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My Parkinson's specialist offered the opinion that the results of the Nilotinib trial were no more than a placebo effect. Robin Ruth Sent from my iPhone > On Jan 15, 2016, at 9:22 AM, Trauti Boyd <[log in to unmask]> wrote: > > 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