Respectful Insolence

Well, I’ve finally seen it, and it was even worse than I had feared. One might even say that watching it was like repeatedly smacking my head into a brick wall. It felt so good when it finally stopped.

I’m referring, of course, to Eric Merola’s latest cinematic “effort. Ever since it was revealed that ric Merola’s planned to make a sequel to his 2010 propaganda “documentary” about Stanislaw Burzynski, Burzynski The Movie: Cancer Is Serious Business, whose rank stupidity provided me with copious blogging material, 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. I suppose we’re also twirling our moustaches as well, especially the women, who according to Merola probably have moustaches too.

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-deductable for this blog. 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 preemptively 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. (Yes, I put that sentence there on purpose, Eric Merola; quote mine it if you have the cojones!) First, as a movie, Burzynski II is at least as bad as Burzynski I. No, it’s even worse.The narration is done by the same creepy-sounding narrator and recorded in a way that sounds like a low bit rate MP3. (Maybe it is a crappy 32 kbps MP3.) 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, like a squirrel with ADHD. Finally, the music and cheesy graphics are also much the same as they were in Burzynski I, although slightly better done, like putting a coat of glossy paint on a turd.

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 sheer 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. 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 2 x 4s, in Burzynski II the 2 x 4s have bricks attached to their ends. No doubt Merola’s intent in doing so is to have the same effect on your brain’s rational processes as that of the man wielding the 2 x 4s is.

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 incredibly awesome Burzynski is and how incredibly 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 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.

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 several times. 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 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

Eric Merola’s attacks on skeptics have been a frequent topic in the skeptical blogosphere, 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. In fact, I’m sure I know whose Tweets these were, and all I can say to that person is this: Zip it. Stop it. Put a sock in 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 again, next time 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 “About Me” page at my not-so-super-secret other blog, 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. Based on this particular blog post about an MRI Ms. Hymas underwent in 2011, they claim that I intentionally linked to an older blog post and ignored a more recent MRI result. This is patently untrue. Note the date of the post in question: November 30, 2011 at 1 AM. (Yes, as is my frequent custom the post was written on November 29 and set to go live at 1 AM the next day or 6 AM in the U.K.) 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, almost certainly after the blog post in question went live. I suppose the accusation is that I am not psychic and there fore couldn’t anticipate 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.

I’m afraid that was true. Moreover, I do not recall either Ben or Laura Hymas ever contacting me to let me know that Laura had had another MRI.

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 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. I suppose I shouldn’t expect any better from someone who thinks nothing of referring to me as a white supremacist and claiming that I like to eat puppies.

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 coming 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 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. Data talks. BS walks. And there’s no doubt that Burzynski II is pure BS. In fact, I think I’m being too kind.

Comments

  1. #1 Bob Blaskiewicz
    June 3, 2013

    Epic.

  2. [...] In which the latest movie about Stanislaw Burzynski’s “cancer cure” is reviewed…with Insolen… Orac, Respectful Insolence, 03/06/13 [...]

  3. #3 elburto
    June 3, 2013

    Thanks for taking the pain for us. Your pharma $hill millions will ease the suffering, and heal your poor, battered brain.

    Now, I’d call you a prince among men, but you’ve disappointed me. Not only are you a puppy-munching neo-Nazi, but now you tell us you’re not psychic?

    Feet of clay.

    Next you’ll be telling us that you’re not a supercomputer.

    Seriously, Merola is clearly unhinged. Casting you and Bob Blaskiewicz as supervillains is hilarious. He might as well have Photoshopped horns onto you both, and a background of flaming brimstone behind you.

    @Bob – How does it feel to be portrayed as a demonic agent of Big Pharma?

    I’ve said it before and I’ll say it again, TOBPG is an amazing compilation, and you have my utmost respect for creating it.

    I know it’s hard on you, it must be so emotionally draining seeing the same old lies and false promises endlessly repeated, and then writing it all up. Hopefully tonight’s Panorama will lead curious googlers to your site, and they can see the shamefully repeated scenarios of people handing over their life savings, being pumped up with false hope (even at the point of near-death), and then cruelly let down. He needs to be exposed as the monstrous charlatan that he is.

  4. #4 sophia8
    June 3, 2013

    If the recording of the conversation with Laura Hymas’ NHS clinician was passed on to Merola without his consent, then he almost certainly has a case for legal action under the UK’s privacy laws. I’d love to see that happen, because Merola’s only possible legal defense would be that broadcasting the conversation was in the public interest.

  5. #5 Marc Stephens Is Insane
    June 3, 2013

    BBC radio on Burzynski right now:

    http://www.bbc.co.uk/radio/player/bbc_radio_five_live

  6. #6 Marc Stephens Is Insane
    June 3, 2013

    Dr. B. clinic’s statement to BBC claims he treated 776 brain tumour patients last year; 15% survival rate. Nothing published of course.

  7. #7 Marc Stephens Is Insane
    June 3, 2013

    British pediatric oncologist Dr. Walker ripping Dr. B’s ethics to shreds on BBC.

  8. #8 Marc Stephens Is Insane
    June 3, 2013

    BBC teaser video has Burzynski himself telling journalist FDA won’t “allow him” to report any results. Total BS.

  9. #9 Orac
    June 3, 2013

    Supposedly it’s now available on BBC iPlayer, but unfortunately I can’t watch because it’s geoblocked, and I’m in the States.

  10. #10 Marc Stephens Is Insane
    June 3, 2013

    I was able to see it earlier here in Canada. Burzynski cackled like a madman after each question and told journalist to look around the room at all the research. “You might need it one day if you get cancer.”

    I just checked: video still works here:

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

  11. #11 Marc Stephens Is Insane
    June 3, 2013

    More on Burzynski coming up now (6:35 a.m. ET) on BBC Radio with Pete Cohen from the Merola movies and “Team Hannah” fame:

    http://www.bbc.co.uk/radio/player/bbc_radio_five_live

  12. #12 Marc Stephens Is Insane
    June 3, 2013

    BBC radio asked Burzynski’s clinic for an interview. They declined but offered Pete Cohen as their spokesman. Wonder where Dolcefino, Azad, et al. are?

  13. #13 Marc Stephens Is Insane
    June 3, 2013

    Pete Cohen says Phase III trials will probably “never happen” due to cost.

  14. #14 Columbina
    London, UK
    June 3, 2013

    Looking at the BBC new’s teaser article (linked above at #10 by Marc) on tonight’s Panorama episode gives me confidence that this may actually have true, as opposed to false balance.
    At the very least, Panorma has a strong reputation in the UK for not pulling its punches.
    Now if only my firm didn’t insist on routing all our internet via Germany and I could actually access listen to 5live.

  15. #15 Krebiozen
    June 3, 2013

    I listened to the last 10 minutes of the Radio 5 Live interview with Pete Cohen, and he was very articulate and persuasive, unfortunately (because cancer patients hearing him may be persuaded that Burzynski’s treatment works), though he floundered a bit when trying to explain why Burzynski has failed to publish complete reports of any of the many Phase II clinical trials he has conducted. If he can publish selected bits and pieces, including case histories, from the trials, why can’t he publish any of them in full? Does it really take 6 years to process a completed clinical trial for publication?

    Interestingly, I think Pete said that Hannah was completely cured, and that there was no longer any sign of a tumor on her latest scans – did anyone else hear this? I can’t find anything on the Team Hannah website about this, the last vlog was in April, which seems a bit odd. I’m really hoping that this is true, although I’m not at all convinced Burzynski’s treatments had anything at all to do with it. It looks quite plausible to me that surgery and radiotherapy were responsible for any improvements. It can take several months for the effects of RT to become clear, and pseudoprogression can be mistaken for tumor growth.

  16. #16 Eric Lund
    June 3, 2013

    I do find it despicable that Merola would use an apparently secret recording of a private conversation and put it in a public movie.

    As sophia8 points out, unless that doctor explicitly consented to allowing that footage to appear in the movie, it’s probably illegal, in the US as well as the UK. In some states, Mr. Hymas would have been breaking the law by recording that footage without the doctor’s consent. Unfortunately, it’s not necessarily easy for the doctor to collect damages from Merola if he sues in the UK, because he’d also have to prove it would have been illegal in the US (otherwise, the UK judgment would not be enforceable in the US). That’s collateral damage from the UK’s ridiculously plaintiff-friendly libel laws.

  17. #17 Elihphile
    June 3, 2013

    While we’re on the subject of Burzynski and UK TV, now’s probably the time to repost another BBC documentary about child cancer patients, that featured a Burzynski patient (in fact the patient mentioned in the link in #10) and showed some of the horrific side effects she suffered.

    http://www.youtube.com/watch?v=wbpikTuoLB0
    (the relevant parts are at 28.10, 39 and 52.50 mins)

    That child sadly, subsequently died, but the other little girl featured in the documentary, who I believe was also mentioned on the blog as a prospective Burzynski patient, never did go to the Burzynski clinic and is now in remission, the last I heard.

  18. #18 Elihphile
    June 3, 2013

    The UK doesn’t have specific privacy laws, at the moment.

  19. #19 lilady
    June 3, 2013

    Brilliant review of Burzynski II, Orac.

    It appears that the Panorama Show reporter did not give the movie a thumbs up review.

    Peter Cohen is already attempting some damage control:

    https://www.facebook.com/TeamHannahB

    “Hi everyone. This Pete Cohen here.
    I wanted to let you know that Hannah continues to do really well and make great progress.

    Tonight the Dr who treated her is being featured on BBC’s Panorama.

    This is not going to paint him in a positive light.

    All I can tell you is that this man and his treatment has saved Hannah’s life.

    We are forever thankful for all the support that everyone has given us and we will continue to update you on Hannah’s progress.”

    Congratulations to you Orac, Bob Blaskiewicz, Josephine Jones and the many other bloggers for your extensive reporting of the Burzynski *treatment protocol* and his maneuvers through the regulatory system and courts.

  20. #20 Orac
    June 3, 2013

    I really hope Pete’s right about Hannah doing very well, but one can’t help but wonder why it’s been over 2 months since her last blog and why Pete hasn’t shown any of her scans since fall 2012. I have a very bad feeling about this…

  21. #21 JGC
    June 3, 2013

    If antineoplastons actually did work as claimed Burzynski would need neither patient testimonies nor serial infomercials disguised as documentaries to attest to their efficacy: he’d have intead the results from the 60+ phase II clinical trials he conducted over the past several decades demonstrating effectiveness.

    The fact that patient testimonies and video programs are the best he can offer as proof of efficacy is in itself sufficient to completely undermine confidence in antineoplaston therapy..

  22. #22 Narad
    June 3, 2013

    Supposedly it’s now available on BBC iPlayer, but unfortunately I can’t watch because it’s geoblocked, and I’m in the States.

    This three-minute clip isn’t blocked.

  23. #23 Narad
    June 3, 2013

    Or this two-minute one that starts right with Scamley.

  24. #24 sophia8
    June 3, 2013

    Elihphile@ The UK *does* have privacy laws. It has the Data Protection Act (which is mainly concerned with information held on individuals) plus the Right to Privacy section of the 1998 Human Rights Act

  25. #25 elburto
    June 3, 2013

    Elliphile @18 –

    We do have privacy laws. We don’t have an overall privacy act, and GB didn’t sign on to the new EU social networking privacy laws, but there are a number of specific privacy laws here.

    There’s a list available:

    http://www.yourrights.org.uk/yourrights/privacy/

  26. #26 elburto
    June 3, 2013

    Sophia beat me to it!

    Same thing just happened on Orac’s friend’s blog. Stupid slow thumb, haha.

  27. #27 elburto
    June 3, 2013

    Ah, here it is:

    ” Person to Person
    Between two private individuals it is not prohibited to record conversations. The problem arises however, if that conversation is then provided to a third party for whatever reason, without the consent of both parties. Consent can be obtained retrospectively or by arguing it to be within the publics interest. As an example, reporters frequently record conversations covertly, but their defence is that the content is in the public’s interest and should be disclosed; in that knowledge of the recording would alter the content of the conversation significantly.”

    So, if the recording is not in the public interest, it cannot be used legally without the consent of all parties.

  28. #28 Denice Walter
    June 3, 2013

    Sceptics, pardon me, “The Skeptics” are tarred with the very same brush ritualisically employed in woo-based expert bashing- sceptics being a sub-group of the powers-that-be: those compromised merchants of autocracy- governmental agencies, institutions, universities, corporations, the media.

    “Don’t trust THEM!”, they shriek,”Trust ME!”
    Why?

    I’ve noticed- over the past several years- that woo-meisters spend as much time ( and electrons) on expert-abuse as they do on explicating their natural health mythos. These two sets of disinformation are intrinsically interwoven and symbiotically co-dependent: woo needs conspiracies to explain why its brilliance has not become the status quo.

    They want to control their audience’s access to information- as any cult would-
    because if their followers were to read sceptics, some might be convinced and thus, cross over to the Dark Side.

    So, calling us “puppy-eaters” or “mustache-twirlers” and “investigating” the sources of our ill-gotten monetary gain are merely ways to make what we have to say un-attractive ( by contagious magic) and thus, to be shunned as a source of contamination.

    Intriguingly, the “women with mustaches” meme reminds of a 1970s study wherein “successful women”/ “number one in her medical school class’ often were considered to not be “real” or “real women”.

    Are smart women not really women? Apparently to some people they aren’t: and yes, that was 40 years ago.

    You’ll also notice that when *ne plus ultra de* woo, Gary Null, describes his opponents ( pharma black ops guy, pharma rep, etc) they are “fat, bald” and usually sweating profusely, crammed into tiny expensive cars.
    The “beauty” of Jenny and her cohorts is often displayed.
    Critics of woo are pictured in the least flattering photos available.
    I could go on.

