Category: Uncategorized

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

Burzynski Patient Pam D.’s Story

This is a very, very brief story, but it shows how physicians refusing to participate in the Burzynski Clinic’s treatments may well have saved a patient’s life.

The story of Pam D. begins in May 2011, when she was diagnosed with throat cancer. By the time it had been detected, it had spread from a tonsil to a lymph node. By the time her Caring Bridge journal begins (login required), she has been to Houston and has returned without treatment:

Most of you know that I went to Texas to pursue a better, healthier treatment plan, then back home to find a doctor to support me and work with the doctors in Texas. Unfortunately as hard as I tried I was not able to find a doctor that would work with us, and now I feel I need to get started with something. I start traditional treatment sometimes this month.

She was treated while in Houston, probably with his chemo cocktail, er, “gene-targeted” therapy. This is a mixture of chemotherapies that have not been tested together based on the genetic equivalent of palm reading. Take the case of the Merritts, whose oncologist told them that the cocktail that Wayne had been prescribed might make him bleed out from the liver. So, real chemotherapy posing as transparently incompetent gene therapy. (Every so often you see the right conventional treatment in with the mix, I should add.) With this in mind, Pam wrote on Oct 12th:

Saw the radiology/oncologist yesterday after treatment for an exam. She was feeling around my neck and asked me if I felt the mass anymore. She said it was a marble size and now she can’t find it :) it seems to be GONE!!! I told her and before it was a marble size it was a walnut size! I had to throw that in because it was the medications I was taking from Dr. Bruzynski that made the tumor shrink from walnut to marble size, however I had not seen her when it was larger so I am not sure she was aware of that. Nevertheless it seems to gone GONE so that’s great news.

Her last treatment was on Nov 16, 2011. By April she was found to have no visible signs of cancer (not the same thing as the result of the physical exam above–this was a PET scan). Her taste buds were sending her brain weird signals and her salivary glands were damaged, but she lived.

Doctors refusing to participate in Burzynski’s kooky chemistry experiments is the best thing that ever happened to Pam D., and she may never know it. We thank her doctors for refusing to participate in the dubious treatments.

A few important things to note:

1) Pursuing alternative medicine instead of medicine wastes time that could be spent getting proven treatments. This gives cancer a head start and leaves the patient playing catch-up. In this case, Pam does not begin a real sustained course of treatment (chemotherapy and radiation) until late September/early October, at least 3 months.

2) Doctors standing their ground and seeing to it that the people in their charge get the standard of care saves lives.

We wish Pam D. and her family the best.

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

Burzynski Patient Adam M.’s Story

[Update: Adam M. died on Sunday, 7 July 2013.]

This is an especially sad story. His wife tells the story about the first days, waiting outside while Adam was in the operating room. The surgery was successful and the doctor suggested it was “possibly a mid-grade [glioma].” In three days, Adam had sprung back:

That’s when we started researching like crazy. Regardless of what the result was, we were going to go alternative. Adam definitely did not want chemo or radiation, and the more research we did, the more comfortable we felt with that decision.

If the tumor recurred, Adam’s prognosis was probably very bad. They made (generally healthy) lifestyle changes and stopped using cell phones, hoping to ward off a return of the cancer. They also got in contact with the Burzynski Clinic, who are completely incapable of making any promises. Apparently, by the end of January, they were planning to go to Houston.

Their first consultation with the Burzynski Clinic was on the 6th of February of 2012. The parents were not available and missed 2 of their children’s birthdays during that trip. They rented a Chevy HHR, left the kids with the grandparents, who were in from the UK, and drove down to the clinic. And then they were hit with the bad news, and an interesting look at what goes on inside the Burzynski Clinic (emphasis added):

Dr. Szymkowski met with us to discuss Adam’s medical history and confirm the details of his brain cancer. She also briefed us on the two possible approaches that Dr. Burzynski would take in Adam’s case. The first case scenario is his patented antineoplaston therapy. To qualify for that therapy, you have to apply to the FDA for special permission, and show that the cancer is “persistent” after using traditional therapy. Well, we assumed that this approach would not be appropriate, simply because the tumor has been removed and hasn’t had time to become what could be considered “persistent”. We then got to meet the man himself! The meeting lasted less than 10 minutes. He briefly explained that he would most likely be using a “gene targeted” approach to treat Adam’s cancer. […] One of the medications is sodium phenylbutyrate, which is one of Dr. Burzynkski’s signature medications. We were definitely excited about that one, because obviously we can only get that here. After being shuffled around a bit more, we were then sent to the financial coordinator. She showed us the fee chart that we had already received in our information packet. So, no surprises there. But… then she starts lis[t]ing the medications that Dr. Burzynski has prescribed for Adam, which are not included in the treatment costs. Sprycel… $8,314.80. Votrient… $3,098.40. (emphasis added)

The family found that the cost would be in the area of $25,000 a month. And it’s simply not true that the only place to get sodium phenylbutyrate is the Burzynski Clinic. It’s an orphaned drug usually used to treat urea cycle disorders. Just about the only place on earth where they’ll prescribe it for cancer is the Burzynski Clinic.

Clearly these patients were being told that Burzynski would be treating these patients. Legally, this is very interesting since the entire premise of the TMB withdrawing their complaint against Burzynski in October 2012 was that Burzynski was not directing treatment.

Bunk. And this is going on even as his lawyers are arguing in court that he is not responsible for the “decisions” that his doctors make. The family then became aware of the serious side effects of these chemo cocktails that Burzynski was proposing, contrary to the hippy-dippy natural side-effectless hype that his supporters parrot:

At home we started talking. I did some online research into the drugs, and really didn’t like what I was reading. Side effects like “severe or like-threatening liver damage”, and “may cause you to develop a hole in the wall of your stomach or intestine”. My favorite one was, “may cause abnormal passage in the body”. Abnormal passage? So, not only would we have to spend $25,000 a month for the drugs, but Adam might develop a whole host of other problems as a result.
The family had initially decided against any chemo treatment, but (surprise, surprise) when they announce this to the Clinic, the doctors tell them that they have found lesions on the MRI, which makes Adam a potential candidate for one of the 60 ANP trials that never seem to get finished or result in any meaningful publications.

The family is about to back away from the therapy and, and only after that threat to Burzynski’s bottom line does the Clinic bother to inform them that there are more lesions in Adam’s brain:

Dr. Sano was very nice, and said she would certainly respect our wishes. However, since they found lesions in Adam’s brain this morning, it looks like the cancer may have returned and therefore the drugs would really be necessary. I nearly dropped the phone. Lesions? Already??!! It just wasn’t possible. The doctor explained that due to the change in circumstance, she would need to meet with Dr. Burzynski and discuss what he wants to do next, and she asked us to go to the waiting room where she could talk to us face-to-face.

Boy, Texas Medical Board, it sure looks like he is directly managing patient care, doesn’t it? And that doctors working under him defer to his judgment instinctively, doesn’t it? I wonder whose signature is on those records? That would be very interesting to know.

And we were totally honest with [Dr. Sano]. We can’t afford the meds. We just can’t do it. She told us that it was now possible that Dr. Burzynski might want to put Adam in the clinical trial. Now he had a “persistant” tumor, and there was something measurable. If he was given permission by the FDA to receive the antineoplaston treatment, now there was material they could measure and watch it shrink. This is essential to be considered for the trial. […] (emphasis added)

Later that evening, they receive a phone call:

Dr. Burzynski is putting Adam forward for the trial. He is going to receive the antineoplaston therapy. The therapy we have read about from the beginning. The real reason we came here. She doesn’t know anything about the financials, which we’ll have to work out with the counselor tomorrow.

So, the Burzynski Clinic is doing a wallet biopsy, the only procedure that they are any good at. The M. family went ahead with ANP. They are desperately looking for supernatural signs that what they are doing is right, and they find them everywhere.

On the 15th of February, they received news that the FDA would abet another patient’s entry into a trial:

Adam’s approved!!!!! Tomorrow morning Adam has an appointment at a Houston clinic to have his catheter fitted, then Friday he gets hooked up to the antineoplastons. […] Also, we’ve been told that Adam’s sodium intake has to be meticulously watched, and his fluid intake and excretion carefully monitored. I’ve been told, “If you can’t wake him up in the morning, get him straight to the hospital.” Fluid can accumulate in the body or brain and cause complications. (emphasis added)

As always, even the ANP can have dramatic and potentially lethal side effects, no matter what you hear.
Healer in your Heart: Researching the treatment

And, WOW, when you look at the status of all those lesions that Burzynski’s group “found” on the MRI, it looks like their status/existence was not completely certain:

We also had an appointment with the radiologist which was a bit depressing as well. We were misinformed before. The current tumor was NOT there immediately post-surgery. The post-surgery MRI shows a clear cavity. But, 6 weeks later there was definitely a “suspicious” enhancement within the cavity. It’s no bigger than a pea, but it’s probably a recurring tumor. There’s a small chance it might be nothing, only time will tell. I don’t know why, but that news really got me down. (emphasis added)

Are you paying attention, Texas Medical Board? That needs to be clarified.

On Feb 25, the doctors at the Clinic show that they are having a hard time distinguishing between someone retaining water and being dehydrated:

Although Adam had drank 11 liters (yes that’s right) of water, he had excreted 12 liters. His weight had dropped by 2 pounds, so Dr. Barbara explained that he is probably dehydrated. She recommended that we only increase the dosage by 20ml on Saturday just to be on the safe side, but to keep an eye on his fluid intake and weight. So, Adam has been drinking and eating like a champ and polished off a massive dinner last night. He drank even MORE water this morning to make sure his weight was back up. He still came up a bit short on his fluid totals (intake was 12 liters, but output was 13 liters), but weighed in at a much healthier 155lbs. this morning. But, the substitute doctor wasn’t happy. She thinks that Adam is retaining water. What?? He excreted more than he took in. He can’t possibly be retaining water. What the heck is he retaining? His weight gain can be easily explained by the mountain of penne bolognaise I forced him to eat last night. But, she refused. No increase in dosage.

So who’s really in charge of the patients at the Burzynski Clinic?

The other good news is that Adam is at his target dose. Dr. Burzynski himself has been reviewing Adam’s case, and for mixed gliomas the dosage can be lowered and still be effective. Adam is NOT on any steriods and has not suffered any fatigue at all. This is nothing short of miraculous. Many patients have ended up in wheelchairs because of the debilitating fatigue. And everyone has to take Decadron to keep cranial pressure down. Adam hasn’t needed any. Everyone is really pleased with how well Adam is doing so far. And Dr. Burzynski has a prediction… he believes that Adam’s tumor will be gone within 2 months, and after 8 more months of maintainance treatment, it should never recur. I LOVE that prediction. (emphasis added)

Since I started exploring extraordinary claims, I have noticed that people are willing to pay almost anything for 1) hope and 2) flattery.

In March, after Adam and Vanessa have returned home, they received the results of their first MRI after treatment began:

We just received a call from Dr. Barbara. The radiologist still has to do a few more measurements, so he cannot say for sure if the tumor has shrunk. However, there is considerably “less enhancement” in the tumor. This means that there is less activity, and the tumor is showing up less dense on the MRI than before. That explains why it is so difficult to see in the image. All good news!!! Dr. Barbara said, “Geeve Aatum beeg hug frum mee and goa celebrate!”

I’m no doctor, but it just doesn’t sound like the tumor is shrinking. And this seems to be confirmed in the May 12th update, when it is revealed that the tumor has grown 20% in the last 8 weeks. (The progress of the disease, as is often the case w/ Burzynski, seems independent of the ANP dosage.):

The MRI showed that the tumor that had shrunk by 40% 8 weeks ago, has now increased in size by 20%. There is also another lesion that has remained unchanged. […] The tumor seems to be affected by the treatment, but apparently this dosage level just isn’t going to cut it. So, Dr. Barbara has decided to increase Adam up to the maximum dosage. To put it bluntly, this sucks. It sucks on so many levels.

Soon he is up to drinking 12 liters of water a day! By the end of May, the family’s finances have gotten so bad that Amanda starts talking about it on the website.

On June 11th, we get a report that looks like someone at the Burzynski Clinic nearly gets Adam killed (they never find out who it was…apparently they don’t put things like “calls to patients” in patient files at the Clinic or something) when they call saying that his blood work is bad, setting off a chain of events that leads to him nearly slipping into a coma.

On the 22nd of June, the MRI shows that Adam’s tumor is “stable,” which is a “success” at Burzynski’s Clinic, but it is a loose interpretation of “success” that no other researchers find acceptable. According to a site review of Burzynski’s clinic: “Moving from protocols to results, I am surprised by Dr. Burzynski’s statement that stable disease is a positive outcome. That runs contrary to established criteria for trial design. In the context of phase II trials, which are short-term studies, stable disease is not reported as a positive outcome.”

By August it seems that the tumor is growing again, and we get the sad news in one of the most raw moments I’ve seen since I’ve started this project:

It’s 5:00 in the morning, and I just can’t sleep. Adam and I have been talking, holding hands in the dark. The bedroom is actually dark for the first time in 6 months. And completely silent. The whooshing of the pump is gone, as is the pump’s bright display that used to cast a glow around the whole room. It’s over. We received a call yesterday that shocked both of us to the core. Adam’s lesions have grown since the last MRI 8 weeks ago, and there is now a third lesion. The treatment didn’t work. It’s worked for so many others. It is the one treatment that gave us any hope of Adam seeing the boys grow up. He probably won’t ever get to meet his grandchildren. He probably won’t see his boys get married or finish school. He may not ever get to hear Finlay say “Daddy”.

What is all the more galling, that after failing to help Adam in any meaningful way, the Clinic suggested that he come back and start a NEW course of treatment:

We don’t know what we are supposed to do next. We have discussed a few options, but they all look so awfully wrong. The Burzynski clinic is encouraging us to come back to Houston so he can start gene-targeted therapy. It just feels wrong. First of all, we need to come up with $30,000 to start the other treatment, not to mention all the expenses of going down there. It makes both of us nauseous just thinking of going back to that place and starting over. The monthly cost of the treatment is over $20,000. And it has a much lower rate of success than the antineoplastons.

They eventually moved on to another therapy. He died in July 2013.

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

Burzynski Patient Nolan L.’s Story

Nolan L. had just had his 9th birthday in November 2002 when he started having crippling headaches. As his mother remembered a year later:

I was concerned about Nolan’s behavior problems at school and was meeting frequently with his teacher, the principal and the vice principal.  We had no idea that a monster was lurking inside his head, ready to strike.

I attributed the crankiness, complaints of headaches, and other subtle symptoms he began displaying as emotional distress because of the turmoil within our family. But sometime in October I made an appointment with his pediatrician. And it was at that time that the first fateful MRI was scheduled.

I vividly remember the drive to Sacramento with Nolan’s dad, clutching the films containing that ominous looking huge white spot in the center of his brain.  Despite the dread I felt, I was still completely unprepared for the actual prognosis:

Brain Tumor.  Highly malignant.  No cure.  Death imminent.

Nolan was with my mother in the other room, thankfully.  I remember the wails coming from deep within my soul.  I remember thinking I was going to faint. I remember feeling as if I was being turned inside out.

My baby, my little boy, my son!!!

The prospects were, of course, grim:

Conventional medicines and treatments offered no cure. Nolan was subjected to six weeks of intense radiation treatments and a round of chemotherapy, which would only offer a slight increase in his life expectancy.

On November 25, Nolan began the first course of treatment, Temodar and radiation. The hope was that it would stay the growth of the tumor, but his headaches continued after this stage of treatment ended in January 2003. February’s MRI brings bad news. The tumor continues to grow. In fact, his pediatrician makes arrangements for Nolan to enter hospice. Nerves in his face have been damaged by the radiotherapy and he has partial paralysis there.

Parents who end up choosing Burzynski are rarely interested explicitly in prolonging life–merely prolonging a child’s life for a matter months, anything less than giving them a full life, in fact, is an unacceptably unthinkable failure. Burzynski, at a steep price, holds out the specter of a cure. This is at the expense of vetted therapies and palliative care, which really do reduce suffering. Sadly, Nolan’s parents decide to go to Texas.

On the 22nd of March, a third MRI shows more growth, and he has lost some sensation in his limbs on his left side. Nolan and his mom are on the plane to Houston the next day. Over the next few days, Nolan has surgery to put a tube in his chest to receive the drugs, which will be infused continuously over the next several months.  According to the family:

On March 25, Nolan was enrolled in a phase II government-approved clinical trial of the antineoplaston infusion therapy, which has shown great promise in treating the most difficult forms of brain cancer.

The phrasing here is somewhat misleading, though I understand the hope that it embodies. One should not understand that any drug in a phase II clinical trial is by definition unproved. A decade later, antineoplastons are still unproved, and the study that Nolan was enrolled in remains unpublished to this day, even though the family had to raise the money for him to enter the trial. In fact, antineoplastons are unpromising as ever.

On March 26th, Nolan starts on antineoplastons. He and his mom remain in Houston until April 17th, after they have been trained on how to use the pump, administer the drugs and fend for themselves. He remains on steroids.

