Category: Uncategorized

Burzynski Patient Briannah O.’s Story

At four months of age, after seizures and becoming rigid and immobile, Briannah O. was diagnosed with a exceedingly rare brain tumor, a juvenile pilocytic astrocytoma. The tumor was inoperable and eventually the size of a grapefruit. It’s typically slow growing and while usually benign, it occupies valuable real estate. In the first two months after diagnosis, Briannah had two shunts put in to relieve pressure from fluid accumulating in the brain and had a very, very brief trial with chemotherapy. According to one of Briannah’s websites, in early 2007, the family was interested in going to the Burzynski Clinic.

Almost immediately, the family started to run into troubles with the Clinic. Brianna’s mother left a post on a message board on May 10, saying that she was unable to get any of her local doctors to agree to work with the Burzynski Clinic, whereas the “B. Clinic people are making me feel very pressured like it’s my problem.”

The antineoplaston treatment can only be administered, per an agreement with the FDA in the mid-1990s, under the auspices of a clinical trial. Burzynski opened over 60 clinical trials and in the nearly two intervening decades has only finished one and published zero.

One of the problems is that after the training period of a few weeks in Houston, Burzynski shifts the burden of administering the treatments for months onto the caregivers. The fact that the administration of the treatment is in the hands of well-meaning amateurs may have contributed to a finding the FDA made earlier this year:

You failed to protect the rights, safety, and welfare of subjects under your care. Forty-eight (48) subjects experienced 102 investigational overdoses between January 1, 2005 and February 22, 2013, according to the [trial number redacted] List of Hospitalizations/SAE (serious adverse events) [redacted] Overdose [redacted]/Catheter Infection report. Overdose incidents have been reported to you [….] There is no documentation to show that you have implemented corrective actions during this time period to ensure the safety and welfare of subjects.” [emphasis added]

Because people are administering this treatment at home, they need local physicians to take over the routine tasks of blood work and other local monitoring. It is not at all surprising to see that a patient would have a difficult time finding a knowledgeable physician refusing to work with Burzynski. When she says no doctor is going to “sign any documents that legally bind them to the clinic and that legally links them to be a  FDA co-investigator,” it is ironic, since according to an argument by which Burzynski managed to cling to his medical license last year:

“Respondent’s ownership of the clinic and his self-designation as the clinic’s chief physician on some forms, his ability to hire and fire everyone, and even that the forms which state that he is in “charge of treatment” (as stated in the informed consent forms for patient A) is only evidence of responsibility under vicarious liability theory, given the fact that the medical records detail exactly what doctors provided services to these two patients and who was involved in the delivery of medical care to these patients.”

It sure sounds like someone knows it’s a bad idea to take responsibility for patients at that clinic.

The same day as that previous post, Briannah’s mother posted that the “Barbara T.” at the Clinic explained that the family needed a FDA form 1572 to proceed. “Barbara T” was likely Barbara Tomaszewski, who was Burzynski’s business manager. According to Burzynski’s lawyer, during the period when Burzynski was indicted, she kept the clinic afloat:

“As the patient numbers started to decline, she came up with dozens of ways to cut costs and increase income. Some of the services that had been farmed out, like pharmacy supplies, were brought inside the clinic, and buildings were refinanced. She did whatever she had to do to squeeze or save every dollar she could.” (108)

I wonder how much of the current “everything but the squeal” business model of the clinic is a legacy of this woman?

Later that same day still, she heard the same message from Dr. Weaver. Dr. Weaver, by the way, was sanctioned in May 2014 by the Texas Medical Board for his behavior at the Burzynski Clinic, including:



Sure I could go into the problems that the FDA reported about how Burzynski’s institutional review board works, but who has the time? Luckily, there’s an entire Form 483 covered with numerous observations that suggest the board is unable to oversee a trial.

On the 17th of February, Briannah’s story hits the papers, as the family desperately scrambles for funds for Burzynski:

The [O family] and their friends and family are seeking financial help to get Briannah to Houston for the experimental therapy, which uses synthetic organic compounds called antineoplastons.

Dr. Stanislaw Burzynski originally developed the treatment more than 30 years ago, and has treated more than 3,000 patients with the intravenously injected compound, which essentially reprograms the brain tumor cells to die off and stop growing.

The procedure is considered experimental because Food and Drug Administration trials that have been ongoing since the 1990s are still under way. That also means it is a private treatment that insurance won’t reimburse. Just starting the treatment costs $20,000, and it can add up to as much as $200,000 over time.

Preliminary FDA trials show that of 226 brain tumor patients treated, 29.2 percent showed complete disappearance or more than 50 percent shrinkage of the tumor, 35.8 percent showed stabilization, while 35 percent had continued tumor growth, according to the clinic.

One wonders where these numbers came from and if they can be said to represent anything real. It’s hard to know since the FDA observed that 2/3 of the outcomes that they examined during an inspection were inaccurate, finding:

Burzynski (as investigator, the subject of the inspection) “failed to comply with protocol requirements related to the primary outcome, therapeutic response […] for 67% of study subjects reviewed during the inspection.”

This means that several patients who were reported as “complete responses” did not meet the criteria defined in the investigational plan, as were patients who were reported as having a “partial response” and “stable disease.”

At the end of April, Briannah has a shunt revision. The next week, she is up and bubbly, apparently healthy enough to travel to Houston:

The gift of little Briannah’s health comes at the perfect time, following a $22,000 anonymous donation to help start an experimental treatment at the Burzynski Clinic in Houston. Another $2,200 has been donated into an account established for Briannah.

But the struggle the [O family] began almost a year and a half ago, when their daughter was diagnosed with an inoperable and life-threatening brain tumor, is not over.

They need a local doctor to agree to be the “co-investigator” for Briannah while she is home from her treatments in Houston. And, in future months, they will need an estimated $7,600 per month to maintain the treatments.

Tammy said she is not a desperate mother grasping at straws, but a mother who has no other options for treating her baby’s condition.

The treatment is considered controversial in some medical circles.

This passage is simultaneously heartening and infuriating. The generosity of strangers is often amazing, and this is one of the biggest anonymous donations that we have seen since we started this website. Nonetheless, I am baffled that hundreds of patients have been looking for media attention to raise money for decades, and not one reporter has gotten off their backside to investigate whether or not their coverage of the issue would be a positive thing for the community until Liz Szabo put in months of legwork for her USA Today report, which appeared a few weeks ago. She and her editors should be congratulated for their brave decision to look more deeply into the Clinic, a courage that was recently honored with high praise from William Heisel on the Annenberg School blog: “Her story in USA Today, Doctor accused of selling false hope to families, is one of the best medical investigations I have read.”

On June 6th, a gallery of the family’s trip to Houston goes up.

On June 11, 2007, Briannah’s mom sent an email to a member of a now abandoned antineoplaston support group, who reposted it. The family had some connections in Houston (I think they lived there before), and after they flew down, spent some time reuniting with friends. Then they visited the Clinic. I turns out that while the staff was “delightful and helpful,” Briannah had not had the appropriate type of head scan prior to coming to Houston:

I was never told by the clinic in all the times that I spoke with them over the phone that it had to be a specific kind of MRI. I was just told that I had to have an MRI with in 2 weeks of our appointment.

At this point, I imagine that the family spends a couple of weeks learning to be independent caregivers for their daughter. Learning how to use the pump and prepare the bags. They stay with a couple who live near the clinic.

According to the local paper on 16 June:

[Briannah’s father] will return to Gilbert on Father’s Day, leaving his wife and their two other daughters in Houston for the first three weeks of the treatment, which could last an undetermined period of time.

“We don’t doubt that the medicine is going to work on her,” [her dad] said.

The treatment begins the same day that article runs. A scan posted in July shows the sheer size of this tumor. It dominates the center of the scan and is a terrifying monster. In August, the family is having a hard time keeping Briannah’s electrolytes under control. Her sodium levels are all over the place, and she’s experiencing the known side effects of antineoplastons. The Clinic claims they have never seen sodium plummet like this before.

At about the same time the Baby Briannah Foundation is incorporated.

On August 31 she had a scan. Two weeks later, the results are in:

This is the first MRI that we have had done since we started the Antineoplaston Therapy in June 2007. The report also stated that the ventricles remain dilated and have “minimally” improved since the previous study!!! […].

I am so grateful for Dr. Burzynski and his awesome discovery of the Antineoplaston Gene Therapy! I sincerely believe that because of these treatments Briannah is with us today and doing as well as she is.

One wonders how much of the improvement is due to the shunts that were fixed in April and how much this is to be expected from a slow growing tumor. There is also the question of how tumors grow–sometimes periods of stability just happen. Notice that it is not shrinking.

The local paper notes on Oct 8:

But since Briannah began experimental treatment in June in Houston, Texas, the youngest of Tammy and Mark [O]’s three daughters has experienced a lessening in the swelling and gained a lot of baby fat. For the first time, her MRI shows no growth in the tumor.

At this point, we’re going to guess that the improvement that we are seeing is related to steroids. Reduction in swelling? Gaining weight (for a baby that was failing to thrive before)? We’re guessing steroids. Burzynski’s patients are often treated with large doses of steroids, according to the FDA, and as reported in USA Today, patients were found to be on 5 to 65 times the anticipated dose of steroids. As the Clinic is basically a one-trick pony, there is no reason to suspect they changed their tune here.

Among the other revelations in this article, we learn that the treatment is costing $6,400 a month and that the little girl’s birthday in mid-October will double as a fundraiser. Also given the completely expected toxicities we saw above, the reporter still manages to open a sentence with the line: “The treatment, considered nontoxic….” I don’t think that the journalist did anything wrong, I just think that the family has a distorted view of what toxicity means.  

On the 11th of December, following another MRI, we are informed that the tumor has shrunk by 9%. It’s hard to take anything the Clinic tells a patient seriously when the FDA observed two-thirds of the reported clinical trial outcomes were apparently inflated. I’m not even sure how clinically significant that would be if it is an accurate result, especially as, according to the Szabo story, experts (which Burzynski is not) will disagree 40% of the time when when interpreting rare brain tumors. These results were reported uncritically in the local paper on 28 Dec. There is something of a vicious feedback cycle here. One must be completely and totally up front about the prognosis at all points with patients. They deserve that, especially when they are as vulnerable as parents as a child with a brain tumor. They have never had good news. ANY change, even “not getting worse,” is a HUGE victory, and expectations need to be managed. Yet the family reports:

“Right now, little Briannah is going to live a normal and a full life,” said [Briannah’s dad]. “We’re just really overjoyed.”

This is, of course, what everyone wants. But is it likely? And when it is reprinted in a paper, it’s difficult to see how that hope could not be massively reinforced, making what comes later all the more devastating.

In Feb 2008, Briannah seems to be having a crisis related to her sodium levels. She may be experiencing salt wasting, which can happen when there is injury to the brain. Via a friend of the family, we learn on Feb 7th:

“Baby Briannah was moved to PICU yesterday because her sodium levels dropped dangerously low. My daughter told me last night that Briannah was on IVs and her sodium level had come up some. Tammy and her husband, Mark, have made what was a difficult decision for them; they have decided to insert a peg (g-tube) for Brianna’s feedings. She has been getting her feedings with an NG tube for about 2 years now. Providing her Sodium level rises to normal today, the Broviac (Catheter) and Peg surgeries are scheduled for 2 PM this afternoon. That will be 3 PM Texas time.”

That night, we get an update on what is happening from Briannah’s mother. The catheter needed to be replaced and a gastric tube has been put in. At the same time, when she goes off of ANP, her sodium plummets. It may be the first time that ANP has actually pushed someone’s sodium in the right direction.

This child is clearly not on the path to the full normal life that everyone hopes for. And despite this trip to the PICU, the local paper reports in May:

Since the treatment began, mom Tammy [O] said the youngest of her three daughters has been happier and healthier than ever.

“We’ve been able to enjoy this year,” [her mom] said. “It’s been wonderful. No trauma. No injuries.”

Further, and perhaps not surprisingly, Briannah’s development has been arrested, though by all accounts she is a happy little girl:

Due to the tumor and a surgery when it was first discovered, she still can’t walk but she actively interacts with her parents and sisters, kicks, sits up and speaks baby talk.

We also learn that the father is turning his DJ business into a fundraising vehicle for Burzynski’s treatment, and in early June, another fundraiser is held at a farm where guests pick peaches to raise money.

In August, we get another optimistic assessment from the local paper, as well as this description of the treatment:

Briannah’s tumor has shrunk 20 percent since she began the nontoxic gene therapy treatment at Houston’s Burzynski Clinic.

The definition of gene therapy that makes this description of antineoplastons accurate would also redefine eating a banana as gene therapy. While the family did share some scans, I can’t find any of the results of this treatment. Further, she is still having some serious issues:

While she’s beginning to briefly sit by herself, doctors don’t know how much Briannah can see, and she also has been having seizures.

It looks like the family took a two hour trip to Sedona right before Christmas.

On January 26, a post goes up on another patients’ website:

An optic glioma, the type of tumor that James has, is considered a “benign” tumor. How deceiving that word can be. Too many believe that it means that this tumor will/can do no harm. Yet, I write tonight with tears flowing and a heavy heart because sweet Baby Briannah lost her life tonight to an optic glioma.

(In fact, it looks like she may have died on the 24th.)

As the family described her passing, the family were with their pastor at Phoenix Children’s when Briannah died.

The local paper described the last hours in more detail:

The fight included shunts placed in her skull to reduce swelling in her brain and, beginning in June 2007, an experimental gene therapy in which she was administered a synthetic organic compound through a tube.

It seemed to be working. The tumor was shrinking, and the once-emaciated Briannah had reached a normal height and weight, though she was unable to walk or talk.

Everything changed last week, when Briannah’s sodium level plummeted, causing her kidneys to shut down. She went into cardiac arrest twice.

“She left her body twice, and they brought her back after 22 minutes, and the second time after 18 minutes,” [her mother] said. “That in itself is a miracle, I’m not kidding you.”

But eventually, [Briannah’s parents] had to make the decision to take her off life support. “When I got to watch Briannah’s body deteriorate, it got to the point where it was easy to let her go,” [her mother] said.

It is difficult to reconcile the idea that the treatment seemed to be working and the poor little girl’s progression and death. We can say, however, that lot of patients have celebrated their fortunes while on Burzynski’s treatment when they in fact were progressing. One of the most scary things that we have found here is a pattern of descriptions of tumors breaking up on the inside and patients rejoicing, when the fact of the matter is that it is far more likely to be a sign of a tumor outgrowing its blood supply. And we’ve seen this for decades:

On February 2, the family celebrated the life of Baby Briannah, as she was known to the community that rallied around her. Her mother bravely posted an image from her daughter’s services on her website. This makes all the more galling the following post on the website:


Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong at the FDA so we can fix it and so this never happens again.

Burzynski Patient Ryan W.’s Story

*An appeal to encourage Congress to investigate this follows Ryan’s story*

In August 1989, Ryan W. was diagnosed with a thalamic glioblastoma, a grade IV tumor right in the middle of the brain. His prognosis was grim; his doctors estimated 6-9 months, perhaps, maybe a year with the standard therapy. (When patients exceed these estimates on Burzynski’s treatment, they are often touted by supporters as “successful treatment”, however the actual speed of progression falls on a bell curve, and outliers are to be expected.)

Beginning in October, Ryan was treated with 5 weeks of radiation. That treatment seems to have not had any effect on the tumor, at least according to an MRI in January. At the beginning of the new year, we learn that Ryan seems to be undergoing another trial of radiation and has had some complications, according to an announcement in a regional paper:


The Fred Villari Studio of Self-Defense will hold a “kick-a-thon” Friday to raise money for the family of a 10-year-old Marlboro child diagnosed in August with a malignant brain tumor.
Students at the Route 35 studio as well as the Morganville branch are encouraged to attend with family members and friends, according to Anthony Russo, chief instructor at the Middletown studio. The goal is to perform the self-defense style kicks 100 times, and everyone participating is encouraged to solicit pledges of at least 10 cents a kick. Pledges will be recorded on a tally sheet provided for each participant.
Proceeds go to the Ryan [W] Fund and will assist the Werthwein family with medical expenses for their son, an identical twin who is currently undergoing a six-week radiation therapy treatment.
Complications from a surgical procedure caused Ryan to lapse into a coma lasting two days, and although he regained consciousness, he suffers from short-term memory loss, according to information prepared by the studio.
The surgical procedure, I am told by Ryan’s mother, was a biopsy, not meant to treat the tumor. In Richard Walters’ 1993, Options: The Alternative Cancer Therapy Bookwhich slathers unearned praise on Burzynski’s antineoplaston treatment and is the most complete record of Ryan’s treatment, Ryan’s mother describes what can be the severe effects of radiation on the developing brain:
“The radiation burnt out most of Ryan’s pituitary gland, stunted his growth, and hurt his mental functioning,” according to Sharon [W.], the boy’s mother.”
He was significantly shorter than his identical twin brother. If the radiation had such a profound effect on Ryan’s development, I’m at a loss as to how explain how/why the tumor would be unaffected. According to Walters:
After reading up extensively on alternative therapies, Ryan’s parents decided to forego chemotherapy and take their son to Houston for treatment by Dr. Burzynski. “The doctors really beat us up over not doing chemo. We were discouraged at every turn from pursuing a safe, nontoxic alternative. They also told us Burzynski was a quack,” recalls Sharon.
Antineoplastons are neither safe nor non-toxic, nor can you really consider them to be alternative therapies to chemotherapy, as they are basically derivatives of sodium phenylbutyrate and are chemotherapy by any reasonable definition.
The known toxicities can be found on this recent patient consent form, a central part of any research protocol:
A recent inspection found that toxic events have often been reported by Burzynski’s patients, but that the Clinic has been slow to act on that information. For instance:
  1. Patients who had Grade 3 or 4 [severe or life-threatening] toxic effects were supposed to be removed from treatment. One patient had 3 Grade 3 events followed by 3 Grade 4 events. Another patient had 7 disqualifying toxic events before he was removed from the study.
  2. Burzynski did not report all adverse events as required by his study protocols. One patient had 12 events of hypernatremia (high sodium), none of which was reported. There are several similar patients.
  3. The FDA told Burzynski: “You failed to protect the rights, safety, and welfare of subjects under your care. Forty-eight (48) subjects experienced 102 investigational overdoses between January 1, 2005 and February 22, 2013, according to the [trial number redacted] List of Hospitalizations/SAE (serious adverse events) [redacted]/ Overdose [redacted]/Catheter Infection report. Overdose incidents have been reported to you [….] There is no documentation to show that you have implemented corrective actions during this time period to ensure the safety and welfare of subjects.” [emphasis added] Further, patient records show that there were many more overdoses that were not included in the Hospitalization/SAE/Overdose list.
 Ryan’s mother reported at the onset of treatment:
“The American Cancer Society said they have an arrangement with the Hilton to keep rooms available for cancer patients’ families, but when we mentioned Dr. Burzynski’s name, they said to ‘forget it.’ The Corporate Angel Network, which boasts in TV ads how it flies young cancer patients around the country for free, refused to fly our son because the National Cancer Institute won’t let them fly Burzynski’s patients. The system is a disgrace.”
For at least 23 years, top cancer charities in the country have refused to participate in what is happening in Houston. More recently, Burzynski patient Kassidy M. was similarly denied a place to stay at Ronald McDonald House because of her intended course of treatment.
According to Walters’ book, Ryan began antineoplastons in mid-April 1990.
One month after the intravenous infusions were started, there was a major breakdown of the tumor mass, and from then on, it steadily shrank as the therapy continued. “It felt as if a miracle had occurred,” says Sharon. An MRI scan of the brain on May 15-after four weeks of treatment-showed only barely visible tumor remnants.
In June, they are fundraising for Burzynski:
What is endlessly frustrating is that these drugs were called “experimental” in 1990 and are still “experimental” 23 years later. A major red flag, especially when Burzynski’s lawyer said of Burzynski’s first trial:

[W]e decided to hit the FDA with everything at the same time. All of his current patients would be covered in a single clinical trial which Burzynski called “CAN-1.” As far as clinical trials go, it was a joke. Clinical trials are supposed to be designed to test the safety or efficacy of a drug for a disease. It is almost always the case that clinical trials treat one disease.

The CAN-1 protocol had almost two hundred patients in it and there were at least a dozen different types of cancers being treated. And since all the patients were already on treatment, there could not be any possibility of meaningful data coming out of the so-called clinical trial. It was all an artifice, a vehicle we and the FDA created to legally give the patients Burzynski’s treatment. The FDA wanted all of Burzynski’s patients to be on an IND, so that’s what we did.

Walters reports:
On November 1, 1990, Ryan displayed complete remission.
Yet, in 1993, when Walters publishes his book, for some reason, Ryan
continues to receive antineoplaston treatment, but the dosage is gradually being reduced. He wears a miniature infusion pump, carried in a waist pack, that injects antineoplastons through a catheter in his chest twenty-four hours a day. There is no pain or discomfort.
It seems after his remission, he went back on ANP, at least according to his mother. It’s hard to say what caused the initial remission, because there were at least two interventions that would have affected the tumor before Burzynski was in the picture, a biopsy and radiation. Ryan died in 1994 at the age of 14. This was 20 years ago. Antineoplaston treatment is still considered experimental.
Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and so this never happens again.

Burzynski Patient Josia C.’s Story

Josia C. was 6 years old when he started experiencing a lazy eye, excessive drooling, headaches and double vision. On 25 Aug 2011 he was diagnosed with a pontine glioma, one of the most dire diagnoses that a parent can hear. Of course, his life in Brooklyn was upturned, and he started under the care of a physician at NY Presbyterian / University of Columbia. The first stage of Josia’s treatment was radiation and chemotherapy, including a clinical trial. You get a sense of the seriousness of the prognosis in one of his dad’s posts in April 2012.

How discouraging, but out of the four other children under the same chemotherapy trail Vernostat, Josia is still alive after 8 month. A brutal Cancer war! I questioned God repeatedly for understanding and clarification.

Pontine gliomas are vicious. Because of the treatment, Josia misses most of the year of school. As he told the New York Daily News:

“I never see the kids at my school anymore, but I think about them,” the precocious 6-year-old told the Daily News.

“When I go back to school, I’m going to say, ‘Yay! I’m going back with my friends! I’m going to play!’ ” Josia said.

Even though the tumor has responded to therapy–shrinking 50%–these tumors are notorious for bouncing back, so in December, according to the family, they sought out the Burzynski Clinic. In March 2012, the family begins raising money in earnest for Burzynski. “Dr. Burzynski offers us hope,” they say in a video appeal:

He offers a treatment, an alternative treatment, for cancer, the same type of cancer that my son has […] His treatment is called antineoplastons. It’s a combination of peptides that turn on and off switches in your genes that help fight the tumor. The antineoplastons are free of charge. They come at no cost to us. However the medical history review is $500, the consultation fee is $1000, the deposit to begin therapy will cost us $18,000, the monthly deposits $7,600 each month he’s on the treatment. The catheter insertion will cost approximately $6,000.

They approximate that the total cost will be $188,000 for a year of treatment. Yet they say that the ANP is free of cost. Josia’s dad says in the video:

This treatment offers us hope, offers my son an opportunity to grow up, some of the things we enjoyed in life: marriage, prom, first date, having your first child […]

As you watch the video, you can see the tiredness and desperation in their eyes. And there’s no doubt that they will raise the money. Patients seem to find a way. But as they start this, the family has a strange notion about the efficacy about antineoplastons (ANP):

While clinical trials have shown promise, the American Cancer Society says the effectiveness of the therapy “remains uncertain.”

Chemo and radiation alone offer Josia a 6% chance to survive after five years. Josia’s father contends antineoplastons therapy will vastly improve his son’s odds.

“With this treatment, he’ll have a 26% chance of survival,” said [Josia’s dad], who works for TD Bank.

So far, the family has raised about $25,000 for the alternative treatment, mostly with the help of Josia’s classmates, teachers and Clinton Hill neighbors.

I want to know where they got this number. It can’t be the clinical trials because they have never been published. Never. Over 60 trials begun. 0 published. The antineoplaston trials at this point were only preliminary–they were only phase II. There was no possible basis for anyone to make this claim to the family. Furthermore, the studies that might have demonstrated the efficacy were fundamentally flawed. According to a recent FDA report, all of the baseline scans for these patients were destroyed, positive outcomes were inflated 66% of the time, not to mention a host of ethical problems, including devastating toxicity data (withheld for long periods of time) and over a hundred overdoses with not a finger lifted to protect patients from it happening again. On that basis, all of those numbers cited by the family are unreliable. Families deserve the best information before they decide to spend $188,000 on unproven treatment. You can see how desperate the family is in this video from the local CBS station, and you have to wonder what is going on in the mind of someone who would tell people this desperate exactly what they want to hear without providing good evidence and then accepting enormous stacks of cash for it.