    I will leave the developmental significance to this tendency to your imagination.

  29. #29 lsm
    June 3, 2013

    @23: Wow, it appears that Burzynski isn’t very used to being crossed.

  30. #30 lilady
    June 3, 2013

    BTW, Arize (Chris) Onuekwusi, the Stage I colon cancer patient is listed as “a cast member” for the 2010 Burzynski movie:

    http://www.imdb.com/title/tt1632703/fullcredits?ref_=tt_ov_st_sm#cast

    I viewed Burzynski I last night and Onuekwusi’s interview, along with other patient interviews, did not “make the cut”. The list of the patients and their diagnosis, who didn’t “make the cut” appear at the end (1:46:55) of the Burzyynski I video:

    http://www.youtube.com/watch?v=rBUGVkmmwbk

  31. #31 lsm
    June 3, 2013

    Burzynski confidently tells us that the Phase II results will be published “very soon” (when doctors will be coming to him to learn at his feet). Call me cynical, but that seems like Burzynskispeak for 10 more years of seeing no complete results because BigPeerReviewedJournal is obstructing his brilliance.

  32. #32 elburto
    June 3, 2013

    Are smart women not really women? Apparently to some people they aren’t: and yes, that was 40 years ago

    Misogynists hold that “real” women should be satisfied with a man, having that man’s babies, and living out a life of domestic bliss.

    Don’t want a man? Not a real woman.
    Don’t want kids? Not a real woman.
    Want to devote yourself to academic or to a profession? You’ve guessed it!

    Think about how gay women are described. We must have been molested, or had a bad time with men, or just not met “Mr Right”. We must be faulty or broken, we can’t just have no sexual interest in men, there must be some reason.

    So it goes for doctors, always described as “lady doctors”, or women without kids who are described as childless. Always reminded of their status, or that something is “missing”.

  33. #33 elburto
    June 3, 2013

    Are smart women not really women? Apparently to some people they aren’t: and yes, that was 40 years ago

    Misogynists hold that “real” women should be satisfied with a man, having that man’s babies, and living out a life of domestic bliss.

    Don’t want a man? Not a real woman.
    Don’t want kids? Not a real woman.
    Want to devote yourself to academic or to a profession? You’ve guessed it!

    Think about how gay women are described. We must have been molested, or had a bad time with men, or just not met “Mr Right”. We must be faulty or broken, we can’t just have no sexual interest in men, there must be some reason.

    So it goes for doctors, always described as “lady doctors”, or women without kids who are described as childless. Always reminded of their status, or that something is “missing”.

  34. #34 elburto
    June 3, 2013

    Hmm. Duplicated my comment with one screen tap, weird!

  35. #35 TBruce
    June 3, 2013

    You’ll also notice that when *ne plus ultra de* woo, Gary Null, describes his opponents ( pharma black ops guy, pharma rep, etc) they are “fat, bald” and usually sweating profusely, crammed into tiny expensive cars.

    You will also notice if you do a GIS for “Gary Null” that his photos present a Senior Stud image. Looks pretty hot, apart from the “not found in nature” hair colour..

  36. #36 Denice Walter
    June 3, 2013

    @ TBruce:

    While there is absolutely nothing wrong** with either men or women dying their hair – or not dying it- there is an ethical problem when you tell customers that it is ‘all natural’ and due to a vegan diet, supplements, exercise et al.
    And then sell supplements, foods, books and high-priced retreats.

    -btw- I just spent a few months convincing a guy to NOT dye his two-tone hair whilst tinting my own- it’s purely aesthetics.

    ** although it is an affront to my artistic sensibilities. OUCH!

  37. #37 lilady
    June 3, 2013

    I can spot bad henna jobs, face peels and eye lifts a mile away. What’s next for Null…a surgical procedure to remove his turkey waddle?

  38. #39 Narad
    June 3, 2013

    You will also notice if you do a GIS for “Gary Null” that his photos present a Senior Stud image.

    It was better when he let his freak flag fly.

  39. #40 palindrom
    June 3, 2013

    Narad @39 —

    …when he let his freak flag fly.

    Thanks a lot. Now I have “If 6 was 9″ playing in my head.

    (And of course, it’s great.)

  40. #41 Chris Hickie
    June 3, 2013

    I remember when it came out that Michael Jackson had died from a propofol overdose given at home. And I kept thinking to myself…”boy is his doctor going to get in big trouble for giving a medicine for use only in ORs and ICUs simply to help the KOP get to sleep.”

    But, no. Dr. Conrad Murray didn’t have his license to practice cardiology suspended in California until he was INDICTED and ordered to stand trial for the death of MJ (http://www.popeater.com/2011/01/11/conrad-murray-license-suspended/ , sorry for the huff po) .

