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Trauti and Nic I didn't get Nic's post but I agree with both of you. No drug is 'safe", I think the PD ones are ineffective and have some awful side effects. I had bad side effects - seizures and gigantic hematomas - from cancer drugs, had to quit them. Love my neuro but he won't prescribe even though my insurance makes Tasigna affordable at $100/3 mo. supply. his Cleo Roberts Research Center wants to "watch closely" too. I'll ask him again when I see him in early March. You know me, I'm in favor of rebellion, but after 20 years of PD its very hard. and only a few responded when I tried to take on Novartis. let me me know if any one has any ideas. Ray -----Original Message----- From: Trauti Boyd Sent: Friday, January 15, 2016 7:22 AM To: [log in to unmask] Subject: Re: Nilotinib hi, nick! not surpringly we had no luck with our neuro last week. but since my husband goes to the duke movement disorders clinic i sort of expected that :( it would have been a miracle if conerns over liability due to off-label use and with a cancer drug would not have outweighed my husband's willingness to take that chance. apparently, georgetown has moved ahead with a larger trial expected to last 1 year. dr hickey assured us that duke is watching closely. we will give it another try at the next appointment with our family doctor in february but i have little hope. trauti ----- Original Message ----- From: "Nick" <[log in to unmask]> To: <[log in to unmask]> Sent: Friday, January 15, 2016 2:39 AM Subject: Nilotinib > Is anyone taking Nilotinib? Would appreciate the name, address, phone > number of any MD prescribing Nilotinib for pd. > \ > Don't understand why they aren't prescribing this obvious cross-over drug. > Afraid it will hurt their income? > > The following quotes from the trial literature: > - Nilotinib was well tolerated, with no serious side effects. > - "The observed efficacy in cognition, motor skills, ,,, was the most > dramatic result". said Dr. Pagan > - Ten of the 11 patients who completed the trial reported meaningful > clinical improvements. > - Patients also showed positive changes in relevant cerebrospinal fluid > biomarkers: a-synuclein, amyloid beta -40/42, dopamine, Tau and p-Tau > > To be fair, Nilotinib has exhibited some serious side effects, but at the > much higher cancer dosages. Some of these side effects will most likely > also appear at the lower pd dosages. BUT THE CURRENT CROP OF PD MEDS ALSO > CAUSE "I CAN'T TAKE THIS DRUG" PROBLEMS. > > I rather take my chances with Nilotinib than continuing to suffer with > Sinemet. > > Everyone has to demand that their neuros prescribe Nilotinib. We need a > ground swell of rebellion against their refusal to prescribe! >> > > ---------------------------------------------------------------------- > 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