Burzynski Patient Douglas W.’s Story

As Stanislaw Burzynski heads to court again to answer charges made by the Texas Medical Board on behalf of a variety of patients, he is doubtlessly preparing by getting the testimony of current and former patients. In anticipation of this pony’s one trick, we are going to start telling the stories of patients who have testified on Burzynski’s behalf over the course of his long, dubious career and see where they are now.

Douglas W. was a Burzynski superstar. He was a helicopter crew chief in Vietnam and then became a corporate jet pilot. On June 26, 1994, according to a March 6, 1996 report in The Oregonian, Douglas received a bad diagnosis. He had a brain tumor, a glioblastoma. According to the report:

[Douglas’s] life gave way to surgery, 33 radiation treatments and four months of conventional chemotherapy. The worst still was to come.

In January 1995, [Douglas] and his wife, Lola, heard bad news from their oncologist: The tumor still was growing. The doctor told [Douglas] he had three or four months to live.

At this point, Douglas turned to the Burzynski Clinic and went on antineoplaston treatment. It was not cheap:

In the past year, his quest for life has taken him close to the center of a national medical controversy. He’s spent $75,000 traveling to Texas and paying for chemotherapy that his insurance wouldn’t cover.

Antineoplastons are the almost certainly ineffective chemotherapy that cancer quack Stanislaw Burzynski has kept “experimental” for 4 decades. Though the experiments have led to no reputable publications, he sure has managed to charge hundreds of patients top dollar for the drug derived initially from human urine and blood. Essentially, Burzynski posits that cancer is caused by a lack of “antineoplastons” in the blood, that cancer is basically an antineoplaston deficiency syndrome. No other physician on the planet recognizes this as a cause of cancer, and no competent physician says there is evidence of this alternative immune system that is supposed to take care of cancer.

Regardless, the reason why Douglas is a superstar is revealed in the next few paragraphs of the article:

Eleven months after he started a chemotherapy unapproved by the Food and Drug Administration, [Douglas] is in full remission. […]

Last week, [Douglas] testified before a congressional subcommittee investigating the Food and Drug Administration’s obligation to patients with life­ threatening illnesses. He appeared on “Nightline” with Ted Koppel in defense of Stanislaw R. Burzynski, a Texas doctor who has been giving unorthodox chemotherapy to cancer patients.

In fact, according to the transcript of the May 19, 1995 Nightline episode, Douglas was used as an example of “desperation”:

DAVE MARASH, ABC News: [voice-over] The first thing you feel in the waiting room of Dr. Stanislaw Burzynski’s Houston, Texas cancer clinic is the desperation.

DOUG [W.] My name is Doug [W.], and I’m from Estekay [sp?], Oregon, which is southeast of Portland, and I’ve got a- I don’t know what it is, but it’s a brain-

WIFE: It’s a glio- it’s a glioblastoma.

DOUG [W.] : -glioblastoma, stage IV.

Back to the Oregonian article, where we see some surprising endorsements:

[Douglas] is in the spotlight because his tumor, an aggressive, advanced stage of glioblastoma, no longer makes a blip on a brain scan. His remission amazed his doctors in Portland.

Dr. Gerald L. Warnock, a diagnostic radiologist with the East Portland Imaging Center, has evaluated four or five of [Douglas’s] brain scans in the past year. He said the most recent scan, in January, was totally clear of a tumor.

“I have never seen it happen before,” said Warnock, who has evaluated about 50 patients with brain tumors.

He said [Douglass’s] remission could be a delayed reaction to his conventional treatments, a miracle, or the result of antineoplaston, the drug administered by Burzynski.

Warnock said he is skeptical of unconventional treatments.

“One case doesn’t make a doctor a hero,” he said.

Still, Warnock is impressed with [Douglas’s] remission, because he’s seen his brain scans, both before and after antineoplaston.

“If I had a relative with that particular type of tumor, I think I would send him down there,” he said.

Dr. Bruce Dana, a medical oncologist who treated [Douglas] with FDA approved anti­cancer drugs, also is impressed with [Douglas’s] remission. He said he has never seen a glioblastoma disappear after earlier scans showed it growing.

By any measure, these doctors are being irresponsible. Going to the press with a data set of one person is irresponsible, especially when the stakes are so high, namely a treatment for an intractable tumor. This is not the last time we’ll hear from Dr. Warnock, however.

Of course, we have seen too much weirdness with Burzynski’s charts in the past (we’re thinking of the time that the FDA got two different sets of records, one from Burzynski’s IRB and a different one from the Clinic, about a child whose death sparked a federal investigation–whoops!) for us to accept the interpretations of anyone who has received records from the Clinic. This is a major reason that the definitive study of ANP can’t possibly come from Burzynski’s outfit. They have shown themselves endlessly incapable of maintaining charts and running clinical trials.

Douglas was out among the 75 patients protesting outside the courthouse as Burzynski faced federal charges in February 1996:

Doug [W], a patient of Burzynski’s, expressed hope that Lake will allow continued treatment. After being on the unorthodox treatments since last summer, [Douglas] said his brain cancer has disappeared.

“I had done everything my doctors in Portland told me to do and then after 33 treatments of chemotherapy and radiation, they told me to give up hope. They said I only had two to three months to live. But I wasn’t ready to give up hope. That’s why I came here.”

On the 29th of February, Douglas was in Washington, D.C. and had five minutes in front of a House committee as patients were paraded in front of congressmen and cameras to beg for their lives.

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And here’s why Burzynski and his legal team use patients as human shields. Because patients channel their whole being, their entire hope into the campaign to keep their doctor, who they are allowed to believe is the only thing keeping them alive.

The next time Douglas appears in the media, it’s in the Peoria Journal Star on 5 July 1996, which opened:

Just months after Douglas [W.] went on national television and before Congress to praise an unproven drug for obliterating his brain tumor, he got a shock: The cancer was back.

[Douglas’s] trauma illustrates the contention swirling over “antineoplastons. ” Are they the wonder drugs that desperate patients insist? Or are patients the victims of a fraud charged in a federal indictment of the drugs’ creator, Dr. Stanislaw Burzynski? “There is a long history of promises of miraculous treatments, and they unfortunately generally don’t pan out,” said Dr. Richard Klausner, director of the National Cancer Institute.

[…]

[Douglas] even stands by Burzynski, abandoning antineoplastons only when his brain tumor tripled in size. “We believe that treatment did work with Doug for a year,” said his wife, Lola [W], of Estacada, Ore.

It is sad, but entirely to be expected, to see that Douglas supported Burzynski after a clear failure. They believe the treatment works, but from the outside it is impossible to distinguish between a tumor growing steadily but slowly for a year and a tumor growing like crazy only in the last weeks. This is why we need trials. This is why patient testimonials are veridically worthless.

And we’re not the only ones who question the value of Burzynski’s treatment. Dr. Warnock, the radiologist who said that it looked like he would consider sending a family member to the Clinic after he saw Douglas’s scans, has had a come-to-Jesus moment:

The biggest question is how patients fare over the long term.

Take [Douglas], whose brain scans showed in January that his tumor was gone. In April, it was back. Triple antineoplaston doses failed.

[Douglas’s] doctor cannot explain the initial disappearance. But the relapse and a second patient who had “a flagrant progression of the tumor in 60 days” make him “extremely skeptical,” said Dr. Gerald Warnock.

We suspect Warnock has learned to not speculate wildly in public and that’s why he doesn’t explain the initial disappearance. Doctors and other medical professionals who work with Burzynski’s patients have reported being stung when they see what giving him the benefit of the doubt leads to. Take Dr. Bennett, who treated a girl in New Hampshire earlier this year:

Bennett’s decision [to treat the girl] was based, in part, on a newspaper article that said Burzynski had agreed to donate the medicine required for [ML’s] treatment. But what Bennett didn’t know is that Burzynki planned to charge the family for the clinical costs associated with the therapy.

[ML’s grandfather] said the first month’s bill is expected to be $28,000. Every month after that is expected to cost $16,000. The treatment usually lasts eight to 12 months.

Bennett says a representative of the Burzynski Clinic called him on that date seeking payment for the first month of [ML’s] therapy. Prior to that, Bennett, who is donating his services, thought Burzynski was doing the same.

Instead, said Bennett, “I’m supposed to be the bag man for all of this. They want me to collect the 30 grand for the family and send it to Burzynski.”

Elsewhere, Bennett said that the arrangement “meets all the criteria for a bait and switch operation.” And still elsewhere, he said:

“This is a classic bait-and-switch operation,” Bennett said of Burzynski in a recent phone interview. “He suckered me and this family into buying into a very expensive treatment plan.”

[…]

Bennett has become dismissive of Burzynski’s alleged treatment.

“His claims have no merit. He has never tested any of it realistically,” said Bennett.

And the IV-certified nurse who visited the Burzynski Clinic was apparently not impressed either:

Bennett noted as an example training for Ariel Dye, a registered nurse from Derry who oversaw the intravenous injections of [ML], which cost many thousands of dollars but provided nothing of value. Neither Bennett nor Dye were paid for their help.

“I went out there and watched the nurse teach a layperson how to work off a central line. It was nothing,” said Dye, who is an IV-certified RN. “It was crazy to me that they charged this.”

“I got little to no instruction saying (things like) if there are major reactions, this is what you’re going to do in this case, in that case,” she said. “They made it seem like it was this big training program they put me through, but they lied and were looking to make money.”

Nonetheless, in the same article, and despite the fact that ML reportedly had a bad reaction to the drugs, her grandfather still supports Burzynski:

But [ML’s grandfather] thinks Burzynski has shown at least anecdotally that his treatment has more promise than anything developed by mainstream medicine.

“If he had more funding, he could come up with answers, but nobody wants to do trials with him,” said [ML’s grandfather], who blames Burzynksi’s patent for the opposition. “Because one individual has controlling interest over this, they can’t make any money from this man.”

[ML’s grandfather] also thinks that if the FDA had allowed [her] to be treated at Burzynski’s clinic in Texas, rather than requiring it to be done in New Hampshire under the oversight of a local doctor, she might have done better.

“I don’t believe any of that nay-saying stuff. I’m not going into this blindly,” said [ML’s grandfather], talking about the months of reading and work and meetings he has held on the topic. If somebody else he knew was diagnosed with DIPG, he’d recommend going to Burzynski.

Even though knowledgeable professionals who have nothing to gain from seeing Burzynski shot down and who clearly want to help cancer patients in any way they can, once they have actually worked with Burzynski very commonly come out entirely disillusioned, the targets of Burzynski’s scheme, the fundraisers and family’s and patients, often cling harder to the Clinic, because the alternative is perhaps too horrible for the healthy mind to contemplate.

According to Douglas W.’s obituary in the Sept 8, 1996 Oregonian, Douglas died on the 6th of September, mere months after he appeared before Congress as an apparent cure to testify for Burzynski. He was 48.

Burzynski Patient Elke B.’s Story

As Stanislaw Burzynski heads to court again to answer charges made by a variety of patients to the Texas Medical Board, he is doubtlessly preparing by getting the testimony of current and former patients. In anticipation of this pony’s one trick, we are going to start telling the stories of patients who have testified on Burzynski’s behalf over the course of his long, dubious career and see where they are now.

Our first patient is an MD and stage-IV breast cancer patient who testified in court for Burzynski in 2012, named Elka B. She was receiving chemotherapy from Burzynski:

ElkeB

Elke’s obituary, which ran in early November of this year (and is lovely–you should certainly read it, as she was a staggeringly kind and generous person), encapsulates the desperation that Burzynski’s patients and their families feel:

By the time Elke’s cancer was discovered, it had spread throughout her body. Doctors gave her a 5 percent chance of living five years, [her husband] said. She lived for 12.

At one point, [her husband] took Elke to a clinic in Texas, where out-of-pocket costs ran in the tens of thousands. “I don’t care if I have to live in a barn with you,” he told her. “I just want you to live.”

We should note that we do not know how long Elke was at the Burzynski Clinic, only that she was under treatment not even two years ago.

Elke will not be testifying for Burzynski in the upcoming trial.

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 James W.’s Story

Dec. 18 2003, was 5-year old James W. of Lake Arrowhead, CA’s third day of headaches and vomiting. His story was captured by the Mountain News & Crestline Courier-News. His parents took James to the doctor, but he sent them to the hospital for a CAT scan. By the end of the month, he would have two surgeries for a Grade 2 astrocytoma. It’s a bad diagnosis.

James underwent normal therapy, chemo and surgery, for this tumor. By September 2004, the family had run out of options. They decided to head to Stanislaw Burzynski’s clinic in Houston. Their decisions and treatment were recorded in great detail in an online journal. On Sept 27, James’s mom writes:

okay, big news: we are leaving for houston, texas early tomorrow morning. we will be going to the Burzynski Treatment Center for cancer. he’s controversial, not all in the medical community like him, but we’ve heard very good reports from patients.

This is not entirely accurate. I have yet to encounter a physician who would knowingly send a patient to that clinic. It is telling that Burzynski’s patients are mentioned here, as they have often been the principle recruiters for Burzynski. They fanatically support him. This is to be feared.

James and his family flies down to Texas on seats that were purchased by a friend. On the 28th, they are there. A family member updates the blog:

[James’s mom] just called to say that they went into the clinic to drop off James’s medical records.
She described the scene like this:

“As you walk into a large reception area you see several secretaries at a desk. Above them is a large crucifix, and behind that is a large picture of (Dr.Burzynski)the doctor who founded the clinic with the Pope!”

There is also a picture in the reception area of the Pope at his recent visit to Lourdes. You may remember that the Pope was given James’s name to pray for at Lourdes.

As you know, [James’s parents] are devout Catholics. This “Catholic connection” uplifted her spirit.

Burzynski’s connection to the Pope is tenuous at best, but he milks it for all it’s worth. Earlier this year, when John Paul was beatified, Burzynski ended up on local news talking about, well, himself:

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The piece, which seems to have been written by someone completely credulous (I would not be the least bit surprised if it was fed to the station by Burzynski’s own people), suggests that maybe, just maybe, he went to treat the Pope. This is, of course, a load of horse feathers. A photo proves nothing. Heck, my mom has a picture with John Paul II. She also cured him of imaginary cancer.

On Sept 29, we hear:

Today [Jim’s parents] met with two doctors from the Burzynski Treatment Center in Huston, TX.

After a full explanation of the treatment and a complete physical of James, they have decided to go ahead with it. No miracle cure is promised, and as she posted before, this is non-standard treatment. [James’s Dad] is looking into their Blue Cross Insurance to see if any part of this treatment is covered.

James will be treated with antineoplastons, a treatment only available at the Burzynski Treatment Center.

The routine is similar to chemo, James is infused and then progress is measured with scans.

[James’s family] plans to be in Huston for three weeks.

Of course it won’t be covered. It almost never is.

We see that the family is doing what so many other patients do, learning to administer the treatments themselves when they return to California:

James has a portable pump and [his mom] is being trained to administer all medications. Specifically flushing the porta-cath and handling IV equipment. She has emergency contact numbers and is becoming even more knowledgeable about medical treatment.

After three weeks she will be fully trained to take care of all medical needs. She takes James to the clinic every day and tests are done to monitor his condition.

On the 4th, more detail is given:

James feels really good. This is NOT chemotherapy. He is NOT in the hospital. We take him to the Burzynski Research Institute each day. We are there for about 3-4 hours getting trained on how to give James his treatments. He started this treatment on Thurs, Sept 30. A pump is constantly hooked up to his porta-cath and he receives the treatments every 4 hours. Each treatment lasts about a half hour. The treatment he gets is called antineoplastons. Really there are 2 different meds involved- one is to stop the part of the tumor that makes it grow, and the other is to kill the tumor. The side effects of these meds are minimal (especially compared to chemo!!). It creates an electrolyte imbalance, in that the sodium goes up and the potassium goes down. So, we have to have him on a very low sodium diet, and a high potassium diet (James is loving bananas!!) Also, to keep his sodium in check he has to drink ALOT of water. (I don’t have to mention that Burzynski’s patients have to pee ALOT!) Yesterday we got him to drink over 2 liters, and it made his sodium level go down today- so it worked like we wanted! If his sodium is even 1 point higher than 147 (the top end of “normal”), the FDA says that the patient cannot receive the treatment until it comes down. We REALLY don’t want him to have to miss treatments, so are on “sodium alert.”

To be clear, antineoplastons are chemotherapy by any measure. The list of side effects is gargantuan:

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Hypernatremia, elevated sodium, is the most frequently reported side effect on this website, I think. And the prodigious amount of fluid that patients end up drinking because of the insatiable thirst decreases their quality of life. They are up running to the bathroom constantly and sleep deprived. Sometimes the sodium levels can get out of control. For instance, take the case of Luna P., who was rushed to the hospital with a sodium level of 178. This is how her doctor reacted to that news:

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Make no mistake. Antineoplastons are dangerous on a good day. Further, leaving the patients to fend for themselves may have contributed to the over 100 overdoses that the FDA reported had taken place (only in the files they happened to review, mind you) with no evidence that any corrective action was taken on the part of Burzynski. These lapses are not in dispute. Josia C. died with a sodium level that is basically unseen outside of Burzynski’s trials. Nobody told Josia’s parents that, though.

On Oct 7, we hear that James is having very bad headaches, for which he is giving decadron, a steroid, to reduce swelling:

These doses are given i.v. by [James’s mom]. Part of the training that she is getting at the clinic includes giving this “emergency dose” when/if James gets headaches, so we are assuming that this is just part of what happens under this treatment. Who knows, maybe the pain is from tumor breakdown??!! The doc did say that if they continue, they could decide to send him to the hospital, which has special rooms set up just for Burzynski’s patients.

[His mom] will talk with the doctor tomorrow about the headaches. For tonight, the doctor said to hold the antineoplastons until tomorrow when they can look into the headaches.

What’s disturbing here is the suggestion that the pain is from “tumor breakdown.” This is a trope that is as loud as any in the stories of Burzynski patients and, by god, someone ought to investigate it.  Here’s how it is put the next day, right before James’s pulse drops and he goes to Texas Children’s:

We figure that with everything that is going on, especially the headaches, something is going on in his head. Who knows, it could be tumor breakdown, which is accompanied by swelling, which causes headaches, which requires steroids to reduce swelling- so much for my extensive medical training!

This is something that many patients have reported. Take Rory Z’s parents, who reported:

I am now an old pro at giving the Decadron…it’s amazing how things can change in 24 hours. I gave Rory his dose this evening…he started to eat dinner and w/in about 30 minutes he threw up again. Darn. Perhaps we have to wait longer until he eats? I talked to [Nurse] Marlene tonight before the Group Meeting…and she said vomiting isn’t that uncommon at first…they may increase the Decadron tomorrow. She explained that as the Antineoplastons turn off the cancer cells..they die…and the white blood cells rush to the area to clear out the dead cells. This causes swelling…which can cause the vomiting  She said, unpleasant as it can be..it’s actually a good thing.

Or you could look at Levi G’s story, another child with a brain tumor, whose parents reported:

The next day we talked to the doctors at the clinic in Houston and found some answers. According to them the tumor was breaking down. When it breaks down it causes swelling which causes pressure. We had to up the decadron (steroids) a little to keep the swelling down so that he could tolerate a higher dose of the treatment. They told us before this that he would get worse before he got better. But at this rate I wonder if he’ll ever get to the “better” part.

And this “getting worse is getting better” narrative is EVERYWHERE in the Burzynski patient stories. It’s a nightmare that we have found it as often as we have.

As James’s grandparent is writing this post, we hear:

[James’s Mom] just called me to say that the nurse said to call 911 and have them take him to Texas Children’s Hospital because he still has the headaches, his pulse is pretty low (about 60, it is usually 90-100) and he’s pretty sleepy (eventhough it is nighttime). Mare said that it may be a blockage of the shunt, thereby creating head pressure. We have seen in the past that when he gets head pressure, his pulse goes down, he gets sleepy and he has headaches. Anyway, I’m sure they do a c.t. scan.

The next day we hear how the visit to the ER went:

They went to the hospital, got a c.t. scan (which showed no enlargement of the ventricles, i.e. the shunts are working fine), got a dose of mannatol (which is supposed to reduce swelling- mare said she didn’t think it did much), and got an increased dose of decadron (steroid). The decadron seemed to help, in fact Mare said that now he is sitting up, drawing pictures, writing his name, talking, and drinking. Mare was in contact with Burzynski’s doctors the whole time, and she told the Texas Children’s Hospital doctors the whole story. They said, “wow, you guys have been through a lot.”

That’s not all that Texas Children’s Hospital doctors have to say about Burzynski’s patients. According to Jeanine Graf, director of the pediatric intensive care unit at Texas Children’s said, “I’ve never seen one survive long-term.” According to an interview with Dr, Graf that appeared last year in USA Today:

After caring for some of the Burzynski patients, Graf said she wouldn’t recommend his clinic to anyone. Although Burzynski’s patients can’t always be cured, she says, they do have choices.

“The most valuable commodity that a person with a terminal illness has is time,” Graf says. “You want to make sure that when you’re investing time in any therapy, that you are going to get a return on your very valuable last investment.”