    Where was the CA medical board on this, when it was well known before the indictment that Murray had obtained the propofol by lying to those he bought from. Heck, Dr. Murray only got 4 years in prison for what he did.

    I wish doctors had more guts (like you, Orac) to call out those among us who are liars, cheats, scammers, quacks, charlatans, etc. Sadly, bad physicians can still flourish in this day and age, and Burzynski represents yet another scoundrel.

    But it is only by exposing them that there is any chance for things to change.

  41. #42 elburto
    June 3, 2013

    Wow. Panorama was pretty good tonight. It’s often sub-par and sensationalised, but it was decent tonight.

    Seeing those poor little girls, Luna and Amelia, and their devastated families was awful.* The doctor from the hospital that treats child victims of Stan’s “All natural, non-toxic therapy” pretty much said it all, “I haven’t seen a survivor yet”

    Oh, and a note to Hannah Bradley- saying “Radiotherapy doesn’t work for everyone” does not mean that Burzynski’s PPP** works at all.

    Could someone more qualified tell if Hannah’s stilted speech and apparent difficulty grasping words seem like a medical issue? She doesn’t seem as fit and well as her partner claims.

    Nice to see Wayne and Lisa Merritt too, I wish them well. It was nice to put faces to the names.

    * playing ‘Cold Water’ by the Reindeer Section in the background destroyed my already limited ability to be unemotional.

    *” Piss Poor Protocol.

  42. #43 Chris
    Uk
    June 3, 2013

    Just watched Panorama as well. Pretty good on the whole, I think they got the message across although I would have liked to see it stretched to an hour.

    Probably a cheap shot but seeing the Burzyinski “team” together for the interview brought the Adams family strongly to mind. Why folks don’t run a mile at the sight is a mystery. Burzyinsky himself came across horribly, arrogant and evasive.

  43. #44 janet
    June 3, 2013

    Elburto
    @ 32 &33
    When I was in high school, my counsellor (a nun), upon hearing I wanted to be a veterinarian, told me that “ladies don’t become veterinarians.” I replied, “That’s okay, I hadn’t planned on being a lady.”
    I got detention for a week. :)

  44. #45 Orac
    June 3, 2013

    @23: Wow, it appears that Burzynski isn’t very used to being crossed.

    Burzynski is well known for being arrogant and quick to anger when he is criticized. You should see some of his quotes from articles in the 1990s. You don’t dare criticize the Great and Powerful Oz Burzynski. :-)

  45. #46 elburto
    June 3, 2013

    Nice one Janet! A teacher once told me I shouldn’t drink alcohol because it would destroy my ovaries. She wasn’t happy when I replied with “In that case, Miss, mine’s a pint!”. I was sent to the Head of Year for “insubordination and stubborn insolence”.

    Some things never change.

  46. #47 lilady
    June 3, 2013

    @ Chris: Michael Jackson had the financial wherewithal to hire his in-house drug (Propafol) pusher. At the time of Jackson’s death, I recall an interview with an anesthesiologist, who described reports from patients who underwent surgery while anesthetized on Profafol….

    http://abcnews.go.com/Health/Drugs/michael-jacksons-death-propofol/story?id=14617723#.Ua0EM5xAHrc

    One could surmise that Jackson had experienced those *pleasant effects* while undergoing those multiple plastic surgeries (that never happened, according to Jackson).

    The Jackson wrongful death case was a high profile case, as were the multiple deaths caused by injected intrathecal medications, which were caused by bacterial and fungal contamination from the New England Compounding Pharmacy, where the FDA ( finally) “fast-tracked” their final investigation of that compounding pharmacy:

    http://www.cbsnews.com/8301-204_162-57579835/report-reveals-fda-knew-of-complaints-against-massachusetts-pharmacy/

    Meanwhile, the FDA, which conducted an extensive audit of the Burzynski clinic, months ago…has not fast-tracked…or reported…on the results of that audit. You have to wonder why, in spite of multiple investigations, and, in spite of the recent spate of unfavorable publicity about the Burzynski Clinic and antineoplastons, we are still awaiting the results of that FDA audit.

  47. #48 elburto
    June 3, 2013

    @Chris – that footage of him on a witness stand (from the 80s by the looks of things) was just so over the top. No wonder the TMB don’t like dealing with him.

  48. #49 lilady
    June 3, 2013

    ^ my last post directed at Dr. Chris Hickie (Too many Chris’s posting here) :-)

  49. #50 Adam
    June 3, 2013

    Modesty, humility, altruism and empathy. Just some of the words Burzynski has yet to look up the meaning of in a dictionary.

