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'My Cancer Free Life'? Not So Fast

— Reality docuseries as a commercial for quack doc

MedpageToday

When I first encountered Stanislaw Burzynski and the Burzynski Clinic around a decade ago, I didn't know what to make of him. Sure, he seemed quacky, with all the testimonials of miracle cures and the claims that he cured deadly brain cancers, like diffuse intrinsic pontine glioma (DIPG), that conventional oncology could do no more than palliate. Sure, it was rather odd that he had never done a fellowship in oncology or an oncology-related specialty.

However, he was a Polish expat who seemingly was an excellent student. And he did have a brief career as a real cancer researcher at Baylor in the early 1970s. During that time he discovered the treatment for cancer (or so he thought) that led him to abandon Baylor around 1977 and set up a manufacturing facility to produce the treatment, which he had dubbed antineoplastons, and to administer them to patients, even though antineoplastons were not FDA-approved and for which, at best, Burzynski only had some relatively weak in-vitro evidence of anticancer activity, a story I wrote about in detail for 4 years ago.

Let's just put it this way: more than 40 years later, Burzynski has still failed to produce anything resembling convincing evidence that his antineoplastons are effective against cancer. But that hasn't stopped him from continuing to charge massive "management fees" that can run into the hundreds of thousands of dollars to administer antineoplastons to desperate cancer patients. Neither have multiple investigations by the FDA and the Texas Medical Board (TMB) driven him out of business.

Indeed, the most recent attempt by the Texas Medical Board to shut him down ended a year and a half ago in failure. Despite his having to pay a $360,000 fine and agree to submit to monitoring of his billing practices, to complete a medical ethics course (hilarious!), inform his patients that he owns the pharmacy he requires them to use, and submit his informed consent forms to the TMB for review, he's still out there attracting desperate cancer patients to his clinic. He even has a local TV station, KHOU-TV, running on its morning show what is basically for a new "reality" series called My Cancer Free Life, which is being produced by Uchenna Agu and features at least two Burzynski Clinic patients, Bo Edwards and Douglas Kruse, as testimonials for Burzynski's "miracle cures."

, which aired last week:

I had so many questions as I watch this eight-minute segment on Great Day Houston. Let's dig in, but, before I discuss the segment above in depth, let's first go through a little background regarding Burzynski and the media.

KHOU-TV has a history of promoting Burzynski

The first thing I wanted to know was why a local Houston TV station was promoting Stanislaw Burzynski. I had forgotten about it, but KHOU-TV has a long history of doing puff pieces on the Burzynski Clinic, so much so that Houston Press reporter Craig Malisow has even called them "B-jobs." For instance, here's a story from 2009 entitled "." Its tagline? "Every day, cancer patients from all over the U.S. come to Houston for treatment. But some drive right past MD Anderson and head for Dr. Stanislaw Burzynski's clinic." It's a story full of false balance, with Burzynski touting how he's going to show that his antineoplastons work interspersed with a doctor from the MD Anderson Cancer Center saying that there is no evidence that it works. It, too, raised the ire of Malisow, and rightly so. Remember, too, that this was more than 30 years after Burzynski broke away from Baylor and started selling his treatments himself. In 2014, KHOU ran a story about how grateful Stanislaw Burzynski was for having gotten to meet Pope John Paul II in the 1980s and in 1996. Here's an excerpt:

Burzynski was recommended to the Vatican at a time when the Pope was rumored to be sick with colon cancer. The doctor was known for unconventional treatments, which did not involve surgery or chemotherapy.

'The government wasn't too nice for my husband's discovery,' said Dr. Barbara Burzynski, Burzynski's wife.

His treatments called Personalized Cancer Therapy are different from every other doctor. He said they target certain cancer cells to stop them from growing. Government officials and the medical community claimed his methods didn't work or at least, there wasn't any proof they did.

'I was being accused of a variety of things which I did not commit,' he said.

Thankfully the pope did not have cancer. But for his willingness to help, Burzynski was blessed with a medal from John Paul's successor, Pope Benedict XVI, which he feels is a strong endorsement of his techniques.

Yes, . Also, let's just say that the Catholic Church or any other religion should not be trusted as a reliable guide to good medicine.

Also in 2014, KHOU-TV ran this nine-minute segment, "," which was actually sponsored by the Burzynski Clinic:

This is pure propaganda, basically a brief infomercial for the Burzynski Clinic, complete with the host blathering about how other cancer centers are now adopting the methods of the Burzynski Clinic. (More on that later, but for now, I'll simply call that claim what it is: Nonsense. For example, Burzynski has basically claimed to have invented precision medicine. He did not.) There wasn't a single bit of misinformation or a single trope in this video segment that I hadn't heard before. In particular, he claims that he has a 50% 5-year survival for brainstem cancers, a claim for which Burzynski has never been able to produce anything resembling convincing evidence. The is .

