Hi everyone: Diagnosed 2 years ago, stem cell... - Myeloma UK

Myeloma UK

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Hi everyone

Louis-Henry profile image
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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!

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Louis-Henry
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RebeccaJardine profile image
RebeccaJardine

Hi Louis-Henry - welcome to the community! We hope you find it helpful.

Kjcny profile image
Kjcny

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?

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