Tagged: burzynski survivors

Burzynski Patient Derek 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 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. Much of what follows is based on reporting from The Oregonian and on written testimony presented to Congress in 1996 in the same hearing in which Douglas W. testified.

Derek W. was just 7-years old but already knew what he wanted to be when he grew up: a preacher. His proud parents nicknamed him the “preacher in sneakers” and ensured he was active in their growing church congregation. Derek also enjoyed participating in his local cub scout troop.

On November 6, 1995, Derek’s parents received the devastating news that Derek had a deadly tumor in his upper brain stem. According to his dad, the news was bleak, so they scoured the country for a solution:

Without treatment he was given 3-6 weeks to live. With paliatory treatments, primarily radiation, he was given between 4 and 18 months. As any parent in our position would, we researched all known traditional and non-traditional cancer treatments.

The doctors’ recommendation of radiation was not likely to be curative. So the family decided to try Burzynski’s treatment antineoplastons because it “appeared to be based on firm scientific data.” Derek’s dad said Burzynski “felt that his success rate was as high as 20%,” but the trusting father acknowledged that the number “was not scientifically documented”.

Sadly, the data released by the Burzynski Clinic over the decades has been notoriously misleading. Indeed, the 20% survival number remains unsubstantiated even two decades later. And yet, other desperate families are still under the false impression that antineoplastons have been demonstrated to be safe and effective.

For example, the family of McKenzie L. thought she had a 27% chance of survival by being pumped full of Burzynski’s concoction. To a desperate parent, a 1-in-5 or better chance certainly sounds infinitely better than the 0% chance that brutally honest cancer doctors sometimes are required by ethics to provide.

The mother of Brendan B., who paid $10k to the Burzynski Clinic in 1991, describes the psychology in a 1996 New York Times article:

“I would have gone out and stood naked in traffic,” Mrs. [B] said. “I would have died in his place if that were possible. I would have done anything to make this child live.” Dr. Burzynski, she said, “offered us a thread to cling to.”

When she and her son Brendan were in Dr. Burzynski’s office, she said, “a very interesting thing happened.” She explained: “I got caught up in this whole thing with all these sick people, people coming and saying they were cured. I feel so stupid even talking about it because I am intelligent and educated and so is my husband.”

She believed in Dr. Burzynski, in spite of herself she said, because “this beautiful child is dying and here’s this person who may possibly have something.”

In addition to Burzynski’s treatment, Derek received radiation as recommended by his oncologists. His father is hopeful that the tumor’s lack of growth is a good sign:

We had an MRI that showed no new tumor growth since we began Dr. Burzynski’s medicine. We still feel [Derek’s] situation is shaky, and this does not mean the medicine is working for sure. It is our one and only hope. Without it, he for sure would die. With it, we still have a chance.

If only Derek’s parents had been able to speak to Mrs. B, who said, “It’s fine to say Dr. Burzynski offers hope, but you have to have hope in something that’s not ephemeral.”

And if only Derek’s parents had reviewed the results of a 1982 visit to the Burzynski Clinic by Canadian doctors. The doctors’ report contained a horrifying picture of what was happening in Houston, according to the 1996 NY Times article and a Usenet posting:

We were surprised that Dr. Burzynski would show us such questionable cases. We were left with the impression that either he knows very little about cancer and the response of different tumors to radiation and hormonal measures, or else he thinks that we are very stupid, and he has tried to hoodwink us.

As we look back over the cases were were shown, we are left with the impression that the only patients who are still alive either had slowly growing tumors, or had received effective treatment before being referred to Houston.

And the Canadians reportedly concluded:

After reviewing 20 case reports, selected by Dr. Burzynski as his best examples of clear cut responses to Antineoplastons we were unable to identify a single case in which therapeutic benefit could be attributed to Antineoplaston.

[…]

We believe that it is unethical to administer unproven agents such as Antineoplastons to patients without satisfying the requirements of the FDA and an ethics committee, that the minimum standards for human experimentation are being met. We also believe that it is immoral to charge patients for this unproven, experimental treatment.

What’s true in 1982 is still true today, since the American Cancer Society agrees that “there is no convincing evidence showing that antineoplastons actually work.” In fact, Burzynski has, according to FDA inspection records, a horrible time satisfying them that his evaluations of his trial outcomes are accurate. Indeed, the FDA recently found that his outcomes are inflated 2/3 of the time.

Derek died of his cancer on December 13, 1996, just over 11 months after his diagnosis. There is no available evidence that antineoplastons improved Derek’s survival.

Derek’s parents wanted to create a special memorial to their son. So when their church expanded to include three 40-foot crosses, they made sure one of them was dedicated in memory of him. The crosses were made of steel and shared their message at least 2 miles away.

Derek’s mom thought the memorial cross was a fitting way for her “preacher in sneakers” to continue to preach: “You want a chance to remember the person who died and to have their dreams live on. [The cross] is a testimony to our hope.”

 

Burzynski Patient Hannah H’s Story

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

On Oct 18, 2005, 4-year old Hannah H. began complaining of a headache after her mother took her to skating class. Her mom took her to the doctor who suggested that they go to the hospital to rule out anything serious. By the time they reached the hospital, however, Hannah was slurring her speech and was weak on one side. Very quickly it was determined that she had two brain tumors and one had started to bleed. The first tumor, a benign papaloma in the left ventricle,  was removed with surgery, the other, however, was on the brain stem. According to her mom:

They had to biopsy to see what it was – they had 6 Dr.’s in the operating room and were in there for about 4 hours. She came out of surgery fine with no problems and they were able to get a piece of tumour.