So we know right away that someone high up at KHOU-TV is a believer in Burzynski's quackery. Since 2016, Great Day Houston's producer has been Ralph Garcia, and its executive producer , which implies it's someone higher up in the station who's interested in seeing pro-Burzynski propaganda aired. One wonders if it's Susan McEldoon, who's been the general manager there since 2007 and will be . I couldn't find any evidence, though. Whatever the situation, it's clear that KHOU-TV has a thing for Burzynski. Who knows why or who it is who's responsible?

Who is Uchenna Agu?

I'm guessing that some of my readers recognize the name Uchenna Agu, but I must admit that I had no clue who he was when I first encountered this story. Yes, I was reduced to doing what I always do when I don't recognize a name: I Googled him. It turns out that Agu's fame comes from his appearance with his wife Joyce as contestants for in 2005 (which they apparently won) and later in in 2007. Since I don't think I've watched even a single episode of that show, I had no idea. In any event, he's also appeared in (2014) and (2018). (I know. That didn't help me either.) Apparently, he's now a producer and a managing partner at the consulting agency UEA Group.

As for the production companies involved, I noted a couple of interesting things. The blurbs under the story and on the YouTube page suggests Big or Small Media Entertainment, LLC for more information. Clicking on that link goes to an unclaimed domain and a GoDaddy page. They also mention video from , which, it turns out, is owned by someone named . I can't help but wonder if he's related to producer Ralph Garcia in some way.

My Cancer Free Life? It begins.

So let's get to My Cancer Free Life.

Given that there's minimal, if any, video footage shown promoting My Cancer Free Life, and I can't find any with my prodigious Googling skills, I couldn't help but wonder how early in production this "reality docuseries" is. Usually, in cases of a producer, director, or actor doing promotional interviews about his project, he'll be able to show at least a little footage. True, there is a brief clip at the beginning of the segment of Stanislaw Burzynski himself going on about how when he started it was the "dark ages of cancer treatment". Whether that was provided by Agu or was stock footage from past KHOU-TV infomercials on Burzynski, I don't know. It wasn't revealed. Ditto on some footage later in the segment of the Burzynski Clinic. I was impressed at how pedestrian it all looked. In any case, Great Day Houston host Deborah Duncan is next up to introduce the segment, which includes Uchenna Agu and the two Burzynski Clinic patients, Doug Kruse and Bo Edwards.

One thing that became apparent right away is that, unlike a lot of Burzynski Clinic patients, Kruse and Edwards maintain a low social media and Internet profile. Searches for their names plus "cancer" and/or "Stanislaw Burzynski" failed to turn up much other than this segment. Ironically, it turns out that Kruse once did comment on a blog that might be familiar to many of you on a post entitled . The date of the comment is August 6, 2018:

Dear Doctor. I say again....Hello! I came to Burzynski clinic March 2017 with stage 4 prostate cancer and kidney carcinoma. I responded well to treatment and returned to work at the office in December. This week my CT PET scan results are good and we are concluding treatment. I find several of the comments above blatantly false based on my experiences in being treated meeting with Dr. Burzynski about once a week for over a year. And, I have met in our IV room several who have recovered when standard of care was to go home and die, too. That includes one gentleman from Canada that go over pancreatic cancer as I observed week to week as a co-patient. I have spent the monthly cost for investment and am happy with the results noted. Request: Would you please increase the respectful part of your dialogue? Including complying with your own guidelines for comments and eliminating some of the abusive vocabulary, please. Respectfully, Douglas Kruse Jr. Houston, TX.


Clearly, there's not much in this comment to help me understand his testimonial other than that Mr. Kruse has stage IV prostate cancer and kidney cancer. It's not clear if he has both prostate and kidney cancer (which would be very unusual) or prostate cancer that's metastasized to the kidney (less uncommon). I'll discuss him more later on based on what he says on this KHOU-TV segment. As for Bo Edwards, I could find basically nothing about him other than links to the KHOU-TV segment. Searches on Facebook and Twitter didn't yield anything either. It's almost as though these patients were chosen for how little information about them is publicly available on Facebook, Twitter, YouTube, and various websites, even pro-Burzynski websites.

My Cancer Free Life? The propaganda is thick.

