Category: cancer
Burzynski Patient Alyssa A.’s Story
In 1993, when she was 5-years old, Alyssa A. was diagnosed with anaplastic ependymoma. She had surgery, radiation, and chemotherapy. As a result of conventional treatment, she had, according to her mother, no evidence of disease until January of 1997. She did, however, have slight facial paralysis damage to the pituitary gland from the treatment. The side effects of conventional treatment can be awful, make no mistake.
The tumor started growing again, and the family, according to a Riverside Press-Enterprise article from 15 February 1997, decided to forego a second surgery. By this time they had decided to go to Burzynski. According to the reporter, who was I’m sure trying to help:
Dr. Stanislaw Burzynski of Houston uses fluids that occur naturally in human blood and urine to treat cancer and the treatment reportedly has none of the side effects of chemotherapy.
By reportedly, they most likely mean, the family reported it. Burzynski’s own informed consent disclaimer (and the long record of testimony here) clearly demonstrates that the treatment can have awful side effects. According to Burzynski:
But other than that….totally safe? Not a chance. According to the same article:
Family and friends are helping [Alyssa’s family] raise the $16,000 for Alyssa’s treatment by holding a car wash and bake sale at the Harvest Christian Fellowship Church today. Right now Alyssa’s tumor is the size of a green pea. If it grows larger than 2 inches before the [they] raise the money, Alyssa will be excluded from the clinical trials, [her mother] said.
That $16,000 is likely the startup fee for the antineoplaston treatment at that time. In this article, they make no mention of the vast sums that Burzynski typically extracts from people who stay on his therapy for months. They raise $3000 in a few weeks, but then another appeal appears in the same paper of 22 Feb:
[Alyssa’s mom] said the therapy could cost as much as $40,000. The initial therapy, she said, costs $16,000 and followup treatments that cost $2,000 per month can run four months to one year, depending on the complexity of Alyssa’s case.
There is scant info about what happens when they go to Burzynski. What we know comes from 2 posts a cancer board hosted by MIT, after Alyssa was off treatment and had at least 2 tumors. On 23 July 1998, the Alyssa’s mother told another person looking into treatments:
Jessica, my name is […] and I have a daughter named Alyssa who has also been to the Burzynski Inst. for antineoplastons my daughter also had problems on the therapy. Alyssa had seizures and went into a coma for three days, but her tumor was shrinking in any event we discontinued that treatment.
How did this happen? We find out in a post from 1 Aug 1998:
I infused her with antineoplastons for ten months with good results. We still owe the man $98K, but after they pushed me to raise the dose of A10 to 200cc, she had seizures and we almost lost her. I did acquire [an] oral form [likely sodium phenylbutrate, which Burzynski also sells and which is the prodrug for ANP] from a patient that did not survive and she is on a safe dose. I have enough to get the job done this time. They are charging ancillary charges but not providing the care. I would not go to Houston again.
So, an overdose that may have put her into a coma for 3 days. Burzynski has historically had a problem not only with overdoses, but also with reporting them and preventing future ones from happening, at least according to the FDA, who during a recent site review found:
- Burzynski did not report all adverse events as required by his study protocols. One patient had 12 events of hypernatremia (high sodium), none of which was reported. There are several similar patients.
- The FDA told Burzynski: “You failed to protect the rights, safety, and welfare of subjects under your care. Forty-eight (48) subjects experienced 102 investigational overdoses between January 1, 2005 and February 22, 2013, according to the [trial number redacted] List of Hospitalizations/SAE (serious adverse events) [redacted]/ Overdose [redacted]/Catheter Infection report. Overdose incidents have been reported to you [….] There is no documentation to show that you have implemented corrective actions during this time period to ensure the safety and welfare of subjects.” [emphasis added] It seems that these overdoses are related to the protocol, which requires family members to administer the drugs via programmable pump on their own. Further, patient records show that there were many more overdoses that were not included in the Hospitalization/SAE/Overdose list.
Poor Alyssa may probably be counted among those patients whose overdose, in her case in 1997, should have triggered changes to the protocol to prevent other patients from “almost losing” their children. But he could not demonstrate that he ever did, and the human wastage piled up until 2013 as the FDA, inexplicably, watched. ONE patient overdose should have triggered these protections.
Not only that, but if the family actually thought that the treatment could “cost up to $40,000,” like they told the newspapers, how could they possibly have had informed consent of the costs?
Alyssa died on 1 March 1999.
What is baffling, however, is how Alyssa’s mom’s memory absolutely does not square with all the press coverage of her daughter’s case. In July of 2014, when the FDA waffled and allowed desperate patients–mostly children–to die on Burzynski’s drug, Alyssa’s mom appeared on facebook extolling the benefits of ANP:
Non-toxic? By her own account, Burzynski’s drugs nearly killed her daughter. And she does not seem to remember that, even though there were some bad side effects, due to conventional treatment Alyssa was lived for years with no evidence of disease until the relapse. This is simply another example of how anecdotes should not be used as evidence of efficacy. People make mistakes.
h/t to the research ninja
Burzynski Patient Sophie M.’s Story
Sophie M. was 5-years old. Her parents took her to the doctor when her eye started blinking uncontrollably. Then she became unsteady and harder to understand. On August 23, following an MRI, the doctors at the Children’s Hospital of Orange County told her family that she had an inoperable brain stem tumor and said that she had months to live. (Sophie’s story was captured in the Orange County Register on 21 September 2000.)
Almost immediately, [the M. family] and members of the community began racing against time to raise money for a costly experimental treatment.
Before the [M family] left for Houston, where Dr. Stanislaw Burzynski administers the almost $15,000 per month gene therapy he says has saved hundreds of lives, 28 aunts and uncles gathered at the home of [Sophie’s father’s] brother-in-law to brainstorm fundraisers.
This was not Sophie’s large family’s first encounter with Burzynski. As reported in the 21 September 2000 Orange County Register:
“[Sophie’s father] says he is angry that insurance won’t pay for what he regards as his daughter’s last, best hope. After all, cousin Roman [M.] of Garden Grove, who first told [Sophie’s dad] about Burzynski, said the treatment reduced his 2-year-old daughter’s brain tumor by 85 percent.”
The daughter, Tori M., frequently asserts that she was cured of a brain stem glioma as an infant. Her family is among the most vocal of Burzynski’s supporters, however, there is reason to doubt her family’s conclusions.
If Burzynski says he has saved hundreds of lives, they do not appear on the Burzynski Patient Group, which has fewer patients on it than this website and has had 33 more years to gather names. His therapy is as much gene therapy as is drinking an Orange Whip.
As is so often the case, the entire family mobilized to pay the Burzynski bill, and this apparently large family had wide and deep connections in the community, as the list of contributors who immediately jumped on board to raise money for Burzynski’s worthless treatment illustrates: the family’s parish, the Chamber of Commerce, the local Family Support Center, and so on. The director of the FSC hit the nail on the head when she discussed what was going on:
Center Director Ann Nguyen said she understood the difficult choice the family faced when they decided to pursue an expensive, unproven treatment they could not yet afford. “It’s hard to be in the center of this and say what is right and what is wrong,” she said.
Agreed. One of the tragedies of the whole sordid career of Stanislaw Burzynski is that in times of desperation, it becomes more difficult to discern what is the appropriate course of action. However, with time and distance, as is clearly evidenced on this site in spades, patterns emerge that call for harsh judgement on the whole Burzynski enterprise.
By the time the story hits the local paper, the family is already in Houston for the 3-week training course that all ANP patients undergo:
Still, the family faces an enormous financial hurdle. For this first round of treatment, they owe Burzynski $12,000.
It is, of course, not covered by insurance. Nonetheless, the coverage in the local paper yielded a flood of money from the community, as reported a week later:
The parents of Sophie [M.] say response has been overwhelming to a Register story last week on their attempt to pay for an experimental treatment for their daughter’s brainstem tumor. Checks totaling $15,000 have been sent from all parts of Orange County.
Quack cancer cures don’t just victimize families, but entire communities. They also keep patients out of legitimate clinical trials, unnecessarily and unthinkably delaying the development of effective treatments.
In November there is more fundraising by the Chamber of Commerce. On March 1 we get an update in the Orange Country Register. The same author reports on a day at a local elementary school where they children are planting a tree for Sophie.
On Saturday students, teachers, parents, city officials and family members gathered to plant a star pine tree in honor of Sophie [M], a Stanton 5-year old currently undergoing experimental treatment for an inoperable brain tumor.
Though she has already outlived physicians’ expectations, Sophie is still very sick, and wasn’t able to watch as the tall tree with fluffy needles was lowered into the ground by four volunteers from Shade Tree Plantings, an Irvine based foundation that plants trees for charity.
[…]
Students at Carver said they learned about Sophie in their classes, and knew the significance of Saturday’s planting.
“We’re doing this so the family has money,” said fourth grader Shyla [W], gesturing toward the bake sale she was helping run.
The statement that Sophie has “outlived physicians’ expectations” is inaccurate and gives Burzynski’s treatment more credit than it deserves. In the first article, the reporter said that:
At best, she had 10 months to live.
Two weeks later, when Sophie’s death is announced and the enduring impact of Sophie’s struggle was documented, we are told:
Before she passed away Wednesday after a seven-month battle with an inoperable brain tumor, she united the city of Stanton by spurring an outpouring of support and hope. (emphasis added)
Sadly, this type of upbeat inflation of cancer patients’ prognosis and progress is typical in the media. And it’s hard to announce or even accept that someone is dying. See the spectacularly inaccurate case of Amelia S., for instance, where what appeared in the press and what was actually happening differed greatly.
Poor Sophie M. passed away on 14 March 2001, well within the time of her initial prognosis.
As of this writing, Burzynski and a number of his staff members are up in front of the Texas Medical Board on a fairly impressive array of charges. Let’s hope that the TMB can end this ongoing, endless abomination.
Burzynski Patient Andrew B.’s Story
In the fall of 1995, 7-year old Andrew B. started vomiting. An MRI revealed PNET, a tumor in the pineal region. In December, surgeons removed a spherical tumor about an inch in diameter. Andrew’s case was reported in depth in The Times Union in April of 1996. The journalist, Holly Taylor, reported at the time:
Three leading cancer specialists said that Andrew’s cancer -a tumor called PNET and found in the pineal region – regrows and kills in 12 to 18 months if left untreated. The newest regimen of radiation and chemotherapy carries a 60 to 70 percent chance of cure, they claimed.
After doing her own research, Bryce instead embarked on a journey through the world of alternative cancer treatments and said she chose Burzynski because his patients spoke of remarkable recoveries from his nontoxic treatment.
“Not treating this kind of cancer is unheard of,” said Dr. Fred Epstein, a pediatric neurosurgeon who operated on Andrew at New York University Medical Center. “I’m surprised Burzynski is willing to treat this child. This is a curable case. This is absolutely unconscionable.” In the story, one can follow and understand the parents’ rationale. Irradiating a child’s brain is delicate and fraught with real dangers, including radiation necrosis and stunted development. Chemotherapy can be toxic, though it is often well tolerated and researchers are constantly refining treatments to reduce and manage side effects. Andrew’s family chose to forego a promising line of treatment by Jonathan Finlay at Sloan-Kettering for Burzynski’s antineoplaston treatment:
Yet [Andrew’s mother] said Andrew would be a guinea pig with the maverick Burzynski or the established Finlay, so she chose the least toxic course.
This is based on the mistaken belief that antineoplastons, in some universe, is non-toxic. Of course the known side effects stretch to three pages in the patient consent forms. With no known benefits and only risks, putting anyone on antineoplastons ALWAYS fails a risk/benefit analysis. The hubris of the doctor administering the treatment is epic and would be farcical if it weren’t for the fact that he “specializes” in only the sickest children:
Comparing himself to Louis Pasteur, Burzynski says he’s fighting the country’s medical establishment and its gold standard of chemotherapy and radiation. He calls his drugs antineoplastons and said they stop the multiplying of existing cancer cells and prevent the growth of new ones without toxic side effects.
“The war on cancer is a failure. Chemotherapy is not going to cure cancer,” said Burzynski. “None of these doctors have had the chance to review our work. So they only know what chemotherapy and radiation can do.”
You see, there’s a difference between Burzynski and Pasteur–Pasteur published, his work was reviewed, and he earned the respect of his peers. Burzynski has piddling case series and patient anecdotes and half studies, none of which is published in a respectable journal. Of the 60+ trials he’s started, ZERO have been reputably published.
Here’s how Burzynski makes his money:
Under FDA regulations, Burzynski can sell his drugs in Texas, but cannot ship them out of state, so [Andrew’s mother] has been traveling to Texas to obtain her son’s medication. She said her family paid $13,000 for the initial three week outpatient care at Burzynski’s clinic and they were spending $4,000 a month for drugs.
The FDA approved antineoplastons for clinical trials for patients with brain cancer, non-Hodgkins lymphoma and adults with uncurable cancers, but the Food, Drug and Cosmetic Act prohibits doctors from charging patients for medications in clinical trials because it creates a conflict.
[Burzynski spokesperson Dean] Mouscher said Andrew was placed in a clinical trial Friday and the family will pay for medical services, but not medications. Bryce said her local HMO wouldn’t cover experimental treatments so the family has paid the expenses themselves. [emphasis added]
Burzynski has treated patients protected by a legal technicality that does nothing to resolve the conflict of interest. At the time that the article was written, it appears that Andrew is active in tae kwan do and his dad says that his son is doing well. But this is apparently the grace period between surgery and recurrence, so of course he feels better. But the doctors warn that:
“without radiation and chemotherapy, the cancer “always” reappears in four to seven months […].”
All of this was going on at the same time that Burzynski was on trial and his desperate patients were trying to put congressional pressure on the FDA:
His patients talk of miraculous recovery on talk shows and testified before Congress in February, as did [Andrew’s family]. But the medical community and the U.S. Food and Drug Administration want to see hard data from him.
“He’s claimed thousands of cures, but very few of his patients have been put on a protocol. All he has to do is keep records,” said Barrie R. Cassileth, Ph.D., who teaches at the medical schools at the University of North Carolina in Chapel Hill and Duke University.
Keeping accurate records has never been Burzynski’s strong suit, as was revealed in this warning letter issued to Burzynski in December, and so his “thousands” of cures remain hypothetical.
And you want to know why his patients are willing to fight for them? He shamelessly wields their desperation like a shield, as was documented in a January 29, 1997 Washington Post article:
To Burzynski’s 300 grateful patients and their families, however, he is a savior, in most cases their last hope in the fight against swiftly growing brain tumors and other forms of cancer that do not respond to conventional treatments. To them, this is the most urgent matter of life and death, and they fear that if Burzynski is convicted, they, too, will receive a terrible sentence. He is the only source of the medicine they are convinced is keeping them alive.
“If I go, they will all die,” Burzynski said.
But at least this reprehensible vile creature doesn’t compare himself to Jesus.
“[His trial following a 70+ count indictment] is a big nonsense,” [Burzynski] said. “It is keeping me from my work. I am treating the sickest people you can find. It is not nice. It is difficult. They are like the lepers from the Bible.”
Oh, hell.
So there is, in his estimation, no salvation for these cancer patients but through Him. And these patients, including Andrew’s mom, did try to save him as we see in this newsletter clipping from the time:
Such generosity has repeatedly resulted in the renewed victimization of the desperate. We see how things got started, and we see, essentially, exactly what is going on at the modern ANPCoalition website, where patients are desperately fighting Burzynski’s battles for him:
“We were lucky, we started treatment before the FDA deadline of February 10, 1996, the day the agency decided to cut off treatment for any new patients who didn’t meet certain criteria. The criteria: the person had to have exhausted conventional chemotherapy and radiation.
“The battle has reached the national level and four Congressional hearings have been held on the FDA’s abuse of power, most recently in July when parents of other children like myself fought for the right to choose Burzynski’s treatment. All the patients–including my son– need your help. The legal fund was originally developed to help Burzynski remain open. But the fund has dwindled after $50,000 was spent in the course so 7-year old Zachary [M] and 23-year old David [S] could stay on Burzynski’s medicine so they could stay alive.”
We do not see the outcome of Andrew’s treatment in the record. He lived for several years, but it is also clear that he had had multiple surgeries and chemotherapy, as his mother reports:
We were scheduled for yet another surgery. Summer had just arrived it was so warm and beautiful outside. Andrew no longer had the port for chemotherapy and was free to play in the water and be a child surgery meant bandages and inside looking out. We were devastated Andrew saw our pain and went quietly to his room collecting all his pins from the Alamo and distributed them to each of us with a quiet smile.
And:
He endured many surgeries and always had smiles and was more concerned for others than himself.
At age 9, after being in hospital isolation for two months, we breathed fresh air and touched grass for, what felt like, the first time. Andrew could not leave the hospital so neither did I, despite pleading from family. I needed to leave just for a little while, they said but I could not. The only thing I could do was watch the river with Andrew from his window and share his pain. That was all.
Andrew died under the care of a conventional doctor in New York at the age of 11. According to his mother:
When he was dying, I asked myself, “what could possibly be worse than this?” Because this was horrible–he was paralyzed, he couldn’t talk. It was anyone’s worst nightmare.
In memory of her son, Andrew’s mother established a foundation that supports children with cancer and that has funded actual research. The mother, however, thinks that Burzynski helped, though we’d call that a statistical outlier, who, let’s face it, had surgery:
I believe it gave him two more years of a full life. In the end we were not one of the lucky ones.
Please contact your representatives in Congress and inform them about the 202 pages of charges that were filed against Stanislaw Burzynski. PLEASE don’t let this happen again.
Burzynski Patient Amanda C.’s Story
On November 28, 2011, mother of 2 Amanda C. of Brimington Common, Chesterfield (UK) was diagnosed with a grade 4 glioblastoma. It’s an aggressive cancer and her prognosis was poor. Doctors quickly determined that the tumor was in too delicate an area of her brain to debulk through surgery, so she embarked on a course of chemotherapy and radiation, which was very tough on her. According to her justgiving site:
Amanda had treatment at Weston Park Hospital in Sheffield, 30 doses of radio & chemotherapy in 6 weeks.
This treatment is very aggressive with severe side effects and Amanda reacted badly to this. It made her very ill and caused her to be paralysed completely on her right side.
It’s a heartbreaking story. By May, according to a post on the Hope for Laura Fund page (Laura is now dead–most of the people who raise enormous amounts of money for Burzynski are) Amanda and her husband are already looking to the Burzynski Clinic:
May 21, 2012 at 3:15pm · Like ‑ Reply
Roger [C] Fantastic news….my wife & I are hoping to visit
the clinic soon…we are in touch with them
The projected cost, at least according to the justgiving site is £200,000 over a two year period.
In August, Amanda’s husband describes the alternative medicines that Amanda is taking:
She’s doing very well…at present. I give her:
1. Boswellia & Turmeric – reduces swelling so less dex steroids
2. Doctor Prasanta banerji Cal phos & Ruta gra 6 – 75% success with brain tumours
3. Curcumin
4. Garlic
5. Reishi Mushrooms
6. Apricot Kernels
7. Soduim Bi carb
8.GLA
Prasanta Banerji has appeared in two other stories on this website, the case of Maryn C. and the absolute extreme of possible harm I’ve ever seen inflicted by purveyors of alternative medicine, the case of Chase S. This Banerji character is a homeopath, which basically means he sells expensive water and placebo pills. Every brain cancer patient I’ve seen taking his remedies is dead. Not exactly a 75% success rate. The other treatments I recognize, apricot kernals (i.e., laetrile–kernels contain a substance that breakdown into hydrogen cyanide, which is as bad as it sounds) and sodium bicarbonate, are disproved and ineffective.
In early September 2012, when a friend posts on the Team Hannah website that they are still fundraising and this goes through to at least October. Burzynski isn’t cheap.
In October, we hear of intense fundraising in the local paper:
But following research into the Glioblastoma Grade 4 brain tumour, [Amanda’s husband] discovered a treatment and possible cure at the Burzynski Clinic, in America, so the couple has set up the Amanda [C] Cancer Trust with fantastic fundraising plans including the charity shop at Unit 16, on Storforth lane, Trading Estate.
[Amanda’s husband] said: “Amanda was told there was no known cure for this type of cancer and she had only three months to live. This was devastating for the whole family.
“But now the Amanda [C] Trust has been set up in a bid to raise awareness about brain cancer and to raise funds for Amanda’s treatment in America.”
This charity shop seems to be a business set up to support Burzynski. Indeed, fundraising went through December and beyond. According to an article in the local paper that ran on 27 December:
A Matlock fundraising event raised £500 towards pioneering cancer treatment.
A book sale was held at the County Hall organised by the Derbyshire county
councillors’ secretarial team to raise money for Amanda [C]. […]Cllr Chris Jackson, vice chairman of the council, said: “I was very pleased
to support this very worthy local cause and staff did a great job at helping to
raise £500. The county council supports many organisations through the year
in a formal way but small unofficial fundraising events like this can
make just as important a difference.”
Amanda was worth it. Burzynski is not.
Following this, Amanda apparently visited the Burzynski Clinic in Houston in December, and she appears in the Derbyshire Times on March 6, 2013.
This article suggests that she was there for about a month, which is more or less standard when someone is put on Burzynski’s protocol. This is because patients’ caregivers are required to learn how to administer the drug. This fact, that lay people were routinely charged with programming the chemotherapy pumps, may have contributed to the over 100 overdoses that the FDA observed in patient records during an inspection of the clinic at about the time Amanda was there.:
Amanda [C], 46, spent four weeks at the Burzynski Clinic in Houston, Texas, in December where she received a pioneering drug in a bid to prolong her life.
Her husband […] was also shown how to administor the Antineoplaston (ANP) drug at home.
And despite a few set backs since their return from Houston, things are starting to look up.
[Amanda’s husband] said: “She has had her first scan and the doctors in America are pleased.
“The tumour is stationary and over the next few months we are hoping it decreases in size.”
The relentless positive attitude here is in some ways heartening, but it’s also discouraging, especially if we look at the record of her progress captured on social media. Before the above article was published, Amanda reported that she was taken off ANP (Feb 1), back on (Feb 3), off again because of bad blood values (Feb 18), had a seizure (Feb 20), and had increasing symptoms and her Hickman line replaced (5 March). All of this happened BEFORE this the article published on March 6th. Now, I understand the importance of being positive, but glossing signs of disease progression and complications as “things starting to look up”–and I fault the newspaper for not fact-checking–it can give a false impression of antineoplastons’ efficacy. A much more striking and higher profile case of a sharp difference in what actually happened and what was reported in the press was the case of Amelia S, when a paper crowed that she was returning to school, omitting mention of the logistical juggernaut that had to be assembled to make that happen. Burzynski has thrived on lazy journalism, and it’s probably why the Clinic pitched a fit when a real reporter paid the story as much attention as they did in November of last year, when he appeared on the cover of USA Today. Burzynski is apparently not used to real reporters.
Amanda was back on ANP on March 8, but suffered a bad fall only a few days later. The family continued to raise funds for treatment, which by their estimate was $8500 a month. Amanda died in May.
Please donate to St. Jude Children’s Research Hospital, which does real research into brain tumors. If you want to take further action, protect the vulnerable, and put reliable information in front of patients who might be looking into this Clinic, the Skeptics for the Protection of Cancer Patients (facebook page here) have put up guidelines about how to boost good information into relevant search results.
Burzynski Patient Claire F.’s Story
*An appeal to encourage Congress to investigate this follows Claire’s story*
Claire F., mother of two, was diagnosed with invasive ductal carcinoma in May 2007 and underwent the underwent a normal course of therapy in the UK, surgery and chemotherapy. In January 2008, she was found to be in remission. She started dating and fell in love with “C,” an old friend. On Christmas 2009, C. proposed. They booked a church and planned to marry on her 40th birthday in October. In May, however, a lump appeared in her neck. She tells the story on her website:
My GP put me on antibiotics, thinking the lymph nodes had probably come up due to a cold I had. Unfortunately, the antibiotics didn’t do anything, so I was once again referred to the breast clinic. Another painful biopsy was performed on my neck the very next day. The results of this showed the cancer had returned to my lymph nodes. I had an operation a week later to remove the lymph nodes in my neck. Unfortunately, one of them couldn’t be removed because it is attached to my jugular. Removing it would have caused me to bleed out. A few days after the surgery I had routine CT and bone scans to check for any spread of disease. The scans showed the cancer had spread to my spine and my right lung, as well as my neck. I was told I would be lucky to survive the next five years. I have been back on chemotherapy since July of this year [2010]. They’ve put me on oral chemo this time, which I can take at home and the side effects aren’t too bad.
Claire and C. went forward with planning the wedding and held it as planned, Claire taking a break from her chemotherapy so that she would be at her best that day. The next day, however, they got her scans from an previous test and learned the cancer had spread. She was on a new treatment but looking ahead:
My Mum has recently heard about a doctor in Houston, Texas, Dr Stanislaw Burzynski, who has been conducting clinical trials into gene therapy for over 30 years and how it can treat cancer without causing the unwanted side effects of chemotherapy. Gene therapy is apparently the way forward in treating, sometimes completely eradicating, cancer cells. My husband and parents are of the opinion that we must try everything possible, otherwise we would never forgive ourselves for not giving it a go. This treatment is groundbreaking but unfortunately very expensive.
We have estimated the costs for treatment, travel and accommodation to be in the region of a staggering $100,000 (approximately £65,000). As none of us have this amount of money to hand, we are planning all sorts of fundraising events. So far, my Mum has managed to raise around £15,000 from family donations, which is amazing and is enough to get me and my Dad to Texas, pay for our accommodation and have all the initial tests and treatments out there. We have to stay there for up to a month the first time we go, hence the costs. [C.] and my Mum will stay home to look after the girls.
A major reason we are writing this site is that these patients don’t fall into the trap that the Burzynski Research Institute’s antineoplaston trials are anything like respectable. Antineoplaston therapy is no more gene therapy than is eating a banana. It is at this point that Claire is at her most vulnerable. She has been given 5 years at the most to live, has two girls, and is just married. She deserved to participate in a legitimate clinical trial that had a chance of prolonging her life. The Burzynski trials were appalling parodies of the scientific investigation, ones that seemed designed to rope in as many paying patients as possible. In a recent site inspection following the death of a child, the FDA made the following observations:
Among the newly released observations by FDA inspectors:
- Burzynski (as investigator, the subject of the inspection) “failed to comply with protocol requirements related to the primary outcome, therapeutic response […] for 67% of study subjects reviewed during the inspection.” This means that several patients who were reported as “complete responses” did not meet the criteria defined in the investigational plan, as were patients who were reported as having a “partial response” and “stable disease.” This means that his outcomes figures for these studies are inaccurate.
- Additionally, some patients admitted failed to meet the inclusion criteria for the study.
- Even though patients needed to have a physician back home to monitor their progress prior to enrolling in a trial, the FDA found a patient who began receiving treatment before a doctor had been found.
- Patients who had Grade 3 or 4 toxic effects were supposed to be removed from treatment. One patient had 3 Grade 3 events followed by 3 Grade 4 events. Another patient had 7 disqualifying toxic events before he was removed from the study.
- Burzynski did not report all adverse events as required by his study protocols. One patient had 12 events of hypernatremia (high sodium), none of which was reported. There are several similar patients.
- The FDA told Burzynski: “You failed to protect the rights, safety, and welfare of subjects under your care. Forty-eight (48) subjects experienced 102 investigational overdoses between January 1, 2005 and February 22, 2013, according to the [trial number redacted] List of Hospitalizations/SAE (serious adverse events) [redacted]/ Overdose [redacted]/Catheter Infection report. Overdose incidents have been reported to you [….] There is no documentation to show that you have implemented corrective actions during this time period to ensure the safety and welfare of subjects.” [emphasis added] It seems that these overdoses are related to the protocol, which requires family members to administer the drugs via programmable pump on their own. Further, patient records show that there were many more overdoses that were not included in the Hospitalization/SAE/Overdose list.
- “Your […] tumor measurements initially recorded on worksheets at baseline and on-study treatment […] studies for all study subjects were destroyed and are not available for FDA inspectional review.” This is one of the most damning statements, as without any…not a single baseline measurement…there is no way to determine any actual effect of the antineoplaston treatment. This means that Burzynski’s studies–which by last account cost $30,000 to begin and $7000 a month to maintain–are unpublishable.
- Some adverse events were not reported to the Burzynski Clinic IRB for years. (One patient had an adverse event in 1998 and the oversight board did not hear about it until 2005.)
- The FDA observed that the informed consent document did not include a statement of extra costs that might be incurred. Specifically, some informed consent documents were signed days to weeks before billing agreements, and in a couple of cases no consent form could be found.
- The clinic was unable to account for its stock of antineoplastons.
To summarize. The FDA observed that Burzynski’s success rate was inflated, crucial patient records had been destroyed (as far as we can tell, rendering all of his trials completely unverifiable and unpublishable–if Claire was indeed on a trial, her case would not count toward the scientific understanding of antineoplastons, a costly betrayal), that there were numerous serious toxic events, many of which went unreported for long periods of time, that patients were denied informed consent, that paying patients were allowed on the studies who shouldn’t have been included and that patients who should have been dropped were kept on longer than they should have been, and that Burzynski had violated his own protocol.
On Dec 14 of 2010, we hear from her on her webpage:
Thanks for all the well wishes over the last few days. I got my scan results today. They show that the combination chemo drugs haven’t succeeded in shrinking my tumours. My spine is still stabilised, but the neck & lung lesions have grown slightly (again). So, I am going to be put on a different chemo regime, this one is called Gem-Carbo and it’s intravenous, rather than oral treatment. I’m hoping to start this before Christmas. Next week, I’m going to be having daily radiotherapy to my neck to shrink the lymph node that’s been left there, as it’s now giving me some discomfort. The plus side is that my liver and all my other major organs are clear. My oncologist is referring me to see a doctor in Charing Cross hospital, who is aware of the doctor in Houston and his gene therapy treatments. This will arm me with much more information before I head off to Texas. Could be better news, but it could also be so much worse! Xxx
Her radiation treatment is intense and knocks her down a little. Then, right at the end of the year we hear:
The original plan was for me to travel to Texas yesterday, but a couple of weeks ago, my oncologist sent a referral for me to see a professor at the Charing Cross Hospital in London. There are links between Dr. Burzynski in Texas and the Charing Cross Hospital, so my doctor thinks it makes sense for me to see the guy in London and get armed with as much information as possible, before flying out there. My Mum has also recently discovered that there is a clinic in Zurich, Switzerland, which has doctors working under Dr. Burzynski’s guidelines. I am still waiting for the London appointment to come through. As soon as it does, we will know exactly where I’m going and when, but please rest assured that all the money which has been so generously donated will go directly towards my treatment. If I’m able to go to Zurich instead of Texas, the money we’ll save on travel and accommodation will probably pay for at least an extra month’s worth of treatment, which is fantastic. Better still, I won’t have to be so far away from my husband and children for so long!
This is unusual. This is the first we’ve heard of a Zurich clinic. Nonetheless, Claire’s oncologist is mistaken. The physician, Professor Coombes, it turns out, does not have ties with Burzynski, but with a reputable research institution in Houston, MD Anderson, as we hear on Jan 18th:
Just to fill you all in on Friday’s appointment. It didn’t go as well as we hoped it would, because Professor Coombes is linked to another clinic in Texas, the M.D.Anderson Clinic, as opposed to the Burzynski Clinic which we were hoping to get more information on. Having researched Dr Burzynski more over the weekend, the plan is still to visit him to see what he can do for me. His work is still in the clinical trials stage, which is why he’s not known worldwide (and why it’s so flipping expensive!). I feel a little bit deflated about this, but we’re still going to go ahead. We have to try everything that’s out there. [C.] has been in touch with some patients of his who absolutely swear by his work.
And the Burzynski Patient Group rears its ugly head, pulling another desperate family into Burzynski’s clutches. In all the years he’s been in “clinical trials” he should have been able to produce a single finished, published, credible study. Claire deserved better. She deserved MD Anderson. On the 2nd of February, she has her Hickman line put into her chest, which is how her antineoplastons will be administered. The traditional chemo is having a positive effect, however, as we hear on March 4th:
Just got back from my results appointment and the news is good! The tumours in my spine and my neck have stabilised, my brain is clear, I have no new disease anywhere else in my body, the new swelling in my neck is muscle damage from having the hickman line put in (which can be treated with physio) and the best news of all is…. the tumour on my lung has shrunk by 1cm!!! This all means that the new treatment is working and I’m raring to go ahead with the next dose tomorrow. I don’t care how crap it makes me feel, it’s working, WOOHOOO!!!! My Mum was crying her eyes out, God love her. The next step is to go and see Professor Coombes again in London, then it’s Texas, here we come!! Thanks to all of you for the thoughts and prayers, they’re obviously working too! xxx
In the meantime, her family and friends are raising money for Burzynski like crazy. By June, however, she still hadn’t gone out to Texas. She is facing some infection issues and she gets violently ill when she starts Taxol, as we hear on June 13:
[C.] contacted the clinic in Texas, just to make sure I can have their treatment whilst on chemo and I can! So I started the taxol today. I feel fine at the moment, just very tired.
Interesting. How would you be able to sort the effects of the chemotherapy from any result the ANP would have? (Answer: you can’t. Worst researcher ever.) She returns from the hospital on July 1. As Claire said:
Two weeks ago, I didn’t even have enough energy to lift my head from my pillow and the team have really got on top of my pain management. So, I am now pain and sickness free and [C.] and I have been looking into leaving for Texas in two weeks’ time. Flights, car, accommodation and, most importantly, the Burzynski Clinic are all ready for us. The clinic have had all of my medical notes and have said I am eligible for their treatment. All I have to do now is convince Dr. Shah to reinstate my fit to fly letter and get some insurance, then we’re off! I’d like to say a massive thank you to all of you for the donations and lovely messages I’ve received over the last few weeks. I’m completely overwhelmed by this and the support it has given me has been tremendous for my emotional wellbeing. Most of all, I’d like to thank [a friend] and my parents for looking after me, my children & my blog (!) and for pulling out all the stops to arrange this potentially life saving trip, whilst keeping a bedside vigil for me.
Claire and her husband meet Burzynski on July 18th:
We had our first appointment at the Burzynski Clinic today and got to meet Dr. Burzynski himself, which was a real honour. Today’s appointment was for consultations with the doctors, blood tests and a meeting with the financial team. […] The next step is for me to have full body PET and CT scans. These will take place either on Tuesday or Thursday of this week. In the meantime, I am going to be started on tablets tomorrow (tuesday), which are a form of gene therapy. We will also be meeting a nutritional specialist, who will give me a list of what I should and shouldn’t eat whilst on the treatment. I’ve already been told today to avoid sugar, bread, pasta and rice… some of my favourite things! That’s you all up to date for now.
On the 23rd we hear:
After taking just 2 doses of the antineoplaston medicine, I spent all of Wednesday night being violently sick and ended up being carted off in an ambulance during the early hours of thursday with ridiculously high blood pressure and pulse rate. The staff at the emergency room were amazing and they gave me an anti-sickness drug and morphine for the pain. Then they hooked me up to a saline drip for a couple of hours to rehydrate me. I felt better in no time, just very tired and weak. We were handed a bill for $1,250 and put in a taxi back to our hotel. Thank God I took out that insurance policy, hopefully we’ll be able to claim most of this cost back when we get home. Thursday was a write off as I spent most of the day trying to catch up on sleep. I missed my appointment at the Burzynski clinic because of it. [C.] phoned the doctor there and they’ve re-schelduled [sic] my appointment for Monday, giving me the weekend to completely recover from the sickness. Needless to say, I’m not taking the antineoplaston doses for now.
It’s hard to tell what treatment she is on, honestly. She was on “pills” which suggests she is on sodium phenylbutyrate, but she seems to think that it is antineoplaston (PB is a prodrug for the components in ANP). She has been given a liquid form of it, however. The tumor in her neck was pressing up against her vocal cords, and it seems likely that her swallowing is problematic. It does not sound like she is on a clinical trial. You will notice the huge range of side effects that she is suffering, including high blood pressure and tachycardia–these could be direct results of the massive sodium load that Burzynski’s patients have to carry, which can lead to hypernatremia.
The Clinic starts her on Herceptin and Avastin, both common breast cancer drugs. It sounds like she is taking the chemo cocktail route, wherein chemotherapies that have not been tested together are administered to patients. Burzynski sells this as “gene-targeted therapy.”
On July 18th, Claire’s husband notes what is happening:
Time is passing by, we’ve been here for over a week already and we’ve still yet to get Claire started on any treatment that she can tolerate and give us a plan of action to take back to the United Kingdom to present to our Doctors.
The three drugs that have been proposed by the clinic total at $13,825 per month which works out at roughly £8,413 back home.
Once Claire has been cleared to start this treatment we are hoping to get at least two weeks worth here before returning home and then looking to continue the treatment with the NHS and the clinic working together.
Dr.Rakhmanov ( in charge of Claire ) has already said that he will personally fax the plan of action to Claire’s oncologist and does not believe that Claire should have any problems being treated with two of the three proposed drugs, he does however feel that one of them may be controversial but we will have to deal with that if and when it happens.
Of course, the NHS decides that it will not foot the bill, which means more fundraising. On the 14th of August, we hear about her progress, as she is back home in the UK. She’s had it tough:
On Monday of this week, I had my discharge appointment at the Burzynski Clinic. When we arrived there I was in terrible pain on the right hand side of my back, the pain was so bad that I was in tears and quite short of breath. The nurses saw I was distressed and took me to another room to be put on oxygen. This really helped and I felt better in no time. We had the discharge appt, settled our bill for all the drugs/assistance we’d had so far, had our photo taken with Dr. Burzynski and left the clinic.
That photo was posted on her webpage:
She goes on:
Half way though the flight, I started to get the same back pain I’d had on Monday. Remembering oxygen had helped me then, I asked the stewardess for some. She obliged and I soon got a little audience! But I didn’t care, it was making me feel better.
That Friday, back home, she got up to answer the door and passed out. After she started coughing up blood, her family took her to the hospital, where she was diagnosed with pneumonia. She was in the hospital until the 28th, and then when she came home, she was leveled by a hospital acquired infection.
On 21 September, Claire died. Burzynski’s treatment does not appear to have done anything, but he got his cut.
Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and this never happens again.
Burzynski Patient Amelia S.’s Story
The case of Amelia S. is a hard one to write about, because it tipped skeptics off to a pattern in the stories that patients at the clinic were telling, that their worsening symptoms were signs of improvement. As you will see, this is a story that Burzynski’s patients have been relating for decades. It’s a long post, but it’s important that you read to the bottom.
***
3-year old Amelia S. lived in Reading. In about September of 2011, Amelia started displaying neurological symptoms–wobbliness and a trembling left hand (often drawn into a fist). The family brought her in to the hospital after she started falling down. On Jan 30th, 2012, she was diagnosed with a brain tumor, and on the 1st of Feb it was determined to be a large tumor on the brainstem. Surgery revealed a grade 2 diffuse astrocytoma, which the family was given to understand meant that the core of the tumor was likely grade 3. Doctors were unable to remove much of the tumor, only the 4 biopsy samples.
Amelia’s medical team was honest. The benefit offered by radiation and chemotherapy, on average, could be measured in weeks. These are bad, bad tumors. The family brought Amelia home on the 20th of February, her mobility and speech impaired, opting to spare Amelia the unpleasantness of the chemotherapy and radiotherapy. When they saw Amelia improving (we’re not told what those improvements were–whether they were reduction in tumor size or reduced swelling as she recovered from surgery, for instance), however, family understandably felt obliged to look for other options.
They found Burzynski. Immediately, the enormous price tag of his antineoplaston treatments spurred the family on to raise funds. Amelia’s father began documenting their journey to Burzynski in a couple of places, at ameliasmiracle.com and on a Facebook page of the same name. As a whole, his story is the most moving and insightful account of parental heroism that I have read since I began this project, and I strongly recommend that you read it for yourself.
