In 2010 Daniel’s stage IV glioblastoma multiforme returned. It had been a long road to this point, which he kept a record of in his blog; he gives a quick summary of his journey to Burzynski:
I sometimes wonder how I got to the point where I’ve exhausted all of the treatment options in the last four years. But, then again, I was given a 2-3% chance of living 3 years…so I am blessed. Craniotomy #1, 6 weeks concurrent chemo/radiation, two more rounds of chemo, two more craniotomies, 19 Avastin infusions and five more chemo rounds.
In 2011, doctors discovered a metastasis in his corpus callosum. It was inoperable.
In early June 2011 Daniel is in Houston, starting ANP. The costs are, of course, outrageously high:
I am starting a phase II/phase III clinical trial for the antineoplaston gene-targeted therapy for Glioblastoma patients. All of the major university clinical trials have turned me down. And this is my best option. Although the actual medicine is free through the clinical trial, there is a continued cost of $7600 /month for daily nurse consults, lab work, extra medication and much more. Like I said extreme. As this could take eight months or more.
I don’t know what starting a “Phase II/Phase III clinical trial” means. The only phase III trial was for optic pathway glioma which Daniel does not seem to have, and it never started recruiting. What was he told?
Primary Outcome Measures: Progression free survival (PFS) [ Time Frame: 4 years ] [ Designated as safety issue: No ] Comparison of the pr…
Well, apparently he was told by someone:
They are having a 20-30% success rate with GBM patients, which is a heck of a lot better than the 2-3% success rate for standard therapy I have been on.
This is completely unsupportable. The trials that would allow Burzynski to make this claim have never been performed, and for anyone to say otherwise is deceptive. I wonder if he heard this from someone at the Clinic or from the patient group?
He says that the treatment cost $23,000 to begin, which was raised for Burzynski by caring friends and family.
Daniel is undergoing the typical ANP regimen:
I have a port (hole in my chest) and I carry around a bag that delivers the medicine day and night. It’s a tough regime and I am on steroids, but seem to be doing better each day, including experiencing symptoms of tumor breakdown.
What are the symptoms of “tumor breakdown”? From everything that I have read, it is the side effects of antineoplaston chemotherapy. (ANP is without a doubt chemotherapy with truly unpleasant side effects.)
In July, Daniel mentions some unconventional beliefs, it sounds like, in the cause of his cancer. That there is a virus that is somehow interacting with the environment:
I can relate to this verse as my head feels on fire 6 times a day seven days a week. I take steroids to reduce inflammation, but before they kick in, inflammation rises as they somehow feed this strange virus that is somehow related to my environmental issues.
We learned of hyperbaric oxygen chamber treatments as a way to help kill this virus and instead of the traditional $100 cost of a session, there happens to be a doctor in podunk Rossville, GA (just 20 minutes up the road) who does them for 35 bucks. I can’t help but see God’s hand in this.
By the 11th, he is on his full dose of ANP and getting 4 blood tests a week.
My first MRI report obviously shows growth, but the clinic sees that in most all their cases.
That’s because ANP probably doesn’t work. The false hope that they shovel down the throats of only the most desperate is disgusting. He continues to have seizures several times a week, and he is feeling a number of worrying symptoms, including:
…balance beginning to slightly fade, seizures, head pressure[.]
On August 9th, Daniel died. As far as I can tell, the antineoplastons did nothing but cost.