Originally Posted by Betsy859

I’ve been in the Nilotinib trial at Georgetown almost a year and a half. The first year I’m pretty sure I was on the placebo then there was a three month “washout”. Now I’m in the “open label” phase where I actually receive the drug for the next year. I’ve been on 300mg of Nilotinib for 71 days.
There are 75 patients in the trial (I’m #41) once everyone is in the “open label” phase they will let us know what drug we we were taking the first year of the trial ....placebo, Nilotinib 150mg or Nilotinib 300mg.
What they have found out so far, that they are sharing, is that Nilotinib doesn’t work for everyone. They are thinking this has to do with genetic makeup. At this time (and this could change) Dr. Pagan thinks 200mg Nilotinib maybe the ideal dosage. I also hear through the grapevine that there have been a variety of responses to Nilotinib. Mostly all positive but of course there have been those not responding. These are just a few of the things I’ve picked up during my visits to Georgetown.
Now for how I’m doing.....I can’t say I’ve noticed any real changes in the 71 days I’ve been on Nilotinib. I’m trying to keep my head out of my observations (placebo effect) but there maybe some subtle changes that I’m watching or maybe feeling. These are a slightly improved smell not great but something. On more nights than not I sleep better and some days (not every) my tremor is less. So certainly nothing dramatic happening for me. Just hoping more improvements are ahead.
I haven’t heard from anyone else in the trial but would love some feedback from anyone else in the Georgetown trail or the MJF trial.
I hope this was helpful for those wondering about the GT trial.
Take care.
Betsy