An MRI on May 20th reveals that the tumor is stable. This is what someone might expect even for an untreated tumor. When a tumor is small and has, say, access to unlimited nutrients, it can and does grow exponentially. But as the tumor becomes bigger, the time between doublings increases, so what you have is a flattened ‘s’ shaped curve, illustrating Gompertzian growth. He is dizzy and has a lot of pain in his joints, the latter because of the steroids.

The MRI on July 15th shows that the tumor has grown by 13%. Even though Nolan has been on the ANP longer than he was on tested and approved chemotherapies and the treatment is clearly not working, the Burzynski Clinic recommends upping Nolan’s dose, keeping a paying customer on treatment.

Just three weeks later, on 6 August, Nolan has a number of seizures and goes into the hospital for two days. The family lowers the dose of the ANP. On the morning 23rd, Nolan is only semi-conscious and taken again to the hospital. By the next morning, he is unable to breathe on his own, his mother reports:

The kind team at Santa Clara Pediatric Intensive Care Unit kept him alive until his father and siblings could arrive at his bedside to say their last good-byes.

The next year, Nolan’s mother reflected on her experiences:

This time last year we were in Houston, Texas, undergoing those antineoplaston treatments.  Even though the treatments are not something I would choose again, I did receive the huge blessing of renewing a friendship with my wonderful friend Lauri […] and her beautiful daughters (and awesome husband).  They have been a continued source of support and encouragement to me this past year, and I know the bonds we share will carry through to eternity.

Perhaps, then, it is to be expected that nobody from the Clinic was singled out to be thanked when Nolan’s ordeal ended.

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

Burzynski Patient Wayne Merritt’s Story

Note: This is a repost of an earlier case.

***

Wayne Merritt was diagnosed with pancreatic cancer in Sept 2009, only 11 months after his wife, Lisa Marie, had been diagnosed with breast cancer. His prognosis was grim by any standard, as Lisa Marie reports in their Caring Bridge journal on Sept 29, 2009 (unless otherwise indicated, the source of this story):

However,.. she made it very clear that this type of cancer is not curable and the chemo treatments would be for the duration of the disease. He would take a treatment for 2 weeks in a row,.. and then be off for 1 week. We asked her bluntly about pronosis with and without treatment and were told “less than 6 months without treatment” and “6 to 12 months,.. maybe as much as 15 with treatment”. It all depends on how the chemo drugs affect the growth of the tumors. There is no way to predict if the drugs would be successful. This is all weighing very heavy on us. We are totally exhausted, emotionally and physically. We just feel numb inside.

On October 2nd, they have settled on the Burzynski Clinic:

Written Oct 2, 2009 3:54pm

Much prayer,… much research,…. much discussion…. has led us in the direction of The Burzynski Clinic in Houston Texas and their method of treatment. We have found an inner peace about this program that we had been unable to feel about previous programs we’ve researched. IT’S EXPENSIVE! BUT, what price can be placed on the life of someone you love!?!?!
Turns out, Burzynski answers with a firm “at least $20,000.” But we’ll get there.

The family reports that they were attracted to the Clinic on the basis of its success treating Wayne’s disease:

“They claimed to have had success with Pancreatic/Liver Cancer patients! Up to 5 years of survival, we were told. Wow! 5 years sounds like an eternity when you’ve been given only 6 months!!!!”

The family drives cross country to the Burzynski Clinic in Houston, where they have their first appointment on Oct 8th:

Written Oct 8, 2009 6:41pm

We saw the doctor today. Actually, we saw three doctors today. Dr. Burzynski being one of them. He was updeat and positive about treating Wayne, although he made no promises. He admitted that pancreatic/liver is a tough one. He said the treatment would either help fairly quickly,… or it would not work at all. He will keep a check on the progress very closely for the first couple of months,.. and if he is successful we should see the tumor growth slow down, stop, or even shrink.

They had been expecting to be placed in a clinical trial, as Lisa Marie describes in an email to this site:

He was not a part of the clinical trial. We were told he would be…. Until we got out there. Then we were given a whole different regimen.” [emphasis added]
Usually, you might expect this to be an anomaly, but the same thing happened to Kathy B., who only found out that she was going to be on regular chemotherapy after paying $30,000.

Furthermore, the successes that had originally attracted the Merritts to the Clinic? All of the patients they were referred to were still within the range of life-expectancy that Wayne had been given for his diagnosis:

They gave us a list of contacts. The sheet contained 4 names of pancreatic patients, 1 would not allow you to contact them, and out of the other 3, the earliest diagnosis was in March of 2009! Where are the people that have survived for 3 years, 4 years, 5 years!!!!???? Heck, even 1 year would have been nice!
We followed up on those patients. At the time they were given the sheet, the condition of these patients was worse than they could have possibly expected:


Joseph A. was alive, but died well within the expected life expectancy for his diagnosis. Maxine M. had already died in October of 2008. Irene S. would be dead within the month. Joanne S. too was alive but was also dead not a year after starting therapy. 

In an update on Oct 15, we learn that a PET scan has found tumor activity on pancreas and the liver. They appear on the “gene-therapy” track that the clinic offers instead of the ANP track:

If you are interested…. this is the list of medications…. some of you have asked me. 1) Amino Care- developed by Dr. Burzynski 2) Brain Longevity – developed by Dr. Burzynski 3) Xeloda 4) Sodium Phenylbutyrate 5) Zolinza 6) Nexavar 7) Rapamune 8) Avastin (given through IV)

Two out of the three genetic markers have come back….
HER2 was normal
VEGF was very high
EGFR we will get results tomorrow…..
They close with an appeal about their finances:

Again, please…. keep us in your prayers concerning our insurance! They do NOT want to help pay for this treatment…. due to the fact that even though these meds are FDA approved,… they are NOT approved for use as being prescribed by Dr. Burzynski. All treatment so far is out of pocket,…. And our pockets are not very deep!

After they return home to Georgia, we receive an update that reveals that there the Burzynski Clinic has not given the Merritt’s an accurate understanding of what lies ahead for them and that they find themselves staring up at the foot of a mountain of debt:

Written Oct 27, 2009 7:50pm

It is with a heavy heart that I deliver the following news…..

We had an appointment with a local oncologist this morning. We went there to get blood work to fax back to the Burzynski Clinic and to set up the infusion of Avastin that he was prescribed to have every two weeks by Dr. Burzynski. They did the blood work without a problem, however when the doctor came in to talk with us, she stated that she would not be able to give Wayne the Avastin infusion…. And that no other oncologist would be able to either. They are not allowed to administer drugs not approved for a particular diagnosis, this makes them liable. She stated that even if she could administer the drug, it would be completely out-of-pocket for us. She stated that the insurance would not cover it, and even had her office check to be sure. AND on top of that,… she said even if we wanted to pay the approximately $8000 for the treatment every 2 weeks,…. She could not assume the responsibility of drug reactions that could occur, which she said were many.

From the first day we went to the Burzynski Clinic, we were pushed into one drug after another, with the costs mounting to great heights with each one added. We had really hoped that a miracle would happen,… either the genetic tests would determine that Wayne did not need to be on some of the drugs,.. or he would only have to take some of the drugs for short periods of time,… or insurance would come through for us and some of the cost would be covered. That has not happened, and the local oncologist says it will not happen. She had her people check and only one medication is approved and covered for Wayne’s diagnosis of pancreatic cancer. We also confirmed this by paying our local pharmacist a visit,.. and they said the same. So,… we now feel any statements made by the Bursynski Clinic concerning insurance payment/reimbursement was just them blowing smoke our way,… to the tune of $20,000 out of pocket plus travel and lodging costs. [emphasis added]

These unexplained, unexpected fees are TITANIC:

We’ve determined that to keep Wayne on this course of treatment would cost us between $28,000 and $30,000 per month for several months, plus travel costs to Houston every 2 weeks to receive the Avastin infusion, because we are unable to get it here. All of this is just not possible. We were told and expected… $15,000 for the first, initial visit/tests,.. and $4000 to $6000 each month in medication. We could have found a way to handle that, but that got blown out of the water!!!!! We feel we were grossly misled.

We are saddened,… crushed,…. confused,…. feeling like we have ran into a solid brick wall face first….. trying to catch our breath and figure out what our next step toward treatment might be. [emphasis added]

The Merritts of course, decided to look elsewhere for treatment, but when they contacted the Clinic to discuss how they could safety wean Wayne off of the drugs safely, they were not referred to any medical expert. Rather, they were sent to the insurance coordinator.

The family is rocked by these developments, and they disappear from radar as they recover and regroup. We hear about what has been going on in the interim in early December:

Written Dec 1, 2009 9:31am

It’s been a while since I updated the website, I know, however…. After our last blow to the gut by the Burzynski Clinic… it took us a little while to get our feet back on the ground and clear our minds enough to think clearly as to what direction we should take.

