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07-17-2016, 05:52 PM | #31 | ||
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My last neurology appointment in the Movement Disorder's clinic at Georgetown (GT) was within the last week. My neurologist, Dr. Bahroo, said the Nilotinib trial has been held up by the FDA as they scrutinize the data from the last trial. There is funding; he was positive about that. They are aiming for Fall but he said don't be surprised if it gets pushed to Winter. The hold up is the FDA. November is my next appointment I'll get an update then, if I don't hear from them before.
From what I'm reading it looks like there maybe two trials for Nilotinib.....GT and MJFF. More participants, more locations, more results could be good. I've been asked if I'm going to be in the GT trial. Dr. Bahroo has submitted my name and I will be contacted once they get things moving. Then I have to be screened and qualify, like everyone else. I was reading the trial results, posted by Tupelo (thank you) and there were any number of conditions that could keep someone out of the trial. Then there are those spinal taps that make me nervous (never had one) but PD makes me more nervous. Now on to the price of Tasigna, brand name for Nilotinib. I called the Canadian pharmacy I use when I hit the Medicare gap. The price of Tasigna 150mg, 120 count, $4,539.39, approx $38.00/pill. A lot better than U.S. $10,000+++. Plus there is a referral plan that reduces the price further. I can give my pharmacy number to someone and they get a 25% discount on their first order and I get 5% credit to my account. Then people can refer others and get the credits for themselves. The pharmacy has everything written for the plan. I'll let the forum know if I hear anything from GT before my November appointment. Everyone take care and stay well. Betsy |
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