Important!! Canadian Dr. who prescribes Nilotinib Off Label

[Dogmatic377]

I have been following Georgetown University’s research with the use of Nilotinib, the 12 person trial, and the phase 2 75 double-blind recent trial. It appears to me that the drug is well-tolerated, safe if precautions are followed, and the results seem to indicate that it will arrest the progression of the disease.

I have lived with Parkinson’s for 11 years with fairly mild progression for the first 10 years. However, progression in the last 10 months has been very rapid and frightening; I now have difficulties in walking, rigidity, and strength. If it takes another 4 – 6 years for Nilotinib to be approved by the FDA and Health Canada it may be too late for it to help me.

Has anyone been prescribed Nilotinib by a Canadian Dr. (since I live in Canada) or an American Dr. near the border with Canada in New York State and area? Please let me know.

Dogmatic377

[jenniferdunstan]

I hope you get some responses as I would most definitely be interested in learning more. Best of luck!

Jennifer

[Dogmatic377 in reply to jenniferdunstan]

If I do I can let you know. Are you interested in trying Nilotinib?

Dogmatic377

[Hidden in reply to Dogmatic377]

Am I hearing a “psst....psst”? LOL

[jenniferdunstan in reply to Dogmatic377]

Yes, I am very interested in trying Nilotinfib the sooner the better. I will be seeing my neurologist Nov. 18 and will hope she can be persuaded to give it a go with me. If she refuses it's going to be difficulty to find a doctor who will, because there is a shortage of neurologists in my city (Albuquerque, NM). And it may require time and effort that she can't spare. I'm trying to stay positive. Have you seen the post by MBAnderson? I believe he is able to order nilotinfib from China. (requires a dr. script I'm sure)

[rrunk7]

Took for two years and it was very expensive and did nothing