The family is on the verge of leaving for Houston, when on the 13th of April, a setback:

Things just turned to the worst. Josia’s brain tumor is bleeding. We don’t know how much and it’s leaking blood. It seems like Houston will be out of the question. We don’t know yet. We’ve work so hard to get to this point and now I feel like my world is shattering. God I beg of you I’m on my knees please help us get Josia this treatment. Please after the treatment well know if it work and if it doesn’t then I would be the proudest father of an Angel.

The bleed seems to have dampened Josia’s vital signs, and the doctors give him steroids to take pressure off of his brain:

They are going to give him steroids 10mg this will relieve the pressure in the brain if he regains his vital sign we are out to Texas. ASAP.

The next day he is out of intensive care, and his family is focused on getting Josia to Houston:

He has a feeding tube placed and has gained back his speech and is able to swallow to some degree. We are still going to Texas just not by plane. We are driving there.

The feeding tube is removed on April 16th, and on the next day the family is on the road to Houston. Josia’s dad offers a prayer:

Lord please make a way for us to get to Texas. Keep us safe on this journey. Grant us strength and awareness. Give us the ability to drive this long trip. God you have provide us with the wisdom and knowledge to discover this treatment. You have not blink once and kept both you eyes on us. We are on the road for Josia’s miracle treatment. Doctors have told us that there is no cure no treatment that can save Josia little do they know jesus has already saved us. You have pointed the way and we see it. You have told us you will be with us and you have. You have blessed us with placing people on our path that donated the money to pay for this treatment. Thank you god and keep us safe amen!

On the 19th, they make it to the Clinic:

So what did we pay for and for how much.
Consultation with three Medical Doctors that’s including Dr. Burzynski himself. $1,250., We will have the catheter insertion done with an out of network surgeon recommended by the Burzynski Medical Team. This will save us anywhere between $900 to $6,000. The average price $6,000 the awesome and diligent finical team that will be helping us every step if the way told us that our emergency room PPO insurance will cover either the full balance or partial. Either way sounds good to us. Again we are saving every $ we can.

As an antineoplaston patient, the surgery was to put a port in his chest for the near-continuous stream of antineoplastons to be pumped into him. On the 24th, Josia has that catheter implanted in his chest after a short, half-hour surgery.


(One thing that you notice as you go through the family’s online record of what they endured–and in the celebrations of Josia’s life–is that he was always smiling. A lovely boy with much spirit.)

On April 25th 2012 Josia begins treatment at the Burzynski Clinic, as you can see from this partial screenshot from their website:


The antineoplaston treatment takes time to learn how to administer. It’s fairly complicated, as best I can tell, because it takes families about 2 or 3 weeks to learn exactly what to do to administer the treatment on their own. On the 26th, Josia’s dad needs to fly home, leaving the family (including Josia’s grandma) in Houston:

Tonight I fly back to NYC. I’m so scared of leaving them behind. I know that god will watch over them and even more closely that I am not there with them. I still have my faith that god will heal my son. Please continue to pray for Josia, N., and my wife.

On May 4th, Josia’s mom reports her progress on learning the pump:

Josia is doing so well an I am learning everything well enough that they gave me the weekend off from clinic training an have to do everything at home(hotel) this morning went well and so I drew blood and set bags ready to pump.

On May 9th, the family is reunited in Houston, ready for the ride home. Josia seems to be tolerating the treatment. They are home on the 11th.

There is no public update on Josia  that I can see until the 25th of May, when his dad prays. It’s an expression of pure emotion:

I feel like my heart has broken into a million pieces and Josia is trying to put it back together. God I know you are watching us from above. You felt the pain I feel for my son. My soul worships you and my hands are guided by your holy word. My son gives me hope and keeps my faith strong. I’m not going to fight you for Josia, but as long he is here with me I will give him my all. Josia is a part of me as your son is to you. Please don’t take Josia away from my family just yet. I have faith he will survive this. Cancer is our enemy but you are our shield. Protect Josia and heal him whole. I believe in your name and the holy power to heal. Thank you God, in Jesus holy name I pray. Amen

On June 6th, the family was present at the Make A Wish Wishing Place in Monroe, NJ, where the NY Giants’ rookies appeared. Here is some video from the event, which got a little press coverage. Adewale Ojomo, a defensive end, was touched by the experience:

“It touched my heart,” Ojomo said. “I thought I was tough … these kids are tough. They’re fighting all kinds of illnesses and sicknesses. They inspire me. This was a privilege.”

On June 7, Josia, I presume, has problems swallowing, as a feeding tube is going in. They also head in for an emergency MRI.

Over the weekend of the 11th, Josia was visited by friends.  Josia is still smiling, but in the photos you can tell that he’s had it tough.

On June 15th, an update by Josia’s father:

Please pray for my baby boy. Josia is in a coma. We are headed to the hospital now. Jesus save my son.

There are a number of touching photos posted, and then the somber prognosis:

There are no words to describe the pain [Josia’s mom] and I are feeling. Josia is in a coma but can still hear us. [F]or some reason god has been preparing me for something. I just did[n’t] think it was this. His organs shut down and he is breathing very heavy. He’s still fighting. Josia is more of a man than I could ever be. His strength is unmeasurable.

Liz Szabo, the health reporter for USA Today, told the story of that day like this:

On the last day of his life, Josia [C]’s parents gave him a choice.

The 6-year-old boy had been fighting an inoperable brain tumor for 10 months. When his mother […] found him in his bed, unresponsive and unable to open his eyes, “we knew there was nothing else that we could do,” she said.

An ambulance took Josia to a hospice room at a local hospital. His parents covered him in a soft, blue-and-white blanket, hugged him and held his small hand for the last time.

“We told him the choice was his, whether to keep fighting or be in peace with God,” said his mother. “He chose.”

Josia’s parents would have paid any price to save him.

A Texas doctor, two months, earlier, had given them one: $25,000 upfront, by cash or check.

Josia died at 2:30 on 15 June 2012. The family posted a touching video that spanned Josia’s all-too-brief life:

At this point, I am seeing no evidence that the treatment Josia was on positively affected him. In fact, the evidence suggests that the antineoplastons may have contributed to his death. According to Szabo:

The FDA’s patience with Burzynski apparently wore out after Josia died.

In a report sent to the FDA after the boy’s death, Burzynski’s staff acknowledged that his last blood sample, taken the day he passed away, showed a blood sodium level of 205 millimoles per liter, a level that is typically fatal. Burzynski’s staff blamed that reading on a “false laboratory report based on a contaminated sample.”

Yet hypernatremia is one of antineoplastons’ most common side effects, known to doctors for two decades.

One of Burzynski’s own informed consent documents — the form that patients sign before they begin treatment — put the risk at 21%.

On July 30, 2012 — six weeks after Josia’s death — the FDA forbade Burzynski from giving antineoplastons to any new children.

Six months later, the FDA expanded its “partial clinical hold,” forbidding Burzynski from giving the drugs to new adult patients, according to the Burzynski Research Institute’s 2013 filing to the Securities and Exchange Commission. About 10 patients who were already receiving antineoplastons were allowed to continue, to avoid interruption of care.

To get a sense of what that means, this is a doctor’s reaction when he heard that Luna P.’s sodium while on antineoplastons had reached 178, as captured on the BBC documentary A Hard Line:


It is a horrifying, unthinkable outcome. I want to know why when Luna P. had this result, the FDA did not clamp down on him instantly.  It might be because, as the FDA found recently, Burzynski has not diligently reported toxic events to the FDA promptly as he was required to, failing to report this condition, hypernatremia, at least 18 times. Furthermore, 48 patients experiences over a hundred investigational drug overdoses, and the FDA found that there was:

no documentation to show that you have implemented corrective action during this time period to assure the safety and welfare of subjects.” [emphasis added]

For the last 10 years of abysmal, inexcusable failures on the part of the Burzynski Clinic, see this compilation.

Josia’s overdose should have been prevented. It was Burzynski’s job to lift a finger and make it happen. He didn’t, and Josia suffered for it. Burzynski’s explanation for Josia’s overdose, that it was a contaminated blood draw is absurd on the face of it. According to a competent physician and researcher:

I was astounded to see that number [205]. I’ve never, ever seen a sodium level that high. Typically, normal is typically between 135 and 145 mEq/L, with slight variations of that range depending on the lab. Burzynski’s excuse, which I’ve heard at various times as being due to an “improper blood draw” or as described above, is purest nonsense. A bad blood draw typically produces falsely elevated potassium levels, not sodium levels. Unless the technician spiked Josia’s sample with 3% saline or something like that, there’s no way to get the level that high. Josia almost certainly died because of hypernatremia from antineoplaston therapy.

Bad blood draws don’t put kids in comas, Stan, but antineoplastons can, at least according to your informed consent form.

The FDA put an end to the apparently endless, fruitless, and unpublishable antineoplaston trials after Josia died. The FDA should have put the smack down years ago, however. We have documented apparent persistent anomalies in the stories of Burzynski’s patients, most horrifyingly, a long string of patients who remarked that getting worse was getting better, most glaringly in the case of people who reported excitedly that their tumors were “breaking up on the inside.” The patients of other doctors would know that that was likely a sign of progression, that tumors that had outgrown their blood become necrotic and cystic in their centers. Yet time and time and time again over a period spanning decades we see patients celebrating and staying on treatment:

But none of this information was conveyed to the family of Josia, not even–and this is stunning– the fact that Josia’s death had resulted in the end of the ANP trials. According to Szabo:

No one told Josia’s parents about any of this.

Not Burzynski. Not the FDA.

[Josiah’s parents] had no idea that their son’s death prompted an investigation by the FDA, until they were contacted by USA TODAY.

The [family] had long believed that Burzynski could have cured their son if only they had taken Josia to see him first, before giving him radiation and chemotherapy. They had even hoped to launch a non-profit, A Life for Josia Foundation, to help other children with cancer gain access to Burzynski’s treatment.

This is inexcusable behavior both from the FDA and the Clinic, and especially when the family is still raising money to put more kids on the treatment Burzynski sold to them.

Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and so this never happens again.

Burzynski Patient Sharie M’s Story

In October 2009, medical administrative secretary Sharie M., a wife and mother of four, was diagnosed with glioblastoma multiforme, a devastating brain cancer with a very high mortality rate. Initially, Sharie underwent conventional treatment, including three surgeries to reduce the size of the tumor (debulking) in the months immediately following the diagnosis. This kept the tumor at bay. In July of 2010, however, Sharie’s tumor was returning.

It seems that at this time, they started looking into the Burzynski Clinic and because the treatment is so expensive, they started raising money through the local paper:

“Dr. Burzynski has developed a series of peptides that attach to a sodium molecule and they reconfigure the DNA of cancer cells so that it allows the cancer cells to live a normal life and die, as opposed to living and spreading,” said Mike [M].

“They’ve got a track record of 74 percent of brain tumor success,” he added. “That means it’s either eliminated or stopped the growth for years.”

Mike [M] said the results Dr. Burzynski has achieved are encouraging.

“The statistics from this clinic where we’re at, many times, are three and four times better than the statistics you get from normal oncology,” he said. “But statistics are statistics and that’s why it’s a clinical trial. The proof is in the pudding, they say.”

74% brain tumor success? I want to know where they got that number. It’s inflated above even the ludicrous number that Amelia S.’s story received. In an interview with their local newspaper, Amelia’s mother said that the number they were given was a “complete lie“:

The parents of Pride of Reading Child of Courage winner, four-year-old Amelia [S] who died in January, say they were told she had a 54 per cent chance of survival with the clinical trial in Houston, Texas.

However mum Chantal [S], 36, believes the actual figure was just one per cent.

A BBC Panorama investigation shown on Monday questioned whether the Burzynski Clinic was “selling hope” to families.

In it, Mrs [S] said: “I think that’s wrong [54 per cent figure]. I think that’s a complete lie. I think one per cent is a more accurate figure.”

It sounds as if Sharie is on one of the antineoplaston trials:

Sharie […] began the treatment over Labor Day weekend. And while it allows her to be at home, it requires her to be on an IV-drip 24 hours a day, seven days a week, as well as thrice-weekly blood drawings to monitor vitals — all for eight to 12 months.

Mike [her husband] said it’s “livable” and that it seems to be working.

“Since the treatment started”, he said, “MRIs showed reduction in tumor size, which is not anticipated by current standard treatment.”

While I am delighted that it sounds at this point Sharie is doing well, I wish I could see those MRIs. How big is the reduction? Is she on steroids? Is the center “breaking up,” a sign of progression–a likely indicator that a tumor has outgrown its blood supply–that has been consistently been reported by the Burzynski patients we’ve looked at as signs of improvement? This is just a reminder that we can’t take patient reports–especially the ones coming from Burzynski’s patients–as reliable evidence of efficacy. Sadly, such patient reports are the sandy foundation of Burzynski’s entire practice.

They have already been to Houston at this point. Sharie would have gone through the multi-week training course at the clinic in Houston because Burzynski made patients fend for themselves. During this time the family is separated, spending the little time they have together apart.  Worse, their insurance is only of limited help:

“They typically will cover medical expenses, traditional blood testing, MRIs — those kinds of things. But the treatment won’t be covered,” Mike [M] said. “The clinical trials may cover the cost of the medication, but the pump, the office calls, the staffing, the supplies — those things are at our expense. So it should be somewhere in the $7,000- to $8,000-a-month range, with a $20,000 initial payment to get started.”

A legitimate researcher would not demand payment up front at all. This family is putting their mother’s life on the line for what will, if successful, make Burzynski a unfathomably rich man. They should not be paying a nickel to be his lab rats. Of course, hundreds of patients have been in his over 60 trials trials, and because every single one of those patients expected their doctor to publish his results, I consider every one of them personally betrayed by Burzynski, as their suffering and generosity has led to exactly zero completed, published trials.

In anticipation of the heavy expenses, the family starts raising money for Burzynski. They sponsor a pancake breakfast at the beginning of November 2010. According to a local television report, Sharie was too sick to attend the event. Nonetheless, some 1500 people showed up to support her. The Burzynski Clinic does not only capitalize on the vulnerable, but exploits the generosity of entire communities. The family’s expenses to date were met at this time.

In September of 2011, her son reports that she is “doing better.” I have no information about what happened to her in the intervening time. I do know, however, that the family opened their farm to local schoolchildren to teach them about agricultural science, an ongoing project that the family continues in honor of Sharie.

Sharie died on Jan 1, 2012. Her passing was commemorated by 600 friends a few days later at St. Boniface’s Catholic Church, where her life was celebrated.

The trial Sharie participated in, the one she and her community paid to participate in, was never published. Indeed, no more patients are being accepted into the trials as of last year, following an investigation into a child’s death. That was followed by a series of devastating findings about the Institutional Review Board (charged with independently reviewing and overseeing trials) by FDA inspectors, which peeled back any pretense of genuine research. Among the findings:

  • “The IRB [Institutional Review Board] used an expedited review procedure for research which did not appear in an FDA list of categories eligible for expedited review, and which had not previously been approved by the IRB. Specifically, your IRB routinely provided expedited approvals for new subjects to enroll under Single Patient Protocols.” [2 adults and 3 pediatric patients are mentioned]
  • “The IRB approved the conduct of research, but did not determine that the risks to subjects were reasonable in relation to the anticipated benefits (if any) to subjects, and to the importance of the knowledge that might be expected to result. Specifically, your IRB gave Expedited Approval for several Single Patient Protocols (SPP) without all the information necessary to determine that the risk to subjects are minimized.” [4 examples follow]
  • “The IRB did not determine at the time of initial review that a study was in compliance with 21 CFR Part 50 Subpart D, ‘Additional Safeguards for Children in Clinical Investigations.’ Specifically, an IRB that reviews and approves research involving children is required to make a finding that the study is in compliance with 21 CFR Part 50 Subpart D, ‘Additional Safeguards for Children in Clinical Investigations.’ Your IRB approved research involving children without documentation of the IRBs finding that the clinical investigation satisfied the criteria under Subpart D.” [3 examples follow and there is a note that this is a repeat observation that had been found in an Oct 2010 Inspection.]
  • “The IRB did not follow its written procedure for conducting its initial review of research. Specifically, the IRB is required to follow its written procedures for conducting initial and continuing review. Your IRB did not follow your written procedures for conducting initial and continuing review because these subjects received IRB approval via an expedited review procedure not described in your Standard Operating Procedures. If your IRB would have followed your own SOP for initial and continuing review, the following subjects would have received review and approval from the full board rather than an expedited review.” [2 adults and 3 pediatric patients are listed.]
  • “The IRB has no written procedures for ensuring prompt reporting to the IRB, appropriate institutional officials, and the FDA of any unanticipated problems involving risks to human subjects or others. Specifically, your current SOP-2012 v2-draft doc does not describe the requirements on Investigators on how unanticipated problems are reported to the IRB, Institutional Official, and the FDA, such as time intervals and the mode of reporting, or otherwise address how the prompt reporting of such instances will be ensured.”
  • “The IRB has no written procedures [in the SOP-2012 v2-draft doc] for ensuring prompt reporting to the IRB, appropriate institutional officials, and the FDA of any instance of serious or continuing noncompliance with theses [sic] regulations or the requirements or determinations of the IRB.”
  • “A list of IRB members has not been prepared and maintained, identifying members by name, earned degrees, representative capacity, and any employment or other relationship between each member and the institution.” (BurzynskiForm483Feb2013)

For a complete list of the massive number of violations in the last decade at the Burzynski Clinc, click here (warning, enormous pdf.)

For reliable information about clinical trials, visit to Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.

Burzynski Patient Ryszard C.’s Story

Ryszard C. was a world-renowned actor known for experimental theater.

Here he is in an interview describing his approach to the body and the exercises that he thought were vital to the success of an actor:

You can see perhaps what led to his early death from lung cancer in the opening frames of that interview.

In 1962, Ryszard joined the newly-founded Laboratory Theater in Poland, where experimental theater was being developed. According to the wikipedia page of the Theater’s founder, Jerzy Grotowski:

In 1965 Grotowski moved his company to Wrocław relabeling them a “Teatr Laboratorium”, in part to avoid the heavy censorship to which professional ‘theatres’ were subject in Poland at that time. Work had already begun on one of their most famous productions, “The Constant Prince”. Debuting in 1967, this production is thought by many to be one of the greatest theatrical works of the 20th century. Ryszard [C.]’s performance in the title role is considered the apogee of Grotowski’s approach to acting. In one of his final essays, Grotowski detailed how he worked individually with Ryszard for more than a year to develop the details of the actor’s physical score before combining this central element of the performance with the work of other actors and the context of torture and martyrdom intrinsic to the play.

After they stopped working with the Theater, the pair continued to work together. In a tribute to his partner in 1990, Grotowski discussed Ryszard’s dedication to the craft:

“We can say that I demanded from him everything, a courage in a certain way inhuman, but I never asked him to produce an effect. He needed five months more? Okay. Ten months more? Okay. Fifteen months more? Okay. We just worked slowly. And after this symbiosis, he had a kind of total security in the work, he had no fear, and we saw that everything was possible because there was no fear.”

According to his obituary in the New York Times:

Theater critics cited Mr. [C] in 1969 as Off Broadway’s most outstanding creator and the actor with the greatest promise.

For the last four years, Mr. [C] taught acting to advanced students at the Tisch School of the Arts at New York University.

In the 1980s, according to his biographer:

“There is no point in hiding it: during this period, [Ryszard] was drinking even more than usual. Periodically he had to dry out. He smoked several packets of cigarettes a day. Yet [his students] still say he taught them about courage. He was not so much an actor with great talent as an actor with great courage.”

He summarized his lessons to acting students:

How to be true in performance, that above all. I struggle to plant in  them the principle that Grotowksi handed on to me: we act so much in  our daily lives that to make theatre what we need to do is to stop acting.  Another very important thing to understand is that an actor must concentrate on his own body. The actor’s instrument is not [simply] his  voice or his diction, it’s his whole body. Theatre can be a combination of all the arts-music, dance, painting, writing, but above all it is moving visual art. (in Torzecka 1992:261)

Ryszard’s career is retold in detail at

Some said that following his parting of ways with Grotowski, the stress of having lost his professional partner manifested itself as cancer; more likely the hard drinking and smoking paved the way for the disease.

On June 5th, 1990, according to his Burzynski, Ryszard entered the Burzynski Clinic with lung cancer. He died 10 days later in Houston. Ryszard C. was only 53. One of the most important actors of the 20th century, in the estimation of his peers, died away from his home in the care of a quack.

For reliable information about clinical trials, visit Please consider donating to St. Jude Children’s Research Hospital, the children’s hospital that once helped a young friend of mine who is no longer with us. If you want to know about the character that Ryszard trusted in his last days, see the story of Amelia S.

Burzynski Patient Kuly R.’s Story

I’m sad that I only heard of Kuly R. after he had passed away. Kuly and his two brothers formed the band RDB (Rhythm Dohl Bass), a popular British-Asian urban bhangra group I have been listening to ever since I first came across Kuly’s name in a post over at A Healthy Dose of Skepticism.  If you listen to a clip of their music, you’ll recognize the hip-hop influence instantly, but you’ll also hear a Punjabi influence, which was new to my ears.

The brothers made their name as performers and producers, and their initial success, brought about by a fusion of eastern and western music, has brought them opportunities to participate in high-profile collaborations with Snoop Dogg (“Singh is Kinng”) and Ludacris (“Shera Di Kaum”) and the top names in Bollywood music. (About halfway through “Singh is Kinng” you get the sense that these styles work really well together, and it is delightful to hear Snoop rapping about the babes in Mumbai.) They founded their own label, Three Records. The remaining brothers, Surj and Manj, have pressed on. They were a featured act in March 2013 at the first India MTV Video Music Awards, where they appeared with T-Pain.

The family was pretty tight lipped about Kuly’s illness; it does not seem that they were public about it, and there are practically no published details. As such, there is not much of a trail to trace here. Patients who end up at the Burzynski Clinic, however, have very similar, at times nearly identical experiences. Also, we have looked at enough cases on this site that minor details can actually be quite revealing. It should be remembered, however, that what follows is really a composite of other patients’ experiences. Kuly’s case is really more of an occasion to share what we know of these patients rather than a straightforward account of his experiences. We try to indicate where we stray from what we know about Kuly so as to avoid confusion; we invite correction should we get any particulars wrong.

In April 2011 Kuly, the oldest brother, was diagnosed with a brain tumor. We know that he had radiation and chemotherapy. This treatment seems to have stayed the progression of the tumor for the rest of the year. In October 2011, the brothers were planning their India tour, and an BBC interview with them suggests that they are on the verge of superstardom. Kuly is interviewed, and he looks pretty good. The South Asian Times reported his death on May 25, saying, “He was receiving treatment at a specialised clinic in Houston, US, at the time of his death.”

Kuly might have gone to MD Anderson in Houston, a world renown cancer research hospital. But it really looks like he was at the Burzynski Clinic. We know this because of a message from Geeta, Kuly’s wife, which appeared on the Team Hannah website (Hannah was in Houston at the Burzynski Clinic at the time of this message):


The treatment that a brain tumor patient would have received at the Burzynski Clinic at this time is likely straightforward enough that you can back fill some of the story. My best guess is that if they left Houston on the 22nd, they probably arrived at the Clinic around the first week in January 2012. If he was in one of Burzynski’s “trials,” he and his caregivers would have spent their time in Houston learning to administer the medication.

Kuly was likely being treated with the metabolic byproducts of sodium phenylbutyrate (PB), an unproven form of chemotherapy that Burzynski has been treating patients with for decades. PB is an orphan drug used to treat urea cycle disorders and carries an enormous sodium load. (The amount of water that patients have to drink is unreal, and increased blood pressure, as you might imagine, is dangerous to someone with a brain tumor.) Burzynski originally found these substances in human urine, but he has since industrialized their synthetic production. He hypothesized that the lack of these substances in cancer patients’ urine meant that “replacing” them might curer cancer. He labeled them “antineoplastons” (ANP), literally “anti-cancers,” and began treating patients, having never gone through the appropriate vetting process.  Nobody in the medical literature has ever identified “antineoplaston deficiency” as a cause of cancer. Decades later, there is still no compelling evidence that antineoplaston therapy is any more efficacious than giving a tumor a stern talking to.

Because of a major lapse in the FDA’s judgment, Burzynski was allowed to administer this chemotherapy as part of a clinical trial. So what did he do? Open up over 60 clinical trials.  And don’t take my word for it. Burzynski’s lawyer, Richard Jaffee, in his memoir, said that in order to “make sure Burzynski could treat new patients”,

[…] Burzynski personally put together seventy-two protocols to treat every type of cancer the clinic had treated and everything Burzynski wanted to treat in the future.