We have decided to go with The University of Texas, MD Anderson Cancer Center in Houston TX. We’ve spent days gathering all the documentation they needed to review his case. It is being reviewed now, and we are waiting to hear as to whether or not they think there is any form of treatment that will be beneficial.

Burzynski treatment, however, continues to impede the Merritts’ progress:

Written Dec 3, 2009 2:58pm

We got the phone call from M.D. Anderson Cancer Center yesterday, and it was not what we had hoped. Because of the treatment recieved at the Burzynski Clinic, Wayne will not qualify for any First Round Clinical Trials. Since M.D. Anderson is a research hospital,… dealing exclusively in clinical trials, they stated that they would not be able to treat him, nor would any other clinic, hospital, doctor dealing in clinical trials. His only choice now, according to the medical community, is conventional chemotherapy. Wayne does not want that.

Merritt family’s grievances at this point include:

–Burzynski gave my husband standard chemotherapy medications along with the long list of other meds that were supposed to work in conjunction with each other. We were never told that two of the medications were conventional chemo medications. AND one medication that they charged us over $2300 for,.. we found out from our local pharmacy that we could have purchased it for around $170 from them.

–SO…After we stopped with [Bruzynski’s] treatment….We were told that he WOULD NOT BE able to take part in any first round clinical trials, because he had taken chemo medications, no matter how small the dose, or how short the duration. WE WERE NOT TOLD THIS UP FRONT.

–We contacted several facilities, including The University of Texas, MD Anderson Cancer Clinic. None of which will see him because of the treatment he received at Burzynski Clinic.

So according to the family, the Burzynski Clinic grievously wronged them in several ways: 1) they vastly overcharged them for common medications; 2) they treated him with conventional chemotherapy (despite all the whooping and hooting by Burzynski supporters about how his treatments are “all natural”) without revealing the full implications of that chemotherapy (apparently denying them informed consent); 3) denying them informed consent, the Burzynski Clinic limited Wayne’s future treatment options; 4) by making Wayne ineligible for experimental treatment, the Burzynski Clinic has impeded research into an intractable and deadly disease.

Everybody suffers from this type of behavior, especially pancreatic cancer patients, who need research into one of the deadliest cancers.

As I think you will agree, the Merritts were completely within their right to make their dissatisfaction with clinic heard in any way they saw fit. And, god bless them, they did. They set up the website BurzynskiScam.com, where they conclude, “In our opinion, the Burzynski Clinic is selling false hope at a price no common person can afford!”

Under normal circumstances, that’s where the story would probably end. At the end of 2011, however, a PR guy named Marc Stephens, who had been hired by the Burzynski Clinic (apparently to improve his online reputation), started issuing quasi-legal threats to bloggers around the world. Stephens went so far as to threaten a teenage blogger in Wales by sending him images if his own house (the only possible interpretation of this is “we know where you live.”) It was written up in the international press:

Rhys Morgan: ‘They are trying to silence me’

As you could have guessed this rash, ill-advised, and fatuous action against science bloggers led to outrage across the web and drew lots of attention to the scare tactics that the Clinic was employing. (They later distanced themselves from Stephens in an epic non-pology. The full history of this episode can be found at Josephine Jones’s comprehensive website.)

It turns out that not only did Burzynski’s hired man threaten bloggers, but he also threatened pancreatic cancer patient Wayne Merritt.
On September 30th, 2011, at the same time bloggers were being threatened, Stephens contacted the Merritts by email in the guise of someone who had once passed out in a law school parking lot. In all, he issued three written threats and promised that not only did he represented the Clinic (which at the time was true), but also that he planned to commence legal proceedings against the Merritts. This received scant attention when Lisa Marie Merritt posted about this in the comments of a blog (though a mention is buried in Josephine Jones’s compendious post). The threats Stephens made against cancer patients on behalf of the Burzynski Clinic [pdf] never received any attention before now.

Most disturbing about all of this is that Stephens suggests that he has looked through patient files and has detailed information about them and their treatment. (If this is true, how could this ever be considered an ethical use of private, privileged patient data?)

And he didn’t just email them badly worded threats, he actually phoned them at home. According to an email sent to this site by Lisa Marie, she put him in his place:

Marc Stephens was the one who contacted me. He was very, very rude and pushy. HOWEVER,…. I told him, “I have had breast cancer and faced death, my husband has pancreatic cancer and is facing a death…… after all that…. there isn’t anything you can do or say or threaten that will scare me! And short of a court order… and jail time, I will not be removing the site.”

He did not call back… but I heard that he had been let go by BC. If they have hired another guy…. I’m sure I’ll be hearing from him as well. He will get the same response.

Hell, yes.

I am glad that their persecution by Burznyki’s toughs ended there, but the psuedo-legal attacks against the critics of the Burzynski Clinic have continued. In the Spring, a number of skeptics (myself included) were depicted as pedophiles on a very short lived website. And this winter, my employer was contacted by Eric Merola, the director of the no-budget Internet stinker Burzynski: Cancer is a Serious Business. He misrepresented me to my new employer, swore he was going to put me in the sequel (Burzynski: Antineoplaston Boogaloo), asked for a statement from my employer about what I do in my spare time, and then had the gall to include a little legal disclaimer that read: “This email was intended for the recipient at XXXXXXXX@XXXXX.edu only. It is not intended to be to be forwarded either in part of verbatim to Mr. Robert Blaskiewicz.” The lawyers and I had a chuckle.

I am pleased to report that Wayne Merritt is still with us, having far exceeded his initial prognosis, and that his tumor seems not to be growing. I don’t get to thank many of Burzynski’s patients for the use of their stories, and I deeply appreciate their kindness and willingness to speak out about their horrible experiences with the Clinic.

Burzynski Patient Luna P’s Story

Note: This is a repost of an earlier patient case.

Luna P. was 18 months old when her parents noticed that she was quite unwell in early August 2008. They took her to the hospital and over the course of the next few days she was diagnosed with an ependymoma. Eleven hours of emergency surgery took a hard toll on Luna and left her very weak on her left side and unable to swallow (she was fed through a tube after that). Conventional therapy was very hard on Luna, but in December 2008, the tumor had shrunk enough that the doctor could attempt surgery, and they went through a course of dangerous surgeries over the next few months, which Luna tolerated fairly well, according to her parents’ website. But the tumor kept growing, and this made them desperate.

They met with Anthony Michalski, their consultant in pediatric oncology at the Great Ormand Street Hospital. This interaction and the collaboration of the pediatric oncology department at GOSH was partially documented in the BBC 2 film, A Tough Line. When they review scans following her string of surgeries, the entire team–an entire room of specialists–agrees that the tumor, which is now compressing her brainstem is recurring and that the current treatment is not working. Michalski wants Luna to go on etopocide to prolong her life; a cure, while possible, would likely not be the ultimate outcome. They agree to go on the meds, but when no physician in the UK can offer them a cure, they find Burzynski on the Internet.

In so many of these cases, we hear the parents of children with cancer describe their gamble as an all or nothing game. Either physicians save their child or fail their child. There is no in between, and their desperation is understandable. However, there are halfway points, and while they will feel unacceptable to the parents at the time, there is such a thing as palliative care, which reduces the suffering of everyone involved, especially the patient. It is at this point of abject misery and desperation that Burzynski springs with what he calls “hope.”

In my years working on sketchy claims, I have come to realize that there are two things that anyone can sell, and people will buy it eagerly. The first is flattery. The second is hope. And there is no limit on the price you can exact from desperate parents who are looking for the latter.

And he always tells them exactly what they want to hear. According to Luna’s website:

There is no more treatment that can be done in the UK. We went home and cried for several days then we looked at Luna and thought hang on she’s not crying we cannot give up she has fought so long and hard and not a day passes that through all of this she hasn’t smiled. So we searched and searched asked questions and somehow found contact with another family who’s daughter had exactly the same disease and discovered there was something out there.

A treatment call Antineoplaston therapy which has had amazing results in the US. We have to try this.

The cost to meet the Doctor for assessment is £20,000

If Luna is accepted the treatment then costs £50,000 a year.

This is absurd. There are limited cases where a patient might expect to pay to be in a clinical trial, but the types of trials that Burzynski is doing certainly don’t qualify. Most pharmaceutical companies, when they are developing a drug, offer patients care and treatment free of charge because the patients are volunteering to put their bodies on the line. Burzynski does not technically charge for the antineoplastons, but he charges for everything else that could possibly be related to ANP–visits, phone calls, consults, etc. This does not resemble the business model of someone who expects to eventually make a return on an approved drug, and remember, if he is genuinely going to cure cancer, he is going to be able to charge whatever he likes. The fact that innumerable other startups get their drugs to market without B’s revenue stream is deeply, deeply suspicious.

