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thanks Nic and Tony!!! -----Original Message----- From: Nic Marais Sent: Saturday, November 07, 2015 5:36 AM To: [log in to unmask] Subject: Re: what I know so far re Nilotinib or Tasigna I fully agree. Having difficulties myself in typing, I can just imagine her effort and time involved to create this document. WE ALL APPRECIATE IT RAY!! :-)) Nic 63/21 On 6 November 2015 at 17:23, AW Adler <[log in to unmask]> wrote: > good summary > > On 11/5/2015 4:22 PM, Rayilyn Brown wrote: > >> 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 >> >> ---------------------------------------------------------------------- >> To sign-off Parkinsn send a message to: mailto: >> [log in to unmask] >> In the body of the message put: signoff parkinsn >> >> > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto: > [log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn