Category: Uncategorized

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.

Burzynski Patient Edward P’s Story

This installment is going to be a little bit different as there is primarily one source, but it comes straight from the Houston Chronicle (5 Jan 1997), so I trust it is reliably trying to get the story correct. The reason why we tend to believe Edward’s widow, Michele, is because her account lines up precisely with so many other stories on this website.

Edward P. had brain cancer, a glioma. It was diagnosed in 1995, when he was 28. He underwent surgery and had radiation therapy, which seems to have delayed the progress of the disease. In March of 1996, however, the tumor came back. A course of chemotherapy was apparently offered, and with it a 30% chance of recovery. (This seems high to me.) Edward and Michele elected to go to Burzynski’s clinic based on something that they had seen on CBS’s 48 Hours, who I hold responsible for not protecting the community or doing due diligence on this case. This man is still out there, still doing exactly the same thing to patients, and you let him get by you.

In May 1996, the family went to Houston to begin the antineoplastons. They spent the customary 3 weeks learning how to administer the therapy. They were home by early June. On June 10th, Edward was behaving oddly. Michele called the clinic and Edward was admitted to the emergency room. There doctors found that the glioma had gotten into the lining of the brain and was blocking cerebrospinal fluid. (This made a friend of mine ineligible for an experimental treatment at St. Jude.)

What happened next is absolutely unfathomable.

While the doctors said that Edward was dying (such a blockage is a severe complication), Burzynski, when he was given the MRI, according to the Chronicle, told them “the medication was working and that he saw no evidence that the tumor had invaded the brains lining” (meninges). As Michele described her June 14th meeting with Burzynski to the reporter:

“He blew off the tumor. This man was telling me that my husband was going to make it when the other doctors were telling me my husband was going to die.”

They stuck with antineoplastons.

During the last week of June, they were told the same thing again. According to the Chronicle:

“[Michele] said [Burzynski] told her that the U.S. Food and Drug Administration said he could no longer treat her husband, but that he could not stop her from continuing. He told her the dosages to use.”

This is by itself bizarre. Edward continued to decline, and on July 12 Michele called the clinic to tell them that they were discontinuing treatment. Edward died on 14 July 1996.

By itself, maybe the doctor was just wrong. It happens. But we have seen this OVER AND OVER. Burzynski or his staff tell patients, apparently as a matter of routine, that worsening symptoms are indications that the patient is getting better. This is not a fluke. Need I list the patients who have reported over and over and over the same thing?!

See the cases of Evan WJustin BGeorgia MCody G,  Leslie SDomenica P, and Chase S. Think of Kiwi L and Amelia S.. What about the nurse who told John D.:

“[…] she’s been there for 10 years & has seen this before & many times, the more severe symptoms that are seen as a result of the therapy is really a good sign that it’s working better.”

What about Leo D? And now Edward P. THIS is why this site exists. To put the  experiences of patients in the context of the experiences of other patients. This has been going on for decades–this same line has been fed to how many patients? God only knows! And they put off other treatments to see this quack.

But that’s not all. There is some question about what this family was told, why they even decided on Burzynski in the first place. Michele claimed that they were told that they were told that there was an 80% chance of recovery. The Clinic’s spokesperson, Dean Moucher, replied:

“Every patient signs an informed consent that states very clearly that the treatment is experimental in nature, that we cannot promise a cure, that we cannot promise a response and we cannot promise anything whatsoever.”

I’m sure he means, “…other than a HUGE whopping bill.” Michele admits she signed the informed consent form, but she sticks by the statement that Burzynski and another doctor quoted 80%. I’m not going to accuse a cancer patient of lying.

This self-serving, legalistic defense of clearly deficient care–care that is part of a pattern now stretching back decades–is abominable.

Michele reported charges totaling $32,000 for seeing Burzynski. This included 15 charges of $200 for two-minute calls to the clinic. Barbara Tomaszewski,  Burzynski’s account manager, said these were for calls that the clinic had made. Michele said that she initiated the call terminating treatment and that the clinic charged her $200 for it. I’m not going to accuse a cancer patient of lying.

Barbara was stone cold. She was the one who shook down breast cancer patient Denise D. As Denise told it at the time:

When I talked with Barbara T (the Financial Manager) at the Burzynski Clinic and told her that the charge of $1000 per infusion AND an Additional $1500/month to handle” the (3 small vials of) Zometa was just more than I could afford, she told me “Well, we have to survive here”.

Excuse me?  How About Me Surviving Here?  If I can’t afford to stay at the Clinic, then I can’t pay for You to “survive” and if I’m dead, then I certainly am not paying for Your “survival”…

And it’s not like the damage was limited to just Michele and Edward. Edward’s parents mortgaged their house to loan the couple $30,000. The Clinic benefited from their desperation too.

We challenge the members of the Burzynski Patient Group to consider this case. How is this ethical? How is this even competent? How could you support someone who has done this to so many people for so long? And why would you expect them to be any more honest with you, especially when you’ve shown that you are willing to fall all over them? There are dozens and dozens more cases just like this waiting to go up. Do you really support the people who are behind this? At what point will you doubt yourself?

We’ll let Michele have the last word:

“Maybe I’ll deter someone someone else from making a bad decision. And it was a bad decision.”

