Diagnosed 2 years ago, stem cell transplant 1 year ago, currently on lenalidomide maintenance as part of the Myeloma XI trial. I'm doing OK at the moment, long may it continue!
Hi everyone: Diagnosed 2 years ago, stem cell... - Myeloma UK
Hi everyone
Written by
Louis-Henry
To view profiles and participate in discussions please or .
Read more about...
2 Replies
•
Hi Louis-Henry - welcome to the community! We hope you find it helpful.
I have been on lenalidomide (revlimid) maintenance here in the US for almost 7 years since my autologous transplant. During this time my m protein numbers have gradually dropped until now it is barely detectable. I hope you have a similar experience.
My only question: why does the NHS myeloma treatment page never mention lenalidomide as an initial treatment, but only thalidomide? My experience with both drugs during 2 clinical trials suggested a positive response to either but I had experienced significant peripheral neuropathy from thalidomide which is still with me today. About 8 years ago I read that the NHS & Celgene had reached a cost sharing agreement to allow lenalidomide for NHS patients. What happened to that agreement?