Even Burzynski’s supporters, like Luna P’s mother, reported that Texas Children’s Hospital staff were always “cleaning up Burzynski’s messes.” As reported to the BBC investigative show, Panorama (reviewed by Orac at Respectful Insolence):

Luna was brought to the Texas Children’s Hospital during her time in Houston, and the staff there recognized right away that she was a Burzynski patient because they had seen so many similar patients suffering the same complications before. It was also clear how much contempt the staff there had for the Burzynski Clinic. If there’s one thing Panorama did right in this report, it’s showing how seeing so many already dying children show up in our ICU because of hypernatremia due to antineoplaston therapy will do that. Perhaps the most devastating part of this segment was seeing Dr. Graf stating, point blank, that she’s never seen a Burzynski patient survive. [emphasis added]

The next day, James is admitted formally into the ICU at Children’s, according to his mom:

James was admitted and is in ICU. The doc from Burzunski’s clinic said we are at a very critical stage. the tumor has swelled up and is bleeding. he had an mri yesterday which showed that it doesn’t seem to be bleeding anymore than it was the night before with the cat scan. we are very touch and go right now. every hour is critical. james may pull through this if his body can stop the bleeding itself, or he may not. he is on the highest dose of decadron that adults get. he does not have any more headaches except occasionally and they go away. we now understand how necrosis can cause problems just like the tumor.

I wonder about the necrosis statement. In fact on the 15th, James’s mom describes this whole episode leading to James’s admission into the hospital as an “intratumoral bleed.” His mom reports that the doctor (whose affiliation is not mentioned, so we don’t know if it is one of Burzynski’s people or someone from TCH) said:

the doc said that the bleed could have possibly helped if it was destroyed then part of the tumor could be dying since it no longer has that blood supply. i’m hoping the low grade fever is a sign of white blood cells cleaning up dead tumor

So a bleed inside the tumor with possible necrosis. We have seen innumerable patients who talk about necrosis in the center of tumors as if they were a positive development instead of the more likely scenario, that the tumor has outgrown its blood supply.

On the 15th, James is still touch and go, it seems. His breathing is labored (possibly because of the steroids) and he seems to not be able to get much rest because if it. On the 22nd, James’s grandpa writes that the boy is too sick to travel home from Houston, as was planned. And on the 23rd:

James was admitted earlier today to a nearby hospital and later transferred to Texas Children’s Hospital. His symptoms are headache, vomiting, non-responsiveness, and incoherence. He had at least one seizure.

[James’s mom] called and said that the doctors do not think his present condition is related to the tumor but rather to a low sodium level. They are adjusting his medication to try to keep his sodium level where it should be. You may recall that the medicine from the clinic causes highsodium levels cured only with large intakes of water.

Over the next two days doctors bring James’s sodium up in the ICU.

On Oct 31, after a clot in the chest port and low white cell count, the family returns to California. On Nov 3, however, it’s off to the hospital in an ambulance again, as James’s sodium is off and he’s having symptoms similar to the ones in Houston. The staff at the hospital, Loma Linda, is very accommodating and takes over the administration of the antineoplastons. They are hoping this move will “minimize trips to the hospital.” Further they put in a g-tube:

that will allow fluids directly into his GI tract will be done. It may be tomorrow. That’s what all the testing was about. If they can successfully do this, it will allow large amounts of fluids directly into his digestive system to counter high sodium levels, a side effect of the antineoplastons (from Huston clinic).

As his grandfather puts it on the 8th:

The medicine he takes to defeat the tumor (6 doses a day) contains 12 GRAMS of sodium as well as other chemicals. The only cure for high sodium is ingesting extremely large quantities of water. It is difficult to get a six year old to force himself to drink so much water.

The costs are mounting and the family opens a fund for James on the 17th. On the 19th they are at home again, and we quote James’s mom at some length:

we are trying to get settled in, setting up all our pumps and equipment. the home health nurse who came to help last night said that we are basically running an ICU unit. she said it’s the same level of care and responsibility and we believe it! we practically have a whole pharmacy on our dining room table.

last night was ok until 2 am when james’ steroids kicked in and he stayed up until morning asking for food. so,

we opened up the kitchen and got to work!

so much has happened since texas, i’ll never have time to tell it all. on the outside, james seems worse than before. all the hard work he did over the past year, re-learning to walk and use his right arm, disappeared overnight when he had the intratumoral bleed. he is now weaker than ever on the right side. his left side is also weak simply from being in a hospital bed so much. his left eye is also weak, but seems to be getting stronger. however, we’ve noticed subtle improvements in his personality, interest in the outside world, and vocabulary. these improvements come and go. with this kind of treatment, you have to “get worse” before you get better.

It’s hard to write this and not seem like you are attacking the family, but it is crucial to illustrate how someone can rationalize staying on a treatment that is not working. First, you see basically contradictory assertions: James’s condition is deteriorating and he is getting better, but even those less objective improvements are flickering. The merciless trap that so many patients of the Burzynski Clinic fall into is summarized in the last line: You have to get worse before you get better.

James is getting worse. He does not get better.

His sodium is up again on the 20th and he’s off treatment. Then he crashes hard after going for a walk with his family. His heart rate is down. They think this might be because his sodium is too low and so they feed him. After getting 2 feet of snow on the morning of Nov 22nd, the fire department comes to the house twice to collect James’s daily blood sample and then to take him to the hospital when his platelets are at 36,000, what the family calls “a major medical emergency” (usually they would transfuse a patient at 70,000). He is at risk of bleeding out. At this time James’s father reveals how much this decline is costing in an appeal for help, as the insurance company (of course) is not going to pay for Burzynski’s treatment:

Now, I am humbly asking for donations to help us pay for this treatment. Each month, it costs $7,600 for James to be in the clinical study at the Burzynski Clinic. If the cancer is responding to the medication, James could be on the treatment for up to a year and a half- or even longer! We pray that this will be the case (of course, we continue to pray for the instant, miraculous healing of James as well!). We will find out if the tumor is responding by the MRI’s that he will get every 2 months. So, this is very costly, and we need to once again ask all of you, our wonderful support network, to help us.

The family moves in to Ronald McDonald House facilities because:

the docs at loma linda really want us to stay nearby. we agree.

By this point, James has already had about a dozen transfusions. On the 28th his sodium tanks. His father writes:

Loma Linda Hospital has been EXTREMELY cooperative in letting us do these trial meds with their help. It is cool because I can see that they are really interested and they want to know all the details of James’ history and of what this treatment is all about. Hopefully in the future, many more kids will be able to benefit from the medication from the Burzynski Clinic.

We have not seen James benefit from them. He has been living in a hospital a huge percentage of the time since he went to Houston. And the family asks for money again the next day. They are able to bring him to Ronald McDonald House with them. He seems to not be producing platelets, white cells or red cells.

On the 9th of December, the long awaited MRI takes place, though the fluid on James’s lungs makes them decide to not sedate him for the 2.5 hour procedure, and he gets through like a champ. Says his mom:

the doc from burzynski’s clinic said that we are going to hold off on the antineoplastons for a “few days” to see if his blood counts start to go back up. it’s not supposed to suppress bone marrow, but with james nothing ever seems to happen the way it’s “supposed to.”

tomorrow he will go back over to the hospital for 2 transfusions: packed red cells and platelets.

we are glad this day is over, i was worried about him being sedated with that cough. i’m trying not to obsess about the scan, but it’s very difficult.

On the tenth, no word on the scan:

we still don’t know too much about the scan results…the main problem is that they wanted to compare it to the one we had during the tumor bleed in texas, but nobody could find that scan!

Hm. A CD of the scan has been sent to Houston. In the meantime, they are trying to determine if James has pneumonia. The steroids he’s been on have suppressed his immune system and he might not be showing the typical symptoms, like fever.

Finally on the 14th, the results from Loma Linda:

“Except for a .5 cm (1/4 inch)growth into the hypothalamus, the tumor has not changed since the Texas/bleed MRI. The bleed is smaller and there is less edema(swelling.)” !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This is what Dr. Fae relayed to me over the phone today. We are very happy because from August 9th to Sept 21st, while on chemo, it grew over 100%.Basically, it seems as though the antineoplastons have put the brakes on this tumor even though we were never at our maximum dose and we had many interruptions in treatment.

we have not heard from Bursynki’s docs yet. as soon as we do, we will let y’all know!

This means it’s growing. A tumor growing explosively like it was before they went to Houston levels off as a matter of course. The size of the tumors follows something called a Gompertzian growth curve, which looks something like this curve (for another cancer):

cancer_clip_image002_0000 So, it’s probably a bad idea to lean too hard on a second data point and conclude that the tumor’s progression has been altered by the antineoplaston treatment. And let’s say that the tumor has actually stopped progressing–how do we know that it is the ANP that is doing it, not any of the dozens and dozens of other treatments and procedures that James is undergoing? No, at best one must conclude it is too early to say.

On the 18th, the 1-year anniversary of James’s first symptoms:

Although the doctors at Loma Linda said that the last mri showed no change except for the quarter inch growth toward the hypothalimus, the doctors in Houston say that there has been “about a 15% increase in enhancement.” (enhancement means blood flow and activity) They said what this means is that the lower grade aspects of the tumor are being stopped, while the higher grade aspects seem to be “enhancing.” […]

Anyway, we are deciding to not dwell on the “enhancement” issue. All we can do is to continue to take care of him on a hourly basis (minute by minute really). Worry really doesn’t help. So much is involved in taking care of him that there really isn’t time to go down that road, although we find ourselves in very distinct moods, depending on how he’s doing. We get all excited when he is just able to open both eyes (which he practiced today, but was very difficult).

This does not seem to be a boy getting better.

On the 21st, the mom notices that James hadn’t had a sneeze or yawning reflex for a while (those reflexes originate in the brain stem), and how he has them. Granting that this is true (and not, say, confirmation bias), James is able to squeeze his dad’s hand on command and they even took him home for a bit. He feels good on this day, and the way she describes it is telling:

i even checked the pump that infuses the medicine into him, because i started thinking it wasn’t working right…he was feeling so good.

Antineoplastons can degrade the quality of life for the terminally ill.

He is still receiving infusions, and his sodium is too high for them to keep infusing him. On the 26th, after James was unable to stay awake for opening Christmas presents. We now see that his steroid doses have been enormous:

[The doctor in California, James’s mother] and I agree that this is most likely due to the weaning process with the steroids. We had gotten down to 2mg, 1mg, 1mg over 24 hours. Back a month or so, he was on 8mg, 8mg, 8mg, 8mg over 24 hours, so he was getting 32mg/day!! (an extremely large dose even for a huge adult!!) Anyway, we all decided to get him back up to 2,2,2 and see what happens.

On the 29th, James is still lethargic and he has had a poor appetite, and they think that the tumor is bleeding again. He is getting 4 liters of water a day through his tube. This may be leading to low sodium the next day, when they take him back to the hospital, where they find:

he was still very lethargic, could hardly hold his head up, and his right pupil was fixed and dilated, not responding at all to the flashlight.

The pump, it turns out, was broken, not pumping the high sodium ANP into James, and while he was still getting what are typically dangerous doses of water. The Burzynski Clinic sends a new pump. On the 30th, mom’s description suggests James is very poorly:

after this morning of eating popcorn and perking up a bit, he went to sleep and has been asleep, or just laying there with his eyes closed. he is not talking or even answering our questions. i know he hears and understands us because he will squeeze my hand when i tell him too, but he just won’t talk or open his eyes…although sometimes i catch him with one eye open a tiny slit but then he closes it when i see him. the nurse from houston said he may be sleepy for a couple of days because of the pump malfunction, etc.

On New Year’s Eve, the only update is:

james has a very large bleed happening now. doctors are very concerned. urgent prayer and fasting needed

The next day he manages some extremity-wiggling on command and swallow a few bites of food. The doctors are trying to “dry James out,” as his parents put it, and his heart rate picks up, but he’s not usually there.

Sadly, the poor kid seems to be really slipping away (some of the reactions seem like he’s in a vegetative state). To get a sense of where he is, on the 6th we receive a report:

Today, Mare and I got some good (and much needed) encouragement! We sat James up like we did the yesterday and the day before with the physical therapist. James was able to hold his head up for about 35 seconds several times! While he was doing this, his right eye was slightly open and he seemed much more alert than he has in the previous 5 days. Of course, we made a huge deal and told him how proud we are of him that he is working so hard. Also, at one point, I asked him to hit a ball that Mare held in front of him. He didn’t do it, so I did it hand over hand with him. Then I asked him is he could hit the ball, and he actually shook his head “no.” That was very encouraging because he really responded to me, which he hasn’t done much lately.

That seems an ambiguous response at best. On the 7th, acidosis is setting in, a condition that can be fatal very rapidly, but it reverses and he levels out. On the thirteenth, the father reports that James says, “What?!” in response to a question. The staff is manually moving food out of his stomach using a syringe in the g-tube.

On the 25th, James is still “asleep.” It’s clearly not sleep at this point. By the 31st, the doctors say that James has pneumonia. On February 3, James’s dad reports:

James’ breathing is extremely labored. He is now on a special type of mask that has a very large amount of humidified oxygen going. He is breathing through his mouth, his nose is inflamed, clogged (with blood), congested. We have been cleaning it out with saline and some non-invasive suction. Still he is breathing through his mouth and having a very difficult time.

They have been staying at a Ronald McDonald House by the hospital since November, and on the 4th, the manager tells them that they need to move out by the 11th. On Feb 9, however, someone at his bedside reports that James is acidotic, his breathing is failing. He dies an hour and a half later. He was 6 years old. Burzynski’s treatment seems to have done nothing but make the boy miserable while he was conscious.

It’s a disheartening story. We have a thousand names, a thousand stories. We are working on them, one by one.*

Burzynski Patient Holly G.’s Story

Holly G. was an 11-year old girl with brain cancer (astrocytoma) when she left her home state of New Mexico in February of 2001 to go to the Burzynski Research Institute with her family for treatment. Burzynski’s antineoplastons would cost the family $20,000 up front and $9,800 every month thereafter. On the 1st of March, the paper back home, the Sangre De Christo Chronicle, gave an update about her progress and interviewed her father, who said that she was in a wheelchair with cerebral edema:

“‘With this type of tumor, sometimes that’s what happens. I see it as a temporary thing.’

Holly had an MRI […] Monday night and Ed said they would learn its results Tuesday.

[Holly’s dad] said the swelling may be caused by the tumor’s reaction to the treatment. ‘The swelling could be from tumor cell death. I’m waiting for an interpretation of the MRI. I’m waiting for the experts to tell me what they’re seeing. I think the treatment is working, that the tumor has reduced.'”

The paper also notes that “Holly is taking a diuretic and steroids ‘to reduce cranial inflammation.'”

This first report about Holly’s treatment is extremely telling. First off, they are speculating about the tumor already shrinking. Of course the father is clinging to that interpretation; how else does someone facing something so horrible keep it together? He is explaining in exactly the same terms that other Burzynski patients have reported excitedly. Take, for example, the report from the parents of Rory Z. (deceased):

“I am now an old pro at giving the Decadron…it’s amazing how things can change in 24 hours. I gave Rory his dose this evening…he started to eat dinner and w/in about 30 minutes he threw up again. Darn. Perhaps we have to wait longer until he eats? I talked to Marlene tonight before the Group Meeting…and she said vomiting isn’t that uncommon at first…they may increase the Decadron tomorrow. She explained that as the Antineoplastons turn off the cancer cells..they die…and the white blood cells rush to the area to clear out the dead cells. This causes swelling…which can cause the vomiting She said, unpleasant as it can be..it’s actually a good thing.”

Notice that Rory was on steroids (decadron), like Holly.

Another child’s father, Supatra A.’s (deceased) reported:

“We were told last Wednesday that as the antineoplastons work to kill the tumour cells it is normal for the brain tissue to swell with all the dead cells in there. This swelling is what creates the pressure and results in headaches and vomiting. If it occurs then we will start Supatra off on a low 0.5ml dose of Decadron steroid and increase as necessary.”

Again, decadron. Steroids suppress the immune system, including the inflammation response to tumor growth. In the brain stem, reducing that swelling (but not the tumor) might well lead to a slight perceived improvement in the symptoms like balance, breathing, and swallowing, which are rooted in the brain stem. This is exactly what happens to Holly and does not indicate that the tumor is shrinking.

Holly’s father, on the same page, reports that a 40% success rate has been given to him by the Clinic:

“Their big success rate is with these fast-growing cancers.”

This statement is not backed up by any clinical results. Burzynski has been known in the past to revise the definition of success in his favor. For instance, when the FDA inspected him last year they found that 60% of his outcomes were inflated, essentially all of his “positive” results in the sample.

The family’s hardships are heard by the state of New Mexico, and the legislature actually moves to pour money down Burzynski’s toilet, introducing bills that would put half a million dollars in emergency appropriations aside and would require “FDA-approved experimental treatments or procedures be covered by insurance.”

When Holly comes home in the March 29 edition, we see exactly the improvements we’d expect to see from high doses of steroids and we learn that the swelling was a side effect of the treatment (it does not sound like a sign of improvement):

“The treatments caused a few side effects — including cerebral edema, swelling in her brain which put her in a wheelchair, and made swallowing difficult and even led to a temporary respiratory arrest. ‘By no means is this treatment benign,’ said Holly’s father […]. She’s doing better than she was doing 2 or 3 weeks ago. Neurologically, certain functions are starting to return. She’s got some movement back in her arms and legs and she seems to be a little bit stronger. She can talk now, which is a big plus. The pressure seems to have been reduced. We’re still giving her medication ’round the clock.’

“Besides her antineoplaston treatments [Holly’s dad said] Holly is receiving other medications to help reduce the swelling on her brain and for other needs.” [emphasis added]

So she is still on steroids, and we see mild relief. For Burzynski, however, that’s not an encouraging sign. For instance, during last year’s inspection, the FDA noted,  “Burzynski had patients on steroid doses that were five to 64 times higher than the levels that doctors would expect patients to need.” This is a perverse finding. Nonetheless, it looks like antineoplastons nearly killed her, at least according to Holly’s father, a true believer.

In the same article, we get a rather equivocal report about her tumor:

“[Holly’s dad said her] last MRI showed 30 percent of the tumor may have died — ‘We’re not really sure.’ Holly will receive a second MRI in a week or two which, [her dad] hopes, ‘will be able to tell us more.'”

The line that “30% of the tumor may have died,” instantly raises red flags, and we only draw attention to it because we have read hundreds of abominable patient stories. They don’t say that it has shrunk. Burzynski’s patients are notorious for reporting that their tumors are dying on the inside and being excited about it. By far the most likely scenario is that it represents a tumor that has outgrown its blood supply. It’s a sign of progression, not improvement.

By this point, “Holly’s Bill” has passed the state legislature and is on its way to be signed by the governor.

On May 3, Holly is on life support. The paper reports that the tumor had previously shrunk, but that seems to be contradicted by the fact that a month later she is lying unresponsive in a hospital. Why do so many of Burzynski’s “improving” patients end up dead a few weeks later (hours later in the case of Andrea W.)? At any rate, what happens rate is infuriating:

“Although he pressed for the continuation of her Burzynski treatments, [Holly’s father] said the doctor refused, even told him, ‘This is just the natural progression of her disease.’ And he was pressured to take his daughter off life support.

“‘Now she’s fighting for her life because these guys wouldn’t do anything.’

“By Saturday, the hospital agreed to try the treatments and [Holly’s father] said, ‘Some of her neurological function has returned.’

“Now [her parents] are dealing with worry. They’re dealing with the fear a stubborn doctor may have cost their daughter’s life.”

We would be more confident that last statement was true if her physician had said it or if they reported she was off life support. She died on the 15th of May. It is difficult to reconcile the outcome and supposed improvement that her father reported.

