There has been a lot of press and interest lately about the recently-concluded Georgetown Univ. Dept. of Neurology clinical trial testing the cancer drug nilotinib (Novartis) on patients with Parkinson's Disease and Diffuse Lewy Body Disease. Simply Google "Georgetown nilotinib clinical trial" and you will see lots of articles.

While obviously very early in the clinical process, the results are extremely encouraging for people with these and related diseases, their families and caretakers. I called Georgetown a few times for answers about a Phase 2 trial, but they are likely inundated with expressions of interest, and as a result, have not responded to me.

For patients like my mother (age 78, who has both PD and LBD) who sadly don't have the luxury of time to wait for successive round(s) of trials to see their course, I wonder this: IS THERE ANY HOPE TO SOMEHOW TAKE ADVANTAGE OF THIS PROMISING DRUG NOW? I would love to know if there are any forums out there (online or elsewhere) where people are at least talking about the "compassionate use" of an approved drug like nilotinib for something that's it was not specifically intended for? The good news to me is that nilotinib is already an FDA-approved drug, and if there are doctors out there willing to prescribe it to PD and LBD patients with the appropriate care and monitoring, why not try it for people who basically have little hope of improvement otherwise. I see my mother declining daily, and it pains me to know that there may be something approved for use by the FDA that very well could help her NOW before it's too late. The very high cost of the drug, of course, is an issue that I simply don't have an answer for, but I would at least like to be part of a conversation about the possibilities.

If you have any ideas or thoughts on the subject, I would really love to hear them.

Thank you for listening,
Tim (first time NeoroTalk user)