It was a diffuse intrinsic pontine glioma, one of the few diagnosed via biopsy. Hannah was in the hospital through Halloween, as was reported in the Vancouver Sun on Nov 1st.

The family continues conventional therapies (timodal and nemotuzamab) for the next year, but in mid-August 2006, the family is clearly looking for new options. They reached out to Justin B’s family (Justin died in 2007):

We’ve tried the standard treatments and while things have remained reasonably stable, with a few ups and downs, we are always looking out for alternate treatments. We’re hearing lots more about Dr. Burzynski’s treatment and would like to ask you some questions about it

Hannah’s family is talking to other Burzynski patients’ families as well. On 9 Sept, on Leo D.’s page (Leo died the next month), her mother leaves a note:

We have found the same thing with Hannah and the Dexamethazone (what they call Decadron in Canada) we have found that her muscles have gotten way weaker, so her walking is really suffering and her speech has declined a great deal – we are also trying new things to get her off the dex… however we’re finding it really hard to do, we use the liquid and can get her down to .25 of a mg and then we have to go up again because we can’t understand what she’s saying… its been like that for about month now…

On Sept 22, the family announces that they will be flying down to Houston for antineoplaston therapy on the 24th and hope to start treatment on Monday:

Well, we have decided to take our daughter Hannah to Houston and have her treated at the Burzynski clinic. Of the choices offered to Hannah for treatment, this seems to offer the best hope for long term survival. The various chemo treatments had what seemed to be good results for short term survival but Antineoplastons had the better long term numbers.

We’ll be be flying down from Vancouver on Sunday morning and get started on Monday with treatment. we’re making all the necessary  arrangements now and hopefully things will go smoothly.

The statement about long-term numbers is not borne out by the evidence. In fact, there is no good evidence that antineoplastons work. Over 60 trials have been started by Burzynski, but none has been satisfactorily published. These are the trials that might have established anything like survival rates, so with no finished, published studies there is no basis for anyone to assert that a “rate” exists. Of course, maybe the clinic was sharing preliminary data, but the problem with that is a recent inspection found that 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.” As a result, his outcome figures for these studies are inaccurate. Furthermore, all the baseline measurements for all patients whose files were reviewed by the FDA were destroyed and not available to investigators. Basically, his results can’t be reviewed. This is part of a pattern of sloppy “research” that stretches back for at least a decade.

The family goes through the customary training period at the clinic, because Burzynski’s treatment requires patients to fend for themselves. This likely contributed to the over 100 overdoses and serious but often unreported toxic events that the FDA uncovered during their inspection. For the record, the FDA told Stanislaw 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]

This would have shut down any research institution that received government funds. We’re talking about entire universities, here, not individual studies. Yet Burzynski still treats patients.

While on treatment, Hannah experiences the overwhelming thirst that comes with ANP’s massive sodium doses, with the attendant side effect of urination, and this causes all sorts of problems and consternation:

We’ve had Hannah on the ANP treatment for almost 2 weeks. Things have been going pretty well with treatment and Hannah hasn’t shown any bad reaction to the medication yet.

We’ve had Hannah in diapers for about 3 weeks and what we’ve had a problem with is all the diaper changes and leaks when Hannah is sleeping. There doesn’t seem to be many times when we are able to get her changed at night and often during the day when she doesn’t have a really big pee and fills her diaper and then leaks. This can only get worse the the projected fluid increase as she continues on the treatment.

Ultimately the family decides to line child diapers with adult diapers. That much fluid is going through the poor little girl.

The family had just returned to Vancouver from Houston when we hear that Hannah has died. She died at the same hospital where she was diagnosed a year earlier. I see no mention of any positive results of Burzynski’s antineoplastons in Hannah’s case.

One of the lasting effects of Hannah’s experiences has been the establishment of Hannah’s Heroes, which funds legitimate cancer research and operates to this day. One of the sad facts is that the rare tumor that Hannah had is not well understood and there are not many good therapeutic options. Hannah’s Heroes are trying to fill the research gap in the area of brain stem tumors.

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 Briannah O.’s Story

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

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

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

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

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

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

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

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

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

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

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

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

Weaver1

Weaver2

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The treatment is considered controversial in some medical circles.

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

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

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

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

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

According to the local paper on 16 June:

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

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

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

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

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

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

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

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

The local paper notes on Oct 8:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The local paper described the last hours in more detail:

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

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

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

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

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

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

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

staff

Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to 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 at the FDA so we can fix it and so this never happens again.

Burzynski Patient Sharie M’s Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

For reliable information about clinical trials, visit to 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 Cody G.’s Story

In Oct 1994, Cody’s parents, Dawna and David, noticed that Cody was developing a lazy eye and was losing control of his left side. An MRI discovered a tumor on his brain stem.  (At this point, honestly, I feel like these stories are following a script.)  He had 3 weeks of chemotherapy and radiation treatment. Around Thanksgiving, a friend told them about Burzynski’s Clinic.

Cody’s story came to light on 1 Dec 1994, after residents raised $15,000 for the Burzynski Clinic. They were clearly warned about his reputation, which is, according to the article, that of a “clown” and “kook.”

A perplexing statement in that article comes from a local philanthropist who started raising money for the trip:

When local philanthropist Kostas Kalogeropoulos, founder of Dream Come True charity, heard about the possible cure for Cody, he held a press conference on Thanksgiving Day and made an impassioned plea for money to help pay for the expensive therapy.

“Even if this doctor is a kook, at least he’s giving the family hope,” Kalogeropoulos said Tuesday night when told about the controversy surrounding the Burzynski Clinic.

This is bad thinking. False hope is “doing harm,” in my opinion.

I give the paper credit for actually seeking out comment about this story:

It’s false hope, said Saul Green, a biochemist and retired cancer researcher in New York. Green wrote a lengthy article in the Journal of the American Medical Association in June 1992, blasting Dr. Burzynski’s cancer treatments.

“I found no reason to believe his therapy works or even why it would work,” Green said yesterday. “If this family is religious, I would recommend they go to church. They’ll find more hope there.”

The trials manager at the Burzynski Clinic, possibly the worst trials manager in the world, given his lab’s results (no published peer reviewed papers demonstrating efficacy in a journal worth sneezing at), gives a typically flaccid defense, invoking the appeal to novelty and a conspiracy theory:

Burzynski was not available for commment yesterday, but Dean Mouscher, the clinical trials director at the clinic, said Green’s article is “full of lies and distortions.” He said the therapy has saved several children.

“This is a case of the old against the new. The medical establishment is against this dramatically new treatment,” Mouscher said. “The drug isn’t going to hurt Cody, and it may help. It has helped others.” 

Of course the clinic is, at the same time, administering ANP as a treatment for HIV.

The expenses that will accrue for the family are really remarkable, especially given how much ANP costs to manufacture:

The therapy can cost as much as $685 a day. The Michaels family said it’s running them about $10,000 a month and their insurance only recently started to pay for some of it. But the medicine isn’t the only cost. Patients must purchase their own catheter, IV equipment and pumps and pay for all blood and urine tests, X-rays, CT scans, housing, transportation and meals.

Green criticized the cost in his article, saying the chemicals that make up the drug canbe purchased “from any chemical supply house for about 9 cents a gram.” (emphasis added)

Monstrous behavior.

Three days later, the paper announces that Cody will be getting the treatment after all. The horrible bind that the parents have been put in is clear, further illustrating why only the highest ethical standards are acceptable when experimenting on cancer patients:

“We have no choice. We either take him there or sit back and watch him go and we don’t want to do that,” said David [G].

About two weeks later, we hear that Cody and his mother go down to Houston to learn how to administer the treatment, while David stays with Cody’s sister. By this time, the community back home has raised some $30,000 for Burzynski’s treatment.

On the February 1st, we hear that SAME DAMNED STORY AGAIN! That the tumor is “breaking up on the inside,” which the family apparently believes is a good thing:

Cody [G]’s brain tumor appears to be deteriorating.

The 4-year-old Pennsville boy has been receiving an experimental cancer treatment in Houston. After two visits to the Burzynski Clinic, and around-the-clock treatment for almost six weeks, his parents say a recent MRI shows the tumor has not grown and its core appears to be breaking up.

“We want to thank everyone in the Lehigh Valley for giving Cody the chance he needs to fight this,” said Cody’s mother, Dawna.

The Gerharts held a news conference yesterday at the Sheraton Inn Jetport. Cody, dressed in purple Batman sweat pants, wobbled out to the crowd and gestured for his father, David, to hold him. Cody has limited movement on his left side because the treatment sometimes causes the tumor to swell, putting pressure on his brain stem, his parents said.

The boy is partially paralyzed and unsteady on his feet, and yet the parents who want to believe still see him as improving. It is positively unbelievable that an ethical humane physician would let the family leave their clinic not understanding the implication. To do so is unfathomably cruel, since the pattern of a tumor dying on the inside is more likely to be a sign that the tumor has outgrown its blood supply than it is of a treatment working. It turns out that an MRI in March confirmed that the tumor was in fact growing.

Cody celebrated his 5th birthday that March, but on April 20th, news breaks that Cody had breathing problems and was rushed to the hospital.

“When we got him to the hospital we tried to stabilize his breathing,” said Donald [G], Cody’s grandfather. “The theory is that the tumor is affecting his condition right now.”

This is not progress, and the parents are baffled, as you might expect, as they believed that things were improving:

“In the beginning, he responded really well to his treatment,” Gerhart said.

That seems unlikely.

On May 19th, Cody’s story was on Nightline, but at this point, Cody is dying in hospice and off the ANP, which was clearly useless, costly burden:

Cody received several treatments at the clinic. “Nightline” interviewed Cody and his family at their home several weeks ago about their experience with the clinic.

Cody recently discontinued treatments after doctors at the clinic told the [G family] the treatment would not help Cody. Cody’s condition is deteriorating. He’s at home, under Hospice care, said his grandfather, Donald [G].

Cody died at home on May 29th.

A further complication to this story is something that the grandfather reports:

Nevertheless, the family believes in the treatment’s ability to cure cancer.

“They said Cody’s tumor wasn’t cancer and that’s why they couldn’t cure it,” [Donald] said.

The implications of this are nothing but damning for the Burzynski Clinic. What was all that talk earlier about the tumor “clearing up” and “breaking down on the inside” because of the miraculous ANP if the cancer wasn’t cancer? Or, as all evidence suggests in this case, does ANP simply not work on cancer? I would suggest that the family and media who covered this family, missed some important red flags about what was really going on here.

This must end. This was almost 20 years ago. Just a few weeks ago, a family whose beautiful daughter has a similar tumor was told by the same Clinic that the same pattern of necrosis in her tumor was a good sign. This relentless cycle must end. These patients need to be protected.

Burzynski Patient Adam M.’s Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Later that evening, they receive a phone call:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Burzynski Patient Maria V.’s Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Burzynski Patient Denise D.’s Story

Denise’s story is especially sad, as she was uninsured and was left to the generosity of the free market even before she went to Burzynski. She was 49 and single–her partner, Clifford, left shortly after the diagnosis in Feb 2009. It’s a little baffling to me, a layperson, as to how the first two physicians misdiagnosed her with mastitis for 9 months given that her mother had survived breast cancer. She shares the whole story of this period in this podcast. Nonetheless, when she was diagnosed, she began the normal course of chemotherapy treatment.

Chemo was really, really harsh on Denise, however, and she made an appointment at the Burzynski Clinic on the recommendation of her father, who had read about him in Burzynski’s chum Julian Whitaker’s book. I hold Whitaker partly responsible for what happened here. I’m sure he feels nothing but remorse.

Denise was in a bad spot. She worked as a temp, and she was desperate. It comes through in every line she writes:

I don’t want to die. I Want To Live. Except I don’t have the insurance, and I don’t have the money. It’s going to be a tough fight, I know. Tougher than anything I have ever done. […]

I am more scared than I have ever been…

But I Do Not Want To Die.

This is the state that people are in when they flee to Burzynski. And he turns that to his advantage. In mid April, she is at Burzynski’s office for a consult, according to the billing records she shares with potential donors, including a few scans (look at those whopping charges!):

  • North Cypress Medical Center, Outpatient Infusion Center dated 07/03/09 @ $320.00
  • Burzynski Clinic (monthly charge – PB Rx and Case Management) dated 06/26/09 @ $4,620.00
  • Burzynski Clinic (monthly charge – PB Rx and Case Management) dated 06/18/09 @ $4,184.88
  • Burzynski Clinic (8 tabs of Xeloda Rx) dated 06/15/09 @$327.47
  • Burzynski Clinic (Zometa Rx, one month, required first month purchase from Clinic) dated 05/18/09 @ $1,278.00(comparative pricing)
  • Burzynski Clinic (Zometa infusion procedure, month one,required first month purchase from Clinic) dated 05/18/09 @$240.88
  • Burzynski Clinic (Xeloda Rx, one month, required first month purchase from Clinic) dated 05/15/09 @ $2,620.00(comparative pricing)
  • Burzynski Clinic (Zolinza Rx, one month, required first month purchase from Clinic) dated 05/14/09 @ $3,229.00(comparative pricing)

It looks like she’s being set up for what the Clinic calls “personalized targeted gene-therapy,” but which oncologists call a “chemo cocktail“:

Tumor Markers – Baseline

I had some blood work done which will chart my tumor markers, specifically something called CEA… My last oncologist never did this test, so I have idea what my baseline was, but Burzynski Clinic uses them, as does MD Anderson, so I have to hope they mean something.

From what I’ve found online, it appears that some Drs find Tumor Markers a good resource, while others don’t place much weight on such tests as a diagnosing tool.

Notice the false equivalence. Heartbreaking.

Her April PET scan is actually really quite bad:

Let’s present the “good” news…

While the size/condition of the breast tumor has not diminished enough to be considered significant, the activity within the 6 lymph nodes Has decreased considerably. So, the “evil of chemotherapy” seems to have done Some good Despite the “totally wrong” vitamin regime I was on.

Now, on to the Bad News…

We appear to have Metastasis

There are (most probably) 4 vertebra tumors – T9, L2, L3, L5 and possibly the mid sacrum (definition of sacrum) or see this illustration

So… the backache I’ve had the past 6 months is Not attributed to my weight or being out of shape, it’s most likely attributed to cancer in my bones.

Her blood work is bad too:

My liver enzymes are up very high. Too high. So high in fact, that it’s indicative of metastasis to the liver. Those results won’t be in til early next week (April 20-24), but it’s pretty much a given.

And… for the cherry on top of my party

Since we have activity in the bones and (probably) liver, we need to do a scan to check the brain cuz breast cancer typically metastasis to the bones, liver and brain.

At this point, I’m looking less like a Stage 2 and more like a Stage 4.

And she follows this with, god, the most direct statement about having cancer I have seen:

It’s a party.

In my Body

A cancer Party.

It’s my party and I’ll cry if I want to.

I’m screaming.

She is quite eloquent and often expresses her fears in verse:

Painful Reminders

Every time I move,
I realize that the dull ache in my back
Now has the designation of cancer.

I wonder about my headaches
Are they, as I was told, Chemo Headaches
Or will they too be designated as cancer.

I’m not ready for this…

On the 30th, she sees her father’s oncologist for a third opinion. This doctor has his act together and:

strongly suggests that I continue to follow the traditional treatment / recovery of chemo – surgery – radiation; he recommends a smaller dose of chemo, administered every week for 12 weeks, vs a larger dose administered every other week for 8 weeks. If I continue on the chemo path of treatment / recovery, this is definitely something I’d look into.

On May 8th she goes in to talk to the Burzynski nutritionist. She takes pictures of the consult scans the notes and handouts from the Clinic. It turns out they were mostly nutrition downloads from the web.

Denise is under some duress. On May 10, 2008 she makes an announcement:

Burzynski Officially

Its Official.

I’ve decided to stop chemo and start treatment at The Burzynski Clinic.

This is a Big Decision and I HOPE its the right now.

I FEEL it’s the right one, but I’ve not always made the best decisions in my life…

At this point, she has given up treatment that has been vetted by the best minds in cancer and refined over decades to go to the Burzynski Clinic, which is a one-trick pony. As evidence, two days later she starts on sodium phenylbutrate [or “PB”], an orphaned urea cycle drug that Burzynski manufactures and sells off-label as part of his cancer treatment regimen. Oddly, she quotes the NCI’s position of this compound:

“However, there is no adequate evidence in the peer-reviewed published medical literature demonstrating that the use of sodium phenylbutyrate improves the clinical outcomes of patients with cancers of the prostate, breast, or cancers other than acute promyelocytic leukemia and malignant glioma. Current evidence is limited to in vitro and in vivo studies and Phase I studies. Prospective Phase III clinical outcome studies are necessary to determine the clinical effectiveness of sodium phenylbutyrate for cancer.”

So, what they are saying is, “Don’t take this yet for what you have,” but she does it. These desperate people need to be protected.

At The Clinic, PB is given to cover 96 of the minor genes that can’t be checked / addressed with conventional treatment.

I start with 1 tablet 4 times a day. Each day I add an additional tablet until I am up to 6 tablets 4 times a times (for a daily total of 24 tablets). This is done to make sure I can tolerate the drug and the increases in dosage.

It’s an expensive drug – $4500/month from The Clinic. This includes “case management” – which means I get to communicate with my Dr whenever I need to. Kinda what I thought a Dr was for, but guess it’s now called “case management”. There is no petition for financial assistance.

They sure don’t make it financially easy to stay alive… Maybe if it was more feasible, more people could afford it, and the cost would come down… maybe…?? I guess the bullet had to be bitten somewhere, and I guess it’s been determined that it is the patients who need to do the biting. Seems we get it coming and going…[emphasis added]

There is no petition for financial assistance because it comes from Burzynski. That statement about the “96 minor genes” sure sounds specific. So where did that number come from? Surely not NCI.

On May 13 she starts on Tarceva:

Tarceva
Today I started on Tarceva, which is typically used to treat Advanced Non-Small Cell Lung Cancer and Advanced Pancreatic Cancer. I’ll take one 150mg pill per day. […]

Another very expensive drug at $4200/month. I can, and intend to, petition the manufacturer for financial assistance.

On the 14th she starts on Zolinza:

Today I started on Zolinza, an oral HDAC inhibitor which prevents DNA transcription and gene expression in some tumor cells – typically Cutaneous T-cell lymphomas. I’ll take one 100mg pill per day. […]

Another very expensive drug at $2217/month. I can, and intend to, petition the manufacturer for financial assistance

On the 15th, she starts Xeloda:

Today I started on Xeloda, the first FDA-approved oral chemotherapy for both metastatic breast and colorectal cancer.

Another very expensive drug at $2897/month. I can, and intend to, petition the manufacturer for financial assistance.

On the 16th, friends and family host a spaghetti dinner fundraiser.

On the 18th, she starts Zometa:

Today I took my first monthly infusion of Zometa, I will have 4mg/5ml each month.[…]

Yet another very expensive drug at $1087/month. I can, and intend to, petition the manufacturer for financial assistance.

The whole time, by the way, she is taking pictures inside the clinic and at treatment and during fundraising events.

She starts on Burzynski’s anti-aging pill, but this is right before we see the whopping Burzynski bill for May, which is guaranteed to age you:

Consultation @ $750.00

Nutritionist @ $350.00

PET / CT Scan (Houston Imaging) at $1,200.00

Xeloda @ $2,897/month

Zolinza @ $2,217/month

Tarceva @ $4,200/month

Sodium Phenylbutrate (aka PB) and “Case Managment” @ $4,500/month

Zometa @ $1,087/month

That puts my total medication expenses for May at $17,901.00

She is getting some assistance on a number of her drugs, she reports, but look at how she describes it:

Getting the Gene Therapy meds directly from the manufacturer eliminates a great deal of cost and stress from my life. And, truthfully – 2 out of 4 is not bad. But Honestly, I was Hoping to get assistance for all 4. It would be different if I had insurance, if I Had the money to afford to stay alive – I’m simply doing the best I can to stay alive. I Want to stay alive.

There is no financial assistance, though, for the PB prescription – that’s a flat $4500/month and is manufactured by the Burzynski-associated pharmacy, and is a proprietary formula. So, even if I was able to get assistance for a generic brand PB, it would not be the formulation that offered the Burzynski “magic potion”.

And I Want The Magic Potion. At least Dr. Deleon says it’s in the PB that I’m getting

The magic potion. She actually said it. And things start to get a little more dire on June 17th as the Clinic starts to go all Scientology on Denise:

Burzynski Clinic – More Charges.

I received word from the Burzynski Clinic today that I have an outstanding balance to pay. A little over $4000.

Ok, I got a shipment of Sodium Phenylbutyrate and I was waiting on a bill to come. But they are acting like I committed some kind of crime, and stopped any services. Of Course I intend to pay! I chose this path because I Truly Believe in it.