After we see Burzynski's smiling face going on about how the sequencing of the human genome was the milestone that revolutionized cancer treatment, Great Day Houston host Deborah Duncan reads an introduction that will make anyone familiar with Stanislaw Burzynski's four-decade scam cringe, so much so that I wondered if Burzynski himself had written it. She basically recounts that Burzynski discovered a gene-targeted cancer therapy back in the 1970s. This is, of course, ridiculous. Contrary to the hagiography of Eric Merola's two propaganda movies about Burzynski, and , in which it is claimed that Burzynski is a pioneer of "gene-targeted cancer therapy," Burzynski's two go-to treatments include the unproven and likely ineffective (antineoplastons) and the "make it up as you go along" (his "").

Particularly risible have been Burzynski's arrogant, ego-fueled claims (mindlessly repeated on this segment) that he first described "gene-targeted therapy" and that he, with major cancer centers like MD Anderson only . (I first saw this claim in Suzanne Somer's quackfest of a book, Knockout: Interviews With Doctors Who Are Curing Cancer And How To Prevent Getting It in the First Place.) It's a message parroted both by Duncan and Agu in this segment, and it's simply not true. Burzynski is not a "pioneer" in personalized gene-targeted cancer therapy and never has been. He is most definitely not a pioneer in immunotherapy either, contrary to Agu's assertion. That the segment starts out with a message painting Burzynski as a scientist ahead of his time tells me that what I'm seeing is propaganda far more than journalism and that Agu's docuseries will apparently preach this message tells me that Agu is more akin to Eric Merola than to a serious producer, at least when it comes to Burzynski. Let's just put it this way. If Burzynski had never been born, major cancer centers would be embracing precision medicine and immunotherapy now in exactly the same way, mainly because Burzynski has had zero positive effect on oncology.

When the camera pans out to show all the guests for the first time, my first reaction upon seeing Bo Edwards was that he looks very, very sick. Inexplicably, his whole right arm is bandaged and he has a catheter in place that is hooked up to a black bag that he's carrying. It makes me wonder if he's getting a continuous infusion of antineoplastons. In any event, he looks gaunt, and there's something funny about how his loose shirt sits on his bandaged right arm. Certainly, he does not look the way that Agu describes him (and Kruse), "cured of cancer."

In any event, we learn from Bo Edwards that the reason he went to the Burzynski Clinic after being diagnosed with stage IV cancer (type not yet specified) was because a friend of his wife with stage IV cancer (type not specified) had gone there 18 years ago and was cured. In any event, he was told that he could have chemotherapy (which probably wouldn't work); he could have radiation (which would likely only prolong his life marginally); or he could have radical surgery that would involve removing his arm, shoulder, and part of his upper chest. When I heard this, all I could think of was forequarter amputation, the same operation recommended to Jessica Ainscough, whose promotion of "holistic health" and alternative medicine led her to be known in Australia as the Wellness Warrior. She ultimately after a very prolonged course, but what had frightened her from conventional treatment was the prospect of a forequarter amputation, a brutal operation that is rarely performed these days. Seeing Edwards' bandaged arm and hearing the recommendation that he have what sure sounded like a forequarter amputation, made me wonder if he has what Ainscough had, epithelioid sarcoma. In any event, the fact that he was offered such radical surgery suggested to me that he has some sort of sarcoma involving his upper arm and that he doesn't have metastases to distant organs. If he did, there's no way such radical surgery would even be considered.

So when was Bo Edwards diagnosed? It turns out that it wasn't that long ago. He was given the three options, according to his story, in January 2018, only 9 months ago. That's an awfully short time to be declared cured of any cancer. We're also shown zero evidence that Edwards is, in fact, cancer-free, as he claims. If he were cancer-free, I wonder, why is his arm bandaged and why is he still hooked up to an infusion device? As Edwards finished telling his story, I couldn't help but feel a wave of sorrow and empathy for him. He really believes he's been cured, and I hope he is, but everything about his story suggests otherwise and that he's just been fortunate thus far. I also couldn't help but notice that the Great Day Houston bug always seemed to be sitting over Edwards' other arm, where the infusion catheter was inserted under a bandage.

Mr. Kruse recounted his story next, and it was much as what you read in his comment cited above. He was diagnosed in March 2017. According to him, his wife took him to the emergency room then because his "system shut down," and he had high blood pressure. From the sound of it, he had prostate cancer metastatic to kidney and bone. He added that he was told that he should just go home and grieve with his family. Now, I suppose that's entirely possible, but it sounds a bit hard to believe. For one thing, prostate cancer, even metastatic prostate cancer, tends to be a slow-growing disease; it's not that surprising that someone with stage IV prostate cancer could be alive a year and a half after diagnosis. For another thing, treatments for prostate cancer have improved markedly since I was in medical school and residency. At a decent cancer hospital (and, let's not forget that M. Anderson is located in Houston), a patient with stage IV prostate cancer will be told that his disease is indeed incurable, but won't just be punted home as Edwards described. He'll be told that we have treatments that can slow down the progression of the disease and that he could have years left.

In fairness, I don't know the full extent of Kruse's disease. He didn't say, either in the blog comment above or on this segment on KHOU-TV. However, whenever I hear a story like his I wonder whether there was a misunderstanding of his prognosis or whether he went to a crappy hospital that doesn't do a lot of oncology. Again, I have no way of knowing from what I see here. In any event, Kruse's wife and daughter persuaded him to go to the Burzynski Clinic.

What does Burzynski do differently?

The final part of the segment began with Duncan asking Agu, "What does Dr. Burzynski do differently?" The answer told me just how deep the propaganda will be in this docuseries. I also wasn't too thrilled to see Agu invoke "right-to-try." After all, right-to-try is a scam , and Burzynski has been using it to . Agu then says that there is a DNA test that each patient must take before getting into the Burzynski Clinic, and "if you fall within that window, you're golden." At this point, I was shaking my head and wondering just what the heck Agu was talking about. He seemed to be implying that there was a small "window of opportunity" during which a patient can benefit from Burzynski's treatments. Given that Burzynski appears to specialize in extracting cash from patients who have advanced cancer, this statement makes little sense.

Duncan also pitched another slow, hanging ball right over the plate by asking, "Why isn't every treatment facility doing it this way?" If I were on the show, I'd have answered that the reason is simple. Burzynski has never shown anything resembling compelling evidence that his approach works better than what we do now -- or even that it works at all. Agu, of course, regurgitated an answer right out of the quackery defense league's manual about how cancer doctors have developed a "standard way" of treating cancer over the years such that "everyone is 'this is the way we do it' and it doesn't open the door to alternative treatment." In other words, it's the same old' same old'. Doctors are too close-minded. Doctors can't tolerate the competition. Doctors won't try anything different. He then went on to say that doctors should be referring to Burzynski "on the front end" after a DNA test to see if the patient "fits" (whatever that means).

Apparently, the docuseries won't just be about Burzynski, either, although clearly, it looks as though Burzynski will be a major focus. Agu says he'll also look at patients who have chosen conventional therapy and other alternative therapies. Anyone want to guess how well the ones who choose conventional therapy will do? I'm sure the selection will not be random. After all, Edwards and Kruse were given the opportunity to have almost the last word, which they took to go on about how Burzynski's given them hope. Unfortunately, I know otherwise. I know Burzynski. I've examined more testimonials by patients of his than I can remember, many of them analyzed right here on this blog. My friend Bob Blaskiewicz, who runs , has done likewise. Basically, Burzynski's patients all pay tens or hundreds of thousands of dollars to be treated, often under designed solely to let Burzynski avoid FDA actions. There is no good evidence that they do better than they would have done without Burzynski.

Conclusion: More Brave Maverick Doctor hagiography

I can't help but note how vague Edwards' and Kruse's testimonials were. There's so little information provided that I have a hard time figuring out what is going on with them (particularly Edwards with his right arm). I do know, however, that their stories fall into the classic format of alternative cancer cure testimonials, complete with their being told to "go home and die" (as many quacks like to characterize what doctors tell patients with incurable cancer), and then finding the Brave Maverick Doctor Burzynski. It sounds very much as though Agu's project will end up being much more hagiography than even reality TV or video. Of course, anyone who pays much attention to reality TV should know by now that reality shows are anything but reality and that most are pretty heavily scripted. At the very least, the contestants or characters are very carefully chosen by the producers to fit the demands of the show, whatever they are, humor, conflict, entertainment, or a specific message.

I wish Edward Kruse and Bo Edwards nothing but the best and truly hope that they are the exceptions, rather than the rule, when it comes to Burzynski patients. I also hope that Burzynski doesn't bankrupt them both before their cancers recur or advance. As for Uchenna Agu, I would urge him to read all the stories on The Other Burzynski Patient Group and to read up about Burzynski's abuses of clinical trial ethics and selling of cancer quackery for 40 years right here. Maybe he's not beyond hope, even if KHOU-TV in Houston appears to be beyond hope when it comes to shilling for Burzynski. The producers of Great Day Houston and the management of the station should know better, given that they're in the same city as he is. Unfortunately, in Texas, .

David Gorski, MD, PhD, FACS, is a professor of surgery at the Wayne State University School of Medicine. He also serves as managing editor of and runs his own pseudonymous blog at , both of which are dedicated to examining implausible medical claims.

This post originally appeared on .