Burzynski Patient Juliana B’s Story

Juliana was a week shy of four-years old in 1996 when she was diagnosed when she was first diagnosed with medulloblastoma. Juliana received surgery, radiation, and chemotherapy between then and 1999, and she improved greatly. In 2000, she was back being homeschooled and the family was counting the months until they could declare her cancer to be “in remission.”
Unfortunately, the cancer returned in January 2001. She underwent additional surgery on April 9, 2001, which was projected to extend her life by 6-18 months. The family, however, looked frantically for something more. In May 2001, we hear:
May, 2001 – After extensive research and learning we selected a safe and effective experimental treatment. Unfortunately, our health insurance did not cover this type of treatment. It is also difficult to qualify for this treatment due to FDA limitations. Repeating already failed conventional treatments like chemotherapy and radiation were not desired by our family. These poison-based treatments have very drastic, often permanent side effects on children. Likely side effects are: loss of hearing, vision and hair, mental retardation, organ damage, spinal growth deficit, weakening of joints, and secondary cancer. Minor permanent side effects are already present in Juliana due to previous treatment.
They are going to the Burzynski Clinic. It is very sad but completely understandable that the family considers Juliana’s treatment to have failed; they are, after all, exactly where they were when the whole ordeal began. Nonetheless, she has been with them for years now because of conventional medicine. Extending a child’s life a few years doesn’t seem like much when the prospects of a happy adulthood seem erased.
The family is gearing up to raise funds for their daughter, because unlike other experimental treatments, Burzynski’s antineoplastons are never free. Oh, sure he doesn’t charge them for the chemotherapy itself (ANP is dangerous chemotherapy) but patients report extravagant bills for the incidentals of care. (For an example of this insane and unethical practice, see Supatra A.’s story.)
Juliana was approved for the ANP clinical trial on the 16th of May. That clinical trial, like all the 60 other trials patients have paid for, remains unpublished. The family’s plight appeared at about this time in the 18 May edition of the Atlanta Journal-Constitution. The article is riddled with misinformation:

“The first time around, we thought we went through hell,” said [B], whose daughter Juliana has medulloblastoma — an aggressive childhood brain tumor. “It was a big roller-coaster ride. The waves have become smaller as the years have gone by, but now we’re back on that roller-coaster again.”

[B] would like to see Juliana receive a treatment that has been popular in Europe for decades and is slowly gaining acceptance in this country.

The medicine, antineoplastons, teaches the immune system to recognize and attack cancer cells. Initially, it is taken intravenously and in pill form later.

The medicine’s only side effect, [B] said, is increased levels of sodium, which cause patients to drink more and urinate more frequently.

This is not remotely true. 1) Antineoplastons are still deemed neither safe nor effective by the FDA. 2) The Burzynski clan has not identified a molecular target that the treatment is supposed to work on. 3) Lack of ANP has not been identified as a contributing factor to any cancer. 4) I’ve never heard that ANP teaches the immune system to attack cancer cells, and no mechanism by which it possibly could has ever been posited. 5) The increased sodium level is one of many possible side effects associated with the treatment, including interminable port infections and strokes in children (see Elizabeth K and Haley S’s stories). According to ANP trial consent forms that one former patient sent to this website, the side effects range from:
  • 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 104C;
  • 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…
….and so on. There are three pages of side effects in the consent form. In light of this, it seems unbelievable that Juliana’s parents, if they were properly informed about what they were getting into, would tell the AJC:
“There’s no throwing up, no need for a feeding tube in her stomach, no loss of blood cells and no hair loss,” [Mr. B.] said.
Anyone who suggests that antineoplastons is non-toxic is uninformed. Many patients end up on feeding tubes while on Burzynski’s treatments. (See Supatra again, Leo D., John D., Bursynski employee and patient Paul L., and Evan W.)
At this point, it seems Juliana’s father had lost his job and could not afford the projected $16,000 initial 3 week visit to the Clinic, and he appeals for funds. (Cost overruns can apparently accumulate silently, and the patient gets whacked with a bill and heavy debt.) Meanwhile, his daughter is losing control of her muscles, control of her left eye, and her gait.
The family hopes that by end of the month they will be in Houston starting treatment.
According to the family’s geocities site (resurrected by the Wayback Machine), MRI results came back in August:

7/10/2001 – We are very excited to share some really good news with you. We just received the results from Juliana’s last MRI from 7/9/01. The last line of the report reads: “There is no evidence of residual or recurrent tumor seen.”


This is based only on the MRI pictures. Which means that there are no big visible tumors, but we still have to continue the treatment and hopefully completely eliminate all remaining cancer cells.

[…]

Little by little we are getting used to the routine of our new life. Mom is not only home-schooling any more but also became a 24 hour nurse. Juliana needs to be connected to her IV medicine pump six times a day, around the clock.

Our insurance company started to reimburse Juliana’s providers but only at a rate of about 35%.

This is surprising because most insurance companies won’t go near Burzynski.
On August 2nd Juliana goes into the hospital:
[…] Juliana was admitted to ICU due to an unexpected, hard to control seizure. Now, two days later she is doing better but very week. Please pray with us for fast recovery and good decisions by her doctors. She spent most of this day just looking around and recovering her normal breathing rhythm. On her last MRI there are no identifiable tumors but a few tiny nodules that may just be part of the post operative scar tissue. Hopefully that’s all they are.
In a few days, Juliana’s family reports that she is reaching her maximum dose of ANP and is experiencing weakness. Further, she is experiencing rashes and
On Sept 18, we hear that she is looking good, but the family can’t exactly say, only hope, that she is getting stronger and healthier.
Juliana’s birthday is just a few days away on September 2*. but the party will be on Saturday the 22nd. She is feeling great and looking good, I hope this means that she is getting stronger and healthier. The last MRI 9/4/01 concluded no change, “stable” condition.
And in November, Juliana’s insurance company stops paying for Burzynski’s treatment:

11/16/2001 – Dear friends. An official denial was sent to us today from our HMO that they refuse payment to Juliana’s providers. While we are trying to figure out the reasons and how to appeal, one of the hardware suppliers already stopped shipments. We have supplies only for a few more weeks.

It’s hard to see the family learn this, especially after seeing it happen over and over. Currently Burzynski is facing yet another lawsuit due to billing issues.
In mid-December, we get another update:

12/14/2001 – The last MRI from two weeks ago revealed some sad news for us. A new tumor was discovered in the area where the original tumor started five years ago. Juliana’s doctor recommended that we raise her dose by about 25%. Unfortunately our insurance company has blocked payments to our supplier and we can’t continue the treatment.

Juliana is still alert but tired and takes several naps a day.

What indication have we had that the tumor has responded at all to the antineoplastons up to this point? There is no ringing success anywhere, nor even the illusion of progress. I don’t know what would justify increasing the dose of a treatment that seems not to be doing anything.
It’s hard to see what treatment she is getting, perhaps some palliative care. The record becomes more attenuated after they are off ANP.

03/30/2002 – Welcome back. Please forgive me for not posting any updates for the past many weeks.

To some of you it is not clear where Juliana’s condition stands these days: Because the last MRIs in December indicated returning tumors and our insurance company paid very poorly, the medication was discontinued. At that point her doctors could not predict anything specific, but they said she could have a few more weeks maybe two months before the major functions will be effected.

Since than she lost some of her balance and gained a few pounds. These changes make it difficult for her to walk more that 20 minutes at a time, so she likes to stay home and watch videos from her extensive collection. Despite of the walking problems, we managed to spend three wonderful hours at the Atlanta Botanical Gardens last week, where I pulled her in a little red wagon while she was taking pictures of hundreds of beautiful orchids.

At this point it is a waiting game, it seems. But the outcome seems to be clear. Luckily, the family has several more months with her, though I don’t have a good sense of how she is feeling. It seems that she is fading slowly over months and months. She passes away well over a year later, on 11 Sept 2003.
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 Daniel H.’s Story

In 2010 Daniel’s stage IV glioblastoma multiforme returned. It had been a long road to this point, which he kept a record of in his blog; he gives a quick summary of his journey to Burzynski:

I sometimes wonder how I got to the point where I’ve exhausted all of the treatment options in the last four years. But, then again, I was given a 2-3% chance of living 3 years…so I am blessed. Craniotomy #1, 6 weeks concurrent chemo/radiation, two more rounds of chemo, two more craniotomies, 19 Avastin infusions and five more chemo rounds.

In 2011, doctors discovered a metastasis in his corpus callosum. It was inoperable.
In early June 2011 Daniel is in Houston, starting ANP. The costs are, of course, outrageously high:
I am starting a phase II/phase III clinical trial for the antineoplaston gene-targeted therapy for Glioblastoma patients. All of the major university clinical trials have turned me down. And this is my best option. Although the actual medicine is free through the clinical trial, there is a continued cost of $7600 /month for daily nurse consults, lab work, extra medication and much more. Like I said extreme. As this could take eight months or more.
I don’t know what starting a “Phase II/Phase III clinical trial” means. The only phase III trial was for optic pathway glioma which Daniel does not seem to have, and it never started recruiting. What was he told?
Well, apparently he was told by someone:
They are having a 20-30% success rate with GBM patients, which is a heck of a lot better than the 2-3% success rate for standard therapy I have been on.
This is completely unsupportable. The trials that would allow Burzynski to make this claim have never been performed, and for anyone to say otherwise is deceptive. I wonder if he heard this from someone at the Clinic or from the patient group?
He says that the treatment cost $23,000 to begin, which was raised for Burzynski by caring friends and family.
Daniel is undergoing the typical ANP regimen:
I have a port (hole in my chest) and I carry around a bag that delivers the medicine day and night. It’s a tough regime and I am on steroids, but seem to be doing better each day, including experiencing symptoms of tumor breakdown.
What are the symptoms of “tumor breakdown”? From everything that I have read, it is the side effects of antineoplaston chemotherapy. (ANP is without a doubt chemotherapy with truly unpleasant side effects.)
In July, Daniel mentions some unconventional beliefs, it sounds like, in the cause of his cancer. That there is a virus that is somehow interacting with the environment:

I can relate to this verse as my head feels on fire 6 times a day seven days a week. I take steroids to reduce inflammation, but before they kick in, inflammation rises as they somehow feed this strange virus that is somehow related to my environmental issues.

We learned of hyperbaric oxygen chamber treatments as a way to help kill this virus and instead of the traditional $100 cost of a session, there happens to be a doctor in podunk Rossville, GA (just 20 minutes up the road) who does them for 35 bucks. I can’t help but see God’s hand in this.

By the 11th, he is on his full dose of ANP and getting 4 blood tests a week.
On the 18th, we hear that the tumor is still growing:
My first MRI report obviously shows growth, but the clinic sees that in most all their cases.
That’s because ANP probably doesn’t work. The false hope that they shovel down the throats of only the most desperate is disgusting. He continues to have seizures several times a week, and he is feeling a number of worrying symptoms, including:
…balance beginning to slightly fade, seizures, head pressure[.]
On August 9th, Daniel died. As far as I can tell, the antineoplastons did nothing but cost.
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 Supatra A.’s Story

In retrospect it is hard to believe that it took so long for Supatra A. to receive a diagnosis. In late November 2010, the 5 year-old was stumbling and actually knocked herself out. The GP thought she was OK, and when symptoms continued, it sounds like the family thought it was a concussion from the fall. However, a friend of the family who was a physician noticed asymmetry in Supatra’s face and encouraged the family to get her into the hospital. On January 26, 2011, the family were taken aside by a team from the hospital:
[…] Supatra had a brain tumour called Diffuse Intrinsic Pontine Glioma and that it was incurable and that the median survival time was 9 months. The doctor proceeded to tell us that the only hope of slowing down the progression of the tumour was immediate radiotherapy. She also stated that we should consider celebrating Supatra’s birthday and Christmas early.
Radiotherapy began on the 3rd of February, and the family sends away for what looks like folk remedies from Thailand, where they have family. Some of the symptoms were alleviated by steroids, but she had a strong reaction to them and by the end of February her appetite has grown significantly. Through March, Supatra is on radiotherapy, and she feels sick often.
On 16 April, Supatra had her follow-up MRI to see what affect the radiotherapy had on her tumour. It was good news in that the tumour shrank quite a bit but there was also a residual shadow around the remaining tumour and the doctors did not know how to interpret this. It was either dead tumour cells or something else.
A few days later the family is on a Make a Wish Foundation trip to EuroDisney. The next several weeks seems to be a constant fight with steroids, adjusting, and dickering with the doses.
In the first week of July, during a trip to Wales, Supatra’s parents decide that they will go to the Burzynski Clinic. The father makes an observation that is telling, and I think that it justifies the existence of this website:
After we came back I sent all the required info and they determined that Supatra could participate in the treatment outside of a clinical trial as they had recently completed Phase II trials and were trying to prepare for Phase III. However, as we progressed through July we (mainly me) continued to have doubts about this clinic only because I found it very difficult to find people that had undergone this treatment and post or blog in detail about their experiences with the treatment. I found this odd considering that according to the clinic hundreds of people have had a ‘complete response’ to the treatment. I also read numerous articles by medical practitioners on why Antineoplastons don’t/won’t work. It is very frustrating research as one day I would feel really good about the prospects because of something or several things I read and then a day or two later I would have my doubts because of something else I found. To go or not to go is the question?
That phase III trial, of course, never got off the ground, and Supatra would not have been eligible for it anyway, as it was for optic nerve glioma. Burzynski’s trials never get off the ground. They never get trials published. Ever. Here are over 60 unpublished trials, his complete repertoire of failure, as it were.
On 3 Aug 11, Supatra had another MRI scan to see what is happening with the tumour and we got the good news of stable disease. However, we also know that this is still within the honeymoon period after radiotherapy and therefore we are keeping our fingers crosssed that she remains stable until well after we get to Houston to start her on the Antineoplastons.
The family is going to take the QMII over to the States and then drive to Houston. They leave for the US on 29 August. The night before they set sail, Supatra’s dad discusses the problems he has with getting doctors in the UK to sign on to the treatment:
I find the search for a supporting doctor in the UK very frustrating. I don’t see where the problem lies even though Supatra’s Dr. has explained her and the oncologists teams position. A Dr. just needs to monitor, pass on medical info to the Burzynski clinic and be responsible for ordering blood work and MRI scans and more importantly needs to assert that they are Supatra’s Dr so that the FDA and the Burzynski clinic can be sure that an out-patient has medical support in their region. The UK Dr. keeps saying that they do not know anything about the treatment but at the same time they have not even contacted the clinic to try and determine what information and help would be provided to them and get in more specific terms what the UK Dr.’s responsibility would be. The UK Drs keep talking about Burzynski pushing off responsibilities and risk onto them yet this is no different then other clinical trials being held with patients in divergent locations.
It looks like the family has come away from their consultations with the Burzynski Clinic about how clinical trials are carried out in these cases, and I encourage you to explore that topic for yourself. Burzynski’s team seems to have suggested that if the family goes into a trial (with a hope of publishing) that they will receive either experimental cancer treatment or placebo. This is not how these type of trials are run, as it would be positively unethical to do it. The vastly more likely scenario would be a randomized trial of standard therapy versus experimental therapy. I encourage you to read the passage and see if that is a fair assessment of what her father is saying.
The family arrived in Houston on 5 Sept 2011:
On 7 Sep 11, we have our first appointment at the Burzynski clinic and on the same day she will get her baseline MRI scan done and we have a doctors appointment for Friday 9 Sep to get her sub-clavical catheter inserted. The clinic hopes to get Supatra started on the anti-neoplaston treatment by Monday 12 Sep 11.
On the 7th, they take the picture that so many other people have when they arrived.
Supatra’s dad reports:
By approx. 1130 Burzynski and the rest of the doctors came into the office and Dr. Burzynski proceded to explain some very basic information about the anti-neoplaston treatment. To be honest he did not really tell us any more then what was already available from his website and I think Burzynski’s presence is more for show then anything else as the other two doctors answered most of our questions. They did confirm that Supatra would need the antineoplaston IV treatment vice the capsules that they also use to treat other cancers as that was what worked best on her type of tumour. We were then asked to sign some more consent forms and waited some more for the next steps.
After lunch, they get hit with the bill:
Medical records review fee (initial application which we did before coming to Houston): $500.00
Initial consultation fee: $1000.00
Laboratory Deposit: $2850.00
Treatment Deposit: $10,000.00
Supplies Deposit: $1,600
Second months treatment cost (and cost each month thereafter): $7,600.00
New infusion pump: $7,000.00
Catheter insertion surgery: $3955.00
But that’s not all. And the father starts seeing how the Clinic deals with money:
The costs were not a surprise as these were explained to us prior to coming to the clinic but I did question some of the expenses that were further specified under the above headings which I feel should be discounted at least for the first two months because we are within the local area. These included items refered to as fees associated with being outside of the Houston area and considering we are now “local” and not international they should not be charged but they would not budge and stated these were already discounted prices compared to what insurance companies are made to pay. I was also told that I would need to pay and then make my own claim with my insurance company which is not what their international cliental representative told me. [emphasis added] Either way we came prepared to pay and want to at least try this treatment for the first two months and wait for the results from the initial post treatment MRI scans. If they show no affects then we can always withdraw from the treatment and we will go with plan B which is to take her to one of the main Cancer treatment centers in Houston and see if they have something else on the go that could help Supatra.
This is soooo fishy. Never allow someone to change the terms of payment on you. I’m so disgusted with this place. The family has already expended a huge amount to get there. The idea that they would simply walk away is absurd. The Clinic knows this and charges them out the wazoo. On the 9th, Supatra’s catheter is inserted in her chest.
During the next few days at the Clinic, they meet Olivia B.
We met another family from Hawaii that has a six year old daughter suffering from a GBM tumour that has metastasized. We talked a little about their experience with the Burzynski clinic and the treatment as they have already been here for a week. They were of the same opinion as us in that we as parents really do not have a choice when conventional medical treatment no longer is an option and you just have to do whatever is necessary to try and save your child.
Though we have not yet written about Olivia B, I am sad to report that she died in June 2012.
On 14 September the family starts Supatra on ANP and the family begins the training that will be necessary when they are inevitably forced to fend for themselves. In a few days, Supatra is feeling poorly:
We were told last Wednesday that as the antineoplastons work to kill the tumour cells it is normal for the brain tissue to swell with all the dead cells in there. This swelling is what creates the pressure and results in headaches and vomiting. If it occurs then we will start Supatra off on a low 0.5ml dose of Decadron steroid and increase as necessary.
This is bullshit. This is the “she’s getting well so fast it’s killing her” gambit. It’s not the first time we’ve seen it (see , and parents eagerly embrace the principle because it’s better than “the tumor is killing her so fast it’s killing her.” It could also just be the side effects of the ANP, which actually has rather strong side effects. Within a couple of days, poor Supatra has to wear diapers to go out to the Houston Aquarium, as patients’ water intake goes through the roof when they start on these sodium bombs.
On the 19th, the father reports:
Supatra is doing OK but I think some symptoms/side affects are starting to appear from the treatment. She seems to have a little brain fog, is more wobbly on her feet, has a little muscle weakness and feels more tired. The doctor discussed with us about her going back on steroids but we said that we wanted to wait a little longer; however, after our meeting with the doctor we had second thoughts and will probably put her on a low dose (.05mg) of oral steroids tomorrow morning as per the doctors direction.
On the 24th, we hear that well wishers back home are raising money for Burzynski and that the family is looking ahead to fundraising for Burzynski. It turns out that Supatra’s uncle in Thailand has taken an early retirement and is donating his entire $6000 retirement pay to Burzynski.
Nonetheless, on October 7th we hear that there have been more issues with payment at the Burzynski Clinic:
On Tuesday we had some issues with the Burzynski accountant when we found out that we had already burned through our initial deposit even though I was under the impression that this deposit would cover us for the full three week training term. They did not even have the courtesy to let us know that we had a $4,000 balance owing while we are showing up there everyday taking our time as we figured we were covered for the full three weeks. I will write a separate post on this issue and a few others that we raised for those that will come after us to the Burzynski clinic so that they have all the facts before they come. The Burzynski staff to include Dr. Burzynski his son, a doctor and Vice President of the Burzynski business, and their IR spokesperson all listened to our complaints and agreed to reactify some things and improve their services while deducting some minor expenses that we had issues with. Hopefully my post on this will be helpful to others so that they do not experience the same problems as we have had.
Charging extra for…being on site longer? This is such a damned racket. This is how it is at the Clinic. Whopping bill after whopping bill. They decide to start the discharge process the next day:
However, because of the financial surprises thrown our way by the clinic we told them we wanted to leave ASAP and start treatment as out-patients on a flat monthly case management fee of $7,600/month.
They also tell their friends that they will have to start their fundraising immediately, as the Clinic has blindsided them with additional costs. At least they did not do to Supatra what they did to Denise D, cut her off from treatment entirely (no step down) as she waited for a bill to arrive.
They still have found no doctor to take Supatra’s case back in the UK. That’s a HUGE red flag about Burzynski’s reputation.
On the 10th of October, the father writes an absolutely essential write up about how the finances at the Clinic are extracted from patients. The patient describes a bait and switch that we have come to expect from the Clinic. The systematic extraction of funds is so egregious and widespread throughout the account, I don’t think that I can do justice to the whole thing and respect fair use at the same time. So, I am going to link to the Wayback Machine, where the info will never be scrubbed.
According to Supatra’s father, the financial person could not account for charges, questionable charges were added, fees were surreptitiously added on, and the clinic allowed the family to run up a $4000 bill without telling them.
I was flabbergasted to say the least as I pointed out to the [financial] lady that I had asked for a detailed explanation of the $10,000 on the first day and she could not explain anything, yet here she is giving me a detailed list of costs that are deducted from the deposit. Of course we started arguing with her demanding to know why we were not told that we would be incurring such significant cost over runs and why the clinic could not come up with more accurate estimates of the first three weeks costs after having treated thousands of patients.
This is because they are not a reputable Clinic. This is what we are trying to convey to people investigating alt med cancer treatments. This was not the first time that patients have had this conversation, and it won’t be the last. The only procedure they do well at the Clinic is a wallet biopsy.
As an example, for the last week or so we were drawing the blood from Supatra on our own but at the clinic and they charge a $20 fee for this; so we had this removed. Some more examples of costs charged by the clinic to you is:$100 each time the doctor sees the patient
$95 each time you call the clinic out of office hours with a problem
$60 each day for training
$20 drawing blood
$395 per day for the treatment program
all lab work and then any supplies you use to include the IV bags the antineoplaston comes in.

