In Oct 1994, Cody’s parents, Dawna and David, noticed that Cody was developing a lazy eye and was losing control of his left side. An MRI discovered a tumor on his brain stem. (At this point, honestly, I feel like these stories are following a script.) He had 3 weeks of chemotherapy and radiation treatment. Around Thanksgiving, a friend told them about Burzynski’s Clinic.
Cody’s story came to light on 1 Dec 1994, after residents raised $15,000 for the Burzynski Clinic. They were clearly warned about his reputation, which is, according to the article, that of a “clown” and “kook.”
A perplexing statement in that article comes from a local philanthropist who started raising money for the trip:
When local philanthropist Kostas Kalogeropoulos, founder of Dream Come True charity, heard about the possible cure for Cody, he held a press conference on Thanksgiving Day and made an impassioned plea for money to help pay for the expensive therapy.
“Even if this doctor is a kook, at least he’s giving the family hope,” Kalogeropoulos said Tuesday night when told about the controversy surrounding the Burzynski Clinic.
This is bad thinking. False hope is “doing harm,” in my opinion.
I give the paper credit for actually seeking out comment about this story:
It’s false hope, said Saul Green, a biochemist and retired cancer researcher in New York. Green wrote a lengthy article in the Journal of the American Medical Association in June 1992, blasting Dr. Burzynski’s cancer treatments.
“I found no reason to believe his therapy works or even why it would work,” Green said yesterday. “If this family is religious, I would recommend they go to church. They’ll find more hope there.”
The trials manager at the Burzynski Clinic, possibly the worst trials manager in the world, given his lab’s results (no published peer reviewed papers demonstrating efficacy in a journal worth sneezing at), gives a typically flaccid defense, invoking the appeal to novelty and a conspiracy theory:
Burzynski was not available for commment yesterday, but Dean Mouscher, the clinical trials director at the clinic, said Green’s article is “full of lies and distortions.” He said the therapy has saved several children.
“This is a case of the old against the new. The medical establishment is against this dramatically new treatment,” Mouscher said. “The drug isn’t going to hurt Cody, and it may help. It has helped others.”
Of course the clinic is, at the same time, administering ANP as a treatment for HIV.
The expenses that will accrue for the family are really remarkable, especially given how much ANP costs to manufacture:
The therapy can cost as much as $685 a day. The Michaels family said it’s running them about $10,000 a month and their insurance only recently started to pay for some of it. But the medicine isn’t the only cost. Patients must purchase their own catheter, IV equipment and pumps and pay for all blood and urine tests, X-rays, CT scans, housing, transportation and meals.
Green criticized the cost in his article, saying the chemicals that make up the drug canbe purchased “from any chemical supply house for about 9 cents a gram.” (emphasis added)
Three days later, the paper announces that Cody will be getting the treatment after all. The horrible bind that the parents have been put in is clear, further illustrating why only the highest ethical standards are acceptable when experimenting on cancer patients:
“We have no choice. We either take him there or sit back and watch him go and we don’t want to do that,” said David [G].
About two weeks later, we hear that Cody and his mother go down to Houston to learn how to administer the treatment, while David stays with Cody’s sister. By this time, the community back home has raised some $30,000 for Burzynski’s treatment.
On the February 1st, we hear that SAME DAMNED STORY AGAIN! That the tumor is “breaking up on the inside,” which the family apparently believes is a good thing:
Cody [G]’s brain tumor appears to be deteriorating.
The 4-year-old Pennsville boy has been receiving an experimental cancer treatment in Houston. After two visits to the Burzynski Clinic, and around-the-clock treatment for almost six weeks, his parents say a recent MRI shows the tumor has not grown and its core appears to be breaking up.
“We want to thank everyone in the Lehigh Valley for giving Cody the chance he needs to fight this,” said Cody’s mother, Dawna.
The Gerharts held a news conference yesterday at the Sheraton Inn Jetport. Cody, dressed in purple Batman sweat pants, wobbled out to the crowd and gestured for his father, David, to hold him. Cody has limited movement on his left side because the treatment sometimes causes the tumor to swell, putting pressure on his brain stem, his parents said.
The boy is partially paralyzed and unsteady on his feet, and yet the parents who want to believe still see him as improving. It is positively unbelievable that an ethical humane physician would let the family leave their clinic not understanding the implication. To do so is unfathomably cruel, since the pattern of a tumor dying on the inside is more likely to be a sign that the tumor has outgrown its blood supply than it is of a treatment working. It turns out that an MRI in March confirmed that the tumor was in fact growing.
Cody celebrated his 5th birthday that March, but on April 20th, news breaks that Cody had breathing problems and was rushed to the hospital.
“When we got him to the hospital we tried to stabilize his breathing,” said Donald [G], Cody’s grandfather. “The theory is that the tumor is affecting his condition right now.”
This is not progress, and the parents are baffled, as you might expect, as they believed that things were improving:
“In the beginning, he responded really well to his treatment,” Gerhart said.
That seems unlikely.
On May 19th, Cody’s story was on Nightline, but at this point, Cody is dying in hospice and off the ANP, which was clearly useless, costly burden:
Cody received several treatments at the clinic. “Nightline” interviewed Cody and his family at their home several weeks ago about their experience with the clinic.
Cody recently discontinued treatments after doctors at the clinic told the [G family] the treatment would not help Cody. Cody’s condition is deteriorating. He’s at home, under Hospice care, said his grandfather, Donald [G].
A further complication to this story is something that the grandfather reports:
Nevertheless, the family believes in the treatment’s ability to cure cancer.
“They said Cody’s tumor wasn’t cancer and that’s why they couldn’t cure it,” [Donald] said.
The implications of this are nothing but damning for the Burzynski Clinic. What was all that talk earlier about the tumor “clearing up” and “breaking down on the inside” because of the miraculous ANP if the cancer wasn’t cancer? Or, as all evidence suggests in this case, does ANP simply not work on cancer? I would suggest that the family and media who covered this family, missed some important red flags about what was really going on here.
This must end. This was almost 20 years ago. Just a few weeks ago, a family whose beautiful daughter has a similar tumor was told by the same Clinic that the same pattern of necrosis in her tumor was a good sign. This relentless cycle must end. These patients need to be protected.
On June 25, 2011, Christy M. had a dull headache and was acting extremely tired. Her husband knew something was wrong and took her to the emergency room. She had a CAT scan and was whisked off to Portland to be treated for a 3 X 4 cm tumor sitting near the speech center of her brain. She was awake throughout the entire procedure to remove the tumor. Two weeks later, the diagnosis was in. It was a stage IV glioblastoma. It was not curable, and it had not all been removed.
According to a write-up of her story in her local paper:
Because it is in the brain, chemotherapy and radiation could result in brain damage and only offer her a couple of years at best. With those two treatments combined, she was told there would be a 5 percent success rate of living for five years or longer.
Without any treatment, her time would be only a matter of months.
This last point will be important later.
She was 36 and had two daughters and was working in a hospice as she put herself through nursing school. She was 9 months away from graduation. Two months after surgery, the tumor was growing again. She turned to the Burzynski Clinic.
According to the same article:
So she found Stanislaw Burzynski, a Polish doctor based in Houston, Texas, who is gaining notoriety for his nontoxic alternative cancer treatments. The treatments have a 40 percent success rate – not to cure it, but to allow her at least five years of life.
“That’s a whole lot better than 5 percent,” Jack Miethe said. By the time the Miethes reached Texas – “I made an appointment right away,” she recalls – the tumor had doubled in size.
Burzynski is completely unable to back that number with a single convincing study. Not one, and it’s damnable that this family believes this. She is likely on Burzynski’s inaccurately named “gene-targeted therapy”.” She receives some meds intravenously, which suggests ANP to me. And the rash could be from the steroids that Burzynski gives to patients, often in otherworldly doses. Working back from the date of the article, it seems that Christy started antineoplaston treatment around early September. She would have gone through the same training that all the other patients go through. In between the surgery and the visit to Houston, however, the tumor had doubled in size.
Seven weeks into treatment, the family reports:
The pills alone cost $20,000 per month. Combined with the airfare, office visits and other expenses required for Miethe’s trips to Texas for consultation appointments, the financial burden is weighing heavily.
“This new treatment plan, you have to pay everything up front. So, with us and my mom, we’re up to at least $65,000 out of pocket right now, and we’re hoping that the insurance will help,” she said.
Christy gets her scans every 6 weeks. And guess what first one on treatment has shown:
“They started me on treatments and I’ve been on their treatments for about seven weeks,” Miethe said. “The cancer isn’t a shock anymore. But for the first two months, it was. I think I was in shock because I was going to different doctors for different things and I felt like a number.”
Already, the MRIs have shown her cancer is liquefying. It’s not gone, but it is improving.
“That makes me very hopeful,” family friend Shanon Sporseen said, the team captain of the “Fight for Christy” fundraising event next week.
And there it is. Another Burzynski patient reporting that the cancer is “liquefying.” What this usually means is that a cyst or cysts have opened up inside the tumor, which has outgrown its blood supply. If that’s what happened here, it’s simply another one in an amazingly high percentage of patients who appear on this website:
- We first noticed this pattern in the story of Amelia S.
- The family of Haley S heard this (also, see the clinic’s heartless reaction to a stroke that the child had).
- Burzynski gave the same diagnosis to Justin B’s family in 2006.
- We see a similar cyst in Leslie S.’s story (2006), and it nabbed Burzynski an extra $7,500 before she died.
- We see it AGAIN–as far back as 1994!–in Cody G.’s story.
- In the most grotesque horror show I have ever written about, Burzynski himself tells the family of Chase S. the same thing.
- We saw it again in the case of Samantha T.
Again, another patient believes that getting worse is getting better. Unbelievable. Simply unbelievable. And it’s especially infuriating when we hear Christy’s husband saying:
“I guess other people have dealt with it and you have to learn to deal with it, and you obviously don’t want it to happen, but that’s why we went to Texas and why we didn’t do chemo and radiation. So hopefully they are as good as they say they are. But again, 40 percent over 5 percent, it’s still a lot better hope.”
No. It’s false hope. I am so sorry. As one of the editors here said, this is exactly why we fight.
The next week, one of Christy’s best friends held a massive fundraiser for Burzynski. It netted $100,000.
Sadly, a month later, on New Year’s Eve, a mere six months after diagnosis, and after about 3 months on Burzynski’s chemo cocktail, Christy died. For all the money they expended, her life was not extended noticeably by Burzynski’s treatment.
For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.
In the Fall of 1994, Tracy started having pain and had a focal seizure that made the left side of his body tingle. After a few weeks of delaying going to the doctor for these symptoms, a day after Tracy H.’s 32nd birthday, an MRI revealed a tumor in his head the size of a baseball. A pound of tissue was scooped out of his head, only an 80% resection (another source says 90%), and leaving him paralyzed on his left side. He was diagnosed with a mixed-grade (grades 3 and 4) astrocytoma multigliobioma that was currently stable.
Tracy struggled to regain control of his body and was ambulatory by Christmas with the use of a cane, an amazing recovery of ability. (He seems to have been a fit and active person.) Though he had 30 radiation treatments over the next year, the remaining tumor seemed to not respond at all. He was given 6 months to two years. They heard about the Burzynski Clinic through a friend. They were put in contact with the patient group. They were sent information by the clinic. They decided to try it.
According to Tracy’s original Burzynski Patient Group page:
“Our initial visit was very positive. I thought everyone was very professional. I talked to the doc himself, and I felt that he was a compassionate man, not a real big speaker, kind of a shy guy. He seemed really positive about his treatment and therapy. He was up-front about what would and would not happen,” said Tracy.
Tracy went on the antineoplaston treatment, in July of 1995, hooked up to the infuser most of the day. After his first few days of treatment, he was up and on a bicycle. Tracy could not work reliably (though he kept up part-time at the tool and die company), so his wife went to work and his daughters started to attend public school. His wife founded a cookbook company that went like gangbusters from the very beginning. This raised most of the money that they needed to pay Burzynski’s enormous bill over the next two years, some 300,000 copies of the book sold, a remarkable feat and a daring entrepreneurial gamble which saw them mortgage their house. They still had to fundraise, however.
Not only did Tracy fundraise for Burzynski, but he was also among the group of people who lobbied in Washington on Burzynski’s behalf during the federal inquiries into Burzynski’s clinic and he was at Burzynski’s side during the court battle as well.
In 1998, in an interview with The Blade, we hear something about the ongoing treatment:
“Dr. Burzynski is optimistic that the treatments are working,” Mr [H.] said. “The treatment keeps the tumor in check. But God’s in control and I feel very comfortable with that.”
This coincides with a report that the remaining tumor has shrunk 90%. But “keeping the tumor in check” and hopeful assertions from Burzynski are not clearly positive things, especially given my experience researching these patients. Someone like Amelia S. can by dying in front of everyone’s eyes and Burzynski is still optimistic. Because he primarily sells toxic doses of optimism at a high price. At the time the family was interviewed for the Blade article, they were $60,00 behind on their medical bills.
In early 2001, after six years of antineoplaston treatment (by my calculations over a quarter of a million dollars), Tracy was taken off of the hospice waiting list, however, as we shall see, that is almost certainly not the entire story. On May 4, 2001, he passed out while going to a neighbor’s house. He hit his head and died of a brain hemorrhage. Another article attributed the death to “complications from radiation treatment,” which caused bleeding after he hit his head. This is a possible outcome, though as best I can tell most radiation necrosis appears within 3 years. There are a number of reports of long-term necrosis and problems with forming sturdy blood vessels in the brain after radiation. According to yet another account, however:
With the experimental treatments, Tracy’s tumor shrank and he was back on his feet. He was able to return to work part-time and was even bicycling 30 miles a day! But his condition took a turn in 1999. Suddenly I was shaving him, showering him, even rolling him over in bed. In 2000, he ended up in hospice care.
When Tracy began another type of experimental treatment using blood-thinning medication, he rallied so well that they kicked him out of hospice care! He was doing much better – even driving and walking around with a cane. I remember teasing him, “Babe, you’re going to be chasing me around the house soon!”
Another account suggests that Tracy was getting ill and taken off treatment, as the article about his passing reported:
Mr. [H] became ill last year and stopped the experimental treatments, his mother said.
What illness “his condition” is not indicated–whether it is a state of wellbeing or the cancer or…what exactly? It is rather a long time to have been on a single treatment. So, it is difficult to sort out the timeline here. And it’s possible that a blood thinner could have contributed to the brain bleed too. While he may have been declared cancer free, it is impossible to say for which of the multiple modalities contributed to his recovery. He had, after all, had major resection and radiation alongside antineoplastons, and I see no record of his course of treatment, the ups and downs of treatment. And the end sounds a lot like the end of Domenica P’s story, assurances that there is improvement and shrinkage of the tumor, and then the patient collapses and dies in a fall. The brain cancer, in neither case, is cited as the cause of death. Peculiar how that happens.
Tracy was a generous and loving man. He was an organ donor, at least as much as he could be having been a cancer patient. He donated his eyes, skin and bone. (The fact that he was an organ donor does not indicate in itself that he was cancer free.) And he prepared a phenomenal surprise for his wife, which she received when she remarried. A friend delivered a videotape to her which Tracy had given to them in case she remarried. Tracy blessed the marriage and told his family that he loved them one last time.
If Tracy was on a trial, it remains unpublished to this day. For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.
This is a very, very brief story, but it shows how physicians refusing to participate in the Burzynski Clinic’s treatments may well have saved a patient’s life.
The story of Pam D. begins in May 2011, when she was diagnosed with throat cancer. By the time it had been detected, it had spread from a tonsil to a lymph node. By the time her Caring Bridge journal begins (login required), she has been to Houston and has returned without treatment:
Most of you know that I went to Texas to pursue a better, healthier treatment plan, then back home to find a doctor to support me and work with the doctors in Texas. Unfortunately as hard as I tried I was not able to find a doctor that would work with us, and now I feel I need to get started with something. I start traditional treatment sometimes this month.
She was treated while in Houston, probably with his chemo cocktail, er, “gene-targeted” therapy. This is a mixture of chemotherapies that have not been tested together based on the genetic equivalent of palm reading. Take the case of the Merritts, whose oncologist told them that the cocktail that Wayne had been prescribed might make him bleed out from the liver. So, real chemotherapy posing as transparently incompetent gene therapy. (Every so often you see the right conventional treatment in with the mix, I should add.) With this in mind, Pam wrote on Oct 12th:
Saw the radiology/oncologist yesterday after treatment for an exam. She was feeling around my neck and asked me if I felt the mass anymore. She said it was a marble size and now she can’t find it :) it seems to be GONE!!! I told her and before it was a marble size it was a walnut size! I had to throw that in because it was the medications I was taking from Dr. Bruzynski that made the tumor shrink from walnut to marble size, however I had not seen her when it was larger so I am not sure she was aware of that. Nevertheless it seems to gone GONE so that’s great news.
Her last treatment was on Nov 16, 2011. By April she was found to have no visible signs of cancer (not the same thing as the result of the physical exam above–this was a PET scan). Her taste buds were sending her brain weird signals and her salivary glands were damaged, but she lived.
Doctors refusing to participate in Burzynski’s kooky chemistry experiments is the best thing that ever happened to Pam D., and she may never know it. We thank her doctors for refusing to participate in the dubious treatments.
A few important things to note:
1) Pursuing alternative medicine instead of medicine wastes time that could be spent getting proven treatments. This gives cancer a head start and leaves the patient playing catch-up. In this case, Pam does not begin a real sustained course of treatment (chemotherapy and radiation) until late September/early October, at least 3 months.
2) Doctors standing their ground and seeing to it that the people in their charge get the standard of care saves lives.
We wish Pam D. and her family the best.
For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.
[Update: Adam M. died on Sunday, 7 July 2013.]
This is an especially sad story. His wife tells the story about the first days, waiting outside while Adam was in the operating room. The surgery was successful and the doctor suggested it was “possibly a mid-grade [glioma].” In three days, Adam had sprung back:
That’s when we started researching like crazy. Regardless of what the result was, we were going to go alternative. Adam definitely did not want chemo or radiation, and the more research we did, the more comfortable we felt with that decision.
If the tumor recurred, Adam’s prognosis was probably very bad. They made (generally healthy) lifestyle changes and stopped using cell phones, hoping to ward off a return of the cancer. They also got in contact with the Burzynski Clinic, who are completely incapable of making any promises. Apparently, by the end of January, they were planning to go to Houston.
Their first consultation with the Burzynski Clinic was on the 6th of February of 2012. The parents were not available and missed 2 of their children’s birthdays during that trip. They rented a Chevy HHR, left the kids with the grandparents, who were in from the UK, and drove down to the clinic. And then they were hit with the bad news, and an interesting look at what goes on inside the Burzynski Clinic (emphasis added):
Dr. Szymkowski met with us to discuss Adam’s medical history and confirm the details of his brain cancer. She also briefed us on the two possible approaches that Dr. Burzynski would take in Adam’s case. The first case scenario is his patented antineoplaston therapy. To qualify for that therapy, you have to apply to the FDA for special permission, and show that the cancer is “persistent” after using traditional therapy. Well, we assumed that this approach would not be appropriate, simply because the tumor has been removed and hasn’t had time to become what could be considered “persistent”. We then got to meet the man himself! The meeting lasted less than 10 minutes. He briefly explained that he would most likely be using a “gene targeted” approach to treat Adam’s cancer. […] One of the medications is sodium phenylbutyrate, which is one of Dr. Burzynkski’s signature medications. We were definitely excited about that one, because obviously we can only get that here. After being shuffled around a bit more, we were then sent to the financial coordinator. She showed us the fee chart that we had already received in our information packet. So, no surprises there. But… then she starts lis[t]ing the medications that Dr. Burzynski has prescribed for Adam, which are not included in the treatment costs. Sprycel… $8,314.80. Votrient… $3,098.40. (emphasis added)
The family found that the cost would be in the area of $25,000 a month. And it’s simply not true that the only place to get sodium phenylbutyrate is the Burzynski Clinic. It’s an orphaned drug usually used to treat urea cycle disorders. Just about the only place on earth where they’ll prescribe it for cancer is the Burzynski Clinic.
Clearly these patients were being told that Burzynski would be treating these patients. Legally, this is very interesting since the entire premise of the TMB withdrawing their complaint against Burzynski in October 2012 was that Burzynski was not directing treatment.
Bunk. And this is going on even as his lawyers are arguing in court that he is not responsible for the “decisions” that his doctors make. The family then became aware of the serious side effects of these chemo cocktails that Burzynski was proposing, contrary to the hippy-dippy natural side-effectless hype that his supporters parrot:
At home we started talking. I did some online research into the drugs, and really didn’t like what I was reading. Side effects like “severe or like-threatening liver damage”, and “may cause you to develop a hole in the wall of your stomach or intestine”. My favorite one was, “may cause abnormal passage in the body”. Abnormal passage? So, not only would we have to spend $25,000 a month for the drugs, but Adam might develop a whole host of other problems as a result.
The family had initially decided against any chemo treatment, but (surprise, surprise) when they announce this to the Clinic, the doctors tell them that they have found lesions on the MRI, which makes Adam a potential candidate for one of the 60 ANP trials that never seem to get finished or result in any meaningful publications.
The family is about to back away from the therapy and, and only after that threat to Burzynski’s bottom line does the Clinic bother to inform them that there are more lesions in Adam’s brain:
Dr. Sano was very nice, and said she would certainly respect our wishes. However, since they found lesions in Adam’s brain this morning, it looks like the cancer may have returned and therefore the drugs would really be necessary. I nearly dropped the phone. Lesions? Already??!! It just wasn’t possible. The doctor explained that due to the change in circumstance, she would need to meet with Dr. Burzynski and discuss what he wants to do next, and she asked us to go to the waiting room where she could talk to us face-to-face.
Boy, Texas Medical Board, it sure looks like he is directly managing patient care, doesn’t it? And that doctors working under him defer to his judgment instinctively, doesn’t it? I wonder whose signature is on those records? That would be very interesting to know.
And we were totally honest with [Dr. Sano]. We can’t afford the meds. We just can’t do it. She told us that it was now possible that Dr. Burzynski might want to put Adam in the clinical trial. Now he had a “persistant” tumor, and there was something measurable. If he was given permission by the FDA to receive the antineoplaston treatment, now there was material they could measure and watch it shrink. This is essential to be considered for the trial. […] (emphasis added)
Later that evening, they receive a phone call:
Dr. Burzynski is putting Adam forward for the trial. He is going to receive the antineoplaston therapy. The therapy we have read about from the beginning. The real reason we came here. She doesn’t know anything about the financials, which we’ll have to work out with the counselor tomorrow.
So, the Burzynski Clinic is doing a wallet biopsy, the only procedure that they are any good at. The M. family went ahead with ANP. They are desperately looking for supernatural signs that what they are doing is right, and they find them everywhere.
On the 15th of February, they received news that the FDA would abet another patient’s entry into a trial:
Adam’s approved!!!!! Tomorrow morning Adam has an appointment at a Houston clinic to have his catheter fitted, then Friday he gets hooked up to the antineoplastons. […] Also, we’ve been told that Adam’s sodium intake has to be meticulously watched, and his fluid intake and excretion carefully monitored. I’ve been told, “If you can’t wake him up in the morning, get him straight to the hospital.” Fluid can accumulate in the body or brain and cause complications. (emphasis added)
As always, even the ANP can have dramatic and potentially lethal side effects, no matter what you hear.
Healer in your Heart: Researching the treatment
And, WOW, when you look at the status of all those lesions that Burzynski’s group “found” on the MRI, it looks like their status/existence was not completely certain:
We also had an appointment with the radiologist which was a bit depressing as well. We were misinformed before. The current tumor was NOT there immediately post-surgery. The post-surgery MRI shows a clear cavity. But, 6 weeks later there was definitely a “suspicious” enhancement within the cavity. It’s no bigger than a pea, but it’s probably a recurring tumor. There’s a small chance it might be nothing, only time will tell. I don’t know why, but that news really got me down. (emphasis added)
Are you paying attention, Texas Medical Board? That needs to be clarified.
On Feb 25, the doctors at the Clinic show that they are having a hard time distinguishing between someone retaining water and being dehydrated:
Although Adam had drank 11 liters (yes that’s right) of water, he had excreted 12 liters. His weight had dropped by 2 pounds, so Dr. Barbara explained that he is probably dehydrated. She recommended that we only increase the dosage by 20ml on Saturday just to be on the safe side, but to keep an eye on his fluid intake and weight. So, Adam has been drinking and eating like a champ and polished off a massive dinner last night. He drank even MORE water this morning to make sure his weight was back up. He still came up a bit short on his fluid totals (intake was 12 liters, but output was 13 liters), but weighed in at a much healthier 155lbs. this morning. But, the substitute doctor wasn’t happy. She thinks that Adam is retaining water. What?? He excreted more than he took in. He can’t possibly be retaining water. What the heck is he retaining? His weight gain can be easily explained by the mountain of penne bolognaise I forced him to eat last night. But, she refused. No increase in dosage.
So who’s really in charge of the patients at the Burzynski Clinic?
The other good news is that Adam is at his target dose. Dr. Burzynski himself has been reviewing Adam’s case, and for mixed gliomas the dosage can be lowered and still be effective. Adam is NOT on any steriods and has not suffered any fatigue at all. This is nothing short of miraculous. Many patients have ended up in wheelchairs because of the debilitating fatigue. And everyone has to take Decadron to keep cranial pressure down. Adam hasn’t needed any. Everyone is really pleased with how well Adam is doing so far. And Dr. Burzynski has a prediction… he believes that Adam’s tumor will be gone within 2 months, and after 8 more months of maintainance treatment, it should never recur. I LOVE that prediction. (emphasis added)
Since I started exploring extraordinary claims, I have noticed that people are willing to pay almost anything for 1) hope and 2) flattery.
In March, after Adam and Vanessa have returned home, they received the results of their first MRI after treatment began:
We just received a call from Dr. Barbara. The radiologist still has to do a few more measurements, so he cannot say for sure if the tumor has shrunk. However, there is considerably “less enhancement” in the tumor. This means that there is less activity, and the tumor is showing up less dense on the MRI than before. That explains why it is so difficult to see in the image. All good news!!! Dr. Barbara said, “Geeve Aatum beeg hug frum mee and goa celebrate!”
I’m no doctor, but it just doesn’t sound like the tumor is shrinking. And this seems to be confirmed in the May 12th update, when it is revealed that the tumor has grown 20% in the last 8 weeks. (The progress of the disease, as is often the case w/ Burzynski, seems independent of the ANP dosage.):
The MRI showed that the tumor that had shrunk by 40% 8 weeks ago, has now increased in size by 20%. There is also another lesion that has remained unchanged. […] The tumor seems to be affected by the treatment, but apparently this dosage level just isn’t going to cut it. So, Dr. Barbara has decided to increase Adam up to the maximum dosage. To put it bluntly, this sucks. It sucks on so many levels.
On June 11th, we get a report that looks like someone at the Burzynski Clinic nearly gets Adam killed (they never find out who it was…apparently they don’t put things like “calls to patients” in patient files at the Clinic or something) when they call saying that his blood work is bad, setting off a chain of events that leads to him nearly slipping into a coma.
On the 22nd of June, the MRI shows that Adam’s tumor is “stable,” which is a “success” at Burzynski’s Clinic, but it is a loose interpretation of “success” that no other researchers find acceptable. According to a site review of Burzynski’s clinic: “Moving from protocols to results, I am surprised by Dr. Burzynski’s statement that stable disease is a positive outcome. That runs contrary to established criteria for trial design. In the context of phase II trials, which are short-term studies, stable disease is not reported as a positive outcome.”
By August it seems that the tumor is growing again, and we get the sad news in one of the most raw moments I’ve seen since I’ve started this project:
It’s 5:00 in the morning, and I just can’t sleep. Adam and I have been talking, holding hands in the dark. The bedroom is actually dark for the first time in 6 months. And completely silent. The whooshing of the pump is gone, as is the pump’s bright display that used to cast a glow around the whole room. It’s over. We received a call yesterday that shocked both of us to the core. Adam’s lesions have grown since the last MRI 8 weeks ago, and there is now a third lesion. The treatment didn’t work. It’s worked for so many others. It is the one treatment that gave us any hope of Adam seeing the boys grow up. He probably won’t ever get to meet his grandchildren. He probably won’t see his boys get married or finish school. He may not ever get to hear Finlay say “Daddy”.
What is all the more galling, that after failing to help Adam in any meaningful way, the Clinic suggested that he come back and start a NEW course of treatment:
We don’t know what we are supposed to do next. We have discussed a few options, but they all look so awfully wrong. The Burzynski clinic is encouraging us to come back to Houston so he can start gene-targeted therapy. It just feels wrong. First of all, we need to come up with $30,000 to start the other treatment, not to mention all the expenses of going down there. It makes both of us nauseous just thinking of going back to that place and starting over. The monthly cost of the treatment is over $20,000. And it has a much lower rate of success than the antineoplastons.
They eventually moved on to another therapy. He died in July 2013.
Nolan L. had just had his 9th birthday in November 2002 when he started having crippling headaches. As his mother remembered a year later:
I was concerned about Nolan’s behavior problems at school and was meeting frequently with his teacher, the principal and the vice principal. We had no idea that a monster was lurking inside his head, ready to strike.
I attributed the crankiness, complaints of headaches, and other subtle symptoms he began displaying as emotional distress because of the turmoil within our family. But sometime in October I made an appointment with his pediatrician. And it was at that time that the first fateful MRI was scheduled.
I vividly remember the drive to Sacramento with Nolan’s dad, clutching the films containing that ominous looking huge white spot in the center of his brain. Despite the dread I felt, I was still completely unprepared for the actual prognosis:
Brain Tumor. Highly malignant. No cure. Death imminent.
Nolan was with my mother in the other room, thankfully. I remember the wails coming from deep within my soul. I remember thinking I was going to faint. I remember feeling as if I was being turned inside out.
My baby, my little boy, my son!!!
The prospects were, of course, grim:
Conventional medicines and treatments offered no cure. Nolan was subjected to six weeks of intense radiation treatments and a round of chemotherapy, which would only offer a slight increase in his life expectancy.
On November 25, Nolan began the first course of treatment, Temodar and radiation. The hope was that it would stay the growth of the tumor, but his headaches continued after this stage of treatment ended in January 2003. February’s MRI brings bad news. The tumor continues to grow. In fact, his pediatrician makes arrangements for Nolan to enter hospice. Nerves in his face have been damaged by the radiotherapy and he has partial paralysis there.
Parents who end up choosing Burzynski are rarely interested explicitly in prolonging life–merely prolonging a child’s life for a matter months, anything less than giving them a full life, in fact, is an unacceptably unthinkable failure. Burzynski, at a steep price, holds out the specter of a cure. This is at the expense of vetted therapies and palliative care, which really do reduce suffering. Sadly, Nolan’s parents decide to go to Texas.
On the 22nd of March, a third MRI shows more growth, and he has lost some sensation in his limbs on his left side. Nolan and his mom are on the plane to Houston the next day. Over the next few days, Nolan has surgery to put a tube in his chest to receive the drugs, which will be infused continuously over the next several months. According to the family:
On March 25, Nolan was enrolled in a phase II government-approved clinical trial of the antineoplaston infusion therapy, which has shown great promise in treating the most difficult forms of brain cancer.
The phrasing here is somewhat misleading, though I understand the hope that it embodies. One should not understand that any drug in a phase II clinical trial is by definition unproved. A decade later, antineoplastons are still unproved, and the study that Nolan was enrolled in remains unpublished to this day, even though the family had to raise the money for him to enter the trial. In fact, antineoplastons are unpromising as ever.
On March 26th, Nolan starts on antineoplastons. He and his mom remain in Houston until April 17th, after they have been trained on how to use the pump, administer the drugs and fend for themselves. He remains on steroids.
An MRI on May 20th reveals that the tumor is stable. This is what someone might expect even for an untreated tumor. When a tumor is small and has, say, access to unlimited nutrients, it can and does grow exponentially. But as the tumor becomes bigger, the time between doublings increases, so what you have is a flattened ‘s’ shaped curve, illustrating Gompertzian growth. He is dizzy and has a lot of pain in his joints, the latter because of the steroids.
The MRI on July 15th shows that the tumor has grown by 13%. Even though Nolan has been on the ANP longer than he was on tested and approved chemotherapies and the treatment is clearly not working, the Burzynski Clinic recommends upping Nolan’s dose, keeping a paying customer on treatment.
Just three weeks later, on 6 August, Nolan has a number of seizures and goes into the hospital for two days. The family lowers the dose of the ANP. On the morning 23rd, Nolan is only semi-conscious and taken again to the hospital. By the next morning, he is unable to breathe on his own, his mother reports:
The kind team at Santa Clara Pediatric Intensive Care Unit kept him alive until his father and siblings could arrive at his bedside to say their last good-byes.
The next year, Nolan’s mother reflected on her experiences:
This time last year we were in Houston, Texas, undergoing those antineoplaston treatments. Even though the treatments are not something I would choose again, I did receive the huge blessing of renewing a friendship with my wonderful friend Lauri […] and her beautiful daughters (and awesome husband). They have been a continued source of support and encouragement to me this past year, and I know the bonds we share will carry through to eternity.
Perhaps, then, it is to be expected that nobody from the Clinic was singled out to be thanked when Nolan’s ordeal ended.
For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.
Taylor M. was 2 1/2-years old on January 11, 2002 when he was diagnosed with a glioma wrapped around his brain stem. He was weak on his left side, mute, and right his eye was crossed. The prognosis for this cancer is almost (but not quite) uniformly dismal, as we have seen several times on this website. The doctors at several different hospitals could offer nothing more than about half a year. This is, of course, an imprecise science. Really, survival times from diagnosis are tracked along a bell curve, and physicians’ interpretation is not set in stone, but rather a likely extrapolation of the current situation based on their past experiences. Long term there is very little variation in the outcomes, however. He was slated for chemo and radiotherapy.
According to an article in the Daily News which appeared on 21 April of that year:
Hope came in January, the day before Taylor was to begin chemotherapy, when a friend phoned with stories of success at the Burzynski Clinic. Taylor’s parents researched Burzynski and liked what they found – stories of children who went on to lead happy lives after their tumors shrunk.
Of course that’s mostly what you find–stories. This case offers a sad irony about how reliable the stories you find on the Internet are.
We don’t see what is happening to Taylor in high resolution, but in February 2002 he went to the clinic, like thousands of other families have. He had a shunt planted in his chest for the antineoplastons, the name of the chemotherapy that Burzynski was peddling at the time. But we hear on a post on a message board:
When we got to Texas to see DR. B our Doctor of 13 years said he can’t sign to watch over Taylor’s Blood work if he’s going to be on the treatment. Well, I wasn’t too scared God has shown us the way so far so I called my insurance comp to find a new Doctor and they told me about 15 names I just called one he is the head of pediatric oncology at Stony Brook University and he said, Yes that he’ll take Taylor as a patent and that he would sign the papers we needed to have sign so we can come home with the treatment for Taylor.
According the Daily News article, the treatment was costing Taylor’s family $10,000/month. (His dad told the reporter he’d be willing to sell his house to pay Burzynski’s fees.) He was on treatment for 3 years.
What precisely happened during those three years is unclear. In April, according to the doctor overseeing Taylor’s treatment in New York, the tumor had not changed since it was detected, and some of the pressure in Taylor’s head has been relieved, but the doctor says it could be due to the steroids that he is on.
In February 2005, on the message board, Taylor’s father makes a bold proclamation:
In that same post, Taylor’s dad made a bold proclamation:
I just got some GREAT news my wife was watching a couple of kids for one of [Taylor’s doctor’s] nurse and she came over to pick them up tonight. She told us that DR Parker is now giving Patent DR B’s treatment as one of there choices. This is big. He sees how great Taylor is doing and that his Cancer is NO MORE that God and DR. B of course. I will be on the news very soon. There is a lady for Entertainment Tonight that is [in] love with Taylor. She did the first news report 3 years ago when my company did a fund raiser and she now is going to do a new story about Taylor And Dr B. We’re going to fly to Texas and we’re going to get DR B’s treatment out and show them how well Taylor is doing. [emphasis added]
On Taylor’s page at the Burzynski Patient Group, his dad conveys the same information:
Taylor is cancer FREE and doing great thank God and DR B.
We contacted the doctor who was overseeing Taylor’s treatment, Dr. Robert Parker, to see if the treatment was or ever had been offered as a treatment in his department. We received the following reply:
The quote is only partially accurate. I did in fact tell parents, when asked, that one of our patients was being treated at the Burzynski clinic, that he was “stable”, and that we were obtaining requested lab monitoring studies at SB and forwarding them to the Burzynski clinic. I made no recommendations one way or the other regarding the therapy but did tell parents that it was ‘controversial” as there was never any published verification of the results claimed by Dr. Burzynski. We did not endorse the treatment and were not administering the therapy at [Stony Brook], but merely helping those families that chose to pursue this line of treatment by providing some degree of laboratory and medical monitoring.
We get a more accurate picture of what was going on with the tumor on June 16, when Taylor’s dad returns to the message board:
Hi everyone. Taylor has always been doing so well so I never put anything bad on here. Well, we need your prayers for our little Taylor. Taylor had a MRI last week and for the first time in three years the scan showed that Taylor’s tumor had grown 16% and I’m very scared it never change before it never decreased or increase and his been doing so well we don’t understand. I’ve been getting about 4 to 5 calls a month for parents of other children that want to bring there kids to DR B’s and I’ve been telling them that my son is Cancer Free and now this what do I tell these people now when they call me?? I’m so sick don’t know what’s going to happen I can’t lose this battle after all these years of him doing so good. [emphasis added.]
It appears that the claim that the cancer was gone was, understandably, the father’s fondest hope, perhaps his preferred outcome, and I have no doubt that in some way he really believed it. And how many people did he recommend the Clinic to based on that rather too optimistic interpretation? Maybe a hundred, at that rate? This is an object lesson in why patient testimonials are no substitute for hard data about efficacy. Most likely, the tumor was slow growing and the ANP did nothing. The steroids controlled the intracranial pressure (which may have been caused by the massive sodium load Taylor was carrying while on treatment).
I wonder if Taylor has been transferred off the ANP at this time and is on phenylbutyrate, the prodrug of antineoplastons, which Burzynski also sells at his in-house pharmacy. At least it sort of sounds like it as on 28 June we hear:
Thanks were going to increase his pills to 40 pills a day and just waiting for 4-5 weeks to do new MRI. God will bless him I know it.
On July 14, we hear what the Burzynski Clinic prescribes. More of what’s not working:
Taylor is doing OK he can’t talk too well or walk too well but DR b said that he can stay on pills he now is up to 60 pills a day poor little guy hates taking them we make a liquid. Thanks for your prayers very much needed right now.
A few days later, on the 19th:
DR’s in Texas are going to put him on IV and steroids and he’s not doing so well may God Bless him and all our little children bye for now.
Back on the IV, Taylor deteriorates even more, as we hear on Aug 23:
I need help Taylor is doing very poorly and I don’t know what to do he can’t walk or talk and I’m very scared that this is the last stage and he’s going to die on me and I can’t do anything else to help him he gets up at less 8 time at night to pee and drink but he cries the whole time he’s doing so. I don’t what to do I need some guidance PLEASE I don’t know what is next he was walking but he was dragging his left leg badly and yesterday he fell and now his right leg is just as bad as his left leg was and his right arm is not working if anyone can talk to me I don’t know what to do I’m losing this battle and don’t know how to handle it.
On the 29th, we hear that his right eye is now crossing. The next day, the local doctors are recommending radiation. ANP has failed. The father refuses and Burzynski agrees, which is incomprehensible given the trajectory that Taylor has been on. By September 24, Taylor can no longer sit up unassisted, hold his head up, talk, or move anything but his left arm and hand. He is still on Burzynski’s treatment.
On October 11, we hear the results of the most recent MRI, and the situation is dire:
It’s not good at all. His tumor had grown 50% in 5 weeks and they’re taking him off the treatment and we have to start radiation and chemo soon.
Usually, this is where the story would end. As far as I can tell, the antineoplastons did nothing to shrink the tumor at all. There is no reason to think that Taylor’s long survival was anything more than the type of outlier that you’d expect. But there is an interesting twist at the end that answers a question that I had wondered about. In January, after a number of surgeries for Taylor, his father says he’s waiting for Taylor to be released from the hospital so they can go to Mexico for treatment–apparently this radiation is the end of the road in the States. Other Burzynski patients and alt med patients chime in, warning Taylor’s dad about Mexico. They are clearly tuned into the presence and warning signs of quackery in Tijuana, which are as far as I can tell indistinguishable from those in Houston. Self-deception is extremely powerful.
Taylor died at 7:00AM on 18 May 2006. As of this writing, his “success” story is still hosted on the Burzynski Patient Group website, over 7 years after he died. The clinical trial that Taylor was in and his parents paid for over the course of several years remains unpublished.
For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski, who demands his money up front for obvious reasons.
Note: This is a repost of an earlier case.
Wayne Merritt was diagnosed with pancreatic cancer in Sept 2009, only 11 months after his wife, Lisa Marie, had been diagnosed with breast cancer. His prognosis was grim by any standard, as Lisa Marie reports in their Caring Bridge journal on Sept 29, 2009 (unless otherwise indicated, the source of this story):
However,.. she made it very clear that this type of cancer is not curable and the chemo treatments would be for the duration of the disease. He would take a treatment for 2 weeks in a row,.. and then be off for 1 week. We asked her bluntly about pronosis with and without treatment and were told “less than 6 months without treatment” and “6 to 12 months,.. maybe as much as 15 with treatment”. It all depends on how the chemo drugs affect the growth of the tumors. There is no way to predict if the drugs would be successful. This is all weighing very heavy on us. We are totally exhausted, emotionally and physically. We just feel numb inside.
On October 2nd, they have settled on the Burzynski Clinic:
Written Oct 2, 2009 3:54pmMuch prayer,… much research,…. much discussion…. has led us in the direction of The Burzynski Clinic in Houston Texas and their method of treatment. We have found an inner peace about this program that we had been unable to feel about previous programs we’ve researched. IT’S EXPENSIVE! BUT, what price can be placed on the life of someone you love!?!?!
The family reports that they were attracted to the Clinic on the basis of its success treating Wayne’s disease:
“They claimed to have had success with Pancreatic/Liver Cancer patients! Up to 5 years of survival, we were told. Wow! 5 years sounds like an eternity when you’ve been given only 6 months!!!!”
The family drives cross country to the Burzynski Clinic in Houston, where they have their first appointment on Oct 8th:
Written Oct 8, 2009 6:41pmWe saw the doctor today. Actually, we saw three doctors today. Dr. Burzynski being one of them. He was updeat and positive about treating Wayne, although he made no promises. He admitted that pancreatic/liver is a tough one. He said the treatment would either help fairly quickly,… or it would not work at all. He will keep a check on the progress very closely for the first couple of months,.. and if he is successful we should see the tumor growth slow down, stop, or even shrink.
They had been expecting to be placed in a clinical trial, as Lisa Marie describes in an email to this site:
“He was not a part of the clinical trial. We were told he would be…. Until we got out there. Then we were given a whole different regimen.” [emphasis added]
They gave us a list of contacts. The sheet contained 4 names of pancreatic patients, 1 would not allow you to contact them, and out of the other 3, the earliest diagnosis was in March of 2009! Where are the people that have survived for 3 years, 4 years, 5 years!!!!???? Heck, even 1 year would have been nice!
In an update on Oct 15, we learn that a PET scan has found tumor activity on pancreas and the liver. They appear on the “gene-therapy” track that the clinic offers instead of the ANP track:
If you are interested…. this is the list of medications…. some of you have asked me. 1) Amino Care- developed by Dr. Burzynski 2) Brain Longevity – developed by Dr. Burzynski 3) Xeloda 4) Sodium Phenylbutyrate 5) Zolinza 6) Nexavar 7) Rapamune 8) Avastin (given through IV)Two out of the three genetic markers have come back….
HER2 was normal
VEGF was very high
EGFR we will get results tomorrow…..
Again, please…. keep us in your prayers concerning our insurance! They do NOT want to help pay for this treatment…. due to the fact that even though these meds are FDA approved,… they are NOT approved for use as being prescribed by Dr. Burzynski. All treatment so far is out of pocket,…. And our pockets are not very deep!
After they return home to Georgia, we receive an update that reveals that there the Burzynski Clinic has not given the Merritt’s an accurate understanding of what lies ahead for them and that they find themselves staring up at the foot of a mountain of debt:
Written Oct 27, 2009 7:50pm
It is with a heavy heart that I deliver the following news…..
We had an appointment with a local oncologist this morning. We went there to get blood work to fax back to the Burzynski Clinic and to set up the infusion of Avastin that he was prescribed to have every two weeks by Dr. Burzynski. They did the blood work without a problem, however when the doctor came in to talk with us, she stated that she would not be able to give Wayne the Avastin infusion…. And that no other oncologist would be able to either. They are not allowed to administer drugs not approved for a particular diagnosis, this makes them liable. She stated that even if she could administer the drug, it would be completely out-of-pocket for us. She stated that the insurance would not cover it, and even had her office check to be sure. AND on top of that,… she said even if we wanted to pay the approximately $8000 for the treatment every 2 weeks,…. She could not assume the responsibility of drug reactions that could occur, which she said were many.
From the first day we went to the Burzynski Clinic, we were pushed into one drug after another, with the costs mounting to great heights with each one added. We had really hoped that a miracle would happen,… either the genetic tests would determine that Wayne did not need to be on some of the drugs,.. or he would only have to take some of the drugs for short periods of time,… or insurance would come through for us and some of the cost would be covered. That has not happened, and the local oncologist says it will not happen. She had her people check and only one medication is approved and covered for Wayne’s diagnosis of pancreatic cancer. We also confirmed this by paying our local pharmacist a visit,.. and they said the same. So,… we now feel any statements made by the Bursynski Clinic concerning insurance payment/reimbursement was just them blowing smoke our way,… to the tune of $20,000 out of pocket plus travel and lodging costs. [emphasis added]
These unexplained, unexpected fees are TITANIC:
We’ve determined that to keep Wayne on this course of treatment would cost us between $28,000 and $30,000 per month for several months, plus travel costs to Houston every 2 weeks to receive the Avastin infusion, because we are unable to get it here. All of this is just not possible. We were told and expected… $15,000 for the first, initial visit/tests,.. and $4000 to $6000 each month in medication. We could have found a way to handle that, but that got blown out of the water!!!!! We feel we were grossly misled.
We are saddened,… crushed,…. confused,…. feeling like we have ran into a solid brick wall face first….. trying to catch our breath and figure out what our next step toward treatment might be. [emphasis added]
The family is rocked by these developments, and they disappear from radar as they recover and regroup. We hear about what has been going on in the interim in early December:
Written Dec 1, 2009 9:31am
It’s been a while since I updated the website, I know, however…. After our last blow to the gut by the Burzynski Clinic… it took us a little while to get our feet back on the ground and clear our minds enough to think clearly as to what direction we should take.
We have decided to go with The University of Texas, MD Anderson Cancer Center in Houston TX. We’ve spent days gathering all the documentation they needed to review his case. It is being reviewed now, and we are waiting to hear as to whether or not they think there is any form of treatment that will be beneficial.
Written Dec 3, 2009 2:58pm
We got the phone call from M.D. Anderson Cancer Center yesterday, and it was not what we had hoped. Because of the treatment recieved at the Burzynski Clinic, Wayne will not qualify for any First Round Clinical Trials. Since M.D. Anderson is a research hospital,… dealing exclusively in clinical trials, they stated that they would not be able to treat him, nor would any other clinic, hospital, doctor dealing in clinical trials. His only choice now, according to the medical community, is conventional chemotherapy. Wayne does not want that.
Merritt family’s grievances at this point include:
–Burzynski gave my husband standard chemotherapy medications along with the long list of other meds that were supposed to work in conjunction with each other. We were never told that two of the medications were conventional chemo medications. AND one medication that they charged us over $2300 for,.. we found out from our local pharmacy that we could have purchased it for around $170 from them.
–SO…After we stopped with [Bruzynski’s] treatment….We were told that he WOULD NOT BE able to take part in any first round clinical trials, because he had taken chemo medications, no matter how small the dose, or how short the duration. WE WERE NOT TOLD THIS UP FRONT.
–We contacted several facilities, including The University of Texas, MD Anderson Cancer Clinic. None of which will see him because of the treatment he received at Burzynski Clinic.
So according to the family, the Burzynski Clinic grievously wronged them in several ways: 1) they vastly overcharged them for common medications; 2) they treated him with conventional chemotherapy (despite all the whooping and hooting by Burzynski supporters about how his treatments are “all natural”) without revealing the full implications of that chemotherapy (apparently denying them informed consent); 3) denying them informed consent, the Burzynski Clinic limited Wayne’s future treatment options; 4) by making Wayne ineligible for experimental treatment, the Burzynski Clinic has impeded research into an intractable and deadly disease.
Everybody suffers from this type of behavior, especially pancreatic cancer patients, who need research into one of the deadliest cancers.
As I think you will agree, the Merritts were completely within their right to make their dissatisfaction with clinic heard in any way they saw fit. And, god bless them, they did. They set up the website BurzynskiScam.com, where they conclude, “In our opinion, the Burzynski Clinic is selling false hope at a price no common person can afford!”
Under normal circumstances, that’s where the story would probably end. At the end of 2011, however, a PR guy named Marc Stephens, who had been hired by the Burzynski Clinic (apparently to improve his online reputation), started issuing quasi-legal threats to bloggers around the world. Stephens went so far as to threaten a teenage blogger in Wales by sending him images if his own house (the only possible interpretation of this is “we know where you live.”) It was written up in the international press:
And he didn’t just email them badly worded threats, he actually phoned them at home. According to an email sent to this site by Lisa Marie, she put him in his place:
Marc Stephens was the one who contacted me. He was very, very rude and pushy. HOWEVER,…. I told him, “I have had breast cancer and faced death, my husband has pancreatic cancer and is facing a death…… after all that…. there isn’t anything you can do or say or threaten that will scare me! And short of a court order… and jail time, I will not be removing the site.”
He did not call back… but I heard that he had been let go by BC. If they have hired another guy…. I’m sure I’ll be hearing from him as well. He will get the same response.
Note: This is a repost of an earlier patient case.
Luna P. was 18 months old when her parents noticed that she was quite unwell in early August 2008. They took her to the hospital and over the course of the next few days she was diagnosed with an ependymoma. Eleven hours of emergency surgery took a hard toll on Luna and left her very weak on her left side and unable to swallow (she was fed through a tube after that). Conventional therapy was very hard on Luna, but in December 2008, the tumor had shrunk enough that the doctor could attempt surgery, and they went through a course of dangerous surgeries over the next few months, which Luna tolerated fairly well, according to her parents’ website. But the tumor kept growing, and this made them desperate.
