

    There are many foolish people and I tell you I’m dealing with scientists, we have concrete evidence, can you imagine that the US government dealing with us for so many years, they would allow me to be here if I just sell hope OK without any hard evidence?

    That’s basically what the DSHEA act lets you do. And they tried to stop you from “being there”, until you unethically exploited a loophole that led you down the path of extremely lucrative clinical trials that never end and are never reported. His statement assumes a good-faith effort on the part of both sides, and good-faith can always be exploited by scam artists and others engaging in shenannigans.

  21. windriven says:

    @weing and WLU

    “The enemy of my enemy is my friend.”
    “Nobody can criticize the mutually-contradictory assertions made by everyone else in the tent.”

    Honor among thieves.

  22. elburto says:

    I wonder how FBA enjoyed Panorama. I wonder if he’s going to go after Richard Bilton now, for daring to cast doubt on $camley and exclaiming that the production facility “reeked of urine”.

    Wayne Dolcefino was uncharacteristically silent, and still no data, just tons of lies about the FDA. When the Count was questioned about this he merely snapped that Bilton would be back if he got cancer.

  23. Jeremy Praay says:

    @FastBuckArtist
    “David wastes no time to drag the next cancer patient onto the spotlight.”

    In fact, David never seems to waste any time dragging peopl into the spotlight. Most of his posts that are not directly related to breast cancer (and even some of them) seem to do just that. One might even get the impression that he enjoys belittling others. Perhaps most of them deserve it, but certainly not all.

    Compare his approach to that of Stephen Novella. One attacks the authors, while the other attacks the issues. I may be wrong, but I seem to recall a rule in the old JREF forums against attacking the authors. Or maybe it was another forum. I really don’t recall. Regardless, it’s an immature way of addressing issues.

  24. Badly Shaved Monkey says:

    Apparently all his trial data will be published soon. I think it’s time for a campaign.

    “Where’s your data, Stan?”

    “Is it soon yet?”

  25. Narad says:

    That BBC article quotes Burzynski as saying….

    He’s had more colorful quotes.

  26. Narad says:

    “Where’s your data, Stan?”

    “Where are we going?”
    “Planet 10!”
    “When?”
    “Real soon!”

    The future begins tomorrow.

  27. David Gorski says:

    I think attacking his patients is a dirty tactic.

    So do I, which is why I don’t do it and called out a Burzynski critic on Twitter who did.

    I do, however, criticize Stanislaw Burzynski and his propagandist Eric Merola, both of whom richly deserve it.

  28. goodnightirene says:

    Am I wrong to understand that it is long past time to stop feeding the troll?

    —–

    @windriven

    There are problems for society when people just do as they please with their bodies. Most of the woo-inclined I have known who spurned surgery and opted for _______ quackery, ended up demanding every drop of chemo that evil allopathic medicine could muster once they realized the woo was worthless–of course they were Stage IV and metastatic by then, had run out of money/insurance. and went on Medicaid. Then we all got to “help” them live (maybe) a bit longer at enormous expense. These people refuse to check into hospice because that would be “giving up hope” and instead keep getting admitted to the hospital until they are finally pretty much “forced” to go to hospice, whereupon the relatives accuse the allopaths of trying to kill their loved one.

    I’m as compassionate as the next bleeding heart, but the “informed” part of consent can’t be stressed enough.

  29. windriven says:

    @irene

    “There are problems for society when people just do as they please with their bodies”

    Yes, I certainly agree. With license comes – or should come – responsibility. The exercise of agency would have to include consequences borne by the agent, not by society at large. And of course this opens to question the consequences that should apply to those who engage in other self-destructive behaviors. Should the smoker smoke until COPD or cancer makes him or her unable to work then burden his neighbors with the cost of his care? What about the overweight couch potato?

    I’ve argued before – perhaps in different venues – that our society is distorted by demands for broad liberties by those who are unwilling to accept the responsibilities that attend their exercise.

  30. elburto says:

    Wow, Jeremy Praay the lying liar is here, it’s like Troll Central.

    I have to laugh at these muppets who hate what Dr Gorski writes so much that they follow him around the internet.

    That’d be like me going out of my way to go to church services, or to listen to David Cameron, and then complaining profusely about what I was hearing.

  31. pmoran says:

    FBA, Chris Onuekwusi himself states that ” — I didn’t want surgery –”.

    I haven’t watched the video. Video is for advertising/scamming people — it is not an effective or efficient method of scientific communication. It is a well-established resort now for cancer quacks – Hoxsey, Gerson etc.

    From what I can gather otherwise about his story, I wonder if he had a cancerous polyp with uncertainty about completeness of removal or of lymph node status making surgery the wise option. Why else he would seek a second conventional opinion unless there was some chance that surgery was unnecessary? Those offering testimonials in justification of their cancer treatment choices commonly don’t provide the whole story.

    Or, does he have a low grade cancer whose progress has been slowed down by the several conventional methods that Burzynski has chosen to borrow from a mainstream that is supposedly going out of its way to suppress cancer cures ? That is another possibility.

    Onuekwusi’s would be a very interesting case if he actually had proven residual cancer before the treatment was started AND is he remains cancer-free for two or there more years, but that would support the usefulness of conventional agents used, not antineoplastins, or anything to do with Burzynski.

    The best thing you can say about B is that he does not promise his patients a cure — while nevertheless permitting them to have grossly exaggerated expectations as to the likely success of his methods.

    This is why he and Merola — are under attack — their lack of disclosure regarding his true results. No one can have any certainty as to whether his methods ever help cancer and this despite B having several decades in which to prove himself.

    .

  32. David Gorski says:

    That’d be like me going out of my way to go to church services, or to listen to David Cameron, and then complaining profusely about what I was hearing.

    I can only surmise that they somehow view me as a threat. Good.

  33. David Gorski says:

    From what I can gather otherwise about his story, I wonder if he had a cancerous polyp with uncertainty about completeness of removal or of lymph node status making surgery the wise option. Why else he would seek a second conventional opinion unless there was some chance that surgery was unnecessary? Those offering testimonials in justification of their cancer treatment choices commonly don’t provide the whole story.

    Yes, I had thought that as well. However, the PET-CT that was briefly flashed on the screen (They’re always briefly flashed cherry-picked images, one notes) did appear to show an ascending colon lesion that looked like it was near the hepatic flexure. however, it could very well have been as you said, but with inflammation from the biopsy having lit up the area, inflammation that subsided over three months. I would love to post an image, but I have no doubt at all that Eric Merola would try to sue me if I did, even though it would clearly be fair use.

    One notices that thus far Merola has not posted a sourced transcript to Burzynski II, as he did for Burzynski I. One wonders why.

  34. @pmoran

    You are right, we just dont know the whole story. He may have had a condition like crohns disease which causes inflammation of the colon, and it shows as a lesion on the scan, or inflammation from the polyp removal.

    The problem with Burzynski is he doesnt have competition for the brain tumors he treats and no incentive to publish results. He enjoys a niche monopoly in the area and can charge any amount of money he wants, the parents of children with brain tumors pay him $100k a year, for them its either Burzynski treatment or no treatment.

    They need an alternative. Fractionated radiation with etoposide maybe, not a cure but it improves the survival. Offer some hope at a reasonable cost, then Burzynski will have to prove he can do better.

  35. Jeremy Praay says:

    @elburto: To my knowledge, I haven’t lied about anything other than my identity (and the facts surrounding it), either here, or on the Respectful Insolence blog. Further, I believe I apologized for the ELoyd incident. Frankly, I was quite upset after the personal attacks on the Respectful Insolence forum. I did not expect everyone to agree with me, but I did not expect what transpired. I mistakenly thought that we could debate issues, but instead it became a discussion of my (now deceased) father and my ties to those Orac mentioned in his blog post. Since that time, I have studied Dr. Gorski’s posts on the issue of SBS, and I have found other problems which I may be willing to discuss, but not here, today. My medical knowledge generally ends there, however. The rest of my time here has simply been a learning experience for me. I have learned a lot, and I would like to move past that unfortunate incident. I’m not here to troll. But I guess you don’t have to believe me, and I wouldn’t blame you if you don’t. That’s why my comments are still being moderated.

    Regardless, Dr. Gorski is certainly not a threat to me nor to anyone that I know. I was frightened by some of his followers, but I later realized that they are harmless. He is entitled to his opinion, but I feel that he is best suited to discussing issues that he knows best. And honestly, the above article is very insightful. I agree with most of what he does, and who he exposes. I don’t agree with his approach, which is what I stated above, but it’s not my forum.

    So, elburto, I was very disrespectful to everyone here*, and I deeply regret that. My emotions got the better of me. It was a severe lapse in judgement. I care deeply about what I am doing, and many of those who have offered their time and knowledge to help with these wrongful convictions. It hurt to see them attacked, and I responded childishly. I am not a “lying liar” but as I said, I can certainly see how you could come to that conclusion based on my initial posts here. Nevertheless, I hope that this post puts that issue to rest. I don’t want to derail this thread any further.

    Oh, and I misspelled Dr. Novella’s name (Steven). I caught that when I hit the submit button, and my OCD is forcing me to mention it now.

    *especially Dr. Hall, who deserved none of it.

  36. goodnightirene says:

    @windriven

    I think we agree.

  37. WilliamLawrenceUtridge says:

    The problem with Burzynski is he doesnt have competition for the brain tumors he treats and no incentive to publish results. He enjoys a niche monopoly in the area and can charge any amount of money he wants, the parents of children with brain tumors pay him $100k a year, for them its either Burzynski treatment or no treatment.

    The problem with Burzynski is that he is permitted to continue defrauding the clinical trial system and dishonestly exploit desperate patients patients.

    The problem with Burzynski is that he lies, presents himself as an alternative to conventional care despite prescribing high doses of several conventional chemotherapeutic agents and is rather transparently gaming the system.

    The problem with Burzynski is that he is permitted to charge patients for enrollment in a fraudulent clinical trial, which completely removes any incentive to fairly test his system – why would he bother when he can just make millions with essentially no consequences?

    The problem with Burzynski is that he’s a deceptive snake oil salesman.

    Offer some hope at a reasonable cost, then Burzynski will have to prove he can do better.

    I find this rather staggering. Why do you don’t think he doesn’t need to prove that it works at all? His high-dose chemotherapy and piss extracts could be killing patients faster than they would otherwise die, they could even be incredibly effective interventions, we simply don’t know either way. For you to defend him, particularly when you’re critical of mainstream medicine in every other context (and make no mistake – Burzynski is using the tools of mainstream medicine, though at dosage levels and combinations that are untested and extremely high) suggests you only approve of him because of his routine criticisms of the FDA. We get it, you have to close ranks with anyone who criticizes the FDA because that’s what your identity as a CAM provider is based on. But have you ever thought about who you’re sitting next to? Burzynski actually embodies the worst of the charicatures you pretend represent real doctors. His dosages are high. His conflict of interest is massive. He’s using poisonous drugs. He’s using inadequately tested drugs. He’s obscuring side effects and making them impossible to detect or monitor. He’s charging patients exorbitant amounts for this. He’s like the embodiment of every trope about Big Pharma shouted by CAM promoters on the internet. He should be everything you hate about real medicine. Yet here you are criticizing Dr. Gorski instead. He doesn’t even use any of the nonsense fake treatments like homeopathy, herbs or acupuncture. You have nothing in common with him except for a rabid dislike of any form of evidence-based decision-making. How do you reconcile the cognitive dissonance?

  38. DavidRLogan says:

    Finally got through this one!

    I really appreciate the lengths you’ve gone in these posts (all the links, detail, etc.) That probably makes me a mindless brown noser they (the posts) have helped me enourmously when discussing the movie and/or scientific literacy generally. I would have almost certainly thought this was a great movie before I started reading this blog.

    It must take you lots of time to put them together and I really appreciate it. You’re a beast.

  39. @WLU

    I am not sure where you get the idea I am defending Burzynski or approve of what he does. I do not. I have sympathy for his patients who got the cold shoulder from conventional medical establishment. They turned to Burzynski as nobody else was willing to help them (the colon cancer guy is an exception).

    We have nothing in common, the Burzynski clinic is not alternative medicine in any aspect – the doctors working there are licensed MDs who sell cocktails of chemotherapy drugs under the protective wing of an FDA-approved clinical trial. He doesnt sell “piss extracts” anymore, its all chemo now. This is a mainstream private oncology clinic.

  40. WilliamLawrenceUtridge says:

    You do spend more time criticizing Dr. Gorski than you do defending Burzynski, but you do defend Burzynski. More accurately, you pretend that there might be something to his treatments and consistently fail to acknowledge the substantial conflict of interest and total lack of ethics in how he treats patient.

    More links for you to dance around. link link.

    Oh, yeah, you’ve nothing but bad things to say about Burzynski.

    Not to mention “They turned to Burzynski as nobody else was willing to help them (the colon cancer guy is an exception)” is utter bullshit. There were many people willing to help, but the informed consent these real doctors gave was real as well. It acknowledged risks and benefits and gave survival rates based on empirical data. Burzynski is selling nothing but false hope and installments on his mansion. So how can you justify his practice of pandering to, and charging exorbitant amounts to, desperate, dying patients? Is it the same way you justify selling unproven treatments to your clients?

  41. Badly Shaved Monkey says:

    They turned to Burzynski as nobody else was willing to help them (the colon cancer guy is an exception).

    That’s not fair, but maybe you didn’t think it through properly.

    It is not that nobody else was “willing” to help them, but that, based on the best available evidence nobody is able to offer anything that is truly curative. The oncologists’ problem is that they are not “willing” to feed to delusion that Burzynski offers any realistic prospect of effective treatment and this is very difficult position for a responsible doctor to find her/himself in.

    As an aside, patients do seem to go into the Burzynski process thinking in terms of permanent cure whereas even Burzynski himself on-camera for the BBC did not make such a strong claim. Yet, from somewhere in the Burzynski system, patients seem to equate his treatments with the chance for permanent cures. One wonders what off-camera messages are given. I find to be quite credible the Saunders’s statement on the programme that they were offered a 54% chance of cure.

  42. Badly Shaved Monkey says:

    Yes, what WLU said.

  43. @Badly Shaved Monkey

    I find to be quite credible the Saunders’s statement on the programme that they were offered a 54% chance of cure.

    Yes I believe he paints a rosy picture to entice people to come. One of the Burzynski patients said he touted a 40% survival rate but not in writing. Even a 15% survival is not very motivating to go fundraise hundreds of thousands of dollars. Unethical, yes, even criminal on the false advertising side.

    I feel there is an oncology counselling failure here. None of these people go to Burzynski directly. They consulted multiple MDs before going to Burzynski and were told you are going to die, the best we can do is alleviate your pain. Blunt and gives no hope to the patient. Couldnt they be referred to a legit clinical trial instead? There is a number of them recruiting. And participation is free of charge.

  44. WilliamLawrenceUtridge says:

    I feel there is an oncology counselling failure here. None of these people go to Burzynski directly. They consulted multiple MDs before going to Burzynski and were told you are going to die, the best we can do is alleviate your pain. Blunt and gives no hope to the patient. Couldnt they be referred to a legit clinical trial instead? There is a number of them recruiting. And participation is free of charge.

    I find it bizarre that you place fault on the consulting MDs (for apparently lacking a miracle cure for cancer). I place the blame in two places – Burzynski himself for deceptively marketing himself to patients and essentially lying to his patients in order to rake in huge amounts of cash while running fake clinical trials, and the regulatory bodies that allow him to continue making claims and defrauding his piss therapy patients.

    Seriously, how is it the fault of an oncologist for refusing to lie to their patients about their cure rates? How can you continue defending Burzynski’s ongoing lies and profiteering on the backs of desperate cancer patients? How on earth do you justify this to yourself?

  45. @WLU

    Seriously, how is it the fault of an oncologist for refusing to lie to their patients about their cure rates?

    No deception about cure rates is necessary to give the patient some hope. In any given month there are multiple clinical trials ongoing for new treatments of cancer. Being a research trial, cure rates are not known, the oncologist doesnt need to lie about anything.

    The patient came to conventional oncology first for an opinion. Clearly he had higher esteem and trust for mainstream oncology to start with. If he then goes on to spend $100k a year to join a Burzynski clinical trial, then oncology counselling has failed miserably.

  46. WilliamLawrenceUtridge says:

    But Burzynski is deceptive about his cure rate and his “clinical trials”, which are not clincal trials – they are revenue.

    Again, Burzynski isn’t running clinical trials, he’s pretending to because the Texas Medical Board has forbidden him to practice medicine.

    The failure is the regulators for not shutting Burzynski down, and for Burzynski himself for being unethical. The failure is not with the oncologists.

  47. In other cancer news, a team from UK finds a 63% improvement in prostate cancer in a 200 patient trial of naturopathic remedy containing extracts of pomegranate, broccoli, green tea and turmeric.

    Respect for our colleagues in UK willing to put on trial a naturopathic treatment with little financial benefit(the remedy is retailed for $10 a bottle). We need more brave clinicians willing to challenge the stranglehold of big pharma and put integrative medicine remedies in the clinic.

    1. pmoran2013 says:

      FBA, Prostate cancer is very sensitive to hormonal influences and pomegranate is a good source of phytoestrogens. So those results are plausible, while not yet supporting the use of such a product for any purpose.

      Far more spectacular results than that, with long term and sometimes complete cancer regression (but not usually “cure”) can be obtained in a high proportion of advanced prostate cancer patients using conventional hormonal agonists and antagonists.

      The concern is that prior sub-optimal oestrogenic influences might allow the cancer to develop premature resistance to a treatment that may be required later on. I don’t know that this is so, but users should be aware of this risk.

  48. WilliamLawrenceUtridge says:

    One of the criticisms raised by Ben Goldacre in Bad Pharma is the use of secondary measures such as prostate specific antigen rather than death rates due to prostate cancer. Also note the complete lack of control group. So what do we learn? Naturopaths, through ignorance or malice, do worse research than Big Pharma – which is reviled for the shoddiness of its research.

    Jebus, learn what science is.

    Still, at least this wasn’t in rats, you’ve managed to stop prescribing thalidomide to your customers.

  49. WilliamLawrenceUtridge says:

    And the more I think about this, the more annoyed I get. First of all, the statement “In other cancer news, a team from UK finds a 63% improvement in prostate cancer”. What’s a 63% improvement in prostate cancer? Reduced symptoms? Reduced tumor dimensions? Reduced morbidity or mortality? No, it turns out it’s something quite different:

    The 203 patients tested were a group of men who had been diagnosed with prostate cancer, but were not yet at a stage where treatment such as radiotherapy was required.

    At the end of the trial there was a 63 per cent difference in the rise in the level of protein produced by the prostate gland (PSA) which is an indicator of cancer.

    This is a measure of prostate-specific antigen, not actual improvements in prostate cancer. Further, how had they been diagnosed with prostate cancer? Was it through high levels of PSA? Because that test is less than ideal. In fact, it looks like even after a biopsy there’s no guarantee that you will accurately diagnose prostate cancer, and even if you do, there’s no guarantee that you will be at risk of death (or even symptoms).

    Further, how do you know that the changes were due to the magical drink? If you don’t know how the patients were diagnosed with prostate cancer, how do you know their original symptoms weren’t due to something else, for instance a prostate infection? How do you know the changes in PSA levels weren’t due to something else, for instance drinking more fluids? The control group could have been something as simple as increasing the patients’ water consumption, but there is no control group.