  50. #51 Elihphile
    June 3, 2013

    Regarding privacy laws, it’s probably more accurate to say that unlike, say, France, the UK doesn’t have a specific privacy statute (which is what I initially thought Sophia8 was suggesting), that’s easily actionable by most people, against private individuals and organisations. You can argue a civil case for protection of privacy, based on the Human Rights Act, if you have the resources to go all the way to the High Court to argue over the meaning of public interest, and potentially lose with crippling costs depending on how the judge is feeling that day. Certainly Naomi Campbell and Max Mosley have successfully pursued that route. Most people do not, hence the fact that our press feels free to publish intrusive and prurient information with merry abandon, and hence the argument over Leveson.

    There’s little or no realistic prospect of an ordinary Oncologist pursuing privacy action against Burzynski, Merola et al.

    Getting back on topic, I watched the Panorama documentary, and it was pretty devastating for Burzynski, with a queue of doctors denouncing him and his methods. The testimony of the doctor from his local children’s hospital was particularly devastating and even Luna Petagine’s mother admitted that the hospital hated him and saw themselves as continuously “clearing up his mess.” The Saunders’ were also interviewed, apparently before Amelia died, and appear to have completely turned against him even then. It’s interesting that the private experiences of the families are often very different from the image they try to project publicly.

  51. #52 Marc Stephens Is Insane
    June 3, 2013

    Merola’s feeble attempts at damage control on Twitter remind me how scientology tries to deal with bad publicity on the myriad critical articles that have appeared lately. A scientology sock puppet keeps posting “we’re the fastest-growing religion in the world” and then links to a scientology propaganda website. Merola keeps linking to his own self-serving movie website or a bogus “movie review” site he has just set up, whining to all detractors “you’ve been duped by the BBC; here’s the truth.”

    Burzynski and scientology: two destructive cults that suck their victims dry of their life savings.

  52. #53 Marc Stephens Is Insane
    June 3, 2013

    I almost gagged: Merola has just claimed on Twitter that his first film is in “100 million homes.” And since it “won” a viewer’s choice award on the Documentary Channel it can’t possibly be an infomercial.

  53. #54 Marc Stephens Is Insane
    June 3, 2013

    Look what Merola recently added to the “FAQ” section on the film’s website.

    14. Is it true that Eric Merola’s cousin, Domenica Prescott, was treated with Antineoplastons? Yes, it is true. Shortly after the original documentary was released in 2010, Domenica was diagnosed with a Glioblastoma Multiforme brain tumor. Even though Eric Merola had been investigating Antineoplastons and Burzynski since 2007, and even though the film was available to be seen at the time her her diagnosis, the remainder of the family wasn’t easily convinced that trying anything “alternative” would be a good idea for Domenica. After Domenica underwent 2 surgeries, a full round of chemotherapy (Temodar) and over 6 weeks of radiation—all of which failed her, Domenica began Antineoplaston therapy (ANP) in early 2011. After only 8 weeks of ANP therapy, her tumor decreased in size by nearly 30%. A few weeks later, Domenica died of a fatal seizure—where she suffered massive head injuries and excessive bleeding. By the time Domenica’s father found her on the bathroom floor, it was too late to save her. Seizures are very common with inoperable brain tumors like a Glioblastoma or Anaplastic Astrocytoma—in fact, that is usually how people discover that have a brain tumor in the first place. While this is extraordinarily sad, since Domenica did not die of her cancer being uncontrolled—but instead one of the common side effects of this tumor type—all while she was one of the lucky ones where ANP was showing efficacy. Many paid “Astroturfing” bloggers (people who have never met Mr. Merola or Domenica Prescott—who ironically have chosen to identify themselves as “The Skeptics”) ignore this reality—and wrongfully write and blog that Domenica died because Antineoplastons were unable to control her cancer.

  54. #55 Mephistopheles O'Brien
    June 3, 2013

    I am certainly very saddened by what happened to Domenica Prescott. I fail, however, to understand the logic of the statement “… Domenica did not die of her cancer being uncontrolled—but instead one of the common side effects of this tumor type…”.

  55. #56 Marc Stephens Is Insane
    June 3, 2013

    M O’B:

    And this latest claim from Merola contradicts what had been posted online for a few years about Domenica (I’ll try to find the link, but I’m sure Merola has had it taken it down by now to avoid to looking like the liar he is).

    From what I remember, she was also told the tumour was disappearing, only to die about 11 days later. Never was there any word about a seizure until now.

  56. #57 herr doktor bimler
    June 3, 2013

    Many paid “Astroturfing” bloggers

    Projection? The man is practically IMAX.

  57. #58 Marc Stephens Is Insane
    June 3, 2013

    It is possible Merola is telling the truth about his cousin’s seizure, but that doesn’t mitigate the fact there’s no reference to her death on this web page over two years later. In fact it looks like they’re still trying to raise money for her treatment:

    http://www.concretemadenew.com/settingthemfree/Domenica_Prescott.html

  58. #59 Marc Stephens Is Insane
    June 3, 2013

    Who is more likely to be doing any “duping”: the BBC, without any dogs in the race, or a professional liar (AKA advertising veteran) who has been shilling for Burzynski for over three years?

    And I don’t believe for one second that he “almost went bankrupt” making the films. Maybe the idea for the first one really was his idea, but once Burzynski saw how effective a tool it was for generating business the second was almost certainly funded by the clinic.

    They are low-budget films anyway, with a crew of one. Merola couldn’t even be bothered paying for a real narrator; either his ego or his budget (or both) dictated that he “hire” himself, which was a major mistake. His monotone, expressionless delivery almost lulled me to sleep. But then again his brother’s crackpot conspiracy films espouse the same piss-poor production values.

  59. #60 Ren
    June 3, 2013

    100 million homes? According to the US Census Bureau…

    Oh, screw it. It’s too easy to dispel anything the guy says. But that’s me. I’m not suffering from a condition that might make me find an answer, any answer, and hope with all my heart that it works.

    It is my sincere opinion that there is a special kind of hell/afterlife for people who prey on the innocent, the weak, and the hopeless.

  60. #61 ANdrei Laszlo
    USA
    June 3, 2013

    I am going to try to see the free version..for me it is not tax deductible…Having only seen I, and read some anti-testimonials on line, I think that this man is DANGEROUS.. the sodium intake with some of his compounds are borderline lethal. One major point that the public does not understand is that it is because of the still open NCI clinical trials that he can offer these compounds. And “targeted” therapy is a nice buzzword, but the is really offerening these type of agents. Thanks for making this clear and also that often he pretreats with a conventional agnet, and then his own stuff. Given the times we are living in the best we can do is “caveat emptor”

  61. #62 lilady
    June 3, 2013

    @ MSII: Quite often a seizure is the first indication that someone has a brain tumor http://www.nbcnews.com/id/24730317/ns/health-cancer/t/kennedys-tumor-was-aggressive-deadly/#.Ua0qwpxAHrc or a congenital brain blood vessel, (AVM), malformation:

    http://www.mayoclinic.com/health/brain-avm/DS01126

    So, it is plausible that Merola’s cousin did die from a seizure, even though the tumor surgery debulked/removed the gliomablastom.

    (The other nonsense about shrinkage of her tumor after undergoing antineoplaston treatment…is just that…nonsense).

    BTW, anytime a person suffers a traumatic brain injury, or has surgery to remove a blood clot or remove a benign brain tumor, they are prescribed anticonvulsant medication(s), which may, or might not, be gradually titrated down/withdrawn.

  62. #63 Narad
    June 3, 2013

    100 million homes? According to the US Census Bureau…

    Oh, screw it.

    The Nielsen 2014 HH universe is 115.6 million.

  63. #64 LW
    June 3, 2013

    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.

    So … the FDA would retaliate against any Japanese pharmaceutical company that produced a drug competing with drugs produced by US Big Pharma? Is that what that means? Are there then *no* drugs produced by Japanese pharmaceutical companies that compete with drugs produced by US pharmaceutical companies? Does this apply to pharmaceutical companies worldwide, or is there special animus against Japanese pharmaceutical companies?

    This claim is too stupid for words.

  64. #65 Marc Stephens Is Insane
    June 3, 2013

    He didn’t specify that those 100 million homes were in the US, so he most likely meant worldwide. Here’s how he probably arrived at that number: since the movie is on YouTube, he’s taking the total number of homes that have Internet access and claiming that figure.

    After all, he said the movie was “in” 100 million homes, not that it’s been watched. So if you have Internet access, technically the movie is “in” your home.

    His approach to honesty with statistics is the same as Burzynski’s. Neither can provide any basis for their claims.

  65. #66 Denice Walter
    June 3, 2013

    Does anyone have a reliable method of estimating how many people saw the original fiasc… film? Or the new one?

    Indeed, how widely seen are ANY of these epics – anti-vax’s “The Greater Good” or cancer cure tales like “The Beautiful Truth”?

    Woo-centric films may appear to be a trend but I sincerely wonder if anyone is turning a profit on them.

  66. #67 herr doktor bimler
    June 3, 2013

    Many paid “Astroturfing” bloggers

    It took 42 minutes between Xeni Jardin posting on the BBC documentary and the appearance in the comment thread of the first spammed advertisement [since moderated] for Merola’s fillum.

  67. #68 Pareidolius
    June 4, 2013

    MSII,
    Just as we learn to recognize AoA trolls, the Scientologists often dispatch cheery, upbeat OSA Ronbots to combat entheta online. They all sound vaguely the same and usually dispense bland platitudes and avoid being snarky (which fails since they are utterly humor-impaired), but something really creepy and dark happened over the weekend regarding The Hollywood Reporter’s coverage of the total meltdown of closet Scientologist Will Smith’s After Earth at the box office. Instead of defending the movie or inviting people to “read Dianetics” for themselves, they started race-baiting flame wars. Volleys of ugly comments against blacks and liberals flooded the thread. This is a totally new tactic for OSA, pretenting to be far-right, racist teabaggers and derailing the comments that way. It got so bad the THR had to scrub all the comments, only to have the horde return the next day to try again. I’m a creative director in an agency, I review copy to make sure that pieces we create maintain their “voice.” I will swear that most of those comments came from the same writer, or at least the same talking points. So much for moderation over at THR, they could use a little Orac of their own.

  68. #69 Pareidolius
    June 4, 2013

    Woo-Cinema shows up on Netflix pretty much right out of the can since it dies in the the theaters pretty quickly. Who knows what the figures are for viewing? I’ve seen several of the ghastly things, so viewership certainly is no indicator of concordance. I imagine that they must track downloads at the Netflix bunker in it’s undisclosed location, deep below the Nevada (or Utah) desert.

  69. #70 Marc Stephens Is Insane
    June 4, 2013

    Pareidolius,

    Yes, I’ve been following the fun at THR since Tony Ortega tipped us off about Marc Headley’s review. I have seen OSA attempt to derail other comment threads in a similar manner, but this really sinks to a new level. And you are probably correct that most of the comments come from one of a handful of writers (Louanne, Marcotai, etc.) who are ordered by their Sea Org superiors to post comments without being allowed to read the original posts (might be entheta)
    or understanding what they’re posting.

    The racist (anti African American) comments are especially ironic considering Miscavige has been in bed with Nation of Islam for some time now.

    Merola’s distraction tactics (“Look over here! Don’t look there! Ignore those lies!”) reminded me of the usual, more mild-mannered comment strategy to which you alluded. And Burzynski has a lot in common with David Miscavige.

  70. #71 elburto
    June 4, 2013

    @Andrei Laszlo – You may be interested in this link:

    http://theotherburzynskipatientgroup.wordpress.com/

    Bob Blaskiewicz is tirelessly piecing together the stories of the real Burzynski patients, as opposed to the cherry-picked testimonials available on the Burzynski Patient Group marketing machine site.

    You can see just how badly most people are affected, but if you read only one story on there then read the one second from the top, that of little Luna Petagine. She was the toddler featured on tonight’s Panorama, and an earlier documentary about Great Ormond Street Hospital.

    Reading her story, and watching the video clips therein, will give you a glimpse into the sheer hell of the level of hypernatraemia inflicted on Burzynski’s victims.

  71. #72 Militant Agnostic
    Where dead men tale no tales and launch no lawsuits.
    June 4, 2013

    MSII @58

    It is possible Merola is telling the truth about his cousin’s seizure, but that doesn’t mitigate the fact there’s no reference to her death on this web page over two years later. In fact it looks like they’re still trying to raise money for her treatment:

    I suspect the Setting Them Free website has been abandoned. The copyright is 2010 and there is no link to it from the hosting Concrete Made New website. I suspect all the patients whose success stories are on there are now dead.

  72. #73 Interrobang
    June 4, 2013

    Watch the *whole* Great Ormond St. documentary if you can. It’ll take you about 4.5 hours, as I recall, but well worth it. The episodes are up on YouTube.

    I really felt sorry for Luna P’s oncologist at GOSH. He seemed like a very ethical, very humane person trying to do his utmost in a set of horrible and heartbreaking circumstances. I really can’t say enough good things about the focus on medical ethics in the series. If I were teaching a course with an ethics unit, I’d have my students watch it.

  73. #74 Guy Chapman
    June 5, 2013

    STF is still current, I think – see the date of this event: http://settingthemfree.org/arizonas-rockin-with-talent/

  74. #75 Roadstergal
    June 5, 2013

    “women without kids who are described as childless”

    I prefer to think of myself as motorcycle-ful.

    An interesting read for sure – now I’m off to the Panorama review…

  75. #80 Narad
    August 31, 2013

    I find this title to be particularly amusing given that in his last salvo, Squiddles forgot to double-check when temozolomide actually received accelerated approval. (Hint, DJT: It wasn’t actually January.)

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