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

Burzynski Patient Andrew S.’s Story

*An appeal to help get Congress to take action follows this story*
When you read the Caring Bridge blog [the source of this story unless otherwise indicated] from the S. family at the beginning of their story, you may be confused. Andrew was diagnosed with a brain tumor only days after his mother was diagnosed with breast cancer, so the planning for Andrew’s initial round of radiation coincides with his mother’s biopsy. I just can’t imagine what the family has been through.
On the day before Halloween 2007, Andrew has a port implanted. He begins chemotherapy and radiation the next day. He does a week on chemotherapy, but is soon taken off. The same week, his mother has the mass removed from her breast. By the 11th, his mother is able to be with her son at the hospital. The poor kid gets salmonella while in the hospital and has complications from the antibiotic he is on. The family can’t catch a break.
On November 14th, we hear:
Finally, some of you are aware that we have found a clinical trial (in Houston, Texas) that may possibly help Andrew. I will post more information about the trial as soon has I have time.
And the next day:
Finally, there have been some questions about the treatment we are pursuing for Andrew in Houston. Rather than giving you my own interpretation of the information, I’m going to give you a web address so that you can have as much information as you would like to have. Please, go to [website redacted] to check out the Burzynski Clinic. Andrew will finish his radiation treatments here before going there. (His treatment here should be finished around December 14.) They have tentatively said they would like us to arrive on the 26th or 27th of December. We are working out the details.
Andrew will finish radiotherapy before going to Houston. He has a bit of crisis late November, which lands him in the pediatric ICU after his sodium dropped and he was having seizures.
The radiation may be having an effect by the end of the month:
Written Nov 29, 2007 12:32am 
Andrew had an MRI done over the weekend. The report indicates “a large oval shaped mass which appears to originate from the right side of the pons.” (This is part of the brain stem.) The report also states, “…the mass does not appear larger and may actually be minimally smaller.” Dr. Saah said that the MRI itself shows that there is increased space between the mass and the back of the brain and that there is not as much swelling as there was when the first MRI was done on October 25th.
And the poor kid gets a damned kidney stone and UTI for Christmas. He still has salmonella.
Andrew is a clever, thoughtful kid. His parents take down all the weird little things that he says, and you should read them. There is a brilliant innocence in his use of language. My favorite example, I think, comes on December 7th:
Written Dec 7, 2007 8:51am
I’m having a PET Scan this morning, and Andrew has had lots of questions about it. A minute ago he told me, “I’ve had PET Scan.” I said, “You’ve had a CAT Scan.” He said, “Oh. (pause) Well, a cat is a pet, so I thought they were the same thing.”
Good news on the 15th. The cancer has responded to the radiation:
Written Dec 15, 2007 12:27am
Andrew’s CAT Scan report says “…the size of the mass is dramatically decreased.”Evidently this is somewhat unusual–even as a result of radiation. The nurse practitioner who works with oncology at the hospital has requested dimensions so that we have more of a specific understanding of what has happened.
Two days later, he’s back in the hospital passing kidney stones. Also:
They are checking on the possibility of scheduling an MRI (of the brain) for today–while we are still in the hospital. (It was originally scheduled for tomorrow night.) We need this MRI for the Burzynski Clinic.
His first appointment at the Burzynski Clinic is on the 27th at 9AM.
We met with Dr. Burzynski and one of the other doctors today at the clinic. Andrew will be having an MRI in the morning. There needs to be disease progression in order for him to begin treatment with the antineoplastons right away. (This is an F.D.A requirement; this medication is only available to those enrolled in a clinical trial.) If there is something–even something small–in the MRI that would indicate disease progression, Andrew will be able to begin the treatment. If not, he may become a patient of Dr. Burzynski’s in his private oncology practice; he will be treated with an oral medication–already F.D.A. approved–which is in the antineoplaston family. Being treated with this oral medication does not disqualify Andrew from being enrolled in the clinical trial in the future. 
The financial side of this became more of a reality today as we paid–up front–for the consultation and began to look at the payment schedule for treatment with the antineoplastons or for treatment as a patient in Dr. Burzynski’s private practice. Andrew’s medical needs are fully covered in the state of Michigan, but only emergency care is covered out of state. It’s interesting that this alternative treatment–which has had some success–is not considered emergency care. Medically speaking the standard treatment offers no cure–just more time. In the mind of a mother that means…this is an emergency! 
It is important to note at this point that the family has been told that the treatment has had some success. 
On the 30th, this update:
By the time we arrived back at the Burzynski Clinic, it was close to 4:00 pm. One of their doctors went over the films with us; he told us that there had been about a 10% decrease in the size of the mass since the last MRI only ten days earlier. The fourth ventricle of the brain–which had previously been pushed aside by the mass–now looks normal. Another doctor explained that because of this good news Andrew does not qualify for I.V. antineoplastons (one of the clinical trials) at this time. He will be seen in Dr. Burzynski’s private practice instead. 
We met with one of the doctors who works in the private practice, to go over the specifics of Andrew’s situation. We will be continuing to taper the decadron (the steroid). Today we cut the dosage down to 3 mg (from 4 mg) in the morning and 2 mg at night. We also raised Andrew’s zyrtec dosage from 5 to 10 mg to see if that makes a difference with his chronic sinusitis. (This is something that shows up on the CAT Scans and MRIs.) We are discussing the possibility of switching him to Singulair because he also seems to benefit from the use of an albuterol inhaler at times. (Singulair would cover allergy AND asthma symptoms.) Andrew also takes Prevacid (15 mg twice a day)
The day after this consult, a Saturday morning, we get an example of the fine care that you receive at the Burzynski Clinic for top dollar:
We sat in the waiting room until we were the only ones left. I knew that the port needed to be checked, and I had heard that the workers try to be out of the clinic by 11:00 am on weekend mornings. I was becoming concerned about the time, so I said something to the nurse. We were taken to a room at 10:15 am to speak with the doctor on call. I quickly realized that they were not planning to touch the port; it was getting late, and if a problem was discovered it would take too much time to resolve. I had to insist that the port be checked because we needed to know if it was working. It still would not draw, and the area around the port seemed irritated. (Andrew had been complaining all morning.) The clinic staff member wondered if there was swelling and suggested that we go to the Emergency Room.
By the time he gets to the hospital, blood has soaked through the port’s dressing. He is ineligible for the “clinical trial” because he has just had radiation.
Written Dec 31, 2007 1:00am
Someone has asked how we are feeling about the way things are going here in Houston. Andrew is not on the I.V. antineoplastons because he does not qualify for the clinical trials yet; however he is taking an oral medication (sodium phenylbutyrate) in the antineoplaston family. Rather than waiting for disease progression, we are attempting to fight the glioma before it advances. The I.V. antineoplaston statistics are encouraging–about 30% of patients have a dramatic or partial response to the medication (the mass is completely or partially gone), about 30% of patients become stable (no change), and about 30% of patients experience disease progression. Since most of the Burzynski Clinic brain tumor patients are on the I.V. antineoplastons, there are no statistics for the oral medication. One of the doctors said he felt that being seen in the private practice was better for Andrew because the treatment will be based upon exactly what Andrew needs rather than on the strict rules of a clinical trial.
What is so aggravating about this is passage the way the information is presented to them. The stats that they receive is that 60% of patients are at least stable. Burzynski does not have the clinical trials to back up this assertion. A further complication is that “any response” and “complete response” are grouped together in the same group. Seems very disingenuous to me.
Andrew’s mother returns to Detroit to begin her own chemotherapy on the first. It’s amazing how rarely she mentions her own condition as she documents this story. Her priorities are clear.
After the mother left, the Clinic springs chemotherapy on the family:
While [the mother] was preparing to start her chemo, we were surprised to learn that Andrew’s doctors in Houston are recommending a chemotherapy (Temodar) for Andrew which would go along with the oral medication he has been taking. The doctors were wanting to start it today, but the [S family] want to discuss this option — and the possibility of doing it at home — with their oncologists here in Lansing.
He’s back in the hospital trying to pass one of his kidney stones (there are 3) but gets out around the 12th. We soon hear what Andrew is on:
Written Jan 15, 2008 1:41am
Andrew began treatment under the direction of the Burzynski Clinic again today. He will be on three different medications–PB (the oral medication in the antineoplaston family) to help bring into balance the relationship between the oncogenes (onco refers to cancer) and the tumor suppressor genes. (In those who have cancer, this relationship is not right.) The other two medications will target specific oncogenes found to be a problem in Andrew. The first medication will target VEG-F which relates to a tumor’s blood supply. The normal level for this is anywhere from the 40’s to the 90’s. Andrew’s is over 200. The second medication will target another oncogene which is at the very top end of normal in Andrew–right on the borderline between normal and abnormal. Since I don’t fully understand this particular oncogene yet, I can’t explain it! 
On the 17th, a phone consult with the Clinic:
I listened by telephone to the meeting with Dr. Burzynski this afternoon. We are proceeding as planned–with the three medications; we are also lowering the decadron dosage. (We are supporting Andrew with two natural anti-inflammatories while we do this.) Dr. Burzynski indicated that it is unusual to see the results we have already seen from radiation alone, and that Andrew is doing extremely well. We have been told that dramatic response to treatment usually indicates a more aggressive tumor or cancer. He said that sometimes that is true, but not always. 
Things proceed fairly uneventfully until we get the next update:
Written Jan 25, 2008 11:57pm
[…] We had a great appointment with Dr. Gera, Andrew’s oncologist, on Tuesday. She spent so much time with us that she got behind with other patients. We went to have some lunch to give her a chance to catch up; then we went back so she could examine Andrew and talk with us at length about the Burzynski Clinic recommendations. We were having some difficulty at that time getting a doctor from the Burzynski Clinic to contact Dr. Gera. Because of this, we are still sorting out their recommendations and discussing them–along with their reasoning. God has blessed us with a wonderful doctor who truly wants what is best for Andrew and for our family. We are so glad that we are home and that Andrew is under her care!
In mid-February, as the family seems to be off-treatment in anticipation of having the kidney stones treated, the family starts to discuss other, better courses of treatment than the Burzynski Clinic:
Written Feb 18, 2008 10:50pm For several weeks we have been communicating with Dr. Kathy Warren at the National Institutes of Health/National Cancer Institute regarding Andrew. She looked at Andrew’s MRI to confirm the diagnosis (diffuse intrinsic pontine glioma) this past week, and has been very helpful in discussing (by e-mail and by telephone) treatment options with us and with Andrew’s oncologist. We are extremely impressed–and grateful–with how accessible Dr. Warren has been. She is not–yet–Andrew’s doctor; however, she responds to our e-mails and phone calls almost immediately. She has not tried to talk us into the clinical trials she is overseeing, but has presented them to us as options and has been willing to discuss other options (the Burzynski Clinic recommendations) as well. 
I am including part of a note I wrote to Dr. Warren earlier today because it accurately expresses our feelings about Andrew’s situation.
“…We understand the medical bottom line of Andrew’s diagnosis; however, we don’t want to live as if his life is over. He is full of energy, with relatively few physical problems–other than decadron side effects–right now. We know of kids who are doing okay with this diagnosis–2, 3, 4 and more years later. We can’t be assured that Andrew will be one of those kids, but neither can we be assured that he won’t.”
At some point, all mention of Burzynski simply….disappears. At some point I realized that I was simply following another patient’s progress through conventional, experimental treatments.
On March 2nd, we hear:
Andrew will be taking part in an Imaging Study under Dr. Warren’s direction. Dr. Warren’s research nurse is scheduling us to go to NIH some time in April. Dr. Warren has also encouraged us to take Andrew to see Dr. Stuart Goldman at Children’s Memorial Hospital in Chicago. We have already spoken to Dr. Goldman, and the plan right now is to wait to schedule an appointment at Children’s Memorial after we have the results of Andrew’s next MRI on March 10th.
So it seems that something has happened. A decision has been made. You would not know why they changed out of the Burzynski Clinic unless you go to the timeline in the family’s “my story” page:
February 2008
Andrew’s parents decide to stop the treatment recommended by Dr. Burzynski after conducting research and realizing that the children they could find who had been treated at the Burzynski Clinic for pontine glioma had not survived.
The family realized what skeptics know, that what happens in Houston does not save lives. Now, there is a note in March that the tumor had shrunk something like 65% from December. However, we can’t necessarily attribute that to Burzynski’s treatment, as Andrew was excluded from the clinical trial precisely because the results would have been muddied. Thankfully, the S family had a longer time with Andrew after diagnosis than most families, 25 months, and it’s clear he brought much joy to his family.
UPDATE, July 2014
In private communication from Andrew’s family, we were informed:
“There were red flags for us all along the way, but pulling away from the Clinic was not easy. It’s a cult-like environment. You feel like you are walking away from the group who has the answers. You are going to become one of those people who don’t understand and who don’t believe…. It was traumatic. That is why we simply stopped mentioning it on the website. We officially ended our relationship with the Clinic mid to late February 2008. We just did not know how to explain what we had just experienced.”  
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 so this never happens again.

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:

defensefund

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.

AmandaC

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 Chris, an old friend. On Christmas 2009, Chris 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 Chris 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. Chris 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:

  1. 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.
  2. Additionally, some patients admitted failed to meet the inclusion criteria for the study.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
All of that is included in the first observation. The second observation showed that Burzynski failed to maintain the records required by his protocols. Specifically:
  1. “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.
  2. 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.)
  3. 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.
  4. 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. Chris 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 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:

Chris 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 Chris 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 Christopher Faulkner 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. Chris phoned the doctor there and they’ve re-schelduled 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:

Clairejpg

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 Kyla F.’s Story

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

On 5 September 1996, 22 month-old Kyla F. was having trouble walking and swallowing, and her eye was turning inward. After months of exams, it was determined that she had a diffuse intrinsic pontine glioma, the nearly universally fatal tumor that people think, for some reason, that he can cure. These tumors can rarely be biopsied because they are tangled in the delicate wiring of the brain stem. Kyla’s was the size of an egg when she was diagnosed.

After 5 months of treatment on chemotherapy to little avail (and because her age and the placement of the tumor made radiation dangerous), the family began looking for new options. They heard about Burzynski through the father of a little boy, Eric Z., who had the same brain tumor. Eric is now dead.

At the time, March of 1997, Burzynski was allowed to continue to pump antineoplastons into children, but only as part of clinical trials. He opened over 60 “to treat every type of cancer the clinic had treated and everything Burzynski wanted to treat in the future,” said his lawyer. Notice he does not say, “every type of cancer that seemed promising” or “could be helped.” Nope. He wanted to treat these cancers and he did, charging patients tens upon tens of thousands of dollars to participate in his “trials.” Not a single damned one of them has ever been published, and the trust of every patient who participated in the trials expecting their suffering and money to go into useful research was betrayed.

It may be just as well, however, as the trials were incompetently run from every single measurable criterion, from the IRB that, if it were attached to a research university receiving federal dollars, would cause all the clinical research at the university to be shut down. The deficiencies outlined in site observations released in November of 2013 found:

Among the newly released observations by FDA inspectors:

  1. 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.
  2. Additionally, some patients admitted failed to meet the inclusion criteria for the study.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
All of that is included in the first observation. The second observation showed that Burzynski failed to maintain the records required by his protocols. Specifically:
  1. “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.
  2. 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.)
  3. 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.
  4. The clinic was unable to account for its stock of antineoplastons.
And this is not the first time the FDA has inspected his site and found it wanting. This is merely the most recent in a decade-long string of abysmal site reviews.
Of course, we should probably expect as much when Burzynski’s lawyer described the first clinical trial as “a joke” in his memoir.
Kyla started antineoplastons on March 7, 1997. The parents seem to have been told that Kyla might have 2 months. That year, according to her mother’s personal website (cached from geocities):
Kyla started that treatment and has been on it ever since, racking up a bill that is currently 157,500 dollars. As long as she continues to received treatment the money is of little matter. Some parents save for college, we chose to save her life.
To my knowledge, there is no account of Kyla’s life on treatment, however,  on 26 May, 1998, her mother reported at the old version of the Burzynski Patient Group:
On antineoplastons, MRIs of her tumor have shown that it has remained stable, a miracle in itself. A PET scan in November of 1997 showed decreased metabolic activity of the tumor.
This suggests that the tumor hasn’t shrunk. And “stable,” again, is a slippery term that doesn’t necessarily mean “not growing,” only growing very slowly. (Decreased metabolic activity in a tumor, after all, is still metabolic activity in a tumor.) It seems that the tumor is a slow progressing one. In the same update, the mother says that,
“Today, May 26, 1998, she even stood on her own two feet without support!
Did she not usually? There is nothing in this to suggest to me that this was more than a slow growing tumor that may have been allayed by the badly tolerated chemotherapy. Her symptoms may have also benefited from steroids, if she was on them.
Kyla died on Monday, June 14th, 1999 at 7:35 AM.  Her tombstone reads:
Kyla
Come on. Let’s Go
You are and always will be
our Kyla, our hero
Our miracle our sunshine
our hope, our child.
Her mother wrote a poem about her little dancer.
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 so this never happens again.