1. this cancer drug in low doses yielded dramatic results for a 12 person Phase 1 trial for safety at Georgetown U for people with late stage Parkinson’s.
2. It is expensive at $10,000 a month. However, it depends on what kind of insurance u have and whether you live in USA
France or Germany. I will have from CVS/Medicare Part D/SilverScript, 3 month supply for $100 copay. my employer LA City Schools pays insurance company and I pay Medicare.
3. at higher than trial doses drug apparently has scary sides like heart problems/sudden death! altho these are seldom mentioned when NPF recommends further study, articles report trial as having established safety, it sounds worse than pd drugs. I had seizures and giant hematomas with ovarian cancer drugs.
What I don’t know:
1. Who is doing further trials? when and where?
2. What is opinion of neuros? I see mine next week.
3. How willing is PD community to fight for progress?
and outrageous drug costs/note that drug developer Dr. Druker’s research paid for by Leukemia and Lymphoma Society, not Novartis, drug producer.
Ray
Rayilyn Brown
Past Director AZNPF
Arizona Chapter National Parkinson Foundation
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