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i can understand the frustration, ray! if it were me i'd also be willing to take a chance with a promising treatment rather than sit and wait. btw if there should be a miracle do not count on your insurance. i took a closer look at different insurance companies when this subject came up and not one will pay if something is prescribed off-label unless that off-label use is thoroughly documented. trauti ----- Original Message ----- From: "Rayilyn Brown" <[log in to unmask]> To: <[log in to unmask]> Sent: Saturday, January 16, 2016 2:35 AM Subject: Re: Nilotinib > 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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn