Burzynski Patient James W.’s Story

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

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

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

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

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

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

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

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

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

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

Puke

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

On Sept 29, we hear:

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

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

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

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

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

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

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

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

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

On the 4th, more detail is given:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

As his grandfather puts it on the 8th:

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

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

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

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

we opened up the kitchen and got to work!

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

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

James is getting worse. He does not get better.

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

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

The family moves in to Ronald McDonald House facilities because:

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

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

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

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

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

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

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

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

On the tenth, no word on the scan:

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

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

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

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

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

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

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

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

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

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

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

This does not seem to be a boy getting better.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Burzynski Patient Holly G.’s Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Burzynski Patient Andrew S.’s Story

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

Burzynski Patient Andrew B.’s Story

In the fall of 1995, 7-year old Andrew B. started vomiting. An MRI revealed PNET, a tumor in the pineal region. In December, surgeons removed a spherical tumor about an inch in diameter. Andrew’s case was reported in depth in The Times Union in April of 1996. The journalist, Holly Taylor, reported at the time:

Three leading cancer specialists said that Andrew’s cancer -a tumor called PNET and found in the pineal region - regrows and kills in 12 to 18 months if left untreated. The newest regimen of radiation and chemotherapy carries a 60 to 70 percent chance of cure, they claimed.

After doing her own research, Bryce instead embarked on a journey through the world of alternative cancer treatments and said she chose Burzynski because his patients spoke of remarkable recoveries from his nontoxic treatment.

“Not treating this kind of cancer is unheard of,” said Dr. Fred Epstein, a pediatric neurosurgeon who operated on Andrew at New York University Medical Center. “I’m surprised Burzynski is willing to treat this child. This is a curable case. This is absolutely unconscionable.” In the story, one can follow and understand the parents’  rationale. Irradiating a child’s brain is delicate and fraught with real dangers, including radiation necrosis and stunted development. Chemotherapy can be toxic, though it is often well tolerated and researchers are constantly refining treatments to reduce and manage side effects. Andrew’s family chose to forego a promising line of treatment by Jonathan Finlay at Sloan-Kettering for Burzynski’s antineoplaston treatment:

Yet [Andrew's mother] said Andrew would be a guinea pig with the maverick Burzynski or the established Finlay, so she chose the least toxic course.

This is based on the mistaken belief that antineoplastons, in some universe, is non-toxic. Of course the known side effects stretch to three pages in the patient consent forms. With no known benefits and only risks, putting anyone on antineoplastons ALWAYS fails a risk/benefit analysis. The hubris of the doctor administering the treatment is epic and would be farcical if it weren’t for the fact that he “specializes” in only the sickest children:

Comparing himself to Louis Pasteur, Burzynski says he’s fighting the country’s medical establishment and its gold standard of chemotherapy and radiation. He calls his drugs antineoplastons and said they stop the multiplying of existing cancer cells and prevent the growth of new ones without toxic side effects.

“The war on cancer is a failure. Chemotherapy is not going to cure cancer,” said Burzynski. “None of these doctors have had the chance to review our work. So they only know what chemotherapy and radiation can do.”

You see, there’s a difference between Burzynski and Pasteur–Pasteur published, his work was reviewed, and he earned the respect of his peers. Burzynski has piddling case series and patient anecdotes and half studies, none of which is published in a respectable journal. Of the 60+ trials he’s started, ZERO have been reputably published.

Here’s how Burzynski makes his money:

Under FDA regulations, Burzynski can sell his drugs in Texas, but cannot ship them out of state, so [Andrew's mother] has been traveling to Texas to obtain her son’s medication. She said her family paid $13,000 for the initial three week outpatient care at Burzynski’s clinic and they were spending $4,000 a month for drugs.

The FDA approved antineoplastons for clinical trials for patients with brain cancer, non-Hodgkins lymphoma and adults with uncurable cancers, but the Food, Drug and Cosmetic Act prohibits doctors from charging patients for medications in clinical trials because it creates a conflict.

[Burzynski spokesperson Dean] Mouscher said Andrew was placed in a clinical trial Friday and the family will pay for medical services, but not medications. Bryce said her local HMO wouldn’t cover experimental treatments so the family has paid the expenses themselves. [emphasis added]

Burzynski has treated patients protected by a legal technicality that does nothing to resolve the conflict of interest. At the time that the article was written, it appears that Andrew is active in tae kwan do and his dad says that his son is doing well. But this is apparently the grace period between surgery and recurrence, so of course he feels better. But the doctors warn that:

“without radiation and chemotherapy, the cancer “always” reappears in four to seven months [...].”

All of this was going on at the same time that Burzynski was on trial and his desperate patients were trying to put congressional pressure on the FDA:

His patients talk of miraculous recovery on talk shows and testified before Congress in February, as did [Andrew's family]. But the medical community and the U.S. Food and Drug Administration want to see hard data from him.

“He’s claimed thousands of cures, but very few of his patients have been put on a protocol. All he has to do is keep records,” said Barrie R. Cassileth, Ph.D., who teaches at the medical schools at the University of North Carolina in Chapel Hill and Duke University.

Keeping accurate records has never been Burzynski’s strong suit, as was revealed in this warning letter issued to Burzynski in December, and so his “thousands” of cures remain hypothetical.

And you want to know why his patients are willing to fight for them? He shamelessly wields their desperation like a shield, as was documented in a January 29, 1997 Washington Post article:

To Burzynski’s 300 grateful patients and their families, however, he is a savior, in most cases their last hope in the fight against swiftly growing brain tumors and other forms of cancer that do not respond to conventional treatments. To them, this is the most urgent matter of life and death, and they fear that if Burzynski is convicted, they, too, will receive a terrible sentence. He is the only source of the medicine they are convinced is keeping them alive.

“If I go, they will all die,” Burzynski said.

But at least this reprehensible vile creature doesn’t compare himself to Jesus.

“[His trial following a 70+ count indictment] is a big nonsense,” [Burzynski] said. “It is keeping me from my work. I am treating the sickest people you can find. It is not nice. It is difficult. They are like the lepers from the Bible.”

Oh, hell.

So there is, in his estimation, no salvation for these cancer patients but through Him. And these patients, including Andrew’s mom, did try to save him as we see in this newsletter clipping from the time:

defensefund

Such generosity has repeatedly resulted in the renewed victimization of the desperate. We see how things got started, and we see, essentially, exactly what is going on at the modern ANPCoalition website, where patients are desperately fighting Burzynski’s battles for him:

“We were lucky, we started treatment before the FDA deadline of February 10, 1996, the day the agency decided to cut off treatment for any new patients who didn’t meet certain criteria. The criteria: the person had to have exhausted conventional chemotherapy and radiation.

“The battle has reached the national level and four Congressional hearings have been held on the FDA’s abuse of power, most recently in July when parents of other children like myself fought for the right to choose Burzynski’s treatment. All the patients–including my son– need your help. The legal fund was originally developed to help Burzynski remain open. But the fund has dwindled after $50,000 was spent in the course so 7-year old Zachary [M] and 23-year old David [S] could stay on Burzynski’s medicine so they could stay alive.”

We do not see the outcome of Andrew’s treatment in the record. He lived for several years, but it is also clear that he had had multiple surgeries and chemotherapy, as his mother reports:

We were scheduled for yet another surgery. Summer had just arrived it was so warm and beautiful outside. Andrew no longer had the port for chemotherapy and was free to play in the water and be a child surgery meant bandages and inside looking out. We were devastated Andrew saw our pain and went quietly to his room collecting all his pins from the Alamo and distributed them to each of us with a quiet smile.

And:

He endured many surgeries and always had smiles and was more concerned for others than himself.

At age 9, after being in hospital isolation for two months, we breathed fresh air and touched grass for, what felt like, the first time. Andrew could not leave the hospital so neither did I, despite pleading from family. I needed to leave just for a little while, they said but I could not. The only thing I could do was watch the river with Andrew from his window and share his pain. That was all.

Andrew died under the care of a conventional doctor in New York at the age of 11. According to his mother:

When he was dying, I asked myself, “what could possibly be worse than this?” Because this was horrible–he was paralyzed, he couldn’t talk. It was anyone’s worst nightmare.

In memory of her son, Andrew’s mother established a foundation that supports children with cancer and that has funded actual research. The mother, however, thinks that Burzynski helped, though we’d call that a statistical outlier, who, let’s face it, had surgery:

I believe it gave him two more years of a full life. In the end we were not one of the lucky ones.

Please contact your representatives in Congress and inform them about the 202 pages of charges that were filed against Stanislaw Burzynski.  PLEASE don’t let this happen again.

Burzynski Patient Amanda C.’s Story

On November 28, 2011, mother of 2 Amanda C. of Brimington Common, Chesterfield (UK) was diagnosed with a grade 4 glioblastoma. It’s an aggressive cancer and her prognosis was poor. Doctors quickly determined that the tumor was in too delicate an area of her brain to debulk through surgery, so she embarked on a course of chemotherapy and radiation, which was very tough on her. According to her justgiving site:

Amanda had treatment at Weston Park Hospital in Sheffield, 30 doses of radio & chemotherapy in 6 weeks.

This treatment is very aggressive with severe side effects and Amanda reacted badly to this. It made her very ill and caused her to be paralysed completely on her right side.

It’s a heartbreaking story. By May, according to a post on the Hope for Laura Fund page (Laura is now dead–most of the people who raise enormous amounts of money for Burzynski are) Amanda and her husband are already looking to the Burzynski Clinic:

May 21, 2012 at 3:15pm · Like ‑ Reply

Roger [C] Fantastic news….my wife & I are hoping to visit

the clinic soon…we are in touch with them

The projected cost, at least according to the justgiving site is £200,000 over a two year period.

In August, Amanda’s husband describes the alternative medicines that Amanda is taking:

She’s doing very well…at present. I give her:

1. Boswellia & Turmeric – reduces swelling so less dex steroids
2. Doctor Prasanta banerji Cal phos & Ruta gra 6 – 75% success with brain tumours
3. Curcumin
4. Garlic
5. Reishi Mushrooms
6. Apricot Kernels
7. Soduim Bi carb
8.GLA

Prasanta Banerji has appeared in two other stories on this website, the case of Maryn C. and the absolute extreme of possible harm I’ve ever seen inflicted by purveyors of alternative medicine, the case of Chase S. This Banerji character is a homeopath, which basically means he sells expensive water and placebo pills. Every brain cancer patient I’ve seen taking his remedies is dead. Not exactly a 75% success rate. The other treatments I recognize, apricot kernals (i.e., laetrile–kernels contain a substance that breakdown into hydrogen cyanide, which is as bad as it sounds) and sodium bicarbonate, are disproved and ineffective.

In early September 2012, when a friend posts on the Team Hannah website that they are still fundraising and this goes through to at least October. Burzynski isn’t cheap.

In October, we hear of intense fundraising in the local paper:

But following research into the Glioblastoma Grade 4 brain tumour, [Amanda's husband] discovered a treatment and possible cure at the Burzynski Clinic, in America, so the couple has set up the Amanda [C] Cancer Trust with fantastic fundraising plans including the charity shop at Unit 16, on Storforth lane, Trading Estate.

[Amanda's husband] said: “Amanda was told there was no known cure for this type of cancer and she had only three months to live. This was devastating for the whole family.

“But now the Amanda [C] Trust has been set up in a bid to raise awareness about brain cancer and to raise funds for Amanda’s treatment in America.”

This charity shop seems to be a business set up to support Burzynski. Indeed, fundraising went through December and beyond. According to an article in the local paper that ran on 27 December:

A Matlock fundraising event raised £500 towards pioneering cancer treatment.
A book sale was held at the County Hall organised by the Derbyshire county 

councillors’ secretarial team to raise money for Amanda [C]. [...]

Cllr Chris Jackson, vice chairman of the council, said: “I was very pleased 
to support this very worthy local cause and staff did a great job at helping to 
raise £500. The county council supports many organisations through the year 
in a formal way but small unofficial fundraising events like this can 

make just as important a difference.”

Amanda was worth it. Burzynski is not.

Following this, Amanda apparently visited the Burzynski Clinic in Houston in December, and she appears in the Derbyshire Times on March 6, 2013.

AmandaC

This article suggests that she was there for about a month, which is more or less standard when someone is put on Burzynski’s protocol. This is because patients’ caregivers are required to learn how to administer the drug. This fact, that lay people were routinely charged with programming the chemotherapy pumps, may have contributed to the over 100 overdoses that the FDA observed in patient records during an inspection of the clinic at about the time Amanda was there.:

Amanda [C], 46, spent four weeks at the Burzynski Clinic in Houston, Texas, in December where she received a pioneering drug in a bid to prolong her life.

Her husband [...] was also shown how to administor the Antineoplaston (ANP) drug at home.

And despite a few set backs since their return from Houston, things are starting to look up.

[Amanda's husband] said: “She has had her first scan and the doctors in America are pleased.

“The tumour is stationary and over the next few months we are hoping it decreases in size.”

The relentless positive attitude here is in some ways heartening, but it’s also discouraging, especially if we look at the record of her progress captured on social media. Before the above article was published, Amanda reported that she was taken off ANP (Feb 1), back on (Feb 3), off again because of bad blood values (Feb 18), had a seizure (Feb 20), and had increasing symptoms and her Hickman line replaced (5 March). All of this happened BEFORE this the article published on March 6th. Now, I understand the importance of being positive, but glossing signs of disease progression and complications as “things starting to look up”–and I fault the newspaper for not fact-checking–it can give a false impression of antineoplastons’ efficacy. A much more striking and higher profile case of a sharp difference in what actually happened and what was reported in the press was the case of Amelia S, when a paper crowed that she was returning to school, omitting mention of the logistical juggernaut that had to be assembled to make that happen. Burzynski has thrived on lazy journalism, and it’s probably why the Clinic pitched a fit when a real reporter paid the story as much attention as they did in November of last year, when he appeared on the cover of USA Today. Burzynski is apparently not used to real reporters.

Amanda was back on ANP on March 8, but suffered a bad fall only a few days later. The family continued to raise funds for treatment, which by their estimate was $8500 a month. Amanda died in May.

Please donate to St. Jude Children’s Research Hospital, which does real research into brain tumors. If you want to take further action, protect the vulnerable, and put reliable information in front of patients who might be looking into this Clinic, the Skeptics for the Protection of Cancer Patients (facebook page here) have put up guidelines about how to boost good information into relevant search results.

Burzynski Patient Claire F.’s Story

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

Claire F., mother of two, was diagnosed with invasive ductal carcinoma in May 2007 and underwent the underwent a normal course of therapy in the UK, surgery and chemotherapy. In January 2008, she was found to be in remission. She started dating and fell in love with Chris, an old friend. On Christmas 2009, Chris proposed. They booked a church and planned to marry on her 40th birthday in October. In May, however, a lump appeared in her neck. She tells the story on her website:

My GP put me on antibiotics, thinking the lymph nodes had probably come up due to a cold I had. Unfortunately, the antibiotics didn’t do anything, so I was once again referred to the breast clinic. Another painful biopsy was performed on my neck the very next day. The results of this showed the cancer had returned to my lymph nodes. I had an operation a week later to remove the lymph nodes in my neck. Unfortunately, one of them couldn’t be removed because it is attached to my jugular. Removing it would have caused me to bleed out. A few days after the surgery I had routine CT and bone scans to check for any spread of disease. The scans showed the cancer had spread to my spine and my right lung, as well as my neck. I was told I would be lucky to survive the next five years. I have been back on chemotherapy since July of this year [2010]. They’ve put me on oral chemo this time, which I can take at home and the side effects aren’t too bad.

Claire and Chris went forward with planning the wedding and held it as planned, Claire taking a break from her chemotherapy so that she would be at her best that day. The next day, however, they got her scans from an previous test and learned the cancer had spread. She was on a new treatment but looking ahead:

My Mum has recently heard about a doctor in Houston, Texas, Dr Stanislaw Burzynski, who has been conducting clinical trials into gene therapy for over 30 years and how it can treat cancer without causing the unwanted side effects of chemotherapy. Gene therapy is apparently the way forward in treating, sometimes completely eradicating, cancer cells. My husband and parents are of the opinion that we must try everything possible, otherwise we would never forgive ourselves for not giving it a go. This treatment is groundbreaking but unfortunately very expensive.

We have estimated the costs for treatment, travel and accommodation to be in the region of a staggering $100,000 (approximately £65,000). As none of us have this amount of money to hand, we are planning all sorts of fundraising events. So far, my Mum has managed to raise around £15,000 from family donations, which is amazing and is enough to get me and my Dad to Texas, pay for our accommodation and have all the initial tests and treatments out there. We have to stay there for up to a month the first time we go, hence the costs. Chris and my Mum will stay home to look after the girls.

A major reason we are writing this site is that these patients don’t fall into the trap that the Burzynski Research Institute’s antineoplaston trials are anything like respectable. Antineoplaston therapy is no more gene therapy than is eating a banana. It is at this point that Claire is at her most vulnerable. She has been given 5 years at the most to live, has two girls, and is just married. She deserved to participate in a legitimate clinical trial that had a chance of prolonging her life. The Burzynski trials were appalling parodies of the scientific investigation, ones that seemed designed to rope in as many paying patients as possible. In a recent site inspection following the death of a child, the FDA made the following observations:

Among the newly released observations by FDA inspectors:

  1. Burzynski (as investigator, the subject of the inspection) “failed to comply with protocol requirements related to the primary outcome, therapeutic response [...] for 67% of study subjects reviewed during the inspection.” This means that several patients who were reported as “complete responses” did not meet the criteria defined in the investigational plan, as were patients who were reported as having a “partial response” and “stable disease.” This means that his outcomes figures for these studies are inaccurate.
  2. Additionally, some patients admitted failed to meet the inclusion criteria for the study.
  3. Even though patients needed to have a physician back home to monitor their progress prior to enrolling in a trial, the FDA found a patient who began receiving treatment before a doctor had been found.
  4. Patients who had Grade 3 or 4 toxic effects were supposed to be removed from treatment. One patient had 3 Grade 3 events followed by 3 Grade 4 events. Another patient had 7 disqualifying toxic events before he was removed from the study.
  5. Burzynski did not report all adverse events as required by his study protocols. One patient had 12 events of hypernatremia (high sodium), none of which was reported. There are several similar patients.
  6. The FDA told Burzynski: “You failed to protect the rights, safety, and welfare of subjects under your care. Forty-eight (48) subjects experienced 102 investigational overdoses between January 1, 2005 and February 22, 2013, according to the [trial number redacted] List of Hospitalizations/SAE (serious adverse events) [redacted]/ Overdose [redacted]/Catheter Infection report. Overdose incidents have been reported to you [....] There is no documentation to show that you have implemented corrective actions during this time period to ensure the safety and welfare of subjects.” [emphasis added] It seems that these overdoses are related to the protocol, which requires family members to administer the drugs via programmable pump on their own. Further, patient records show that there were many more overdoses that were not included in the Hospitalization/SAE/Overdose list.
All of that is included in the first observation. The second observation showed that Burzynski failed to maintain the records required by his protocols. Specifically:
  1. “Your [...] tumor measurements initially recorded on worksheets at baseline and on-study treatment [...] studies for all study subjects were destroyed and are not available for FDA inspectional review.” This is one of the most damning statements, as without any…not a single baseline measurement…there is no way to determine any actual effect of the antineoplaston treatment. This means that Burzynski’s studies–which by last account cost $30,000 to begin and $7000 a month to maintain–are unpublishable.
  2. Some adverse events were not reported to the Burzynski Clinic IRB for years. (One patient had an adverse event in 1998 and the oversight board did not hear about it until 2005.)
  3. The FDA observed that the informed consent document did not include a statement of extra costs that might be incurred. Specifically, some informed consent documents were signed days to weeks before billing agreements, and in a couple of cases no consent form could be found.
  4. The clinic was unable to account for its stock of antineoplastons.

To summarize. The FDA observed that Burzynski’s success rate was inflated, crucial patient records had been destroyed (as far as we can tell, rendering all of his trials completely unverifiable and unpublishable–if Claire was indeed on a trial, her case would not count toward the scientific understanding of antineoplastons, a costly betrayal), that there were numerous serious toxic events, many of which went unreported for long periods of time, that patients were denied informed consent, that paying patients were allowed on the studies who shouldn’t have been included and that patients who should have been dropped were kept on longer than they should have been, and that Burzynski had violated his own protocol.

On Dec 14 of 2010, we hear from her on her webpage:

Thanks for all the well wishes over the last few days. I got my scan results today. They show that the combination chemo drugs haven’t succeeded in shrinking my tumours. My spine is still stabilised, but the neck & lung lesions have grown slightly (again). So, I am going to be put on a different chemo regime, this one is called Gem-Carbo and it’s intravenous, rather than oral treatment. I’m hoping to start this before Christmas. Next week, I’m going to be having daily radiotherapy to my neck to shrink the lymph node that’s been left there, as it’s now giving me some discomfort. The plus side is that my liver and all my other major organs are clear. My oncologist is referring me to see a doctor in Charing Cross hospital, who is aware of the doctor in Houston and his gene therapy treatments. This will arm me with much more information before I head off to Texas. Could be better news, but it could also be so much worse! Xxx

Her radiation treatment is intense and knocks her down a little. Then, right at the end of the year we hear:

The original plan was for me to travel to Texas yesterday, but a couple of weeks ago, my oncologist sent a referral for me to see a professor at the Charing Cross Hospital in London. There are links between Dr. Burzynski in Texas and the Charing Cross Hospital, so my doctor thinks it makes sense for me to see the guy in London and get armed with as much information as possible, before flying out there. My Mum has also recently discovered that there is a clinic in Zurich, Switzerland, which has doctors working under Dr. Burzynski’s guidelines. I am still waiting for the London appointment to come through. As soon as it does, we will know exactly where I’m going and when, but please rest assured that all the money which has been so generously donated will go directly towards my treatment. If I’m able to go to Zurich instead of Texas, the money we’ll save on travel and accommodation will probably pay for at least an extra month’s worth of treatment, which is fantastic. Better still, I won’t have to be so far away from my husband and children for so long!

This is unusual. This is the first we’ve heard of a Zurich clinic. Nonetheless, Claire’s oncologist is mistaken. The physician, Professor Coombes, it turns out, does not have ties with Burzynski, but with a reputable research institution in Houston, MD Anderson, as we hear on Jan 18th:

Just to fill you all in on Friday’s appointment. It didn’t go as well as we hoped it would, because Professor Coombes is linked to another clinic in Texas, the M.D.Anderson Clinic, as opposed to the Burzynski Clinic which we were hoping to get more information on. Having researched Dr Burzynski more over the weekend, the plan is still to visit him to see what he can do for me. His work is still in the clinical trials stage, which is why he’s not known worldwide (and why it’s so flipping expensive!). I feel a little bit deflated about this, but we’re still going to go ahead. We have to try everything that’s out there. Chris has been in touch with some patients of his who absolutely swear by his work.

And the Burzynski Patient Group rears its ugly head, pulling another desperate family into Burzynski’s clutches. In all the years he’s been in “clinical trials” he should have been able to produce a single finished, published study. Claire deserved better. She deserved MD Anderson. On the 2nd of February, she has her Hickman line put into her chest, which is how her antineoplastons will be administered. The traditional chemo is having a positive effect, however, as we hear on March 4th:

Just got back from my results appointment and the news is good! The tumours in my spine and my neck have stabilised, my brain is clear, I have no new disease anywhere else in my body, the new swelling in my neck is muscle damage from having the hickman line put in (which can be treated with physio) and the best news of all is…. the tumour on my lung has shrunk by 1cm!!! This all means that the new treatment is working and I’m raring to go ahead with the next dose tomorrow. I don’t care how crap it makes me feel, it’s working, WOOHOOO!!!! My Mum was crying her eyes out, God love her. The next step is to go and see Professor Coombes again in London, then it’s Texas, here we come!! Thanks to all of you for the thoughts and prayers, they’re obviously working too! xxx

In the meantime, her family and friends are raising money for Burzynski like crazy. By June, however, she still hadn’t gone out to Texas. She is facing some infection issues and she gets violently ill when she starts Taxol, as we hear on June 13:

Chris contacted the clinic in Texas, just to make sure I can have their treatment whilst on chemo and I can! So I started the taxol today. I feel fine at the moment, just very tired.

Interesting. How would you be able to sort the effects of the chemotherapy from any result the ANP would have? (Answer: you can’t. Worst researcher ever.) She returns from the hospital on July 1. As Claire said:

Two weeks ago, I didn’t even have enough energy to lift my head from my pillow and the team have really got on top of my pain management. So, I am now pain and sickness free and Chris and I have been looking into leaving for Texas in two weeks’ time. Flights, car, accommodation and, most importantly, the Burzynski Clinic are all ready for us. The clinic have had all of my medical notes and have said I am eligible for their treatment. All I have to do now is convince Dr. Shah to reinstate my fit to fly letter and get some insurance, then we’re off! I’d like to say a massive thank you to all of you for the donations and lovely messages I’ve received over the last few weeks. I’m completely overwhelmed by this and the support it has given me has been tremendous for my emotional wellbeing. Most of all, I’d like to thank Christopher Faulkner and my parents for looking after me, my children & my blog (!) and for pulling out all the stops to arrange this potentially life saving trip, whilst keeping a bedside vigil for me.

Claire and her husband meet Burzynski on July 18th:

We had our first appointment at the Burzynski Clinic today and got to meet Dr. Burzynski himself, which was a real honour. Today’s appointment was for consultations with the doctors, blood tests and a meeting with the financial team. [...] The next step is for me to have full body PET and CT scans. These will take place either on Tuesday or Thursday of this week. In the meantime, I am going to be started on tablets tomorrow (tuesday), which are a form of gene therapy. We will also be meeting a nutritional specialist, who will give me a list of what I should and shouldn’t eat whilst on the treatment. I’ve already been told today to avoid sugar, bread, pasta and rice… some of my favourite things! That’s you all up to date for now.

On the 23rd we hear:

After taking just 2 doses of the antineoplaston medicine, I spent all of Wednesday night being violently sick and ended up being carted off in an ambulance during the early hours of thursday with ridiculously high blood pressure and pulse rate. The staff at the emergency room were amazing and they gave me an anti-sickness drug and morphine for the pain. Then they hooked me up to a saline drip for a couple of hours to rehydrate me. I felt better in no time, just very tired and weak. We were handed a bill for $1,250 and put in a taxi back to our hotel. Thank God I took out that insurance policy, hopefully we’ll be able to claim most of this cost back when we get home. Thursday was a write off as I spent most of the day trying to catch up on sleep. I missed my appointment at the Burzynski clinic because of it. Chris phoned the doctor there and they’ve re-schelduled my appointment for Monday, giving me the weekend to completely recover from the sickness. Needless to say, I’m not taking the antineoplaston doses for now.

It’s hard to tell what treatment she is on, honestly. She was on “pills” which suggests she is on sodium phenylbutyrate, but she seems to think that it is antineoplaston (PB is a prodrug for the components in ANP). She has been given a liquid form of it, however. The tumor in her neck was pressing up against her vocal cords, and it seems likely that her swallowing is problematic. It does not sound like she is on a clinical trial. You will notice the huge range of side effects that she is suffering, including high blood pressure and tachycardia–these could be direct results of the massive sodium load that Burzynski’s patients have to carry, which can lead to hypernatremia.

The Clinic starts her on Herceptin and Avastin, both common breast cancer drugs. It sounds like she is taking the chemo cocktail route, wherein chemotherapies that have not been tested together are administered to patients. Burzynski sells this as “gene-targeted therapy.”

On July 18th, Claire’s husband notes what is happening:

Time is passing by, we’ve been here for over a week already and we’ve still yet to get Claire started on any treatment that she can tolerate and give us a plan of action to take back to the United Kingdom to present to our Doctors.

The three drugs that have been proposed by the clinic total at $13,825 per month which works out at roughly £8,413 back home.

Once Claire has been cleared to start this treatment we are hoping to get at least two weeks worth here before returning home and then looking to continue the treatment with the NHS and the clinic working together.

Dr.Rakhmanov ( in charge of Claire ) has already said that he will personally fax the plan of action to Claire’s oncologist and does not believe that Claire should have any problems being treated with two of the three proposed drugs, he does however feel that one of them may be controversial but we will have to deal with that if and when it happens.

Of course, the NHS decides that it will not foot the bill, which means more fundraising. On the 14th of August, we hear about her progress, as she is back home in the UK. She’s had it tough:

On Monday of this week, I had my discharge appointment at the Burzynski Clinic. When we arrived there I was in terrible pain on the right hand side of my back, the pain was so bad that I was in tears and quite short of breath. The nurses saw I was distressed and took me to another room to be put on oxygen. This really helped and I felt better in no time. We had the discharge appt, settled our bill for all the drugs/assistance we’d had so far, had our photo taken with Dr. Burzynski and left the clinic.

That photo was posted on her webpage:

Clairejpg

She goes on:

Half way though the flight, I started to get the same back pain I’d had on Monday. Remembering oxygen had helped me then, I asked the stewardess for some. She obliged and I soon got a little audience! But I didn’t care, it was making me feel better.

That Friday, back home, she got up to answer the door and passed out. After she started coughing up blood, her family took her to the hospital, where she was diagnosed with pneumonia. She was in the hospital until the 28th, and then when she came home, she was leveled by a hospital acquired infection.

On 21 September, Claire died. Burzynski’s treatment does not appear to have done anything, but he got his cut.

Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and this never happens again.

Burzynski Patient Kyla F.’s Story

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

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

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

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

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

Among the newly released observations by FDA inspectors:

  1. Burzynski (as investigator, the subject of the inspection) “failed to comply with protocol requirements related to the primary outcome, therapeutic response [...] for 67% of study subjects reviewed during the inspection.” This means that several patients who were reported as “complete responses” did not meet the criteria defined in the investigational plan, as were patients who were reported as having a “partial response” and “stable disease.” This means that his outcomes figures for these studies are inaccurate.
  2. Additionally, some patients admitted failed to meet the inclusion criteria for the study.
  3. Even though patients needed to have a physician back home to monitor their progress prior to enrolling in a trial, the FDA found a patient who began receiving treatment before a doctor had been found.
  4. Patients who had Grade 3 or 4 toxic effects were supposed to be removed from treatment. One patient had 3 Grade 3 events followed by 3 Grade 4 events. Another patient had 7 disqualifying toxic events before he was removed from the study.
  5. Burzynski did not report all adverse events as required by his study protocols. One patient had 12 events of hypernatremia (high sodium), none of which was reported. There are several similar patients.
  6. The FDA told Burzynski: “You failed to protect the rights, safety, and welfare of subjects under your care. Forty-eight (48) subjects experienced 102 investigational overdoses between January 1, 2005 and February 22, 2013, according to the [trial number redacted] List of Hospitalizations/SAE (serious adverse events) [redacted]/ Overdose [redacted]/Catheter Infection report. Overdose incidents have been reported to you [....] There is no documentation to show that you have implemented corrective actions during this time period to ensure the safety and welfare of subjects.” [emphasis added] It seems that these overdoses are related to the protocol, which requires family members to administer the drugs via programmable pump on their own. Further, patient records show that there were many more overdoses that were not included in the Hospitalization/SAE/Overdose list.
All of that is included in the first observation. The second observation showed that Burzynski failed to maintain the records required by his protocols. Specifically:
  1. “Your [...] tumor measurements initially recorded on worksheets at baseline and on-study treatment [...] studies for all study subjects were destroyed and are not available for FDA inspectional review.” This is one of the most damning statements, as without any…not a single baseline measurement…there is no way to determine any actual effect of the antineoplaston treatment. This means that Burzynski’s studies–which by last account cost $30,000 to begin and $7000 a month to maintain–are unpublishable.
  2. Some adverse events were not reported to the Burzynski Clinic IRB for years. (One patient had an adverse event in 1998 and the oversight board did not hear about it until 2005.)
  3. The FDA observed that the informed consent document did not include a statement of extra costs that might be incurred. Specifically, some informed consent documents were signed days to weeks before billing agreements, and in a couple of cases no consent form could be found.
  4. The clinic was unable to account for its stock of antineoplastons.
And this is not the first time the FDA has inspected his site and found it wanting. This is merely the most recent in a decade-long string of abysmal site reviews.
Of course, we should probably expect as much when Burzynski’s lawyer described the first clinical trial as “a joke” in his memoir.
Kyla started antineoplastons on March 7, 1997. The parents seem to have been told that Kyla might have 2 months. That year, according to her mother’s personal website (cached from geocities):
Kyla started that treatment and has been on it ever since, racking up a bill that is currently 157,500 dollars. As long as she continues to received treatment the money is of little matter. Some parents save for college, we chose to save her life.
To my knowledge, there is no account of Kyla’s life on treatment, however,  on 26 May, 1998, her mother reported at the old version of the Burzynski Patient Group:
On antineoplastons, MRIs of her tumor have shown that it has remained stable, a miracle in itself. A PET scan in November of 1997 showed decreased metabolic activity of the tumor.
This suggests that the tumor hasn’t shrunk. And “stable,” again, is a slippery term that doesn’t necessarily mean “not growing,” only growing very slowly. (Decreased metabolic activity in a tumor, after all, is still metabolic activity in a tumor.) It seems that the tumor is a slow progressing one. In the same update, the mother says that,
“Today, May 26, 1998, she even stood on her own two feet without support!
Did she not usually? There is nothing in this to suggest to me that this was more than a slow growing tumor that may have been allayed by the badly tolerated chemotherapy. Her symptoms may have also benefited from steroids, if she was on them.
Kyla died on Monday, June 14th, 1999 at 7:35 AM.  Her tombstone reads:
Kyla
Come on. Let’s Go
You are and always will be
our Kyla, our hero
Our miracle our sunshine
our hope, our child.
Her mother wrote a poem about her little dancer.
Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and so this never happens again.

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 seen through to publication. 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. The family thanked the staff of the hospital in Hannah’s obituary. The Burzynski Clinic was not mentioned. 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 Keith G.’s Story

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

In January 2007, 29-year old Keith G. started having serious headaches and vomiting. A CT scan of his head showed a large mass. He had emergency surgery, and a week later was diagnosed with a malignant brain tumor, a glioblastoma multiforme, this only 3 months after his brother was diagnosed with a brain tumor. Several surgeries, courses of chemotherapy, and radiotherapy allowed him to fight off the tumor for a couple of years. He married in May 2008. In March 2010, a scan showed that the cancer was back, and this led to more surgery in April. This time the tumor came back very rapidly, was removed again in September, and was found to be grade 4.   They started a variety of oral and IV chemotherapies, but Keith’s wife was looking for other options, as the chemo made Keith very tired. In fact, the family was already looking at the Burzynski movie by 15 June. By August 2011, Keith was well along the road to the Burzynski Clinic.

After they arrived in Houston, Keith and his wife found that their insurance company did not cover antineoplastons (they almost never are because the treatments are unproved and unpromising). As his wife explained in the Limerick Post:

“Treatment is very expensive here as all medical treatment in the US, but we can’t let that stop us.”

This is not the first time that we’ve seen this when folks come to see Burzynski from abroad. The mother of Luna P. said this as well, that treatment in the US is always expensive. But there are compounding issues at play here. First, the expensive chemotherapies are for treatments known to have a chance of working. Second, when people here see that their week at the hospital cost $200,000, they don’t often realize that the hospital only expects to recoup a fraction of what they submit to the insurance company, so they ask for a lot. Patients who are self-pay often get a self-pay price for their care, which is more in line with the market value of the treatment.

Another interesting comment from Keith’s wife in that article:

“It is gene targeted treatment that has seen very good results on brain tumors. It is not a form of chemotherapy and is non toxic.”

This is simply false in every particular. Burzynski has never been able to finish and publish a trial that would give him anything like a cure rate. And it seems like he never will, since a recent FDA inspection of his trials revealed a host of colossal, inexcusable, and profoundly damning deficiencies in the trials, from inflated outcomes in 66% of the patient records examined to all baseline measurements destroyed. You can read about this unthinkable list of violations at the Burzynski Clinic at USA Today and links to the primary documents at thehoustoncancerquack.com. The 3-page list of known toxicities from Burzynski’s own patient consent forms includes:

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

On September 17, “The K Project,” a fundraising campaign for Keith’s treatment, is set in motion.

On September 20, 2011, Keith’s wife sends a note to concerned family back home in Ireland:

… Keith is on a combination of oral drugs at the moment & if a positive response is seen then he will probably be put on to an iv drug called Antioneoplastons. After approx 2 weeks on this he will be allowed to go home where he will continue treatment. Everyone in the clinic are lovely. They are pretty busy & have alot of foreign patients. If anyone is interested there is a movie that some of ye might find good. It’s called. ‘burzynski the movie’ on u-tube. Just look for the full length version.

So I will keep ye all up to date with what is happening over here.

On the fundraiser’s twitter feed, we hear:

After a few days rest K is back into the Texas Clinic today. He is pretty tired but is in good form. He thanks everyone for their support

Sadly, the movie that they are referring to is profoundly misleading, and it is clear that the filmmaker does not understand the patient records that he included, as they demonstrate that the tumor sizes are unrelated to dose or time on treatment. This means that, regardless of the outcome, the antineoplastons are likely not having any therapeutic effect. Most viewers won’t know how to read these files, and it will leave them with a badly flawed perception of their prospects at the clinic.

On September 20th, we get an update:

We really never expected anything like this but it really takes a lot of pressure off us as medical treatment in the US is very expensive & we found out just when we got here our insurance company would not support Keith. So this will be a great help towards his treatment.  We have been in Houston now 3 weeks. We originally thought we would be here for 4 weeks maximum but it now seems we could be here for another 4 weeks but we really are unsure about this.

On September 27th, we get a pair of tweets:

Ks had a hard few days and has been pushed to the limit on a massive collection of Meds. However he is in good form and looking ahead.

After a recent MRI we now know there has been no tumor regrowth and its the same as the last scan a few months ago. This is a good thing too

On October 2, the twitter feed reports that Keith has low phosphorous levels, but they are back to normal on the 4th.

By October 6th, the K project has raised 7,000 euros for Burzynski’s treatment and on the next dayfriends back home have a huge fundraiser for Keith and his wife. The next morning, the account is up to 12,000 euros. In all, about 10,000 euros were raised on a single night. But on the 8th we also hear that Keith is having seizures and that his Keppra is being upped. On the 11th, they announce that he will be seeing a neurologist about the seizures. 

The family is still in Houston on 19 Octoberit seems, and his story appears in the Western People newspaper. At this point 18,000 euros have been raised for Burzynski. Irresponsibly, the journalist says that Burzynski has “a remarkable success rate, especially among young cancer victims who have suffered miracle-type cures under his care.” James Laffey, if you are going to announce miracles, by god make for damned sure that the miracle healer doesn’t end up on the front page of the USA Today exposed as a quack in front of the world before you commend him uncritically to other desperate people. 

In late October, we hear in the Connaught Telegraph:

Keith and his wife Brenda have to travel to Texas about three times during each year of treatment and are currently there receiving the first stage. Meanwhile, back home a number of fundraising events are kicking into gear over the coming weeks.

The total cost will be about  €75,000. A huge number of events are set up to meet this goal.

The family arrives back in Ireland on the 22nd of October. Four days later, Keith is suffering from a chest infection at the site of the port that he had installed to receive the antineoplastons. This is a known, frequent adverse event associated with antineoplaston treatment. On the 27th, in the Galway Advertiser, his sister notes:

“Keith has been very weak and having frequent seizures but these are now being brought under control. He had an MRI scan not so long ago and it showed no change. This is not a bad thing as his tumour is very very aggressive and the fact it hasn’t grown more is good news in itself as he has been off chemotherapy for nearly three months now.”

Keith died on 16 Dec 2011. According to The Western People:

“On his return from America, Keith developed further complications and his health deteriorated rapidly in recent weeks. He passed away on Friday surrounded by family and friends.”

There is nothing in the public record to suggest that for all the hard work and fundraising by Keith and his friends that Burzynski’s treatment did anything more than give poor Keith an infection.

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 and warning letters–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 Laurye L.’s Story

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

(note: quotations from the Laurye’s family’s website are translated from French)

In September 2002, 2 year old Laurye L. was taken to the optometrist, who diagnosed her as farsighted. In January, doctors carried out some visual tests on her, but it turned out that Laurye’s visual problems were not in her eyes, but in her brain. In early March 2003, her health was clearly deteriorating. On the 11th of that month, her parents received a diagnosis. It was that monster that keeps appearing on this website, the Diffuse Intrinsic Pontine Glioma, a brain stem tumor for which there is no real effective long term treatment and to which most patients succumb.

Three days later, Laurye had surgery to reduce pressure in her head, but the prognosis was the same. The family was discouraged from making Laurye suffer through chemotherapy by their doctors. They did, however, give her cortisone and started 28 radiation sessions, which seemed to slow the growth of the tumor.

The family found a real clinical trial in North Carolina (“a chemotherapy with painful side effects without promise of success”) and they found Burzynski, whose treatment, antineoplastons (ANP), they believed, gave Laurye a 50% chance of a cure.  No published studies of ANP exist to substantiate that number, or any number for that matter. In fact, the FDA recently observed Burzynski (as investigator, the subject of a recent inspection):

 “failed to comply with protocol requirements related to the primary outcome, therapeutic response [...] for 67% of study subjects reviewed during the inspection.” This means that several patients who were reported as “complete responses” did not meet the criteria defined in the investigational plan, as were patients who were reported as having a “partial response” and “stable disease.”

This means that his outcomes figures for these studies are inaccurate. Given these findings, there is no basis for any percentage given by anyone about the efficacy of antineoplastons to be believed.

The parents describe their rationale:

“The name of the treatment is antineoplastons. [It is] nontoxic, the side effects are very minimal and do not affect the quality of life: excessive thirst which increases the volume of urine, no pain for Laurye. After many confirmations with patients who received treatments from Dr. Burzinski successfully, we chose this option believing that this is the best opportunity available to children with this type of tumor.”

Sadly, this is another case of the Burzynski Patient Group luring another person into Burzynski’s exam room. In August, the family goes on vacation, and Laurye is still well enough to learn to fish with her dad.

They outline their plan. On Nov 24, the family will leave Quebec for Houston. The intravenous treatment will cost them $7,200 for the first year and in the second year, capsules will cost $2,000/month for as long as Laurye is on treatment. Medicare does not cover the treatment, so the family sets up a foundation to fund Burzynski’s treatment.