Their $22,000 initial cost lasted them about 2 weeks at the Clinic. The father warns patients to prepare to pay up to $50,000 to visit the Clinic. It’s not incidental to these ethical lapses that the family still hasn’t found a doctor willing to cooperate with Burzynski:
This really is a no win situation and we must therefore find a doctor, someone, that is willing to sign this FDA form. I have been told it could also be a Homeopath doctor or a Pharmacist, it doesn’t really matter as long as there are doctor credentials attached to the name. Why, because the local surgery and Addenbrookes doctors are still obligated to look after Supatra and hence we would still be able to get her examined and have her blood analyzed privately.
This is not how reputable research is carried out. On the 17th, we see that the family is already exhausted by the ANP regimen:
Although me and [Supatra’s mother] are switching sleeping duties with Supatra every other night we are both getting very tired. It is becoming harder and harder to wake up in the morning in time to do the IV bag changes.
They see off patients Bille B. and Luna P. in October. They are both dead now.
They fly home on the 26th of October. They had an MRI before they left, which showed a 10% reduction, which is in reality not a lot, but the family holds on to that tightly, and who could blame them?
Back home, Supatra goes as a butterfly for Halloween and loves it, even if she has to use a stroller for some parts of it. Her teacher and friends are all really supportive and Supatra is happily back in class for short stretches. They have warm wishes for the friends they made at the Clinic:
Best wishes to Olivia, Luna, Joseph, Leyel and Billie; hope you are all doing well and on the road to full recovery.
I can’t find Joseph, but the other patients are all dead, including Leyel, who died the next January. The father seems to be in the Canadian Forces, is stationed in the UK, and is having a lot of problems coordinating with the NHS:
The Wednesday oncologist appointment was rather disappointing as they continued to insist that they could not support any of our medical requests like blood work and MRI scans which are associated with the treatment regimen. So much for the NHS. I certainly hope our system in Canada will not treat us the same.
Yes. You often lose access to real doctors and medicine when you sign up with Burzynski. It’s sad, but true.
On November 9th, we hear that Supatra is lethargic:
She is now the same as she was the last week in Houston, very lethargic, non-engaging, and weak. Over the last few days she has stopped eating and only nibbles from time to time. It has been a week since we took her off the steroids and I think the lack of appetite is a combination of coming off the steroids and the copious amounts of water she needs to drink with her treatment. The doctors have not yet suggested lowering the dose although me and Punny think that is what needs to happen. The last two blood works show her potassium dropping (making her more lethargic and overall sleepy) and her uric acid (indicates tumour breakdown, which can result in increased pressure within the brain) and sodium (which can elevate pressure within her brain) levels increasing.
They also interpret her bump in the uric acid levels to be a good sign:
The high uric acid is good news because it means the tumour is reacting to the treatment although she must now take a drug to help lower it. The high sodium although not at max is a problem and we will have to watch this closely and ensure we strictly monitor her sodium intake through food.
This seems a little premature, if I may. While a rise in uric acid levels may accompany chemotherapy and be caused by cell death, it can also precede chemotherapy, so it’s hard to say. They are interpreting it favorably when it may not be so clear.
Two days later, on November 11th, Supatra is lethargic and less and less responsive. Her father is quite eloquent and the story of what happens next is vivid and compelling and you should read it. They put her back on steroids, but she is unable to swallow, and she is fussing and maybe dizzy or in pain and can’t tell them what is wrong. They take her to the hospital:
However, approx 30 mins after arriving Supatra started acting strange and went into a fit/seizure (according to what the doctor thinks) as she had this very frightened look on her face and could recognize us no longer. She would look right through us, pull us near and hug us and then push us away as if our faces were frightening to her almost like she was seeing something very horrifying to her. I was trying to remain calm but inside I was in a panic as I thought the worst was happening. Both me and Punny were very frightened for Supatra and started to cry while telling Supatra that we loved her very much and each hugging her. We just could not believe that this was happening after she was doing so well on the treatment in Houston and showing a reduction in her tumour only a few weeks before. After what seemed like 30-60 mins Supatra started to calm down and appeared to be a little more responsive to our voices and questions. She indicated that she could see us and we used hand signals to communicate.
The verdict? The doctor has one explanation:
The doctor told us of her thoughts that either the tumour or parts of it had started to regrow and was putting pressure on sensitive brain function areas or that she may even have had a small bleed.
The parents have another:
[We] both thought that another scenario could be that the antineoplastons were having such an effect on the tumour that it could have caused the main tumour to break apart (causing fast swelling/pressure) or have affected one of the smaller ‘fingers’ of the tumour with the same result. We just can not believe that these symptoms that Supatra was all of a sudden having is tumour regrowth.
I don’t think she can see at this point. She is on a feeding tube and is not communicating verbally. The MRI before she is released from the hospital on the 14th (still unable to swallow) shows no noticeable changes to the tumor, but she is in a daze, not entirely there, and may have lost eyesight.
On the 20th, we get another update. Still lots of problems and there is no real certain way forward:
Since last update, Supatra continued to improve in her symptoms and so we (us and the Burzynski doctors) decided that we should re-start the antineoplaston (ANP) treatment on Thursday 17 Nov 11 on a low dose. The Burzynski clinic concurred with this plan and so we did just that. However, on Thursday early evening Supatra again had an episode like the week before; out of it, reaching out for us and wanting to hug, crying and making repetitive upper limb movements. We immediately took her off the ANP treatment and gave her her second scheduled steroid dose for the day. This did not improve the situation but we thought that coming off the treatment – if that is what was causing the reaction – would reverse the symptoms as before. However, over the course of Friday and Saturday Supatra did not get better but instead declined a little further not able to communicate properly although still talk and say words and she was very active/ agitated and would not sleep the first night and only a little on the Friday night.
The doctors want to see if she is perhaps having seizures or maybe if there has been brain damage. It’s a sorry state for the family.
It is heart breaking seeing Supatra in this condition and we keep trying to talk to her to let her know that it is us, her parents and that we love her. We have to constantly watch her as she tries to stick things in her mouth and rubs her left eye which is also irritated and bothering her. Her repetitive actions are continuous unless she is pre-occupied with an activity like walking or sleeping. She can not draw, count, nor do her ABCs. I don’t know what to do anymore.
By the 22nd, she is recovering slowly, but is off treatment.
Supatra is eating, talking, laughing and playing like she normally does and we are very happy to have her back again. We have also discussed our options with the Burzynski clinic doctors and we have the green light to start her back on the antineoplaston treatment on Tuesday 29 November. In order to be extra cautious we will re-start her treatment as if for the first time at an extremely low dose of 10cc for the AS-10 and 5cc for the AS2-1. Then the AS-10 will be increased each day by 10cc and the AS2-1 by 5cc every three days, until we reach the target doses.
At this time, the story of the A. family intersects with the story of Bille B.’s family. Billie was receiving a lot of press at about this time, and Supatra was mentioned in some of the news coverage. They hope to reach the target dose on Dec 18th. The month seems blessedly uneventful for the family and Supatra has a good Christmas surrounded by family from all over the world. January and February are mostly uneventful as well, though the Feb MRI shows a little lopsided growth. She is experiencing periodic rashes. She has an MRI scheduled for March 22. On the 25th we get an update:
The last week or so has been an emotional roller coaster ride for me and Punny as we watched Supatra getting more poorly almost on a daily basis. Over the last while Supatra has been getting noticeably weaker in her limbs and then her tiredness increased as well to the point where she was dozing off at least 4-5 times a day even when engaged in an activity. One minute she would be alert and the next she would be asleep and/or nodding off. Then at about this time last week we noticed her speech dramatically slowing and she was having ever more difficulty chewing and swallowing
They fiddle with fiddle with the steroids over this time trying to prepare her for a blood test, but she’s so up and down it’s hard to tell how much of a direct effect the adjustments are having. The MRI in any event shows less enhancement but no shrinkage. In April, Supatra is somewhat weaker, her speech slow, but there’s not a lot of change.
In mid-May, the family started to take Supatra off of steroids, but there were some problems. She started to have lots of little symptoms, and at this point, the parents seem to start wondering about what they could be doing differently or better. I know it will haunt them, but my god they have been so attentive to every need and change that I wish I could tell them that they did all they could. This tumor never really reacted to the ANP (only notably to the radiation), and even though they are seeing very little change in the tumor, it sounds like there does not need to be a large change for it to have dramatic effects. As May continues, she is fading, getting weaker. Her eyes no longer both blink and she is often nauseated.
On May 28th, she was perky, up early and dancing for her parents, but in the evening, she was tired. She is sleeping a LOT. Their scan on the 30th reveals a new lesion on the brain stem. She is losing control of her body:
On Thursday 31st May […], Supatra’s symptoms did not change and she continued to be tired and very weak. I also noticed that her speech was even slower taking 10-20 seconds to sometimes react to our questions and then mostly answering in one syllable words, whispering no and yes to our questions. At this point we had to help her everywhere and we have this little potty chair that sits next to her bed and over these last few days downstairs when she is on the sofa so that she does not have to move far to go and wee. But at this point she even needed help with this and on occasions could only stand by making her legs stiff. Her ability to sit on the potty or loo on her own was now pretty much gone as she could noticeably no longer support her upper body.
She was losing control of her lower body as well over the next few days. And then she was non-responsive. And then she was gone. She died in the morning of 5 June 2012.
When I think what this family went through, what was in store for them as the Clinic stripped them of everything they could while they were there, I recommit to this cause. This type of stuff has been going on for far too long. See for instance the lengthy legal history which includes a case in 2000 where not only was Burzynski told by a patient that his billing practices were bad, but was sued for them. Trust me, he know. Trust me, he does not care.
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 Kathy B.’s story

[Note: This story is video heavy, and given the formatting problems that storify has been having, we’re just going to do the story here, not cross-post it like we usually do.]

Kathy B. had breast cancer. She was diagnosed on February 15, 2011. She kept a video journal of her experiences at the Burzynski Clinic in August 2011. While this is an important story, like all the others on this site, this one documents what happens when you are at the clinic in rather fine detail. And what you see how the Clinic deals with patients. Watch the second to last video, Kathy’s consult with Greg Burzynski. He knows she has breast cancer, and notice what he does not tell her the entire time. We’ll put Kathy’s own comments ahead of the video so you can see what is actually going on and maybe get a sense of what’s really happening at the Clinic.

Kathy is a raw food chef. Here she arrives at the Clinic:

She meets Renee, the Clinic’s PR person. No. Menial. Job. Kathy reveals that her family had pushed her toward proven medicine. She believes that her diet will play a crucial part of her cure.

Renee: “We’re going to take such good care of you.”

We’re going to hold you to that.

In the waiting room, we meet Gloria, a stage iv cancer patient who can trace her path to the Burzynski Clinic through Susanne Somers to the person at the health food store. It’s so depressing.

Even though she has told Renee that she does not want chemo, even though Greg Burzynski should know that Kathy is not eligible for ANP, we see that she signs on the dotted line, with the predictable result. In her words:

Uploaded on Aug 29, 2011

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 TRADITIOINAL ALLOPATHIC TREATMENTS OF SYNTHETIC ANTINEOPLASON 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. USING THE BLACK SALVE IS THE ONLY THING LEFT FOR ME TO DO.

It’s right there in the file, Greg! Look under “type of cancer” and then check it against your memory of the types of cancer that you can treat with ANP! Or maybe someone wrote it down somewhere! Then you can check to see if her cancer is on the list!

Or take her money. Great PR, Renee.

The depressing thing is that this rationalization trap gives the Burzynski boys a stay out of jail free card.  No, this is not part of your journey, Kathy. They could have been upfront. This was an unnecessary detour that made it harder for you to get other treatments.

Kathy stopped posting to her facebook page last year. She apparently posted something on her youtube channel about 6 months ago, and she sounded like she was still afflicted, but we have no information about how she ultimately fared. We wish her the best.

UPDATE, 17 April 2014:

We are very saddened to report that Kathy B. died in July 2013 from her cancer. Our thoughts are with her family.

Burzynski Patient Kiwi L.’s Story

On Friday July 31, 2010, Kiwi L.’s left hand had been spasming all day. The family went to the ER, was admitted, and after surgery at the beginning of August, she received a diagnosis of supratentorial primitive neuroectodermal tumor.
The family was devoted to alternative medicine, though I think that this would be “integrative” since they were working with physicians. The journey to the clinic was documented on the family website:
We became flooded with information. Most of it making us feel even more helpless. I also began to do some emotional work with myself and Kiwi, hoping that we could clear some of this which had manifested in our lives. We started working diligently with our homeopath and also with a system called Neuro Modulation Technique (NMT). We found ourselves a good holistic MD who added some great supportive supplements to our already existing regimen. […]
Kiwi’s first MRI in September was clean, it was about 7 weeks post op and there were no signs of re-growth, her spinal fluid was also clear of any cancer cells. This was really hopeful for us. After tons of research and being overwhelmed with information, we decided to pursue the Burzynski Clinic as an option for Kiwi’s treatment. […]
Well during this time of going from one person to the next, each getting us a little bit closer to Burzynski, Kiwi had another post op scan that was about 6 weeks after the first, about 13 weeks after her surgery, the beginning of November. To our surprise this scan showed that Kiwi’s tumor had returned and she also had about four smaller ones on the top of her brain covering.
Kiwi had another resection on Nov 10th. At the end of the month, according her blog, the family was frantically trying to get her to Texas. According to her grandmother, the family had obtained a compassionate exception through a senator in their state to receive Burzynski’s chemotherapy, antineoplastons. She was in the hospital at the beginning of December because of issues with her shunt, but was back home on the 5th of December.
On December 7th, the family was on its way to Houston to the Burzynski Clinic. They took the photo in front of the Clinic that that so many other people have:
And then they took a shot of the sign at the front, which I have seen before too:
On or around the 10th, Kiwi has started treatment. This involves an around the clock infusion on antineoplastons through a port in her chest.
While in Texas we had to be at clinic everyday at 9am. The treatment was very involved, we made her IV bags everyday which took about a half an hour to an hour, she was connected to the pump basically 24 hours a day. She would get an infusion every 4 hours and it would last almost 2 hours on average depending on her dosage. The antineoplastons were bonded with sodium so it made Kiwi extremely thirsty. Kiwi starting treatment was very surreal. She began to have a difficult time with a few things.
By the 15th, she has a fever:
On Monday at the clinic we saw the doctor which decided that since the cultures were negative at this point she wanted to have us talk to Kiwi’s neurosurgeon to see if we should go to Texas Children’s Hospital Emergency room to make sure her incision wasn’t infected. Well the neurosurgeon said yes, so Monday around 5pm Will, Kiwi and I headed to one of the biggest children’s hospital in the country.
She’s in the hospital (and off the treatment) for a few days, but they never find what caused her sickness despite a battery of tests, including an LP. Unfortunately, when she gets out and back on ANP, she has a seizure, and goes right back into the hospital. They are still in Texas over Christmas, and they report on the 23rd:
Kiwi re-started treatment again on Monday and things are going good. She had a little bit of a rough start and had to be put on a small dose of steroids but she is tolerating the treatment now. Hopefully the steroids won’t have to last for too long, it is just what we need to do now to be able to keep her on treatment. She has started drinking and peeing a lot which is really good. I have never seen her drink so much water
This unquenchable thirst is a side effect of the ANP and it’s high sodium dose. I’ve never seen anyone claim that the sodium was related to any supposed therapeutic effect. Constantly getting up to go to the bathroom, while it sounds like a minor side effect, suggests that it leads to a degradation in the quality of life for both the patient and caregivers.
The antineoplastons also made her pretty sleepy, along with constant copious amounts of pee. It was crazy how much input and output she had. It was a lot of work and a lot of adjusting for all of us. Kiwi had a difficult time getting used to being connected to the IV bags, and then that quickly shifted to her insisting on being connected. But she definitely was in the best of moods when she was free to roam without her pack once a day for an hour or so. We ended up being in Texas for about 4 weeks.
She pulls her ANP around in a Dora the Explorer roller bag.
On the 30th, we see that the family is on the verge of coming home, but there have been problems. Kiwi is on steroids because of pressure in her head:
We are headed home this Saturday, things aren’t perfect, but this is the next step. They seem to have become comfortable enough with administering the meds, the pump, the strict sterile environment necessary to avoid any central line infections, and the responsibility that comes along with all of the treatment protocol. Kiwi’s little system has taken a beating due to the antibiotic therapy in combination with the effects of the high intake of sodium based fluids, then the volume of output. All of this has created the perfect environment for thrush, and the vomiting has resulted in low potassium levels and managing the delicate balance of sodium has been tricky.
Like I said, this is a real side effect that can be shocking. To get a sense what happens to a kid who has this ANP thirst, watch the video about Luna P’s story (Luna took an almost identical photo in front of the Clinic.) Then we hear that goddamned line that every damned patient and parent seems to report, and is the prime reason that so many people have decided that 35 years is more than enough:
They have now begun to administer her steroids by IV, these are important in controlling the intracranial pressure which can result from the tumor tissue breaking down, which is ultimately a good thing. And fortunately the antibiotics have come to an end.
Getting worse is getting better. Increased pressure is improvement. Black is white, and up is down. It’s hard to read this week after godawful week, and I don’t plan this. This is what patients themselves report consistently. See the cases of Evan W, Justin B, Georgia M, Cody G, Leslie S, Domenica P., Chase S, and Andrea W. Think of Amelia S. Again, I think of the nurse told John D.:
“[…] she’s been there for 10 years & has seen this before & many times, the more severe symptoms that are seen as a result of the therapy is really a good sign that it’s working better.”
Further, the steroids have depressed her immune system to the point that she has thrush, a fungal infection.
They are home in the first week of January, and the family is trying to plan how they will raise the anticipated $7,500 the Clinic has promised to charge them. She is swelling from the steroids. She has an MRI on the 26th. Between the 14th and the MRI, however, she is in the hospital twice for low red cell counts. Then the MRI:
After arriving to the ER they decided to keep her do an CT scan and take cultures of the site and her blood. The scan looked good, which is encouraging for more than one reason. Ct scans are not as detailed as the MRI, but as far as the first look and what we have been told there hasn’t been huge tumor regrowth, we are so excited, the treatment seems to be working!!!
This optimism is what snags people in Burzynski’s care. It is a relentless optimism. By the 29th, things have changed dramatically:
Most of you know, after Kiwi’s second resection surgery, we worked very hard to get her into an FDA Clinical Trial at the Burzynski Clinic in TX. That part of our story is in earlier Blog posts. We spent a month there, Christmas included, in training and starting her treatment. We continued the demanding treatment protocol at home and were extremely hopeful based on the history of antineoplastons, that this treatment offered incredible possibilities, and little if any side effects, and it was non-toxic. […]
If any? I have to disagree based on what I have seen here. The steroids and ANP seem to have made things very difficult.
However, the MRI that they moved up to Tuesday evening didn’t bring with it any good news.Kiwi’s tumor growth has continued, and at a rate which suggests that the TX Clinical Trial treatment either isn’t working specifically for her, or the aggressive nature of this tumor has created a situation in which the antineoplastons simply aren’t working fast enough.

The rationalization that somehow ANP must work (just not fast enough or only in other people) is…it’s the voice of someone who really believed.
6 months after the diagnosis, the family pulls Kiwi from ANP and begins with chemotherapy, which the family had originally resisted. The tumors actually respond to conventional chemotherapy, but they came back. Kiwi L. died on Nov 17th, 2011.
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.