By the end of February 2012, the family had decided on Burzynski. We were introduced to Amelia on February 28th in a video posted by her father:
Attached to the video was a simple plea:
Our daughter, Amelia, was diagnosed at the beginning of February with a very rare type of inoperable brain tumour. She has only a few months to live. We have a ray of hope – treatment for her is available at the Burzynski clinic in Houston, Texas. This treatment in total will cost around £200,000. We need to raise this money to allow Amelia to have the chance to live a normal life.
From the beginning, the family sought media attention to raise money for the Burzynski Clinic, as we see in a Facebook post. the earliest example of Amelia’s story appearing in the press was in the local Wokingham Times on 8 March 2012. The public campaign was launched. And by 14 March, £45,000 had been raised by the community, enough to get Amelia in the door at the Clinic (recent accounts put that initial consult at $30,000). The Wokingham Times seems to have informally adopted the family and followed their progress closely for the rest of the year. These community fundraisers appear as human interest stories and reaffirm that people are basically kind and generous and trusting. In fact, my first exposure to Burzynski and realization that something was profoundly wrong came after I did a newspaper database search for all of the patients that I could find. Of those patients I could find an outcome for, every patient who appeared in the international press, usually begging for money, with a single exception was dead.
A week before Amelia hit the papers, on the 6th of March, Eric Merola, who made an uncritical hagiography to Burzynski unironically called, Burzynski: Cancer is a Serious Business, interviewed the family about their upcoming trip to Houston for his new movie, a sequel, which comes out soon. He planned to follow Amelia’s progress in the film. On the 17th, as they planned their trip to the US, the family put up a short video for Amelia’s donors:
So, she clearly she packed everyone’s hearts into her suitcase. Such a dear.
They left on the 23th of March for America, having raised a staggering £75,000 for Burzynski. In a Wokingham Times piece, her father stated some of the opposition that the family had met:
Mr Saunders added that he was amazed at the number of people who had suggested the American treatment would be fruitless.
He said: “I was warned about this before we decided to go with the Burzynski treatment – it is like there is a vendetta out against the man.
“It is so strange, and all I keep getting are contacts from patients who have been or are being cured by the treatment, or at the very least have had positive results.”
People for whom Burzynski’s treatments fail tend not get into contact with other patients. We are witnessing what is known as survivorship bias. You can talk to a dozen survivors and have a positive impression of a treatment but fail to take into account the 10,000 failures, which would put a treatment well below the efficacy of chance remission, misdiagnosis, and unrecognized responses to traditional therapies. This is why controlled trials are so important to determine efficacy, so we can sort out the background noise of chance from real effects. It is also an important reason that dependence on patient testimonials is a red flag for quackery.
Amelia has had a hole opened in her chest where a Hickman line has been inserted, where she will receive her ANP. These frequently have complications with infection and clogging.
By the 30th, Amelia has her backpack full of antineoplastons, as we see in a video. Her family will spend the customary 3 weeks or so in the US learning to administer the ANP themselves. They are infused at high doses almost continuously.
Amelia’s dad shares his first impression of the Clinic on the facebook page:
The clinic have been fantastic. I am still amazed that people give them such a bad press. They have literally bent over backwards to get this started for us. The receptionist Irena even has a photo of Amelia behind her desk, she is so lovely!
Well there is a reason, of course. It’s because they apparently tell patients that they can tell brain tumors are shrinking by looking at their urine:
Mr Saunders said: “Every day is a milestone and the clinic is being extremely thorough in its tests – Amelia has regular blood tests and these are all closely monitored to check for signs of all sorts of things.
“Interestingly, they can actually see the early signs of the tumour breaking down by how her body excretes it in her blood and urine. This might be the only time in my life I get excited by seeing this kind of information!
I’m not sure what this is supposed to mean, and before Amelia’s story I would not have even noticed this. I can see why a parent clinging to hope would sieze onto any augury of healing. Remember, this family has not had good news about Amelia since her diagnosis. Little steps, literally, mean the world to them. I contacted research oncologist David Gorski, who studies and treats breast cancer, about this claim, and he replied:
“Oncologists don’t monitor anything in the urine for tumor breakdown, at least not for that tumor. There is such a thing called tumor lysis syndrome, but that’s usually only seen in leukemias and lymphomas as a result of induction chemotherapy that kills a lot of cancer cells really fast, releasing potassium, and a number of other byproducts. However, as I said, you don’t generally see this in solid tumors (mainly because none of them respond nearly as dramatically to chemotherapy as hematological malignancies). It’s also a complication to be managed, because its most frequent result is renal failure. It’s possible that he’s referring to GFAP, which is a biomarker for glioma under study, but I don’t think it’s really been validated as a measurement of response to therapy.”
There are apparently no biomarkers for glioma that appear in urine. Amelia had chronically low potassium at this point in her treatment.
We don’t see a lot of what is going on at the clinic on facebook, where most of the story is told record, but we get a clue on Amelia’s other website:
10th April 2012
I realised I hadn’t updated the news section here for a few weeks, this is largely because we update our Facebook page daily and much of our time has been taken up going to and from the clinic. Every day has been a bit of a rollercoaster here. Amelia has been on antineoplaston treatment for a week and a half and at the end of last week we hit a bit of a wall with the treatment dosage. Amelia got pretty sick so we had to back down on the dose a little. Yesterday she started getting really bad headaches so we have now also put her on a low dose steroid as well. Other than this, she is doing well and responding well to treatment. We think there are some very slight improvements in her coordination of her left hand side. We are continuing the treatment, and the aim is now to increase the dosage more slowly to see how she responds. All in all we are doing well and looking forward to coming home soon!
So, she’s been up and down. The steroids are a recurring feature of treatment and can very quickly reduce inflammation in a way that leads to improvements of the type that the family is reporting. You see it a lot on this website. It’s hard not to think of John D., who experienced worsening symptoms while under treatment (and on steroids), which was met with joy on the part of the staff:
I want to mention that the IV nurse told mom today that 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. I know this nurse & she is very honest & helpful. She also runs the class they run every week for new patients.
On April 19th we hear that the family is preparing to return home, and on the Wokingham Times page where it is announced, we see that damned picture again, patients literally at death’s door, posing in front of the Burzynski Clinic. We get the update that they have arrived back in England on the 22nd. Amelia’s dad talks about the fundraising (truly amazing acts of generosity by the whole community) and how grateful he is for the immense support that the family has received. (Amelia gives her own thank you’s in an adorable little video a few days later.) He speculates on the road ahead:
I have come home from Houston with a strange kind of feeling. Perhaps a little apprehension, a bit of fear, a dose of happiness and a shot of hope. We still feel that every day is a roller coaster. We may be sitting on a ticking time bomb, and it may still be that any day we might lose Amelia. Every day truly is so precious, and it is a joy to watch her and her little sister back together again, albeit in a different way, a more careful one, where we have to watch them all the time.
The next day, it sounds like Amelia is having the unquenchable thirst that comes with ANP:
Amelia has been OK today, she was a bit sick earlier but we think this was because she drank too much too quickly – she was fine shortly afterwards. We’ve been getting used to life again at home and putting everything in place we need to.
And we hear that she is due for her first post-treatment MRI:
As far as the MRI goes, I just want to make a point that we aren’t expecting a lot to have happened with this next scan. As part of the medical trial we are required to get a scan done every 4 – 5 weeks – and these things take time to show any change. It is very likely the tumour may be the same or have grown slightly. This is fine and we expect this, and clearly if it has shrunk then great – but we aren’t expecting it to have done.
Tumors on which chemotherapy is working should probably not be growing at all. It’s the definition of “working.”
Today has been a busy day. Unfortunately Amelia was pretty sick this morning – those of you who have been following our journey will know that we are trying to increase Amelia’s dose of drugs and it sometimes has side effects, this seeming to be the most common. She was fine afterwards and has been eating for the rest of the day.
We had an appointment at the hospital at lunchtime and ended up spending most of the afternoon there so we could get everything sorted. The doctors here are being very cooperative – but I must emphasise that they are recommending different treatment (chemo) and we have consistently turned this down. We have not found a single person with a DIPG tumour that has had any effect with chemo – so continue to find it strange that this is offered. Our plan is to continue the antineoplaston treatment for as long as required. We realise this is being frowned upon by the doctors here – but ultimately we are trying the only thing we found that had credible results.
Credible results would have been publication and replication of his trials. Burzynski can’t seem to complete his trials, much less publish them (which is odd given that he has the test agent already developed and the tumors he is working have outcomes comparatively rapidly). If trial completion were a batting average, he’d be at .015 and his trial publication average would be .000.
By May 4, Amelia is a celebrity. They have raised £160,000 (!) and she is meeting and hanging out with celebrities. And the paper has clearly been reading Amelia’s dad’s updates. Also, her dad’s website announces:
Well we have now been back from Houston for a few weeks – and Amelia has continued to slowly improve with both her walking and speech getting better. The Burzynski clinic were brilliant – we were made to feel so welcome and Amelia really made an impression on everybody there!
We had an MRI scan on Monday that revealed her tumour has stopped growing. Considering she has had no treatment other than the antineoplaston therapy from the Burzynski clinic, we are really pleased (and impressed) that the treatment seems to be working so quickly. We are now continuing the treatment and increasing her dose such that we try to get her to the ‘target’ dose for her weight.
This tumor “stopped growing” news is taken as validation that the treatment is working, so much so, that the Wokingham Times irresponsibly reports that result. According to her dad:
1. Amelia has been on treatment for less than 4 weeks.
2. She is not on full dose yet, and has some way to go to get there. This is a slow progress, perhaps taking another month or so to achieve this (or more).
3. She has a low grade tumour. Any response will be slow. In other kids where the treatment has worked it has taken many months to show response.
4. She is still on steroids.
5. Her previous scan showed a 13% growth in 7 weeks.So, having now had several opinions of the scans, I can confirm that Amelia’s tumour has STOPPED GROWING. This is amazing news and we are over the moon that this is the case. For this tumour type, in this short time, with a tumour of the size of Amelia’s, this is an incredibly good result. This is an INCREDIBLY hard tumour to do anything with, one of the hardest to treat and normally very lethal. In most circumstances Amelia would no longer be here (in February there was no way we thought we’d get to May with her) so to have the thing stable is fantastic news.
A few important points. It’s a low grade (slow growing) tumor. This does not seem to have been a PET scan, which would give a sense how of active the tumor was–to see if it had in fact “stopped.” And initial responses to chemotherapy (and ANP is chemotherapy by every definition) correlate poorly to outcomes, which is, of course, the final goal that everyone involved is keenly interested in. Of course, the Clinic doesn’t convey that information:
I also had a good chat with our doctor in Houston earlier. Again all sounding very positive, and we have again increased Amelia’s dose tonight […] The clinic sound very positive that Amelia’s tumour stopped growing so quickly. Let’s just hope we have more positive news on the next scan in June.
On 12 May, we get an update about Amelia’s progress:
Amelia was on top form today, she was pretty tired after the wedding but perked up and during doses, when we unplugged her from her backpack, she was really bubbly. Later in the afternoon she was doing some proper walking – unassisted. I think we have now realised that a lot of the walking problem now is just her confidence. She was walking almost normally, and certainly the same or better than she was before her operation. Fantastic.
So, they are at point zero, which considering where they have been is wonderful from the family’s perspective, but it doesn’t tell us that the ANP is working of if she has just recovered from surgery to her brain stem and is now on steroids. And this may be important, as dad mentions on the 20th:
She really has improved. We’ve both noticed significant improvements in her speech, mainly in the quality of her pronunciations and also the speed and which she speaks. Slow speech is a classic symptom of her tumour location, so any improvement is a good sign here. This might be the steroids causing this improvement so we have to be careful, but we have a lot of fingers crossed we’ll be taking her off the steroids within the next few weeks if we can get her second bag to target dose. We’ll see.
Amelia has been a bit groggy, fairly lethargic and pretty reluctant to do a lot. […] Because of the lethargy, the doctor in the US has recommended increasing her steroid dose very slightly. We’ll see if this improves things – if it does then this is a good sign. It does all tie in with us increasing her dose, which is now at maximum on her larger bag. No wonder.
Also on the 21rd, just over a year ago, the fundraiser reaches its goal of £200,000, and the tally continues to climb. In the intervening time, however, we hear that Amelia has had some complications with the Hickman line, which has been replaced because of a tear:
She is doing well otherwise, and we’ll be resuming her treatment tonight. She is now walking by herself, her coordination and balance have all improved and her speech is much better. It looks like the treatment is definitely helping her.
In early June, dad is rattled by the deaths of patients Billie B. and Supatra A., who had the same tumor as Amelia, and for a few days he rails against skeptics. Apparently some have been contacting him and criticizing him. This is wrong, in my opinion. Cancer patients have enough on their plate.
On the 21st, we hear that the tumor remains stable:
Firstly we are waiting on a further interpretation from Dr Burzynski, but as we suspected from our own view of the scans this morning, Amelia’s tumour remains stable. In other words, there is no change since the last scan.
The family accepts this as a sign that they have stayed the brain tumor:
We are 100% sure that without antineoplastons, Amelia would either be in a hospice by now or dead. She has a grade 2 tumour, on scans it appears as a grade 3, and it is very large and in a very dangerous part of the brain. Even a few mm of growth would cause a significant impact on her quality of life at this size. We are all walking on a knife edge. Dr Burzynski’s treatment is undoubtedly keeping her alive. I actually want to wave this in the face of all the skeptics we came across along our journey.
It’s worth noting that the tumor hasn’t shrunk. Small victories–including just not dying–are huge when your child has one of these tumors.
Amelia has her 4th birthday on the 22nd of June, and it is celebrated in the papers.
Again, we see that the steroid dose is being increased on June 25th to control the symptoms of the disease:
We have been advised by the clinic to increase her steroid intake back to how it was last week to see if we see an improvement in her. We will then try in a couple of weeks time to reduce it again but at a slower rate, reducing it by 0.25mg instead of 0.5mg per day. The steroid intake is a tricky issue as they are essential and help reduce the symptoms of this awful disease (headaches, tiredness), however long term steroid use is not good and cause side effects such as weight gain, muscle problems.
We still haven’t seen anything that looks like clear evidence of improvement past diagnosis; it sounds like the symptoms return when the steroids are tapered. She seems to be doing pretty well on this dose of steroids, going to school. (Her last day of nursery school is 11 July.)
Well – we have had a pretty good weekend. I had a truly amazing conversation last night. Purely by chance I’ve been contacted by the mother of another little girl, who is almost the same age as Amelia, who is receiving the same treatment (for longer), with the same tumour (DIPG) and her tumour just shrunk. By 36%. We are so, so pleased. There is so much hope in our hearts now.
I’ll just briefly mention how frustrated we still are to read so much crap on the internet about Dr Burzynski. I feel like we are ‘insiders’, in a way, and know how the whole thing works now. These doubters clearly don’t. The lady I spoke to last night was told her daughter would die. When she went to Burzynski, her doctor shut her off. Refused to speak. Thank God she chose to follow her heart, and not that doctors advice. She might just have saved her daughters life. There is no doubt this works, and we want it in every hospital in the world. We’ll keep spreading the word until it is.
This child, sadly, is now dead.
By August the tumor has not shrunk, but Amelia has been coping very well. A few weeks earlier she had a wonderful day at the zoo. She’s still a little wobbly on her feet and in the pictures her family put on the Facebook page, you can tell that her face is not symmetrical, but by God she’s enjoying her life, which is an immense thing in itself. On the 6th however, she gets pale and sick; when her blood work is done, they find that her potassium and magnesium are way down, though they stabilize her.
On August 8, we hear:
One of the many things I have said throughout this year is that I hope that maybe, one day, I can learn that another child has had success with this treatment because of the inspiration they gained from Amelia. I know of one little girl, Chey, who is waiting to go to the clinic right now. But due to some complications with the FDA and the clinic, there are some delays – but we are all hoping she will get there very soon. We felt so welcomed by the Burzynski clinic and everything we saw there made us puzzled why so many people don’t believe in it.
We just found out exactly what happened. According to an SEC filing:
In a letter dated June 25, 2012, the [Burzynski] informed the FDA of a serious adverse event which may have been related to the administration of Antineoplastons. On July 30, 2012, the FDA placed a partial clinical hold for enrollment of new pediatric patients under single patient protocols or in any of the active Phase II or Phase III studies under IND 43,742. The FDA imposed this partial clinical hold because, according to the FDA, insufficient information had been submitted by the Company to allow the FDA to determine whether the potential patient benefit justifies the potential risks of treatment use, and that the potential risks are not unreasonable in the context of the disease or condition to be treated.
According to the mother of patient Alynn H., her understanding was that a child had died (link is password protected). We have not heard anything else, only that the ANP trials, almost a year later, have not started up again and that the partial hold remains.
On August 13, Amelia’s dad posts a video about Amelia’s life since diagnosis. This write up an unusually long post for this blog, and I haven’t done justice to the support the family has received from their community or the sheer number of people who pitched in to help the family, and this video gives a sense of that:
On the fifteenth, we hear that the family is understandably anxious for the tumor to shrink:
Incidentally, we are well aware that a stable tumour is good. Mondays scan was one that we went into thinking ‘if it is stable then great’. I’ve had a few people come up to me and ask “is the tumour shrinking?”. Now I know people mean well – but it is a little like me walking up to somebody and saying “have you won the lottery yet?”. In other words, frustrating. I smile, say no, it will take time, and move the conversation on.
So far, the tumor’s behavior has been utterly unrelated to the dose of the antineoplaston chemotherapy. On Aug 25, we hear that Amelia is tired on treatment and that she has had a progression of symptoms:
We are still looking to increase her dose slightly as she has gained a little weight since Houston so she should be able to tolerate an increased dose (or at least we hope so). We will probably have to increase her steroids in line with this, but we have been considering this anyway as she seems to have become a lot more wobbly lately. We know from the MRI that the tumour hasn’t grown so an increase in her steroids should help this.
Now, I’m not sure how this was verified. The definition of a “stable” tumor can actually accommodate some growth, so, we can’t know exactly what is happening. And we hear from the family a few days later that they have come to a hard realization:
On the 27th, we hear:
Firstly, Amelia hasn’t quite been herself unfortunately. She has been very reluctant to walk, a lot more tired, slow and pretty lethargic. She was sick on Saturday night also. We are reasonably confident we have probably gone too far with the steroid reduction so we have actually increased these slightly again today. We decided we would rather have a happy and more alert Amelia than one who doesn’t want to do too much – so we made this decision today in coordination with the Burzynski clinic. We’ll see how she does. There is a small chance it is the tumour growing, but much more likely given the scans we have that this is due to swelling of the tumour caused by the treatment. Time will tell. […]
The symptoms we are seeing right now are a direct result of the tumour, hopefully due to it swelling, and the steroids will fix this. They are also what we would see if it has grown.
It really, really looks that her wellness is linked directly to how much steroid she is receiving. And here’s another example of something that is…desperately, desperately wrong at the Clinic. The patient is being told that the tumor is swelling because of the treatment. How is it that only at the Burzynski Clinic that getting worse is indistinguishable from getting better? Second point: this is a tumor on the brainstem. If a possible side effect were swelling of the thing pressing against the brainstem, you’d expect that to be on the informed consent form, right? The type of thing that would be among the “serious side effects,” right? It’s not, at least not in a version of the consent form used after Amelia had started ANP:
(Burzynski’s supporters who have been saying that the treatment has no long-term side effects would do well to look at that first paragraph. The paperwork that every patient signs says it can have exactly that.)
On September 5th, we see a candid moment on the facebook page. The parents are committed to seeing this therapy through, but the father has that lingering awareness that this nothing the tumor has not shrunk:
Whether we have returned to a feeling of optimism or not remains to be seen. I still feel uneasy about the fact that we are so far on without the tumour shrinking. It is frustrating, because we have worked SO hard with the treatment – our entire lives are ruled by it and it is almost a full time job sorting it all out – we just share it between us and make it happen. We just know to be patient, and we 100% know it can work.
At this time, Amelia was returning to school (she had already been going to nursery school on treatment). And the way it appeared in the press, and certainly how I and other skeptics read it, it was being promoted as, “See? This treatment is working enough to let this little girl go back,” a human interest story (The Mirror’s coverage was profoundly disgraceful–suggesting UK doctors “refused to treat” Amelia, whereas when you look above you see that in fact: “The doctors here are being very cooperative – but I must emphasise that they are recommending different treatment (chemo) and we have consistently turned this down”), and by god it was good to hear that Amelia was having a great time, but there’s a lot more going on than is contained in the articles. On the 5th we see how much support was needed to get Amelia in. This was not the return of a healed child that everyone took away from the coverage:
“There has been a LOT of organising around this, far more than getting a healthy child to school. We’ve arranged our nanny, we’ve had to work around the school timetable, we’ve had meetings with the school and the teachers and the hospital nurses and made everything happen. The school have been absolutely fantastic every step of the way – we literally cannot fault them.”
On the 8th, we see on the Facebook page:
“On Monday we have a physiotherapist coming to look at her to see if she can get her walking again. I tried a little walking with her today and she is really, really trying. You can see she struggles, like her brain doesn’t know how to do it but the conscious Amelia that we see and know does. It’s a bit like trying to write with the wrong hand – you know what to do but you can’t quite make your hand write as well as the other. She tries to walk, but can’t quite make it all fit.”
This is not a child improving.
September 10, on they were visited by Eric Merola for his utterly uncritical documentary about Burzynski. More on that in a moment.
On the morning of the 15th, Amelia woke up crying with a pain in her head. She went off treatment for a day or so and got better, not trembling, perhaps speaking a bit better. One wonders if she is not experiencing relief from the hypernatremia that can appear alongside such massive sodium doses and can have such side effects.
Amelia has a great couple of days in late September (and she really takes to her school!), and her dad talks about how the awful waiting game goes in between MRIs, which I have learned is how time is measured by cancer patients:
I’ve said this many times before, but the really frustrating thing for me is not having anything really tangible that tells you this is working, until we get the scan image in front of us. This means an 8 week wait between scans when you really have no idea what is going on, and if she gets worse like she did a few weeks back then I think you naturally assume the worst. Then she gets better, and you relax a little!
The October MRI shows no change. But later that month, the family is trying to come to grips with what life will mean in the likelihood that Amelia is not with them. It’s a beautiful post, and I hope you read it. It’s immensely sad and healthy and you can’t help but feel the full force of their grief and fear. This family is mentally preparing themselves for a horrible future, and this makes what happened next absolutely inexcusable by any measure.
By November 19th, Amelia’s right hand is immobilized, a clear progression, and the family gets the results of a recent scan:
What I don’t want to do is get ours, and everybody else’s hopes up about things. I could not bear thinking that this is working and then to be told it isn’t. (emphasis added)
What I will elude to is that the Burzynski clinic feel that there is a cyst forming inside Amelia’s tumour, very slowly. This does seem apparent on the scan images but we want to make sure this has grown over the longer timeframe. A cyst will form where there is cell breakdown, so clearly is a good thing from a ‘killing the tumour’ viewpoint, but possibly bad in that you then have fluid in a very difficult place to get to. We’ll address that little hurdle if we get to it being a problem in the first place.
This sounds exciting (it is), but we are really trying to be careful about getting too much so. Amelia has got worse, although she has had some improvement over the weeks before her MRI. This could be due to a number of factors and we know the tumour has not grown.
Another point with this is that the tumour isn’t shrinking, but if a cyst is forming then it might be some time before the tumour does shrink. We’ve always said that due to Amelia’s tumour being very slow growing, we have more time on our hands more than most kids who get this.
When this news was released on the family’s Facebook page, followed by rapturous confirmation the next day, it was brought the the attention of Orac at Respectful Insolence, who gave an honest medical opinion:
It pains me greatly to do this, because, no matter how I write this, it will be perceived as trying to take away the hope for Amelia’s survival that the Saunders family holds. Such is not my intent, by any stretch of the imagination. However, these “cysts” almost certainly represent areas of ischemia (low blood flow) leading to tissue death as the tumor outgrows its blood supply. This is a phenomenon commonly seen in advanced malignancy. I know this because tumor angiogenesis ia one of my areas of research interest. […]
Sadly, then, seeing “cysts” growing in Amelia’s tumor most likely says nothing one way or the other about whether or not it’s responding to Burzynski’s antineoplastons. That’s assuming that Burzynski’s interpretation of the scans is even correct, which I wouldn’t bet money on. Most likely, these “cysts” indicate that there is no therapeutic effect. I take no pleasure in saying this, but most likely this is true.
Amelia’s dad was understandably upset and actually responded to Orac on Nov 29th, but the day after Orac posted, the family updated their followers:
We know that some people doubt what we are doing. We understand that it is in human nature to question, and many people will not just take something on faith alone. But, ultimately, this is our choice. And that choice seems to be paying off.
Yesterday I sent a CD with the latest MRI scans on to our local oncologist and I’ll be waiting for their opinion. We’ll consider this, and then continue until the next scan and see if the cystic formation that we have been shown grows in some way. I don’t want anyone to think we just take things at face value and accept them – we consider what we see, what we are told, and get as many opinions as we can. We can see with our own eyes though that something has changed with the tumour and we hope this continues. Amelia’s tumour hasn’t enhanced or progressed, so we know it is unlikely to be anything other than cysts, but we will get that second opinion for sure.
Amelia had a magical week. She won a community award, the “Child of Courage” award, and was literally the star of a Nativity play with her friends. The reality of Amelia’s situation soon came upon the family, however. On 2 December:
The truth is, Amelia isn’t getting any better neurologically. We live with her every day and we see it. She is very slowly deteriorating and I think we would be putting our own heads in the sand if we didn’t accept this. On one hand we have the Burzynski clinic who believe the tumour is beginning to die. We are getting opinions here about this theory and we’ll very likely need another scan of a different type in early January to back this up. Everything is based on opinions – and nobody agrees, which makes it all very hard on us.
And the final assessment from the Great Ormond Street Hospital:
We had our meeting at Great Ormond Street yesterday and, sadly, they just don’t have anything for us. We kind of knew this before we went – but wondered if they might have a trial that we could take part in. Unfortunately they don’t.
They felt that Amelia is in the latter stages of the disease, and that what is called ‘progression’ has already started. This means her tumour is growing, the cancer is spreading and we don’t have a huge amount of time left. Again we had already guessed this was happening but it was good in a way to have another opinion of this.
Were it just a one-off bad interpretation of an MRI on the part of the Burzynski Clinic, we might have been able to write this off as a simple mistake. But it’s not. Not by a long shot.
- We first noticed this pattern in the story of Amelia S.
- The family of Haley S heard this (also, see the clinic’s heartless reaction to a stroke that the child had).
- The Clinic gave the same prognosis to Justin B’s family in 2006.
- We see a similar cyst in Leslie S.’s story (2006), and it nabbed Burzynski an extra $7,500 before she died.
- We see it AGAIN–as far back as 1994!–in Cody G.’s story.
- We saw it again in the case of Samantha T.
- We saw it again in the story of Christy M.
- A similar story came from Georgia State Senator Ed G.’s story.
- In the most grotesque horror show we’ve ever written about, Burzynski himself tells the family of Chase S. the same thing. Poor Chase ended up lying in state in his family’s front room for months.
Had Burzynski not used this line on the family who had given him by far the most publicity of any other in years, this recurring theme might have slipped by unnoticed. But it’s clear that this is not just a coincidence, it’s an M.O. predicated on false hope that strings parents and patients along. And it’s been going on for decades! And it leaves patients utterly crushed and confused. The few skeptics who have been working these stories in their spare time have found case after case of patients thinking that getting worse is getting better (a partial, growing list can be found in this post). Consider that the cases written up at this website represent 1/10th of the total cases we’ve been able to find and will be bringing to you, that we have only found a small fraction of cases, mostly from the most recent years, and that this guy has been operating for over 35 years! My god! Imagine what that means!
In light of this, when Eric Merola, in his new movie, says in a series of title cards:
Two months after this interview, Amelia’s tumor began to swell and fill with fluid.
There was confusion and disagreement among between their local radiologists and the radiologists in Houston, [sic] about why this was happening–
So her parents decided to discontinue antineoplaston therapy.
[Then he cuts to a picture of Amelia’s obituary and says,]
“Amelia passed away with her parents by her side on January 6, 2013.”
…it is fundamentally dishonest. There was no confusion. There was the right diagnosis and Burzynski’s diagnosis, a story that’s been spun for decades to desperate parents, and it’s a goddamned disgrace that Merola suggests that the parents’ evidence-based decision could have been related in any way to the outcome.
Instead of the usual plea for a donation to St. Jude Children’s Research Hospital, which researches children’s tumors and provides care for free, we’d like to ask you to make a donation to Naomi House, the children’s hospice center that cared for Amelia’s family in the last days and which seems to be the family’s preferred charity.
If you want to take action, protect the vulnerable, and put reliable information in front of patients who might be looking into this Clinic, the Skeptics for the Protection of Cancer Patients (facebook page here) have put up guidelines about how to boost good information into Burzynski’s search results.
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 Denise D.’s Story
Denise’s story is especially sad, as she was uninsured and was left to the generosity of the free market even before she went to Burzynski. She was 49 and single–her partner, Clifford, left shortly after the diagnosis in Feb 2009. It’s a little baffling to me, a layperson, as to how the first two physicians misdiagnosed her with mastitis for 9 months given that her mother had survived breast cancer. She shares the whole story of this period in this podcast. Nonetheless, when she was diagnosed, she began the normal course of chemotherapy treatment.
Chemo was really, really harsh on Denise, however, and she made an appointment at the Burzynski Clinic on the recommendation of her father, who had read about him in Burzynski’s chum Julian Whitaker’s book. I hold Whitaker partly responsible for what happened here. I’m sure he feels nothing but remorse.
Denise was in a bad spot. She worked as a temp, and she was desperate. It comes through in every line she writes:
I don’t want to die. I Want To Live. Except I don’t have the insurance, and I don’t have the money. It’s going to be a tough fight, I know. Tougher than anything I have ever done. […]
I am more scared than I have ever been…
But I Do Not Want To Die.
This is the state that people are in when they flee to Burzynski. And he turns that to his advantage. In mid April, she is at Burzynski’s office for a consult, according to the billing records she shares with potential donors, including a few scans (look at those whopping charges!):
- North Cypress Medical Center, Outpatient Infusion Center dated 07/03/09 @ $320.00
- Burzynski Clinic (monthly charge – PB Rx and Case Management) dated 06/26/09 @ $4,620.00
- Burzynski Clinic (monthly charge – PB Rx and Case Management) dated 06/18/09 @ $4,184.88
- Burzynski Clinic (8 tabs of Xeloda Rx) dated 06/15/09 @$327.47
- Burzynski Clinic (Zometa Rx, one month, required first month purchase from Clinic) dated 05/18/09 @ $1,278.00(comparative pricing)
- Burzynski Clinic (Zometa infusion procedure, month one,required first month purchase from Clinic) dated 05/18/09 @$240.88
- Burzynski Clinic (Xeloda Rx, one month, required first month purchase from Clinic) dated 05/15/09 @ $2,620.00(comparative pricing)
- Burzynski Clinic (Zolinza Rx, one month, required first month purchase from Clinic) dated 05/14/09 @ $3,229.00(comparative pricing)
- Burzynski Clinic (Tarceva Rx, one month, required first month purchase from Clinic) dated 05/13/09 @ $5,689.00(comparative pricing)
- Northwest Cancer Center Services dated 04/23/2009
- Houston Medical Imaging, PET/CT Scan #2 dated 04/16/2009@ $1,400.00
- Burzynski Clinic (Treatment Initiation) dated 04/16/09 @$2,055.00
- Burzynski Clinic, Consultation dated 04/15/2009 @ $735.00
- Northwest Cancer Center Services dated 04/13/2009 @$45.00
- Northwest Cancer Center Services dated 04/09/2009 @$281.00
- Emergency Room Visit – Houston NW Radiology Associates, Chest X-Ray dated 03/28/2009 @ $36.00
- Emergency Room Visit – Dr. Phillip Sutton, Duplex scan of extremity veins, dated 03/28/2009 @ $77.40
- Emergency Room Visit – Physician’s Portion of Emergency Care (Houston Northwest Emergency) dated 03/28/2009 @$635.00
- Northwest Cancer Center Services dated 03/26/2009 @$311.00
- North Cypress Pathology Associates, Glucose by Device dated 03/10/2009 @ $
- PET/CT Scan #1 @ North Cypress Medical Center, March 10 2009; Bill @ $1,270.00
- Dr. Kim Keller, Port-a-Cath Installation Surgery, dated 03/09/2009 @ $370.00
- West Houston Radiology Associates, readings/interpretations, dated 03/05/2009, 03/09/2009 and 03/10/2009 @ combined $
- Northwest Cancer Center Services dated 03/04/2009 @$89.76
- Northwest Cancer Center Services dated 03/03/2009 @$125.00
- Medications (antibiotics and anti-inflammatories) – Pharmacy History, July 2008 and March 2009: Walgreens; page 1, page 2@ combined $
- Medications (antibiotics and anti-inflammatories) – Pharmacy History, Feb, March, July, November 2008 and March 2009: WalMart; page 1, page 2 @ combined $
- Medications (antibiotics and anti-inflammatories) – Pharmacy History, Feb 2008 – April 2009: Kroger; page 1, page 2, page 3@ combined $
- History of Services paid to Dr. Kim Keller – Dr who diagnosed and treated as “staph infection” from July 2008 – Feb 2009 @ combined $800.00
- Receipt for exam by Dr. Bradley Waggoneer – Dated March 23 2009, this was an “emergency visit” as my regular Dr, Dr. Ronald Taylor, was on vacation and Dr. Waggoneer was covering for Dr. Taylor. Here is the exam history from Dr. Waggoneer, page 1, page 2, page 3, with the diagnosis of suspected mastitis @ $50.00
It looks like she’s being set up for what the Clinic calls “personalized targeted gene-therapy,” but which oncologists call a “chemo cocktail“:
Tumor Markers – Baseline
I had some blood work done which will chart my tumor markers, specifically something called CEA… My last oncologist never did this test, so I have idea what my baseline was, but Burzynski Clinic uses them, as does MD Anderson, so I have to hope they mean something.
From what I’ve found online, it appears that some Drs find Tumor Markers a good resource, while others don’t place much weight on such tests as a diagnosing tool.
Notice the false equivalence. Heartbreaking.
Her April PET scan is actually really quite bad:
Let’s present the “good” news…
While the size/condition of the breast tumor has not diminished enough to be considered significant, the activity within the 6 lymph nodes Has decreased considerably. So, the “evil of chemotherapy” seems to have done Some good Despite the “totally wrong” vitamin regime I was on.
Now, on to the Bad News…
We appear to have Metastasis
There are (most probably) 4 vertebra tumors – T9, L2, L3, L5 and possibly the mid sacrum (definition of sacrum) or see this illustration
So… the backache I’ve had the past 6 months is Not attributed to my weight or being out of shape, it’s most likely attributed to cancer in my bones.
Her blood work is bad too:
My liver enzymes are up very high. Too high. So high in fact, that it’s indicative of metastasis to the liver. Those results won’t be in til early next week (April 20-24), but it’s pretty much a given.
And… for the cherry on top of my party
Since we have activity in the bones and (probably) liver, we need to do a scan to check the brain cuz breast cancer typically metastasis to the bones, liver and brain.
At this point, I’m looking less like a Stage 2 and more like a Stage 4.
And she follows this with, god, the most direct statement about having cancer I have seen:
It’s a party.
In my Body
A cancer Party.
It’s my party and I’ll cry if I want to.
I’m screaming.
She is quite eloquent and often expresses her fears in verse:
Every time I move,
I realize that the dull ache in my back
Now has the designation of cancer.I wonder about my headaches
Are they, as I was told, Chemo Headaches
Or will they too be designated as cancer.I’m not ready for this…
On the 30th, she sees her father’s oncologist for a third opinion. This doctor has his act together and:
strongly suggests that I continue to follow the traditional treatment / recovery of chemo – surgery – radiation; he recommends a smaller dose of chemo, administered every week for 12 weeks, vs a larger dose administered every other week for 8 weeks. If I continue on the chemo path of treatment / recovery, this is definitely something I’d look into.
On May 8th she goes in to talk to the Burzynski nutritionist. She takes pictures of the consult scans the notes and handouts from the Clinic. It turns out they were mostly nutrition downloads from the web.
Denise is under some duress. On May 10, 2008 she makes an announcement:
Its Official.
I’ve decided to stop chemo and start treatment at The Burzynski Clinic.
This is a Big Decision and I HOPE its the right now.
I FEEL it’s the right one, but I’ve not always made the best decisions in my life…
At this point, she has given up treatment that has been vetted by the best minds in cancer and refined over decades to go to the Burzynski Clinic, which is a one-trick pony. As evidence, two days later she starts on sodium phenylbutrate [or “PB”], an orphaned urea cycle drug that Burzynski manufactures and sells off-label as part of his cancer treatment regimen. Oddly, she quotes the NCI’s position of this compound:
“However, there is no adequate evidence in the peer-reviewed published medical literature demonstrating that the use of sodium phenylbutyrate improves the clinical outcomes of patients with cancers of the prostate, breast, or cancers other than acute promyelocytic leukemia and malignant glioma. Current evidence is limited to in vitro and in vivo studies and Phase I studies. Prospective Phase III clinical outcome studies are necessary to determine the clinical effectiveness of sodium phenylbutyrate for cancer.”
So, what they are saying is, “Don’t take this yet for what you have,” but she does it. These desperate people need to be protected.
At The Clinic, PB is given to cover 96 of the minor genes that can’t be checked / addressed with conventional treatment.
I start with 1 tablet 4 times a day. Each day I add an additional tablet until I am up to 6 tablets 4 times a times (for a daily total of 24 tablets). This is done to make sure I can tolerate the drug and the increases in dosage.
It’s an expensive drug – $4500/month from The Clinic. This includes “case management” – which means I get to communicate with my Dr whenever I need to. Kinda what I thought a Dr was for, but guess it’s now called “case management”. There is no petition for financial assistance.
They sure don’t make it financially easy to stay alive… Maybe if it was more feasible, more people could afford it, and the cost would come down… maybe…?? I guess the bullet had to be bitten somewhere, and I guess it’s been determined that it is the patients who need to do the biting. Seems we get it coming and going…[emphasis added]
There is no petition for financial assistance because it comes from Burzynski. That statement about the “96 minor genes” sure sounds specific. So where did that number come from? Surely not NCI.
On May 13 she starts on Tarceva:
TarcevaToday I started on Tarceva, which is typically used to treat Advanced Non-Small Cell Lung Cancer and Advanced Pancreatic Cancer. I’ll take one 150mg pill per day. […]
Another very expensive drug at $4200/month. I can, and intend to, petition the manufacturer for financial assistance.
On the 14th she starts on Zolinza:
Today I started on Zolinza, an oral HDAC inhibitor which prevents DNA transcription and gene expression in some tumor cells – typically Cutaneous T-cell lymphomas. I’ll take one 100mg pill per day. […]
Another very expensive drug at $2217/month. I can, and intend to, petition the manufacturer for financial assistance
On the 15th, she starts Xeloda:
Today I started on Xeloda, the first FDA-approved oral chemotherapy for both metastatic breast and colorectal cancer.
Another very expensive drug at $2897/month. I can, and intend to, petition the manufacturer for financial assistance.
On the 16th, friends and family host a spaghetti dinner fundraiser.
On the 18th, she starts Zometa:
Today I took my first monthly infusion of Zometa, I will have 4mg/5ml each month.[…]
Yet another very expensive drug at $1087/month. I can, and intend to, petition the manufacturer for financial assistance.
The whole time, by the way, she is taking pictures inside the clinic and at treatment and during fundraising events.
She starts on Burzynski’s anti-aging pill, but this is right before we see the whopping Burzynski bill for May, which is guaranteed to age you:
The OTHER Burzynski Patient Group 