Yes, I paid.

I was also informed that I will have to pay a $1000 infusion fee with the Zometa – per infusion. What The Heck? $1000?? Per Infusion?? I was only paying about $300 per infusion for chemo!

I’m suddenly getting a Reeeeally bad feeling about all this…

Wow. Waiting for a bill…they don’t just threaten to cut her off, they actually cut her off entirely, presumably to die. That’s one scary, manipulative place. But she pays.

Her next bill:

Burzynski Clinic Monthly Charge – June 2009

My June 2009 hit… Sodium Phenylbutrate, AminoCare A10 and Case Management… $4,184.88.

On June 22nd she reports all sorts of aches and pains, and worries that the cancer is spreading all over her.
This is one of the first times a full account has been maintained by the person receiving the treatment (something that certainly works in Burzynski’s favor). She has the whole story and shares. On June 23rd, a new round of unexpected fees and charges from the Burzynski Clinic, those vultures. This is important, and we certainly don’t want to be accused of making any of this up, so I will break from habit and quote at length:
I received yet Another call regarding finances from the Burzynski Clinic. Seems they are not satisfied with the $4500 per month for the Sodium Phenylbutyrate and “Case Management”, PLUS the $1000 per month for administering manufacturer provided Zometa infusion. NOW – since I am receiving assistance with my medications, and not purchasing from the Clinic – they intend to charge me $1500 for a “Medication Management” fee.
What The Heck?? With the exception of the Zometa, the meds are shipped directly to me. The Zometa is shipped in a 3 month supply and stored at the Clinic… and they want to charge me $1500 a month for that? To store 3 small bags??
Burzynski Clinic Drs are the ones who told me to go to the manufacturer’s and submit for assistance. They NEVER said ANYTHING about charging me Anything thing if I did get assistance!
I’M The One who got all the paperwork together and sent everything in. I’M the one who had to be sure the Clinic Drs got the forms completed and faxed in.
Seems every time I turn around, another triple zero fee is being added to my account.
Do they NOT realize that over charging does NOT help their bottom line, all it does is make treatment less accessible to more people?? I’ve referred at Least 4 people to the Clinic, NOT cuz I get any reimbursement, but because I Truly Believe. HOW can I continue to refer when I see how charges are added without consideration? I don’t mind paying my fair share, but I DO have a problem with people kicking others when they are down. And Right Now – I Am Down. So Stop Kicking!
Yes, I believe in Burzynski’s protocol and treatment – TOTALLY. But I’m suddenly not sure if I’ll be able to continue on this path… nor to recommend it to others… And That Scares the Heck Out of Me.
CUT ME SOME SLACK.
I swear, I am so STRESSED Right Now, if I get One More Thing on added to my “Gotta Get This Done NOW” list, I think I am going to blow a flipping gasket.
I HAVE BREAST CANCER which (according to test results) HAS SPREAD TO MY BONES and I HAVE NO HEALTH INSURANCE. I am (STILL) FIGHTING for Treatment and Medicinal Assistance. I am SCARED OUT OF THIS WORLD. I also Have To WORK FULL TIME. THAT is where my time is going.
The confrontation with the Financial Coordinator, Barbara Tomaszewski, is simply a ghastly shakedown:
Off On A Hunt – Finding An Infusion Center

It was a Busy day today…

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

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

This is why this site exists. Perhaps if we keep writing, we will eventually find the words to express our horror at the breathtaking arrogance, cruelty, and lack of human compassion. You know where Burzynski lives “survives”? In the words of Andy Lewis a:
“…10 acre, 15 thousand square foot, $6 million dollar residence with 15 bathrooms, saunas and swimming pools.”
Yeah, he’s just squeaking by. Wanna see his front yard?
Yes, his initials “SRB” are in gold across the electronic gate. The story continues:

Then she looked me in the eye and Said “You are the one getting your medicine for free, right?”, like because I am getting financial assistance with my meds, that means I have the $2500/month extra to spend on other (unexpected) charges?

Nooooo… I’m getting the financial assistance because I don’t have health insurance and because I can’t afford the meds… I was Told $4500/month for my PB and my Case Management, I Signed a Paper Stating $4500/month, and That is what I have budgeted for.

If you can call applying for financial assistance, compiling info on organizing fundraisers and getting ready to sell on eBay “budgeting”… more on eBay (TeamDenise) later…

I guess they must have more patients than they can handle to not care if someone is unable to afford their services due to unexpected And Substantial increases in charges.

She’s a good person. She has faith in people. She is betrayed:
I swear, I’m starting to feel like this unconditional faith is similar to the years of faith I put in Clifford and look how That bit me in the big behind! Big.Time.
She has another physician fill out her prescription and submit it. She has it delivered to an infusing clinic which charges a fraction of what the Burzynski Clinic does.
Her July bill:

Burzynski Clinic Monthly Charge – July 2009

My July 2009 hit… Sodium Phenylbutrate, AminoCare A10 and Case Management… $4,620.00.

She gets her next infusion two weeks late because of the insane charges of the Burzynski Clinic:

Houston, We Have Infusion!So I’ve got the final OK – I have found a location to receive my Much Needed and Long Overdue infusion of Zometa! YAY!

Much Needed and Long Overdue by 2 weeks. Two weeks that have past while I was struggling to find a solution to a problem that should NOT have existed.

The location will be North Cypress Medical Center – Ambulatory Infusion Therapy Center. Let’s hope their infusion procedures are better than the PET/CT Scan procedures of the North Cypress Medical Center Imaging Center which – supposedly – are not quite as close to protocol as they should be

I’ve talked with Novartis Oncology Patient Assistance Program, and they are good to ship my “new” prescription of Zometa directly to the NCMC Infusion Therapy Center Pharmacy, so the Burzynski Clinic will have no handling of the 3 small vials of Zometa, so there SHOULD be no need for any $1500/month charge for “Medicine Management”.

The total infusion charges will now be $310.78 per month (just a little bit higher than originally suggested, but still Much lower than the $1000 at the Burzynski Clinic)

On August 10th, she has her 3rd PET scan. The next day she has a bone scan. When the results are in, her lymph nodes seem to be clear on the PET scan (she is on chemo, after all), but the spots on her spine look worrisome. Overall, she is doing a bit of a happy dance.

On August 25, she alerts us to the fact that she has run out of money.

Tuesday, August 25th, 2009

September Meds

Its time to get my September meds from Burzynski Clinic, and I’m afraid that I don’t have the finances to cover the monthly cost

And she runs out of funds. And she goes off the treatment. And this causes her distress. And it doesn’t matter that the Burzynski pills are probably as effective as giving the tumors a stern talking to, damn it, her suffering and fear is real and entirely unnecessary (as is her poverty).
Monday, August 31st, 2009

Last night (Sunday) was my last dose of Sodium Phenylbutrate… my last 8 pills from my August supply. And my last dose of AmnioCare A10 (which appears to be a form of the Antineoplaston Therapy)… my last 2 pills from my August supply. The last of my supply…

I haven’t been able to pay for my September supply yet. I’m trying to get the money for September, but until I do, I’ll have to forego part of my treatment. That’s kinda scary, expecially since I just had bloodwork done and am waiting the results.

And holy cow! When Denise is offered an extension of her prescription, she tries to get something in writing, and what happens is SO SHADY. Merciless, parasitic.
Tuesday, September 1st, 2009

Compromise…

So, I have a compromise… of sorts. HA.

Today I talked with one of the financial people at Burzynski Clinic, and they are “willing” to let me have 2 weeks of Sodium Phenylbutrate for a payment of $2,250.00.

However, they AGAIN want to collect $1,500.00 to “manage” my medications. ”Managing” means to submit refills for the Tarceva, Xeloda, Zolinza and Zometa – which are all due.

That’s All

Simply Submit The Refills to the drug companies = $1,500.00.

WTHeck??

I JUST informed them that I cannot afford the charge for my meds this month and they wanna ADD AN ADDITIONAL $1,500.00??

Funny thing is, that when I stated that I wanted a copy of this “new policy” in writing, I was told that it’s not in writing, it’s a verbal thing, that all new patients are being advised of the same policy.

W.T.HECK??

This is a serious irregularity. I’m stunned that this is allowed to go on. They are stringing this poor woman along. What she earns–they take it all.

Monday, September 7th, 2009

Back on PB – for now

I was Finally able to pick up a portion of Sodium Phenylbutyrate(PB) on Friday. Was Supposed to pick it up on Thursday, but the Clinic got the info mixed up and then there was some confusion on their end, so I couldn’t pick up the entire month, but will be able to pick up the rest so this coming Wednesday…

Had to pay for what I did pick up and that was 1/2 month at a cost of $2,250.00.

NOBODY DESERVES THIS.

Tuesday, September 8th, 2009

Bending Over The Barrel

Since he helped before with my prescription of Zometa, I was presuming, assuming, hoping that my Primary Care Physician (PCP) would be amicable to handling the reorders (Rx refills) for the Tarceva, Zolinza, and Xeloda. This would eliminate the need to come up with the extra $1,500.00 that Burzynski Clinic is demanding in order to write my prescription refills. This would have taken a Huge stress off of me.

I had talked with the Drug Company PAP Reps and cleared with all to change the Doctor in charge of Rx reorders (refills) Dr from Burzynski to my PCP. All was good to go.

Guess I shoulda cleared with my PCP first and not ASS-U-M’ed, cuz I get the message that he is not good to go. He is not comfortable with writing Rx for cancer meds as he is an Internist and not an Oncologist.

So, I am back to dealing with the $1,500.00 “Medication Management” charge from Burzynski Clinic.

I am currently out of Xeloda, should have restarted today. But I have no reorder, no refill.

Unless I pay Burzynski Clinic the $1,500.00

They have me over a barrel.

Bending me.

Luckily, her PCP fills the prescriptions for her next round of chemotherapy. What a hell of a position they have her in, and she’s in the same position the next month:

Tuesday, October 6th, 2009

Burzynski Clinic Monthly Charge – October 2009

Again, I am short on finances, so – like last month – I have to scrape and scrounge to afford to pay for my monthly supply ofSodium Phenylbutyrate (PB) meds from the Burzynski Clinic.

The cost is $4,500.00 for 1 month of Sodium Phenylbutrate,AminoCare A10 and Case Management…

More than twice my entire monthly salary for only ONE of five medications that I take to arm me in this fight.

I’ve now gone through the small amount of savings I had, gone through the donations that have come in.

On the 12th she posts a poem:

Monday, October 12th, 2009

Swimming With The Sharks…

Last night I awoke numerous times with night terrors.

I have no memories, except the last one.

I dreamed of a dolphin
Pursued by sharks
There was a wound on the left side
Of the dolphin
Bloodied, with flesh exposed
The wound was not severe
But the battle for life was
The instinct that flight was
Imperative for
Survival

I awoke with
Heart racing
Adrenaline pumping
Terror coursing
Through my body

Alone
In the dark

I hope the dolphin survived…

On October 19, she writes a post that haunts me personally.

I’m having a lot of hits, from people searching for “Sara Sullivan”. They hit on the post that I wrote about her passing and my feelings. Many have included the word “donate” in their search.

Yes, Sara and I are different… different women

She was young… I am older

She had a loving and supportive husband, partner… I am single, alone […]

I wish these people
who search for a way to donate to Sara Sullivan’s cause
would consider
donating a little to me, to my cause
so that some day soon
someone else
is not
writing about
my passing.

I’m very sorry, Denise. I’m so, so sorry.

She struggles to make ends meet again the next month…and now we hear something that is really rather odd. A weird technicality that the Clinic is exploiting, perhaps?

Monday, November 9th, 2009Burzynski Clinic Monthly Charge – November 2009

Again, I am short on finances, so I have to scrape to come up with my payment.

I’ve been saying the charge is for the monthly supply of Sodium Phenylbutyrate (PB) meds from the Burzynski Clinic, but I’ve come to be informed that I am a clinical trial, and as such, do not pay for medication. What I pay for is the case management – for medical case management.

I get the PB meds for “free”.

Ok, still doesn’t change the fact that I am not going to be able to afford this much longer unless something happens.

The cost is $4,500.00 for a month of Case Management which includes the Sodium Phenylbutrate, AminoCare A10[emphasis added]

This is unacceptable by any standard, and I hope the Texas Medical Board is reading this. You don’t just “one day learn” that you are in a clinical trial. Nobody can just take someone’s data and use it however they like. You have to be given the option to opt out. She is being denied informed consent to be in an experiment. What IRB signed off on this? And why do they walk free? This is the type of behavior that put Burzynski’s medical license in jeopardy last year.

On Nov 20th, she loses her job with Exxon Mobile, where she had been temping. She thinks its related to an interview she had with the company for a permanent position where she disclosed that she had cancer.

In mid-January, she is aching all over and she believes the tumor in her breast is growing. She moves a PET scan up from the end of February to as soon as possible.

And then her online journal ends. It ends with February 2010.

She continues to post consistently on a gardening hobbyist board she started in 2004. She keeps her medical issues out of it for the most part, though when we hear in Oct 2010 that she has started a new cancer treatment, she mentions that it kept her from attending a plant swap:

Dear Members,Sounds like y’all had a GREAT time! I’m so sorry that I missed it… I’m
dealing with a new treatment path, and unfortunately the side effects make it
difficult for me to function early in the morning/day. Hopefully I’ll be at the
next one! […]

As far as the cancer I am fighting – I keep reminding myself that this too shall
pass. Please keep me in your prayers 🙂
denise
Living while Fighting, Surviving metastatic breast cancer…
cancer Sucks!
In June 2011, we the members of her gardening bulletin board arrange for a day working in Denise’s yard:
Denise needs help with getting her yard in order. If any Houston-Plant-Exchange members would be interested in participating in a work day at Madame Moderator Denise’s home please contact me directly. I would like to coordinate for sometime in the fall, it is just too hot now. So, let me here from you and we can get started with the planning and pack a picnic and have an awesome time. Jennifer, do we have a tentative date for the Fall Plant SwapThanks,
Beci
Asst Moderator
Please call me if you have time to help our group founder, Denise. She needs someone to go to her home and get ALL her potted plants to take care of. She said there are only about 5 or so. She is in the hospital and cannot physically get them. You need to have time to go get them and keep them watered. She needs a few other plant related “honey do’s” done also.
In February 2012, it sounds like she is moving. Her landlord had waived her rent for her when she got cancer:
Finishing up with my moving sale and have some pots left over. If anyone is interested in free pots – plastic and ceramic, decorative and nursery – get in touch with me. I’m moving very soon, so Must be picked up by Wednesday, Feb 29.Thanks! denise Living while Fighting stage 4 metastatic breast cancer…
That was her last post on the board.
We later find that she has moved back to Corpus Christi to be with her parents and get periodic updates from board members:
P.S. HPE Madame Group Owner, Denise aka lilybloomers, has finally gotten her home packed up and she has moved to Corpus Christi to live with her parents so that she can continue to fight her battle with breast cancer. Be strong my friend.
In November 2012, we get the sad news:
The creator/founder of the Houston Plant Exchange group has lost her battle with breast cancer. We are all very saddened by this news. We are grateful to her for her for all her hard work, energy and determination that she put into making this group successful. Several similar groups in other cities were started based on the HPE group, with Denise’s assistance. Oddly she wasn’t even really a plant enthusiast like many of us, but she saw a need, and somehow succeeded despite this, where many other similar groups had failed. She was an avid board gamer, and was instrumental in starting many board gaming groups here in the Houston area. She was a tough, strong person when she needed to be, but had a heart of gold and a wonderful fun spirit. She will be very much missed!
Just a few months later, her facebook page has become a memorial, a place for her friends to meet and remember her.
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. Find out about real clinical trials by visiting clinicaltrials.gov.