*An appeal to help get Congress to take action follows this story*
Paul L. started feeling numbness in his forehead when he was working abroad in Jakarta in 1999 [the link goes to his website, the source of most of this information]. He was diagnosed with a brain stem glioblastoma mutliforme, an aggressive but fairly common brain cancer. He immediately went to Houston, where his brother lived, and on June 2, he had a biopsy done through MD Anderson. The diagnosis is that it was a grade 4 glioblastoma. The biopsy itself quite an invasive procedure that lasted 7 hours, involved draining the fluid from his head, and entailed allowing the brain tumor to slump down poke out from a hole in the skull.
He feels drawn to the Burzynski Clinic, but decides to start with radiation. His character comes across in his description of how it starts:
Each Monday you were supposed to go visit your radiation oncologist to see how things were going. Well the first Monday he was on vacation so we went to visit him the second Monday. The follow up is “conveniently” scheduled the same day as your radiation session. Just 6 hours later. So you can come back downtown and spend another 3 hours messing around at MDA. So we show up at 1pm for our appointment. We had already been there at 7am. Maybe this doctor has something positive to say. Well about 3pm we get invited in to the examining room. Another 15 minutes or so this arrogant little vacationer comes in and spends about 5 minutes with me. I ask him if he knows anything about BURZYNSKI. He does. He is very condescending but does claim to know that BURZYNSKI’s treatment does have some efficacy. Very negative. Anyway, that was it. I never went back for another Monday waste of time. I even encouraged other patients to boycott this stupid waste of time. We are sheep. I think there was one that followed my small rebellion.
Knowing what I know now I would not have wasted my time on this old, outdated, and antiquated treatment. A waste of time in my opinion. The hospitals are still just trying to get those big machines paid for. Again.
To be clear, Paul has had surgery and radiation, both traditional treatments for this type of tumor, both of which improve survival times of patients. Like many other patients, he is shows more than a passing interest in alternative medicine.
I was on a very strict detox diet. I was doing coffee enemas. I was taking 20,000 mg of vitamin C every day. IP6. Bovine tracheal cartilage. CoQ10. All therapeutic doses. I drank my own urine for 6 weeks. I was taking a whole list of brain-related supplements, and herbal remedies. […]
I went to healing touch where the practitioner tries to align your energy flow so that your body can heal itself. We even went to visit a shaman. Probably the most suspect of anything I did. The point is you need to do everything you can. Don’t just wait on the doctors. Because in my opinion they just don’t know for terminal cases.
His first meeting with Burzynski is, like in so many cases, the only time he is told that there is something that might help him, a dangerous trap that anyone is likely to latch on to:
Just before the end of radiation Jennie and I went to interview with Dr. BURZYNSKI. We both had our censors on full. I am strongly inclined to base decisions on intuition. When I can I try to marry both intuition and analytical analysis. Too much of one or the other and you won’t make the right decision. I looked Dr. BURZYNSKI in the eye and asked him about my case. He told me precisely the type of chemotherapy MDA would offer me (MDA had yet to recommend a chemo-poison yet but when they did BURZYNSKI was right). BURZYNSKI had analyzed my blood work, and reviewed my chart to date. He told me that antineoplastons had only a 30% chance of interacting with my tumor. If it did interact with my tumor there was a 50% chance that antineoplastons could stop the tumor. Let’s see: even if he was exaggerating a little any number over 1 is already a huge increase in my current odds. Okay. Let’s roll.
The problem is that Burzynski has no basis to make these assertions. No trial, even 15 years after this took place, has ever demonstratedthat antineoplastons have any therapeutic effect. (Should I mention that I get a little creeped out by the way the word Burzynski is capitalized throughout?)
At this point in the narrative, we have a strange moment, and it is worth looking at in some detail:
Once we got started at BURZYNSKI the tumor had grown back 11%. There was some discussion between my oncologist at MDA and what BURZYNSKI was saying as I was still doing my MRIs at MDA. However, this stopped after we got a call from my oncologist to say I should stop BURZYNSKI as something was going wrong with the tumor. Really? It was growing to the cerebellum or some such stuff. This call came through my brother and so I really doubt the accuracy of the call. Jennie called the MDA oncologist back to understand what he was talking about but he never returned her call. My brother really did not want me to follow the BURZYNSKI protocol. […]
Whatever. I remember Jennie and I decided that if MDA had nothing new to offer we would just continue with BURZYNSKI. If the doctor at MDA saw no reason to call back after such a scare then to heck with them. Now we think it may have been some stupid scheme my brother might have been up to. Go figure.
I simply don’t understand the complacency here. If there is a problem with the MRI…you should look into it. If you think your brother (who appears to be a bit of a roguish figure) lied….you should still look into it. I don’t understand this mentality. What if there was a misdiagnosis? What if there was additional shrinkage in the tumor? What if it was twice as big? What if….? And we won’t know. It’s another unknown variable thrown into the pot on top of the radiation and the surgery.
When they start at Burzynski, the tumor, he reports, has grown back 11% after shrinking 20% due to radiation. Understand that the effects of radiation can be felt on tumors for months. He goes through the compulsory Burzynski nursing program, where the family learns how to do everything on their own (I wonder if this does not botch any trial, what with consistency of reporting the administration of treatment?) He anticipates the effects of the chemotherapy:
Encouraged to follow a low sodium diet. Drink at least 5 quarts of water per day. The antineoplastons are very high in sodium. You need to watch your sodium content. Dr. BURZYNSKI’s staff is helpful and compassionate. I know you don’t get FDA approval based on touchy feely stuff. But you should at least get some bonus or demerit points. [emphasis added]
Except for the sodium, the ANP treatments go about tickety-boo:
The dose of antineoplastons is built up to gradually. I was on 500 cc of A10 and 80 cc of AS2-1. I stayed on this dose for the full initial 6 weeks and then some. However, my catheter kept plugging up and my sodium levels were always getting too high. Finally, elevated liver enzymes made it so we had to reevaluate the treatment level. I eventually ended up on 330 cc of A10 and 60 cc of AS2-1 to the end of my treatment.
He reports what, if true, is dramatic shrinkage in the weeks that come, but it could be effects from the radiation. The tumor size, at six-week intervals: 2.4% (at 6 weeks), -12.9% (12 weeks), -15.7%, -18.9%, -4.0%, -16.7%, or as he says, approximately 75% from baseline by November 2000. Then we see something horrifying:
To keep my sodium levels down I had to drink at least 5 liters of water per day. I drank at least 7 to 10. Some days I would drink as much as 20 liters. I was trying to wash the tumor remains from my system.
20 liters a day?!?
They declare his tumor is in complete remission by December 2000:
The plan was to remain on the antineoplastons until September 2001. This was to ensure that the tumor was dead. Can you believe it? No hope of making it out of 1999 alive and we are talking about killing this tumor?
Further, now knowing how expensive the FDA approval process is BURZYNSKI is relatively cheap. Another thing, I compared my first 3 months of treatment at MDA and the first 3 months at BURZYNSKI and found that they both had cost more or less the same on a monthly basis. An insurance friend of mine from Sacramento, CA. told me that in fact BURZYNSKI was indeed cheaper than the standard medical regime. The current standard regime offers no hope for brain cancers. However, insurance will cover something that does not help.
I should point out a few things here. A hospital that is dealing with an insurance company has a huge markup on their treatments and services because they only expect to be reimbursed a fraction of what they bill insurance. When someone does not have insurance, unless there is some sort of relief, the patient gets stuck with the entire bill. What Paul says is comparable to Burzynski is the sky high prices that hospitals charge, which gouge patients when they aren’t insured.
Furthermore, he’s wrong to say that standard treatment “doesn’t help.” Life expectancy and quality is improved from resection and radiation–they can add years of life. Now, if you say, “You will still die of cancer,” well, yes, probably. It’s a crappy diagnosis, but it is simply wrong to say it doesn’t help, though I can understand that from the other side of the IV bag, as it were, things might not look very rosy.
Paul becomes increasingly involved with the marketing of the Clinic, including patient testimonial night:
There is a patient support group meeting every Wednesday night for prospective patients here in Houston. If you decide to come they will tell you all about it. It is at the hotel where everyone stays while visiting the clinic. I go there. Tell my story. Listen to the heart rendering stories people have to tell. The suffering. I know what people are going through. I often weep while there. To myself. However, I am happy to share my miraculous story. We all need hope. If I can help you with that I feel so fulfilled. I think it is good for a prospective patient to meet a survivor. If I am not traveling I am there.
This seems to me to be…somewhat unfair, to surround the desperate with apparent successes (though as told by Paul, there is reason to suspect that there is enough uncertainty that we’d need to have a large scale clinical trial to see if it is likely that the treatment helped.
No, I have no double blind studies nor reams and reams of data. I am just a guy that antineoplastons worked for. And, randomly I meet others that have and are having some degree of success with this form of treatment. Therefore, in my very basic logic I believe that if I randomly meet patients that have success with this treatment, then the actual number of success must be much higher. ???
I don’t even know that that means. I would point out that he is far more likely to meet someone who has not died than someone who has died. In April 2004, Paul leaves his job of over two decades and goes to work for Burzynski.
In August of 2004, however, he starts experiencing symptoms again, as we hear in January 2005:
I have gone on disability as of December 1st 2004. For the past 6 months we have been dealing with what we have thought to be post radiation necrosis. However, I could have tumor recurrence. Maybe both.
Anyway, since I believe antineoplastons to be the treatment for brain tumors I have gone back on IV antineoplaston treatment the weekend before Christmas.
Since this is an unapproved drug Dr. Burzynski had to go to the FDA to request permission for me to participate in the protocol. I do not meet the requirements exactly and therefore I have been admitted on “CE”. Compassionate Exception. The radiation necrosis can be as chronic as the tumor so we will need to address this problem as well.
In December 2005, Paul is still alive but his quality of life is greatly diminished:
I have not gotten well at all. I still need 24/7 care. I can’t swallow. I get all my feeding via a tube in my belly. I cannot go to the toilet on my own. I have not been able to shower myself since April 2005. I wanted to be in better shape by now. I am not.
This sounds like a pity party. Sorry. My mind is good. Fully functional. My body is just wiped out and I just can’t seem to recover. If you can imagine what it is like to start to wake up and then start to feel awful and then you cannot walk. You want to sleep – then you don’t – then you do – then you are all messed up again. This happens every day.
Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and so this never happens again. Find out about real clinical trials by visiting clinicaltrials.gov.