In late May, and early June, Luna’s story was in the media, in The Sun, in the Watford Observer, and the Sunday Express as the family was actively raising money for Burzynski.

At the end of July, 2011, the family arrived in the United States searching for a cure. By the end of August, back in the UK, they knew that they would be in Houston by September 12.

The traditional treatment seems to be having an effect, keeping the disease from growing. It is an “effective agent,” perhaps the best possible outcome at this point. Nonetheless, the family presses ahead fundraising for Burzynski. They raised £100,000 for Burzynski in a mere 8 weeks.

They report to their consultant in the UK after their trip that Burzynski told them that he has 30% of patients have a good reaction, using the metric of “stable disease.” This is criteria is problematic, though. According to a site review at Burzynski’s clinic:

“Moving from protocols to results, I am surprised by Dr. Burzynski’s statement that stable disease is a positive outcome. That runs contrary to established criteria for trial design. In the context of phase II trials, which are short-term studies, stable disease is not reported as a positive outcome.”

After this consult in the UK, Luna’s doctor remarks,

“But what you hear quite a lot is, ‘how do you know that he or she is going to be ‘the one [who has a successful ‘miracle’ treatment]? … And the phrase that makes my heart sink is ‘We’d never forgive ourselves if…’. Actually, it’s not about them forgiving themselves. It’s about them doing the best for their child. And the focus should be what’s happening for the individual child rather than parental emotions. It’s tough because it’s so understandable […] that you are going to do everything in your power to hunt down the last chance of cure, but where that becomes a futile exercise is a difficult call, a difficult line.”

This is the point that an ethical, concerned doctor takes away from a professional lifetime of caring for children, something that Burznyski seems to have never considered. (It apparently doesn’t fit his business model.)

On October 10th, the family posts a photo of themselves in front of the Burzynski Clinic. As best I can tell, a lot of patients take the same photo. It’s like being forced to watch a horror movie again and again.

Only one week later, however, on October 17, the message goes out:

Little Luna is currently in hospital and not too well. Our thoughts are with all of you xxxxx

So quickly does Luna’s condition deteriorate it’s difficult not to think about how quickly Rachel M. nosedived this fall after starting ANP and how groggy she was. According to an interview with Luna’s mother in the Watford Observer, the treatment put Luna in the hospital:

However, Mrs Petagine said the treatment at The Burzynski Clinic was actually killing her daughter.

She added: “The treatment was – what was happening – was actually killing Luna because it put this pressure on her brain stem.”

Once Luna was on the Burzynski treatment, her sodium level went insanely high. Her REAL physician’s reaction to this news, which was captured on film by the BBC, tells the whole story about what a horror antineoplastons are:

This is much the same deadly side effect that nearly put Adam M. into a coma. Antineoplastons are toxic chemotherapy. A patient informed consent form for one of the ANP trials (dated from last year), included the following as a partial list of ANP’s side effects:

  • severe or life-threatening increased sodium concentration in blood;
  • risk of death;
  • allergies;
  • difficulty arousing;
  • coma;
  • severe or life-threatening low potassium concentration in the blood;
  • decreased levels of consciousness;
  • upset stomach;
  • low platelet numbers requiring transfusions;
  • severe fatigue interfering with activities of daily living;
  • fever greater than 104F;
  • frequent urination at a rate of urination at least once every hour of more often or a requirement for a catheter;
  • liver toxicity;
  • hallucinations;
  • vomiting;
  • chills;
  • swelling;
  • irregular heartbeat;
  • decreased white blood cell count;
  • slurred speech.

This goes on for 3 pages. The quantities of water that patients need to drink (I’ve seen up to 11 liters a day) is obscene.

At a checkup at GOSH, that Luna is in a sorry state is immediately apparent. She is chugging water incessantly throughout the clip and slobbering uncontrollably. No matter what a Burzynski supporter says, this is a potentially toxic treatment and its terrible effects are written all over this little girl. (I should note that this disturbing film is really important to understand the horrible choices that parents are forced to make. I recommend it, lest you think anyone can take writing about these issues glibly. You can’t.)

By February of this year, the ANP has proved to have been a resounding failure. Burzynski, just like with Adam M., tries to get them on his ridiculous “gene-targeted” therapy; it’s basically a Chemo Colatta, apparently mixing drugs that have never been tested together, often applied to cancers that they have not been tested on, but don’t take my word for it:

Luna and her family have been talking to Doctors in the US at the Clinic, who have agreed it is unsafe to put her back on the Anteneoplaston Therapy because her tumour is so close to her brain stem. They have however suggested they put her on a treatment called Gene Targeted Therapy. This is where they take a sample of the tumour and in a lab test it’s genetics and test what drugs will work against it. Then then will give those drugs to Luna. The family are very excited because they knew the Anteneoplaston could eventually be too much for Luna, with possible fatal consequences and of course they are desperate to cure her. The Gene Targeted Therapy is having amazing results in adults so we pray it will do the same for Luna. We now need to continue to fund raise so the family can start the treatment and carry on with it. Any fund raising ideas please email us via the website. Thank you x

Charging $30,000 to start up (again, according to Adam M’s wife) and $20,000/month thereafter for off-label drugs selected via the genetic equivalent of palm reading, the Burzynski boys are shameless. For an illustration of a patient who is on this course of treatment, see the case of Denise D.

From this point on, it is uncertain to me what their relationship with Burzynski is. They seem to have continued fundraising but were working with doctors in Boston.

The announcement goes out on the 25th of June:

It is with a heavy heart that we write this update. Despite battling against all the odds over the last 3 years it saddens us to tell you Luna is losing her battle. Lucy and the family took her back to GOSH on Friday after she appeared to be deteriorating in front of their eyes. A CT scan gave the devastating news that not only had the tumour grown but that it now appears inoperable and beyond treatment. The family have been told to take Luna home and cherish the time they have left with her. The picture here shows Luna, her siblings and cousins enjoying a family day for their Popsies birthday. The family continue to show unprecedented strength and dignity throughout and we have nothing but admiration for them – especially Luna x

They carried their daughter very, very far. Her father ran a damned marathon for her. These parents did everything that their instincts told them to do.

On August 8, 2012, the sad, sad news came that Luna had died:

On behalf of Lucy and Mario It is with great sadness that we share with you that our Beautiful Luna fell asleep very peacefully with mummy and papa holding her tight to become a shinning star, and we thank her for all the wonderful memories she leaves with us, and thank you from the bottom of our hearts for all your support and love you have shown us in everything that you have done.

On the 16th, the family–and the whole community that sprang up around her—said farewell to their daughter.

Her family has continued to memorialize their daughter, and I do hope that they continue to press Parliament for more funds for brain cancer research.

To learn about legitimate clinical trials, please visit clinicaltrials.gov. To help children receive top-notch, free cancer care, please donate to St. Jude’s Children’s Hospital.

Burzynski Patient Maria V.’s Story

After reading so many stories of so many patients and their families, you learn a vast empathy. Every time you start a new patient story, if you are not carried along by the power of the emotions attached to every decision that these families make, something is wrong with you. This is a story of a magnificent woman who died too soon. She she was young, only 50, but her children were almost all grown and as you read her story, you have the sense of a major character being yanked unceremoniously from an otherwise complete narrative.

Maria V.‘s daughter kept a blog of their experiences, starting with their trip to Burzynski Clinic. Maria had stage 4 uterine leiomyosarcoma, a very rare cancer which had metastasized to her lung, liver and bones.

Maria and her daughter flew into Houston on 13 Nov 2011. On the 14th they are at the Clinic, and it’s interesting to get a number of close-ups of the  photos adorning the walls of the clinic. They are completely self-serving. One is of Albert Einstein, and features the quote: “Great spirits have always encountered opposition from mediocre minds.” Another one is of Louis Pasteur and it reads, “Nobody knew his name when he got started either.” This difference is that both Einstein and Pasteur, of course, published their results. Pasteur was a master experimentalist. Einstein made extraordinary claims who won over the scientific community when others were able to observe what he predicted. Burzynski, of course, is neither. Most doctors will not work with him, and despite his 60+ clinical trials, he has only ever finished one (a completion batting average of .015). He’s published none of them. When you consider how many patients have paid to be included in those apparently unpublishable trials, you realize the magnitude of what is happening in that place.

Right away, we get a sense of what is going on, as the family is in the waiting room, where they met a patient from Georgia with bladder cancer:

She sat down next to my Mom and in true [V.] fashion my Mom looked over at her and asked, “What’s your problem?” she said it in a sweet way of course. The lady proceeded to tell us about her hardships and was soon called into the Dr.’s Financial Dept. When the woman came out, my mom noticed right away that she was upset, the woman’s brother went to get their car and when he left the woman burst into tears, right away my mom ran to her and started comforting her and telling her it would be ok. I swear it took all the strength I had not to burst into tears at that very moment! It was like watching two injured puppies console each other. I could hear my Mom whispering to her to be strong and I had to look away because one of us had to keep it gangsta.

Later my Mom told me the woman was crying because she couldn’t afford the treatment.

We hear that the family can afford the treatment but there’s this:

Today was hard but filled with hope. The doctors definitely had a plan of action and offered us options. I look forward to the days that follow. I know there are people out there that think we are crazy for spending our entire life savings on this without a guarantee, I used to be one of those people but when the person you Love most on the planet is told to go home and die you will go to any lengths and spend any amount of money for another shot.

The next day, Maria begins her “gene-targeted therapy.” This is an untested chemo cocktail based on a blood test which is the genetic equivalent of palm reading:

On a technical note, Mom began her first gene targeted therapy today. She’s taking a medication called PB, it obviously has a longer name but that’s the acronym,that attacks tumors on a cellular level and makes it easier for other medications to kill and break up the tumor. Her new doctors are approaching her disease with gene targeted therapy. Their goal is to stop and shrink her tumors. Once they get her blood and caris results back they will choose medications that match up with the markers present in her blood and design a specific treatment just for her. I have a good feeling about this.

Burzynski’s definition of gene-targeted therapy is so broad that even eating an orange could be considered a type of gene targeted therapy, because metabolism reacts with the products of gene expression. Of course, no matter how “targeted” it is supposed to be, you always have to buy Burzynski’s phenylbutyrate. Of course there is always a cheaper alternative available through Ucyclyd Pharma in Hunt Valley, but patients are apparently encouraged to buy it through the in-house pharmacy.

On the 16th we get the photo of the exterior of the clinic, the same one that so many patients have put on their blogs. And then money becomes an issue, including the bizarre practices of forcing patients to buy in house meds:

The very first drugs they prescribe you at Burzynskis you have to buy there, after that you can get prescriptions filled by your local pharmacists and hopefully your insurance can pay for it. Today, my Mom was given an injection for her bone metastasis, One injection once a month is, are you ready for this, brace yourselves, 3,300 American dollars! ONE INJECTION!  This is apart from what she had to pay to get started and that’s not even ¼ of the medication she will eventually be prescribed. Her Blood markers showed that she has a lot of very active HER 2 receptors and will eventually be prescribed Herceptin and that only runs about 500 dollars A PILL, one single pill!

Then we hear something horrible, something that the Burzynski Clinic is banking on:
My heart breaks every time we go into the financial office but like I tell my Mom, I don’t need an inheritance I need a Mama Bear! If the treatment works we will find a way to pay, nothing is impossible. There is no way I can let my Mom die because we couldn’t afford it. To break the tension and make my Mom laugh I tell her she better start getting ready to sell some tamales!
On the 17th, we hear that they have had an appointment with the nutritionist (notice it’s not a dietician, which is the protected professional term), where it seems they  have gotten some dodgy advice about diet and cancer:
The nutritionist was telling us that 70 percent of cancers can be prevented with nutrition alone. WOW. Basically people with cancer should avoid all red meat, eat 5 small meals with healthy proteins and complex carbs, also 1/3 cup of nuts is recommended and a wheatgrass shot every morning.
Wheatgrass juice is a nutritionless scandal. As Brian Dunning has noted: “The bottom line is that a shot of wheatgrass juice offers far less nutrition than a single Flintstones vitamin pill.”
On the 21st, we hear that one of Maria’s daily chemo doses is $500 a pill, and then we get this horrible little tidbit:
So far MB has been feeling good, she’s been holding up nicely and responding well to the new meds. She is such a trooper, taking up to 6 pills every two hours. The pills are the doctors special concoction, they refer to them as PB but they really are the antineoplastons in pill form. The doctor has cleverly found a way around the FDA by prescribing them for off label uses. Sneaky doctor;)
There is nothing clever about this, other than the fact that Burzynski is selling a urea cycle drug as a cancer treatment at an inflated cost. The joy in running around regulatory protections is also worrisome. And these are NOT a special concoction (I wonder who told them this and if that’s even legal?). You will notice that the FDA required product description on Burzynski’s AmPolGen site is identical to the NIH’s description of the drug sold by Ucyclyd (contact information is available on that sheet).
We also hear that the younger daughter is offering to get a third job to help pay the mortgage.
One of our nurses, Amanda, took a liking to us and made sure to bring over Joan, Joan has been fighting stage 4 colon cancer for 5 years, MD Anderson told her there was nothing more they could do so she came to Dr. Bs and is THRIVING! After only 2 months her tumor markers have dropped 70 percent! She said she’d never seen such a drop at MD Anderson,
We’ve noticed a trend so far, everyone we meet is stage 4,they have been told, by their oncologists, to go home and make the best of the time that they have, they get a kick in the ass and a “See you later…but probably not”, by “modern medicine”.
Ironically, what Dr. B is doing with his gene targeted therapy, seems a million times more modern and advanced than what we get at home.
Of course, it’s not. If the best cancer centers aren’t doing something, they probably have a reason.
Maria spends Thanksgiving away from most of her family. The pain in her back is growing; there’s a tumor on her L4 vertebra.
On 29 November, we get a very clear idea of the family’s perspective, and why they like the Clinic. This family, as far as I have seen yet, has not expressed any dissatisfaction with the Clinic at all. Please read that and understand what you are reading here is not necessarily as the patients themselves would have described it. However, here we are comparing each story with hundreds of other stories, which gives us a bit of perspective that we simply cannot expect these patients to have. So when Maria’s describes the care that she is getting from Greg Burzynski, she does not know that he also did this to patient Kathy B, who made it clear that she did not want regular chemotherapy (ANP is chemo too, but that’s beside the point) and who only learned that she would not receive ANP after she paid $30,000:

I made this video in anticipation that I would be receiving the antineoplastons. Apparently after spending over 30,000 here I found out that the Antineoplastons are only reserved for brain cancer patients who have already undergone chemo radiation. FDA put this restriction on the Burzynski Clinic, so any other cancer patients are BASICALLY ONLY GETTING THE TRADITIONAL ALLOPATHIC TREATMENTS OF SYNTHETIC ANTINEOPLASTON PILLS THAT DID NOTHING FOR ME. HOWEVER I CAN SAY THAT THIS WAS PART OF MY PATH AND EVEN THOUGH I WASTED MY MONEY HERE I HAVE TO SAY THIS PART OF MY PATH LED ME TO WHERE i AM NOW. […]