They met with Anthony Michalski, their consultant in pediatric oncology at the Great Ormand Street Hospital. This interaction and the collaboration of the pediatric oncology department at GOSH was partially documented in the BBC 2 film, A Tough Line. When they review scans following her string of surgeries, the entire team–an entire room of specialists–agrees that the tumor, which is now compressing her brainstem is recurring and that the current treatment is not working. Michalski wants Luna to go on etopocide to prolong her life; a cure, while possible, would likely not be the ultimate outcome. They agree to go on the meds, but when no physician in the UK can offer them a cure, they find Burzynski on the Internet.
In so many of these cases, we hear the parents of children with cancer describe their gamble as an all or nothing game. Either physicians save their child or fail their child. There is no in between, and their desperation is understandable. However, there are halfway points, and while they will feel unacceptable to the parents at the time, there is such a thing as palliative care, which reduces the suffering of everyone involved, especially the patient. It is at this point of abject misery and desperation that Burzynski springs with what he calls “hope.”
In my years working on sketchy claims, I have come to realize that there are two things that anyone can sell, and people will buy it eagerly. The first is flattery. The second is hope. And there is no limit on the price you can exact from desperate parents who are looking for the latter.
And he always tells them exactly what they want to hear. According to Luna’s website:
There is no more treatment that can be done in the UK. We went home and cried for several days then we looked at Luna and thought hang on she’s not crying we cannot give up she has fought so long and hard and not a day passes that through all of this she hasn’t smiled. So we searched and searched asked questions and somehow found contact with another family who’s daughter had exactly the same disease and discovered there was something out there.
A treatment call Antineoplaston therapy which has had amazing results in the US. We have to try this.
The cost to meet the Doctor for assessment is £20,000
If Luna is accepted the treatment then costs £50,000 a year.
This is absurd. There are limited cases where a patient might expect to pay to be in a clinical trial, but the types of trials that Burzynski is doing certainly don’t qualify. Most pharmaceutical companies, when they are developing a drug, offer patients care and treatment free of charge because the patients are volunteering to put their bodies on the line. Burzynski does not technically charge for the antineoplastons, but he charges for everything else that could possibly be related to ANP–visits, phone calls, consults, etc. This does not resemble the business model of someone who expects to eventually make a return on an approved drug, and remember, if he is genuinely going to cure cancer, he is going to be able to charge whatever he likes. The fact that innumerable other startups get their drugs to market without B’s revenue stream is deeply, deeply suspicious.
In late May, and early June, Luna’s story was in the media, in The Sun, in the Watford Observer, and the Sunday Express as the family was actively raising money for Burzynski.
At the end of July, 2011, the family arrived in the United States searching for a cure. By the end of August, back in the UK, they knew that they would be in Houston by September 12.
The traditional treatment seems to be having an effect, keeping the disease from growing. It is an “effective agent,” perhaps the best possible outcome at this point. Nonetheless, the family presses ahead fundraising for Burzynski. They raised £100,000 for Burzynski in a mere 8 weeks.
They report to their consultant in the UK after their trip that Burzynski told them that he has 30% of patients have a good reaction, using the metric of “stable disease.” This is criteria is problematic, though. According to a site review at Burzynski’s clinic:
“Moving from protocols to results, I am surprised by Dr. Burzynski’s statement that stable disease is a positive outcome. That runs contrary to established criteria for trial design. In the context of phase II trials, which are short-term studies, stable disease is not reported as a positive outcome.”
After this consult in the UK, Luna’s doctor remarks,
“But what you hear quite a lot is, ‘how do you know that he or she is going to be ‘the one [who has a successful ‘miracle’ treatment]? … And the phrase that makes my heart sink is ‘We’d never forgive ourselves if…’. Actually, it’s not about them forgiving themselves. It’s about them doing the best for their child. And the focus should be what’s happening for the individual child rather than parental emotions. It’s tough because it’s so understandable […] that you are going to do everything in your power to hunt down the last chance of cure, but where that becomes a futile exercise is a difficult call, a difficult line.”
This is the point that an ethical, concerned doctor takes away from a professional lifetime of caring for children, something that Burznyski seems to have never considered. (It apparently doesn’t fit his business model.)
On October 10th, the family posts a photo of themselves in front of the Burzynski Clinic. As best I can tell, a lot of patients take the same photo. It’s like being forced to watch a horror movie again and again.
Only one week later, however, on October 17, the message goes out:
Little Luna is currently in hospital and not too well. Our thoughts are with all of you xxxxx
So quickly does Luna’s condition deteriorate it’s difficult not to think about how quickly Rachel M. nosedived this fall after starting ANP and how groggy she was. According to an interview with Luna’s mother in the Watford Observer, the treatment put Luna in the hospital:
However, Mrs Petagine said the treatment at The Burzynski Clinic was actually killing her daughter.
She added: “The treatment was – what was happening – was actually killing Luna because it put this pressure on her brain stem.”
Once Luna was on the Burzynski treatment, her sodium level went insanely high. Her REAL physician’s reaction to this news, which was captured on film by the BBC, tells the whole story about what a horror antineoplastons are:
This is much the same deadly side effect that nearly put Adam M. into a coma. Antineoplastons are toxic chemotherapy. A patient informed consent form for one of the ANP trials (dated from last year), included the following as a partial list of ANP’s side effects:
- severe or life-threatening increased sodium concentration in blood;
- risk of death;
- difficulty arousing;
- severe or life-threatening low potassium concentration in the blood;
- decreased levels of consciousness;
- upset stomach;
- low platelet numbers requiring transfusions;
- severe fatigue interfering with activities of daily living;
- fever greater than 104F;
- frequent urination at a rate of urination at least once every hour of more often or a requirement for a catheter;
- liver toxicity;
- irregular heartbeat;
- decreased white blood cell count;
- slurred speech.
This goes on for 3 pages. The quantities of water that patients need to drink (I’ve seen up to 11 liters a day) is obscene.
At a checkup at GOSH, that Luna is in a sorry state is immediately apparent. She is chugging water incessantly throughout the clip and slobbering uncontrollably. No matter what a Burzynski supporter says, this is a potentially toxic treatment and its terrible effects are written all over this little girl. (I should note that this disturbing film is really important to understand the horrible choices that parents are forced to make. I recommend it, lest you think anyone can take writing about these issues glibly. You can’t.)
By February of this year, the ANP has proved to have been a resounding failure. Burzynski, just like with Adam M., tries to get them on his ridiculous “gene-targeted” therapy; it’s basically a Chemo Colatta, apparently mixing drugs that have never been tested together, often applied to cancers that they have not been tested on, but don’t take my word for it:
Luna and her family have been talking to Doctors in the US at the Clinic, who have agreed it is unsafe to put her back on the Anteneoplaston Therapy because her tumour is so close to her brain stem. They have however suggested they put her on a treatment called Gene Targeted Therapy. This is where they take a sample of the tumour and in a lab test it’s genetics and test what drugs will work against it. Then then will give those drugs to Luna. The family are very excited because they knew the Anteneoplaston could eventually be too much for Luna, with possible fatal consequences and of course they are desperate to cure her. The Gene Targeted Therapy is having amazing results in adults so we pray it will do the same for Luna. We now need to continue to fund raise so the family can start the treatment and carry on with it. Any fund raising ideas please email us via the website. Thank you x
Charging $30,000 to start up (again, according to Adam M’s wife) and $20,000/month thereafter for off-label drugs selected via the genetic equivalent of palm reading, the Burzynski boys are shameless. For an illustration of a patient who is on this course of treatment, see the case of Denise D.
From this point on, it is uncertain to me what their relationship with Burzynski is. They seem to have continued fundraising but were working with doctors in Boston.
It is with a heavy heart that we write this update. Despite battling against all the odds over the last 3 years it saddens us to tell you Luna is losing her battle. Lucy and the family took her back to GOSH on Friday after she appeared to be deteriorating in front of their eyes. A CT scan gave the devastating news that not only had the tumour grown but that it now appears inoperable and beyond treatment. The family have been told to take Luna home and cherish the time they have left with her. The picture here shows Luna, her siblings and cousins enjoying a family day for their Popsies birthday. The family continue to show unprecedented strength and dignity throughout and we have nothing but admiration for them – especially Luna x
They carried their daughter very, very far. Her father ran a damned marathon for her. These parents did everything that their instincts told them to do.
On August 8, 2012, the sad, sad news came that Luna had died:
On behalf of Lucy and Mario It is with great sadness that we share with you that our Beautiful Luna fell asleep very peacefully with mummy and papa holding her tight to become a shinning star, and we thank her for all the wonderful memories she leaves with us, and thank you from the bottom of our hearts for all your support and love you have shown us in everything that you have done.
On the 16th, the family–and the whole community that sprang up around her—said farewell to their daughter.
Her family has continued to memorialize their daughter, and I do hope that they continue to press Parliament for more funds for brain cancer research.
After reading so many stories of so many patients and their families, you learn a vast empathy. Every time you start a new patient story, if you are not carried along by the power of the emotions attached to every decision that these families make, something is wrong with you. This is a story of a magnificent woman who died too soon. She she was young, only 50, but her children were almost all grown and as you read her story, you have the sense of a major character being yanked unceremoniously from an otherwise complete narrative.
Maria V.‘s daughter kept a blog of their experiences, starting with their trip to Burzynski Clinic. Maria had stage 4 uterine leiomyosarcoma, a very rare cancer which had metastasized to her lung, liver and bones.
Maria and her daughter flew into Houston on 13 Nov 2011. On the 14th they are at the Clinic, and it’s interesting to get a number of close-ups of the photos adorning the walls of the clinic. They are completely self-serving. One is of Albert Einstein, and features the quote: “Great spirits have always encountered opposition from mediocre minds.” Another one is of Louis Pasteur and it reads, “Nobody knew his name when he got started either.” This difference is that both Einstein and Pasteur, of course, published their results. Pasteur was a master experimentalist. Einstein made extraordinary claims who won over the scientific community when others were able to observe what he predicted. Burzynski, of course, is neither. Most doctors will not work with him, and despite his 60+ clinical trials, he has only ever finished one (a completion batting average of .015). He’s published none of them. When you consider how many patients have paid to be included in those apparently unpublishable trials, you realize the magnitude of what is happening in that place.
Right away, we get a sense of what is going on, as the family is in the waiting room, where they met a patient from Georgia with bladder cancer:
She sat down next to my Mom and in true [V.] fashion my Mom looked over at her and asked, “What’s your problem?” she said it in a sweet way of course. The lady proceeded to tell us about her hardships and was soon called into the Dr.’s Financial Dept. When the woman came out, my mom noticed right away that she was upset, the woman’s brother went to get their car and when he left the woman burst into tears, right away my mom ran to her and started comforting her and telling her it would be ok. I swear it took all the strength I had not to burst into tears at that very moment! It was like watching two injured puppies console each other. I could hear my Mom whispering to her to be strong and I had to look away because one of us had to keep it gangsta.Later my Mom told me the woman was crying because she couldn’t afford the treatment.
We hear that the family can afford the treatment but there’s this:
Today was hard but filled with hope. The doctors definitely had a plan of action and offered us options. I look forward to the days that follow. I know there are people out there that think we are crazy for spending our entire life savings on this without a guarantee, I used to be one of those people but when the person you Love most on the planet is told to go home and die you will go to any lengths and spend any amount of money for another shot.
The next day, Maria begins her “gene-targeted therapy.” This is an untested chemo cocktail based on a blood test which is the genetic equivalent of palm reading:
On a technical note, Mom began her first gene targeted therapy today. She’s taking a medication called PB, it obviously has a longer name but that’s the acronym,that attacks tumors on a cellular level and makes it easier for other medications to kill and break up the tumor. Her new doctors are approaching her disease with gene targeted therapy. Their goal is to stop and shrink her tumors. Once they get her blood and caris results back they will choose medications that match up with the markers present in her blood and design a specific treatment just for her. I have a good feeling about this.
Burzynski’s definition of gene-targeted therapy is so broad that even eating an orange could be considered a type of gene targeted therapy, because metabolism reacts with the products of gene expression. Of course, no matter how “targeted” it is supposed to be, you always have to buy Burzynski’s phenylbutyrate. Of course there is always a cheaper alternative available through Ucyclyd Pharma in Hunt Valley, but patients are apparently encouraged to buy it through the in-house pharmacy.
On the 16th we get the photo of the exterior of the clinic, the same one that so many patients have put on their blogs. And then money becomes an issue, including the bizarre practices of forcing patients to buy in house meds:
The very first drugs they prescribe you at Burzynskis you have to buy there, after that you can get prescriptions filled by your local pharmacists and hopefully your insurance can pay for it. Today, my Mom was given an injection for her bone metastasis, One injection once a month is, are you ready for this, brace yourselves, 3,300 American dollars! ONE INJECTION! This is apart from what she had to pay to get started and that’s not even ¼ of the medication she will eventually be prescribed. Her Blood markers showed that she has a lot of very active HER 2 receptors and will eventually be prescribed Herceptin and that only runs about 500 dollars A PILL, one single pill!
My heart breaks every time we go into the financial office but like I tell my Mom, I don’t need an inheritance I need a Mama Bear! If the treatment works we will find a way to pay, nothing is impossible. There is no way I can let my Mom die because we couldn’t afford it. To break the tension and make my Mom laugh I tell her she better start getting ready to sell some tamales!
The nutritionist was telling us that 70 percent of cancers can be prevented with nutrition alone. WOW. Basically people with cancer should avoid all red meat, eat 5 small meals with healthy proteins and complex carbs, also 1/3 cup of nuts is recommended and a wheatgrass shot every morning.
So far MB has been feeling good, she’s been holding up nicely and responding well to the new meds. She is such a trooper, taking up to 6 pills every two hours. The pills are the doctors special concoction, they refer to them as PB but they really are the antineoplastons in pill form. The doctor has cleverly found a way around the FDA by prescribing them for off label uses. Sneaky doctor;)
One of our nurses, Amanda, took a liking to us and made sure to bring over Joan, Joan has been fighting stage 4 colon cancer for 5 years, MD Anderson told her there was nothing more they could do so she came to Dr. Bs and is THRIVING! After only 2 months her tumor markers have dropped 70 percent! She said she’d never seen such a drop at MD Anderson,We’ve noticed a trend so far, everyone we meet is stage 4,they have been told, by their oncologists, to go home and make the best of the time that they have, they get a kick in the ass and a “See you later…but probably not”, by “modern medicine”.Ironically, what Dr. B is doing with his gene targeted therapy, seems a million times more modern and advanced than what we get at home.
I made this video in anticipation that I would be receiving the antineoplastons. Apparently after spending over 30,000 here I found out that the Antineoplastons are only reserved for brain cancer patients who have already undergone chemo radiation. FDA put this restriction on the Burzynski Clinic, so any other cancer patients are BASICALLY ONLY GETTING THE TRADITIONAL ALLOPATHIC TREATMENTS OF SYNTHETIC ANTINEOPLASTON PILLS THAT DID NOTHING FOR ME. HOWEVER I CAN SAY THAT THIS WAS PART OF MY PATH AND EVEN THOUGH I WASTED MY MONEY HERE I HAVE TO SAY THIS PART OF MY PATH LED ME TO WHERE i AM NOW. […]
MBs doctor’s in TX called today and urged us to start chemo again ASAP, they said MB has a very narrow window of time to get it done before it’s too late and her body is to weak to take it. WOW, [J] has purposefuly been wasting our time, she’s not retarded, or maybe she is, she must know about this window but never bothered to tell us.
Today, I rubbed lotion on [Maria’s] back and saw the toll cancer has taken on her body. She looks like one of those starving kids in Africa. Her arms are skin and bone, her belly is bloated because of the tumors, her skin is thin because of the meds, her hair is gone and her legs are swollen. When she takes off her shirt I’m shocked but unaffected, I don’t cry, I don’t feel like crying, I just rub lotion on her back and demand that God start doing something!Lately [Maria] sits in her chair in silence, I ask her questions and she doesn’t respond. She’s checked out. Her body is here but her mind is elsewhere and its not good. She’s numb too. It’s weeks like these that I pray God take her. She prays God take her too. I tell her to hang in there and she says she tries but that its getting harder.
[The fall has] forced us to reconsider many of the decisions we’ve made. We do not regret fighting,never that, we are just at a place in [Maria]’s disease where all of us have stopped to think, “Is it still worth it, should we keep encouraging her to do chemo when we see that it leaves her bedridden, her body falling apart piece by piece, at this point is this a life worth living. Is all the suffering, the swelling, the wounds, the bed sores, the mouth sores the sadness worth it?” I still don’t know, someday’s I think yes and some no. Everytime she gets mouthsores or a wound it’s like I get punched in the stomach. I don’t know how nurses do it. Whenever I help heal [Maria]’s wounds or even give her water to drink I’m forced to look away. I just don’t know anymore.