In Houston, on the first of December, Laurye has a port installed in her chest where she will receive the antineoplastons, which will be pumped nearly continuously for months at a time. Laurye has an MRI the next day, and the family passes the next few weeks, like all other caregivers who come to Houston for ANP, learning how to administer the antineoplastons:

learning

This practice, having patients’ families administer the drug, may have contributed to the over 100 overdoses in the last few years. It does not explain, however, this observation by the FDA:

“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)

The family returned to Quebec on December 18th. The family reports:

Since December 3, Laurye is on intravenous injection. She must wear a backpack with 2 medication bags in it 24 hours a day. A small pump, connected by a pipe to the catheter, is programmed every four hours (6 doses per day ). We have to change the bags and reprogram the pump daily. In addition, Laurye has a healthy diet to follow and an MRI every two months. The only side effects are excessive thirst, fatigue, and frequent urination.

The unquenchable thirst and urination are caused by the high sodium load that ANP patients carry. According to the FDA’s findings, one patient experienced 12 episodes of hypernatremia (high sodium), none of which was reported.

The family’s new foundation very quickly holds numerous fundraisers, mobilizing the entire community. According to the numbers on the family’s website, no fewer than 18 fundraisers were planned. Additionally, first nine raised $31,520.75 for Burzynski. It is an outrage that the immeasurable kindness and generosity of entire communities has been squandered on Burzynski’s apparently unpublishable studies.

In February (presumably), we get another update.

Her current situation is stable. Every day is an uphill battle against this deadly disease for the whole family, for friends and especially for Laurye. This unique method of treatment [demands] a exceptionally big commitment of time, energy and courage from us. Currently, Laurye is doing very well. [...] The first months were difficult; before her body adjusted to the treatment, she was tired and irritable but the best is yet to come for our Laurye.

We got the results of the January 30, 2004 [MRI], encouraging news for our daughter. The tumor did not progress. She remained stable.

While this does mean that the tumor is not growing quickly, periods of tumor stability are not unexpected even without treatment.

Laurye has not had a winter like other children. We always had to be careful that she did not fall ill. Also, the pump does not react well to cold temperatures so we had to limit her outdoor activities. Laurye changed physically (weight gain and swelling) due to cortisone medication to be given in addition to the current treatment. This is to [prevent?] pain during treatment because [when] the tumor is attacked it can cause a lot of pressure in the head. After the good MRI results, we could reduce the cortisone.

This sounds a lot like a line that patients have been repeating throughout this project, that symptoms of getting worse (in this case, swelling in the brain stem) are often described by patients as if they were signs of getting better. Parents of sick children grasp anything at all that would suggest that their child is getting better, even when it is getting worse. We’ve seen a disturbing pattern of patients reporting that getting worse was getting better. We’ve seen it at least 10 times.

We don’t hear much, honestly, until 2005. A mysterious spot appears on the January MRI and disappears on the Feb 22 MRI. Another MRI is scheduled for April 5. The news is not good:

Laurye past a MRI on April 5 and the tumour increased of 3% and there are 3 spots (8mm, 4mm, 1mm).

Doctor Jurida asked [for] a pet scan to see if there is some activity in the spots. We are very worried. We are waiting for on appointment for the pet scan and with the results we will know more. But what we find weird is that in january there was a spot. Febuary it was gone and know there are 3 of them. [...]

Laurye eyes restarted to cross and her legs are hurting. Can someone tell if they ever have any spots like us and what happened.

We don`t know what to think? Doctor Jurida says that as long as we have some spots we cannot disconnect Laurye? It is going to be 17 months on the I.V. treatment and Laurye is starting to be tired of it.

By May, Laurye is off ANP. On May 22nd, she goes on Temodar, which seems to be a standard treatment for this type of tumor. Laurye’s mother reports in June:

Doctor Burzynski told us that it doesn’t do any good to keep Laurye on the treatment. He is suggesting the capsules of antineoplastons all alone or another possibility, capsule of sodium phenylbutyrate (PB) with a soft chimio.

I would like to know if you heard of the sodium phenylbutyrate capsule and what do you thing of them.

Laurye is loosing her ability`s a little bit every week but the clinic can`t tell me if it is necrosis or other tumours. The only way to know would be a biopsy and it is too dangerous, so we will never know.

They do mention that her only side effects from the chemotherapy is constipation and tiredness. In the same post, we see this:

We would like to take the best decision for Laurye. We decided to start oral chemo (TEMODAR) on may 23, 2005 hoping to stop the tumours if its the case for an undetermined time because we would like to go back to the antineoplaston capsules to prevent the increasing again. What if it is not the tumour increasing and it is necroses due to radiation. She is going to have done chemo for nothing, it doesn`t take the necrosis away. the only way to stop necrosis would be hyper-bar oxygene (HBO).

There is a question i’m asking myself and 2 doctors say 2 different things. Do you think chemo increases [radiation necrosis?]

Laurye’s flame is flickering in these final months. On September 8, an update from a family friend:

A few weeks ago [Laurye] was unable to walk or stand. She was unable to do much but lay on the couch and drink through a straw. Her doctors in Canada said it was due to a bleed, but could not confirm it. Her Decadron was increased and she got up and went to school. She had a PET and we are still awaiting the results. Unfortunately, the increased Decadron dose is no longer working.  Depending on the results of the PET, as to whether or not she will qualify for Hyperbaric treatment. She will have to go to a private clinic because the local MD’s have told her parents to let her go (pass away) and will not authorize any further treatment.

On September 10th, in Le Soleil, we hear:

The battle of the little Laurye [L] against the brainstem glioma, a rare and incurable cancer, is nearing completion. The girl who has awakened the sympathy of the population during two years of valiant struggle now living his last moments.

“Let yourself go, Laurye, I’m ready to let you go.” The voice full of distress, Sonia [C] courageously facing the imminent death of his daughter. “I asked her if she was ready to go to heaven. She said nodding,” tells the mother, experiencing immense pain.

Although Laurye’s awareness is intact, her physical condition has deteriorated significantly in recent days. She first stopped walking and talking and can now no longer eat.

Sonia [C] [was] torn from the bedside of her 5-year old daughter for a brief press conference yesterday afternoon to announce that a few hours, maybe a few days, remained in Laurye’s life. She [thanked] all those who supported the family morally and financially throughout his illness.

In the same article, we hear what the total amount that went to the treatment:

Founded in 2003, the Laurye [L] Foundation has raised approximately $235,000. The director of the Foundation insisted that the remaining approximately $ 10,000 cash will be used to fund research on glioma or will be routed to other foundations that assist sick children.

A staggering sum.

Laurye died on September 10th.

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.