In all the years he has been pumping this failed therapy into patients, he has never published a finished study. If you follow the link above, you will see that all of his trials are abandoned or of unknown status. His research career is a joke. Another red flag is the fact that Burzynski charges his patients to participate in clinical trials, up to $30,000 to start and maybe $10,000/month thereafter, often bleeding the dying dry. This is not a business model that suggests that ANP is likely to ever go to market as a cancer cure.

Sadly, at about the same time that Kuly died, a pediatric patient died, and the possibility that the ANP killed her was strong enough that the FDA put a temporary hold on all new antineoplaston patients. No new patients are getting antineoplastons at this time. An intense investigation of the clinic was carried out by the FDA at the beginning of this year, and I received the observation notes of one part of the inspection through a Freedom of Information Act request. What inspectors observed, in my opinion, was not what one expects of a reputable research institution. We have copies of these inspection notes on this website. If any lab at a government-funded research university had had this type of inspection (and we are still waiting for the final report), all government funds to the entire university would be cut off immediately. Sadly, a child had to die before the FDA took action.

Not two months before Kuly began treatment with Burzynski, a person who had been hired by the clinic to provide “web optimization” services, Mark Stephens, started issuing fake legal warnings to people who openly questioned Burzynski. Among these was a high school student in the UK, who was sent a picture of his house by the Clinic’s tough, the clear message being, “We know where you live.” These threats against critics were covered extensively in the international press. What was not reported at the time was that the same worker was making nearly identical pseudolegal threats to Wayne Merritt, a former pancreatic cancer patient of Burzynski, and his wife Lisa Marie, herself a breast cancer survivor. Stephens called these cancer patients at home to threaten them (how a web optimization person got their names given the patient privacy laws in this country is certainly curious). The Merritt’s story is also shared on this website.

In February 2012, the younger brothers were interviewed by Rolling Stone, when their brother must have been obviously ill, and they did not mention the treatment or give any hint about what they were going through. At this time, if he were still on treatment (and because he died in Houston, I’m going to presume that he stuck with Burzynski all the way through), Kuly would be receiving nearly constant infusions of antineoplastons through a programmable pump that he would be carrying with him. He probably would have felt lethargy because the sheer quantity of water that he’d need to imbibe (I’ve seen up to 12 liters a day) would have kept him up at night, running back and forth to the lavatory. He probably would have been on a fairly heavy dose of steroids, which might have ameliorated some of the inflammation associated with the tumor and temporarily relieved some symptoms.

There is a chance that Burzynski had Kuly on what he calls, “personalized gene-targeted therapy,” which uses a commercial genetic test as a type of “medical palm reading.” This is Burzynski’s only medical option right now, and we suspect that the majority of his patients end up on this (even if they have been attracted by antineoplastons). Untested combinations of off label chemotherapies are sold to the patients on the basis of this gene test. But this therapy, at least until the FDA shutdown of the ANP trials, was reserved for patients who did not have brain cancer (though when the ANP fails a patient, which is a lot, the Clinic seems to try to get the patients to sign up for this similarly expensive course of treatment).

The experiences of patients on antineoplastons often follow a similar course: the tumor appears to stop growing on the MRIs, which are administered and sent to the Clinic for evaluation every 6 weeks or so. While patients always seem elated about the progress that they are making early on in the treatment, in fact solid tumors tend to grow very quickly at first, but the time that they take to double in size increases, which leads to a Gompertzian growth curve, an elongated s-shape with rapid growth in the middle.

At the same time that these tumors temporarily level off, patients often report excitedly that their tumor is “breaking up on the inside” or that a fluid filled cystic region has opened up in the middle. These are almost universally embraced as evidence that the tumor is dying and that ANP is working. Unfortunately, this is far, far more likely to be because the tumor has actually outgrown its blood supply and is dying in the middle. Every competent oncologist knows this is probably a dire development, yet Burzynski’s patients seem to believe that this is good news. We have found the same story repeated over at least 20 years:

This is part of a larger pattern which is every bit as disturbing, patients reporting that worsening symptoms are signs of getting better, which may be comforting but is self-defeating and always ends badly. The claim seems to be that the tumor is swelling because the drugs are killing it, or that the immune system can’t keep up with all the remains of the tumor, or something. (Around the time this was happening, such swelling was not listed on the ANP consent form as a possible serious side effect. See Even strong side effects during initial doses have led to whoops of joy from the nurses there, as was the case in John D.’s story. We sincerely hope that Kuly’s family did not have the same experience that so many other people have had; if they did, we hope they realize that they weren’t the only ones. A biography of Kuly’s wife (pdf) notes that there was a time where “Kuly’s health appeared to be improving.” I’ve heard that so many times, but why does this “improvement” never seem to lead to an extension of life?

Kuly died in May 2012, according to the sad RDB press release:

The international music fraternity has faced a saddening loss with Kuly of music band RDB, passing away on 22nd May 2012 in Houston, Texas, USA. The popular music group member sadly lost his battle with cancer at the young age of 35 years old.

His wife was by his side when he died. What is most curious to me is that Kuly died in Houston. It seems to me that most of the international patients tend to die in their home country. Once the caregivers are trained, they continue treatment at home, monitored by local physicians. Furthermore, the Clinic has no beds. Burzynski besides not being a board certified oncologist also has no hospital privileges. So, I am surprised to see that after they returned home in January (presumably to Bedford, UK), that they were back in the US in May, and apparently back at the Clinic. One possible scenario is that after ANP had irrefutably failed, even from the perspective of the family, is that, like Adam M., he was offered the other, “gene-targeted” treatment, which necessitates returning to Houston to begin treatment again:

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.  

The other possibility is that the family traveled back and forth more frequently between the US and the UK than the typical patient. (In the BBC interview, the brothers note that home is whatever plane they are on.) They seem not to have had to raise money like so many of Burzynski’s other patients in the UK. It occurs to me that if this scenario is true, the timeline may be even less certain, as they may have met Hannah during one of any number of trips. So, keep in mind that while the case of Kuly is speculative, the general story that I’ve told holds true for so many of the 550 patients we’ve collected on this website.

Kuly has not been forgotten. Soon after his death rocked Bollywood, is colleagues recorded tributes. He is on the Brampton Walk of Fame. His brothers have said that they have retired his position at the record label and that nobody will “sit in his throne.” His wife has made brain tumor research her preferred charity, and she has raised a lot of money, most notably through the Street Spice event in March of this year. On an old fundraising page (the charity it linked to has since merged with another charity), Geeta notes:

As well as his passion for music, the concept of ‘Seva’ (selfless giving) and education were very important parts of his life. A humanitarian, Kuly always wanted to give back to society and encouraged others to do the same. Along with a zest for life and charity, he also always wanted to continue learning and expanding his horizons.

For reliable information about clinical trials, visit Please consider donating to St. Jude Children’s Research Hospital, the children’s hospital that once helped a young friend of mine who is no longer with us.

Burzynski Patient Sen. Ed G.’s Story

In the last week of the 1996 Georgia state senate race, incumbent from Macon Ed G. tried to speak on the phone, but couldn’t. Also, printed letters looked scrambled. While he initially dismissed it as stress related to his campaign, a friend who was a physician sent him to the doctor the next day. An MRI on Nov. 14th revealed not the small stroke they expected, but a brain tumor lodged in the front of his brain.

The decisions that he made in the days following the diagnosis reflect his approach to his treatment:

I went to three of the best neurosurgeons in Atlanta and they seemed to contradict themselves in what the best options for treatment were for me. The last doctor was one of the best neurosurgeons at Emory University in Atlanta. This doctor suggested chemotherapy and radiation and said this might control the growth of the tumor for a while but eventually it would come back and be a lot worse and at that time we would have to see what options were available. Obviously this was not a very good option in my opinion. I decided against chemotherapy and radiation because of the toxic side affects and the increase chance of other cancers they themselves caused. A person that takes chemo and radiation is 25 times more likely to have another form of cancer than the average person.

I talked it over with my wife and we decided to look at an alternative type of treatment. I looked and studied the options for several weeks and decided that Dr. Burzynski had the cure for brain tumors.

This, of course, is the Nirvana fallacy. Chemotherapy and radiation, while not perfect and while they carry real consequences, might actually have been the best course of action. And you reject the best advice of the best neurosurgeons at your own peril.

In mid-December, he went to the Burzynski Clinic, and he reports:

three weeks later 50% of the tumor was gone. After five months the cancerous part of the tumor was completely gone. I have to remain on the IV part of the treatment until the end of this year and then will take the antineoplastons for several years by capsule.

Of course, he was sold on the treatment entirely at this point. Adding to his commitment was a $14,000 start-up fee and $5,000 for the first treatment, according to the Macon Telegraph,  which broke the news of the state senator’s decision to undergo antineoplaston treatment on January 10th, 1997. This announcement seems not to have met any skepticism whatsoever, which is mildly surprising given that at the time Burzynski’s extensive legal troubles were at their height. The Senator’s state-run insurance was not going to cover the treatment, and so a number of public officials banded together to raise money for their unfortunate colleague’s doctor. Lt. Gov. Pierre Howard challenged people to raise funds for the treatment, and by the time the article ran, the church accepting the donations had received $35,000. The monthly treatment would cost an additional $9,000 a month, the church official interviewed reported: “He’s not sure how many months he’ll have to be in treatment. That will be decided as he goes along.”

The same representative reported that the Senator had had a brain scan the previous week:

“It showed that the tumor had not increased in size at all, so the treatment has stopped the growth,” Pardue said.  “He said to us it was moderately growing.”

So (besides it growing and not growing at the same time), even if the tumor had stopped growing, it would not mean that the treatment was having any effect, because of a feature of solid tumors known as Gompertzian growth or “day 2 of your introductory oncology class.” We also hear that the Senator is flying out to Texas every month for treatment. This is interesting because at this time it seems that the Clinic is obeying the rules that federal prosecutors were trying to enforce. The Senator will participate in the upcoming 40-day legislative session but he will be carrying a “fanny pack” that has his infusion pump.

Four days later, the Telegraph reports that the 44-year old Senator has returned from his most recent trip to Texas, and that his sons help him prepare his bags of ANP. He reports:

“I can’t sleep at night sometimes because of the medicine. Sometimes I have to take naps.”

What this public official can’t say in polite company is that the quality of sleep of patients on antineoplaston is heavily degraded because the high sodium load means that the patient has an unquenchable thirst, and he is constantly at the toilet. At the same time, he reports:

“My condition is improving, and the cancer is reducing.”

As the Macon Telegraph reported the next day, the Senator thanked his colleagues in the Senate for their support. Due to their efforts, $45,000 had been raised for the expected $100,000 treatment, projected to last for a year. The paper reported that that he told his colleagues “that his tumor, located in the right front area of his brain has already been reduced by percent. He said he will return to Texas on Feb. 20 for another treatment and is hoping that doctors will find his tumor gone.”

We get an update from the Macon Telegraph on the 12th of March about the Senator’s progress:

“Ninety-two percent of the worse part of the tumor is gone,” he said. “I think God is going to heal this thing in his timing. […] Burzynski is predicting that the ‘worst part of the tumor’ will be gone in a month, [the Senator] said. The treatment will run another eight months[.]

It’s a strange qualification. 92% of the worst part? How does that relate to tumor size? Nonetheless, the Senator is now fully behind Burzynski, as you might expect. The same day, the paper would report, he presented a bill to the Senate that would allow patients to take “experimental treatment” without facing legal repercussions, though the article mentions that doctors could already prescribe experimental treatments to patients. The Senator says it will protect doctors, but the Medical Association of Georgia opposes it.

“This is misguided public policy,” said David Cook, director of governmental relations for the Medical Association of Georgia. “In the bill, a doctor could tap dance around your bed and that could be the cure for cancer.”

At least the tap dancing doctor could be entertaining and someone would be getting some exercise. ANP doesn’t show even those benefits. The bill passed the Senate 74-2. It passed in the House 146-19, the Telegraph reported on the 26th of March. It was rushed through by the urgency of the Senator’s situation.

By June 26th, Burzynski has already exacted all of the money raised by the Senator, and another fundraiser is in the works, this time to raise $100,000. One of the guests at the fundraiser is future Georgia Gov. Sonny Perdue. Half way through the article, the Senator reports something horrible:

[The Senator] said the treatments have shrunk the tumor to the point that brain scans now pick up a ‘2-inch circle of fluid or something. It’s not an additional mass,’ he said. ‘It’s actually eaten through the brain.

And there it is. Another patient reporting that a cyst in a tumor is a sign of improvement, not a sign that the tumor has outgrown its blood supply and that the ANP has not arrested its growth one jot. Patients have repeated this horrible, unconscionable, misleading prognosis for what is ischemic necrosis for decades.

Why? I bet it has something to do with the 100,000 that the future governor is raising.

At this time, it seems that the Senator will be on treatment for up to two years, and that he has another 8 months at least hooked up to the IV pump. He here confirms that he is experiencing the most noticeable side effect of treatment: “The only thing that I have is a tremendous amount of fluid going going through my body. It just wears you out.”

The fundraiser nets only $25,000 for the Senator. “It just means we’ll have to have another one,” he says in the July 8th edition of the Telegraph. In November, the poor guy is asking for another $25,000. The paper reports that:

“[…] recent tests show his brain tumor is completely gone, but he must continue is treatment for several more months ‘just to make sure.’ He now needs $25,000 to pay for the intravenous and oral medications.”

Why do I have a hard time believing this?

In September, the Senator is one of the delegation who travel to Washington to appear before Congress on behalf of the man who is bleeding him, his family, his church, and his colleagues dry. In his testimony in front of the Government Oversight and Reform Committee, the Senator says:

After learning of alternative treatments and the problems they were having with the FDA, this past January during the Georgia General Assembly I introduced and was successful in getting passed an Access to Medical Treatment Act. The citizens of Georgia believe that patients ought to have the access to the treatment of their choice when their lives are threatened. Because I am a State Senator my name has been in many stories nationwide associated with Dr. Burzynski. This has led many potential patients to call and ask me about the treatment and for help getting into a protocol.

The most disheartening thing about the whole ordeal with the FDA is that while the FDA is allowing the antineoplastons to go through clinical trials to test their efficacy, they are making patients take treatments they do not want to take before they can become a part of a clinical trial. One reason we choose Dr. Burzynski is that his medicine is nontoxic. For the FDA to make a patient take radiation before they can become part of a clinical trial for antineoplastons is unreal.

The FDA will not allow patients that don’t fit the protocols to take the antineoplastons without a fight. One gentleman from Texas had high blood pressure and because the medicine is a sodium based medicine taking the normal dose the way the protocol requires would have caused him more problems. This gentleman needed a special treatment unique to him. It took six weeks of fighting with the FDA and getting his Congressman involved before he could take the treatment.

When the FDA was created it was with good intent. The citizens of this country needed help with determining whether drugs were safe or not. But if I allowed my two boys to grow up without supervision they would become something different than they are now. They would be arrogant, belligerent, undisciplined and uncaring much like the FDA has become. I believe it is time that Congress steps in and brings some discipline to this department and restore some integrity.

Of course, a protocol is called a protocol for a reason, so that you can get reliable data by comparing like cases. A patient who has high blood pressure (and presumably a brain tumor) should probably not be on one of the sodium bombs that Burzynski’s Clinic administers.

On 20 August of the following year, the Senator decides to not run for another term in office, as reported in the Atlanta Journal Constitution:

State Sen. Ed [G], Republican from Macon, has changed his mind about running for re-election. [Senator G] was diagnosed with a brain tumor two years ago, and has withdrawn from the race for health reasons.

[Senator G] had no opposition in last month’s primary. The state Republican Party’s executive committee has nominated Susan Cable, a Macon community activist and former Bibb County school board member, to run in his place for the 27th District seat. The Democratic nominee in the race is Floyd Buford, a Macon attorney.

[Senator G] said he plans to serve out the rest of his term. However, he said the rigors of campaigning, combined with the medication he’s taking will prevent him from seeking re-election. “I probably wouldn’t be able to do it — not as well as I should,” he told the Macon Telegraph.

Since his diagnosis, [Senator G] has been traveling to Texas for alternative therapy that he said has resulted in significant improvement in his condition.

Yet he’s too sick to continue. What happened to the “disappeared tumor”?

The Senator died on Nov 8, 1999 according to the AP, “of brain cancer.” He was 46-years old. If the Senator was in a clinical trial, it remains unpublished to this day.

For reliable information about clinical trials, visit to Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.


Burzynski Patient Cody G.’s Story

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)

Monstrous behavior.

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].

Cody died at home on May 29th.

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.

Burzynski Patient Christy M.’s Story

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:

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 Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.

Burzynski Patient Tracy H.’s Story

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 Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.