    This isn’t science, it’s marketing. You’re shilling for a juice company. This is a “seeding trial”. You’re whoring for Pomi-T.

  50. polskiepiwo@hotmail.com says:

    I can’t take this seriously because you don’t know what wherefore are thou means. Its mean why. not where.

    1. David Gorski says:

      That’s OK. I can’t take you seriously because you ignored the content and focused on one tiny thing as a reason to dismiss all the factual information about Burzynski’s lack of evidence.

  51. Let’s say all the conspiracy stuff was true, how does this explain the failure of international doctors to replicate the results? Also there is documented proof that people still die when under going his treatment. Even if the percentage is higher which cannot be backed up by anyone, this is by no means a cure. A cure works 100% of the time. Even if it is a feasible treatment, calling this a cure is a downright indisputable lie.

  52. Peter says:

    A cure is some thing that happens there are no percentages. All innovation in society beneficial for the advancement of the HU – MAN being come from outside all the establishments as they have to keep people as slaves to their little-minded systems. This is how the three satanic energies,politics,religion and big business, can live on this lower energy planet,which by the way is the lowest energy planet in this life wave. The only place you will experience JUSTICE is when you leave your physical body. They you will go to where you are supposed to go,not where you pray or would like to go. The BBC programme on Burzynsky was so obviously bias and was so poorly done it isn’t worth commenting on. I no longer believe in things I now know the things. There is a great difference. It means that I have discovered them for myself as all people should do instead of following like slaves the three satanic energies. I send you all my love a peace unconditionally. Peter.

    1. elburto says:

      Meth – It’s a hell of a drug.

      1. Peter says:

        Keep smiling. You cant hate a thing wile smiling. Love Peter.

  53. WilliamLawrenceUtridge says:

    Well that’s mostly word salad, but claims about advancements only coming from outside the establishment is rather wrong, scientifically speaking. Though there are some innovative ideas that were unexpected, it’s rather rare for it to be a nonscientist (and essentially never comes from a CAM crowd). Even if this statement were true, it still wouldn’t obviate the need to prove it. At this point Burzynski is still merely asserting he’s got a cure for cancer, and asking us all to trust him while he collects hundreds of thousands of dollars in fees from dying patients.

    The BBC programme on Burzynsky was so obviously bias and was so poorly done it isn’t worth commenting on.

    Oh come on, it wasn’t that bad. I know they gave Burzynski too much credit, but they did go a little bit further than the usual “these two sides are equal” stance most journalists take. Perhaps next time they’ll stop pretending there’s anything to be found at all.

    And the rest of your comments suggest the need for medication.

    1. Peter says:

      Remember all reporters are looking for AN ANGLE to blow up their egos and nothing more.

  54. It is my great honor to have Dr Burzynski , the world renowned Cancer therapist of Houston/ Texas , join the Medical Order of the Knights Hospitaller and his work honored by the Catholic Church by being initiated as “Commander of the Knight-order of St.Gregory the Great”‘

    1. Chris says:

      Why? Really why should we care about those worthless awards, when there have been no Phase 3 clinical trials? He does not publish results of any of his Phase 2 trials, and has not even started the one approved Phase 3 trial.

      Honors given by non-scientific organizations have no meaning if he totally refuses to publish any of his “clinical trial” results.

    2. Chris says:

      Oh, and remember to not when your comment is actually sarcasm. Sometimes we use [sarcasm]…[/sarcasm].

      1. Chris says:

        AARGH! It should be: Oh, and remember to note when your comment is actually sarcasm.

        One freaking letter can be crucial.

  55. Hey Chris,Sorry ’bout that. But for some reason I could only post half my comment. The rest got cut off! And . Not that it matters at all

    1. Chris says:

      Hit the tab button, that will reveal more!

  56. You are absolutely right…it’s the clinical results that matter!!

  57. but what is connection between B, john of god and Schmidt?? Quacky

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