It is the end of their trip to Houston, and the family is returning to California. On the first of December, we hear that the projected cost for continuing the treatment is $10,000. The family is starting to fundraise, already having left “most of [Maria’s] life savings” in Texas. When they get back home, something really amazing happens (and frustrating). An anonymous stranger who sees the family protesting at the hospital it seems initially misdiagnosed Maria drops off a cashier’s check for $10,000 in a bag of avocados. It’s truly an amazing gift that speaks of unalloyed generosity and kindness. And it goes straight into Burzynski’s bucket of money. The story is picked up and goes national, picked up by Telemundo, Rachel Maddow, NBC, and Fox.  We hear from the daughter in the KSDK report that Maria has “liquidated her life savings to see this doctor.”
I’ll give it to the daughter. She is a force of nature (English major, as she reveals in a vlog a few months later). In the light of the national coverage, she gets a meeting with the VP of the hospital and its lawyers. Everyone should have someone so committed in their corner when they are in need.
In the new year, on January 6th, it looks like we are getting a little bit more of the story behind the protests at the hospital. When the family returned home, they presented the oncologist with the treatment plan. The doctor rejected it. Maria went off treatment. After the meeting with the lawyers, the oncologist reviewed the plan and called the clinic to get a rationale for the treatment and then rejected it. The daughter’s frustration comes out in a long post, and we do see her fight like hell to get the treatment covered. It seems that the principle behind the protest is that insurance companies should fund any treatment that the patient wants. And we see a hint of something disgusting from the Clinic, pitting cancer patients against actual oncologists:
MBs doctor’s in TX called today and urged us to start chemo again ASAP, they said MB has a very narrow window of time to get it done before it’s too late and her body is to weak to take it. WOW, [J] has purposefuly been wasting our time, she’s not retarded, or maybe she is, she must know about this window but never bothered to tell us.
By the end of January, the family seems numb. Maria is weak, and her doctors’ appointments wear her out. We have a description of her physical and mental condition:
Today, I rubbed lotion on [Maria’s] back and saw the toll cancer has taken on her body. She looks like one of those starving kids in Africa. Her arms are skin and bone, her belly is bloated because of the tumors, her skin is thin because of the meds, her hair is gone and her legs are swollen.  When she takes off her shirt I’m shocked but unaffected, I don’t cry, I don’t feel like crying, I just rub lotion on her back and demand that God start doing something!Lately [Maria] sits in her chair in silence, I ask her questions and she doesn’t respond. She’s checked out. Her body is here but her mind is elsewhere and its not good. She’s numb too. It’s weeks like these that I pray God take her. She prays God take her too. I tell her to hang in there and she says she tries but that its getting harder.
At the end of the month, Maria’s husband has a sober realization that the cancer is progressing. The updates come less and less frequently. At some point in February, it seems that the family finds a doctor who will write Burzynski’s prescriptions for chemo.
On April 4th, Maria has a scary moment when she falls, and the family, it seems, decides to suspend chemotherapy (we can’t know if it is Burzynski’s treatment at this point) pending the results of the next PET scan. Maria is miserable, swollen with edema and weak, and the daughter comes to a realization:
[The fall has] forced us to reconsider many of the decisions we’ve made. We do not regret fighting,never that, we are just at a place in [Maria]’s disease where all of us have stopped to think, “Is it still worth it, should we keep encouraging her to do chemo when we see that it leaves her bedridden, her body falling apart piece by piece, at this point is this a life worth living. Is all the suffering, the swelling, the wounds, the bed sores, the mouth sores the sadness worth it?” I still don’t know, someday’s I think yes and some no. Everytime she gets mouthsores or a wound it’s like I get punched in the stomach. I don’t know how nurses do it. Whenever I help heal [Maria]’s wounds or even give her water to drink I’m forced to look away. I just don’t know anymore.
On April 12, Maria decides to enter hospice. She passed away in her sleep on May 12, 2012.
For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski, who demands his money up front for obvious reasons.

Burzynski Patient Mackie B.’s Story

One Sunday morning in January 2001, Mackie B.’s eyes rolled back into his head. He was 1 1/2 years old. His parents called 911, and he was rushed to an Atlanta area hospital where he had a CAT scan. By Tuesday he was in the OR, where doctors operated for 3.5 hours to remove as much of the very rare and aggressive atypical teratoid/rhabdoid tumor (ATRT) from his front temporal lobe. It’s a rare tumor, and only a few dozen are diagnosed each year in the US.
Mackie underwent chemotherapy and endured the side effects: fatigue, mouth sores and nausea. He started to lose his hearing. In August, another tumor was found, and he had another surgery to remove that tumor. According to a newspaper article in the AJC (8 Nov 2001), the family: “decided to go against their doctors’ recommendations and seek
alternatives to the toxic chemotherapy medicines.”
The family decided to go to Burzynski, however, his “signature medicine” is antineoplaston, or sodium phenylbutyrate, a chemotherapy by any reasonable measure. They joined a clinical trial in September 2011. When interviewed, Burzynski gave a sciencey explanation that is empty of any useful meaning:

“He is given an intravenous infusion of a synthetic version of chemicals that exist in the body,” he said. “And what they should do is activate the gene that can eliminate the tumor and suppress the gene that is causing the malignant cells. When it is successful, all the malignant cells will die.”

The article gives the impression that ANP have only mild side effects, “including thirst.” Of course, if the family signed an informed consent form at the Clinic, the side effects of ANP listed there on Burzynski’s own form probably included severe or life-threatening increased sodium concentration in blood; risk of death; allergies; difficulty arousing, coma, severe or life-threatening low potassium concentration in the blood, decreased levels of consciousness, upset stomach, low platelet numbers requiring transfusions, severe fatigue interfering with activities of daily living, fever greater than 104F, frequent urination at a rate of urination at least once every hour of more often or a requirement for a catheter, liver toxicity, hallucinations, vomiting, chills, swelling, irregular heartbeat, decreased white blood cell count, and slurred speech. This is about a third of what is listed on an actual informed consent form at clinic. But other than that it’s mild.
Burzynski also claims that he has had success with this type of tumor, according to the paper:

Since the trial began in 1996, he said, one patient experienced a complete eradication of a tumor, and another had a 50 percent decrease in the tumor. No change was detected in the tumor of the third patient.

This is a tumor that gives a patient a life expectancy of a year or less. Trial results should be gathered comparatively quickly. As with all 60 of his studies, the results of this trial remain unpublished. His trial publication rate, if it were a batting average, is literally .000.
Just because his studies are apparently unpublishable never stopped Burzynski from charging the desperate huge sums, unlike other researchers:

Already, they have spent more than $13,000 of their savings and are facing costs of $7,200 a month for up to a year of treatment.

That $13K would likely have been the upfront cost for going to the clinic and learning for 3 weeks how to fend for themselves. Mackie has a catheter in his chest where he receives the chemotherapy and the family must learn how to use the pump. Of course, the family is forced to fundraise for Burzynski and his bogus hope, holding concerts, garage sales, and other events trying to pay the bill. We have seen what happens to a patient when they miss a bill.
We’re lucky to have this meager amount of information about Mackie’s story, and we do not see a daily journal of what transpires.
By the end of December, just weeks later, it is clear, in his parents’ words:
“He failed the Burzinski’s treatment and now has to have radiation to the brain.”
No. The treatment failed Mackie, as it has with every single patient on this site. (Our list of patients to write up, by the way, reached 50 pages tonight. Mackie is our 50th patient to appear.)
It is at this time that Mackie appears on CNN, where real doctors are trying an experimental treatment on Mackie, as was reported by Sanjay Gupta (16 March), debulking the tumor again and putting in its place a balloon filled with a radioactive liquid to focus the radiation very precisely. It had never before been tried on a child.
Mackie died on Dec 19, 2002. Burzynski contributed nothing but false hope and heartbreak to the family.
For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.

Burzynski Patient Janet E.’s Story

In April 2010, Janet E. was diagnosed with ovarian cancer. The cancer was treated with conventional therapies, including surgery and chemotherapy, and by March 2011, she was in remission. Unfortunately, in November 2011, she relapsed. As she put it in a blog post:
“[…]I flunked my 6 month check up on Nov 8. My CA 125 was up to 624!! Normal is under 21 and it has been about 5 since March 2011 . It came as a complete shock as I feel absolutely fine. It is only the doctor who tells me I am sick. I did have a CT scan and the radiologist saw some very small “nodularity contiguous with the surface of the liver compatible with metastatic disease”.
This was, coincidentally, the same time that Burzynski’s people were sending bogus legal threats to teenagers and former patients, and the story exploded across the Internet while they were there, and her partner and longtime travelling companion Dave jumped into the online discussion, passionately defending Burzynski. In one comment, he discusses Janet’s prognosis:

The Medical Establishment “success(??)” numbers for my wife’s, now recurrent cancer, is half of them dead in 12 months. Two different Top Docs in the local Medical Establishment claim that her best hope is that they can give her 3.5 to 5.5 yrs of chemo and then she will be dead. And that ties her to Seattle. Forget the travel that we had been doing and planned to continue.

But, Dr. Burzynski says that only 15% his ovarian cancer patients get worse. 62% get better and some are in complete remission. His patients are treated with few if any side effects. He mails you the drugs, so you are not tied to his Clinic. You could travel.

Of course, Burzynski has absolutely no basis for saying this, since he has never seen a single large scale phase III clinical trial through to publication. That is basically the only way we can establish efficacy, and nobody is going to give Burzynski a pass on this.
They seem to have settled on Burzynski very early in the relapse, as on the 8th Janet announced:
“We are looking into an alternative treatment in Houston at the Burzynski Clinic. Our first appointment is Dec 27. He is doing some innovative research on “personalized targeted therapy based on what stimulates that particular patient’s cancer.” I have already sent a tumor sample to a lab in Arizona for analysis which will then give Dr. Burzynski the information he needs to devise a treatment for me.”
This is the chemo-cocktail option that most of his patients end up on, not the antineoplastons. These biopsies are the clinical equivalent of palm reading, and just as likely to work. His gene-target theory is in no way gene-targeted; he’s blasting people with loads of chemotherapies that have not been tested together.
It’s curious to note here that the day after this entry, while they have an appointment scheduled but have not yet been to the Clinic, Dave is on the Internet defending Burzynski and throwing out numbers like “only 15% get worse.” They’ve been talking to the clinic and they have been given some numbers.
On December 31st, we hear from Dave on the blog:

Dec 27th we saw the ‘notorious’ Dr. Burzynski. We really like him. And his staff, too. They are using very clever technology and their large selection of ‘tools to fight cancer’ to improve their odds of success with Janet. The drugs that they use are all FDA approved, but often for other uses. They call this ‘off label’ use.

On Dec 27th we spent from 10:00 am to 5:30 pm at the clinic seeing doctors, nurses, a nutritionist, a financial adviser and now are much poorer financially but very optimistic regarding Janet’s treatment.

On the 28th they did a PET scan before beginning any treatment. The PET scan showed that many of the worrisome ‘spots’ on the CT scan, were NOT active tumors. They are either dead and not yet assimilated, or they may be scar tissue.

But, there are still some, small, suspicious areas and they are going to treat those.

They really aren’t using clever technology well. Really. But I guarantee that they are going to be using oral phenylbutyrate (PB), manufactured in house and no different from any generic PB.
On the 8th of January, the course of treatment is being laid out:

Janet now has her custom designed treatment regimen or protocol. This consists of 4 oral medications and two infusions (mild chemo-like stuff injected into her veins).She is not having any important side effects at all. She will probably NOT loose her hair.

It’s not a protocol, because this is not a trial. This is alchemy.

Janet’s case is not being treated by any specific anti-neoplastons. We strongly hope that that is because they are not indicated for her and NOT because the FDA does not allow it. We know that many patients in the past were not allowed anti-neoplaston treatment due to FDA legal nightmares, and died because of that.

But, one of her drugs, causes the liver to significantly increase the anti-neoplaston output. These particular anti-neoplastons help correct about 100 of the most common cancer causing genetic defects. So, while it is a drug and not anti-neoplastons, it tells the body to create, sort of a broad-spectrum anti-neoplaston response.

Actually, I’m stunned to the hear this, because he does not seem to realize that this is precisely what people have been screaming at him on the Internet. In brief, Dave is wrong. The PB is what is known as a pro-drug, which needs to be metabolized (in the liver) into theraputic components. The liver is not “increasing antineoplaston output”; it’s doing what it does when it metabolizes phenylbutyrate. The drug was originally intended for urea cycle disorders decades ago, and it is sort of a wonder that Burzynski has repackaged it (and its daughter compounds) as cancer cures. The pharmacological breakdown of this well understood not-at-all-a-miracle can be seen at Respectful Insolence.
Costs for this type of treatment at this time are outlined by “wanda,” who posted here:
I was also a patient at Burzynski Clinic in July this year. I have stage 1v colon or ovarian cancer. Their path lab said the results were inconclusive. Strange two people who were there at the same time I was had inconclusive results also. They were the only other patients I talked to about the results. I spent three weeks in Texas at my own expense of course. Spent 35,000 at Burzynski Clinic and 4,500 more a month for sodium phenylbutyrate. This is the drug they give you to fight your cancer. As far as I can tell this is the drug given to all the patients. As soon as you pay up of course. This is the only drug I recieved from Burzynski as his targeted therapy. As far as gene testing that’s still a mystery to me.I was put on sodium phenylbutrate [working up to 3,000 mg 4 times a day 2 hrs apart with food] and chemo before any testing was done. I could of had chemo here at home and save the trip, time and money. Two other oncologist had already given me that option. One of the chemo drugs I am taking is Zeloda $3,500 at Burzynski for a 2 week supply $1,400 from other pharmacy’s. Spent $400 to talk to their nutritionist got the same info I could have gotten for free on the internet. In short it is to keep the acid level down and the alkaline level up. Their aminocare is something they suggest to all patients also. A list of it’s ingredient are on the aminocare site, or you can buy it on the internet.
Personalized, my patoot. Expensive? You bet. (It’s interesting to note that the pharmacist who runs that blog, who thinks ANP probably works and that Burzynski is a genius, also thinks that Burzynski’s business practices are sketchy.)
While they were at the Clinic, they met Hannah B., a prominent supporter of Burzynski who features in the new Burzynski movie. Pete, her boyfriend, interviewed the Dave and Janet at some length.
At time 12:20, David confirms the prognosis that other doctors gave Janet, 3.5 to 5 years. “That just isn’t good enough,” Janet chimes in.
At 17:20, David begins talking about the exchange that he had at the website above, and David reveals a very sad rationalization trap. This is an illustration of the thought process that keep people going to the Burzynski Clinic. I encourage you to, if nothing else, watch the video from that point on.
On January 23rd, Janet reports having side effects of the (various) chemotherapies she is on, and they are rather debilitating:

Unfortunately, I am having some side effects from one of the drug combinations that I am taking. Actually, they have taken me off the drug that was the main cause, but the damage (large blisters on the soles of my feet, and sore finger tips) will take a while to subside.


[…]

Well, now I’ve got a severe case of Hand-Foot Syndrome. The cure is to stay off my feet, soak them in cold water and put ‘Bag Balm’ on them. I use crutches, wheelchairs and the electric carts at some grocery stores. If I go out at all.

She has lost her hair. They are measuring progress in blood counts:
The [CA125 level of] 63 was from a blood sample Thursday, Feb 2. Down from two weeks earlier at 116.
I looked up this cancer antibody test, but I honestly don’t know how reliable a yardstick it is for day-to-day monitoring.
On February 20th we hear:
Her CA125 from Feb 16 was 40, down from 63 two weeks ago, and 624 at the worst on Nov 8, 2011. “Normal” on the kind of test that they use at SCCA is 0-35.
On March 3rd, we hear that Janet is in the hospital with a perforated bowel. We don’t hear what caused it in the post, but in her “about us” page she says that:
“[…] Janet’s ‘digestive problem’ was diagnosed as ovarian cancer.”
She’s out of the hospital on March 7th, and on the 23rd we hear:

Janet saw her Seattle Oncologist today and got very good news. Her CA125, which is the testing method where “normal” is 35 and below, came back 25!!

On April 2, we find out that she was at yoga class when the perforation occurred and that she is now on the Gerson diet (I strongly doubt that she is doing the coffee enemas with an ileostomy). Apparently the adhesions that cause the next few, blessedly brief, hospitalizations are not uncommon for ovarian cancer patients.
By March 8 we hear she has had no more bowel problems for a month.
Things seem uneventful for several months, as we hear in July 15th:
“Janet is still showing “normal” test scores. That is, the sorts of numbers that a cancer free person has. But, she has one last chemo on July 19, a PET/CT scan on the 30th, a Dr. visit on Aug 2nd and then about 6 weeks later, remove her ileostomy.
On August 8, there is goodish news. It’s kind of a mixed bag.

As you know Janet had a PET/CT scan on the 30th. 45 minutes in the machine with catheter and all. A very elaborate scan. Then Janet saw her doctor on Thursday, Aug 2.

The good news is that the tumors that were seen in the PET scan from Dec 28, 2011 are gone! They were around, but not inside, the liver and in a few other areas. They seem to be gone. The other news is that her CA125 has come up some, but inflammation and many other non-cancer things can cause that.

They were going to have the ileostomy out on the 21st of August, but something horrible happens:

The bad news is that there is new cancer and they were not able to do the takedown or bowel repair.

We are sorry that some of you are hearing this first via the Blog and not by phone or personal email, but we are kind of shocked and also busier than usual. […]

The goal now is to recover from this surgery and then begin an “alternative therapy”. They are doing tests on the tumor samples to see which chemotherapies would work best if we want to go that route. We are keeping all options open, but are leaning toward alternative.

And they do decide to continue on the alternative route:

Janet is going to beat this using the alternatives. Some of our close friends are devout Orthodox Medical practitioners or fans there of. We are sorry that we are going to stress you, but if it is any consolation. She has the Official Opinion from several Orthodox Medical doctors, including her Seattle oncologist, that Orthodox Medicine can do no more for her. So, it is not like she is “refusing help from the Heroes of Orthodox Medicine and being lured away to the Snake Oil Folks.” Your Heroes have written her off.

It’s sad to think what they might have been able to offer back when they decided to go to Burzynski. And now, certainly, they would be able to offer palliative care and help keep her comfortable. The “orthodox” MDs had potentially offered 3 or more years. Burzynski offered an 85% improvement rate, and she got about a year, which is what what about 50% of patients with her type of recurrence have.
In the last months, they are looking into energy medicine, mushrooms, and other unlikely, implausible treatments. They end up going to an “integrative cancer center” in Reno, which I can’t believe is a legal thing. They never managed to correct the problems with her lower intestine; when they finally found a doctor who would do surgery to try to remove the obstructions, they found it just full of cancer. Janet was very dignified and decided to forgo other care. She passed away in Reno on the morning of 17 January 2013.
Burzynski’s treatment seems to have not measurably influenced the outcome.