Has anyone been on the maintenance trial for Lenalidomide? has it been effective? in my case I was removed because of side effects

[roan]

[PaulaS Volunteer]

Hi Roan, I've noticed there have been no responses to your post, so I guess no one else in this group has been on a trial for Lenalidomide. Nor have I, but I'd be interested to know what sort of side effects you got, and whether any other medications are now working better for you.

Best wishes, Paula

[roan]

Thanks for answering Paula, I think you may be right, there is only 400 global on the trial which is due to last two years in total. It was such a shame it did not work for me, it was doing its job, keeping white cells down, I would have qualified to receive the, very expensive, drug for however long it worked but I had horrendous rash and never really felt well while taking it. I was taken off other meds, taken with the drug, which may have been the cause (aspirin and allapurinal) you are prone to DVT while taking it, I was then self injecting with fragmin to counteract BUT, unfortunate, the rash turned into grade 4 and it was deemed to be the drug causing the problems. I have had two previous chemo treatments, the first four months of FC, with a two year remission, then five months with FRC. I had to start the trial within 16 weeks of last chemo so not sure how well that has worked. I was removed from trial in July and am still in remission this time round, my consultant is looking for another suitable trial when needed. Hope you are keeping well, CLL is a funny cancer everyone seems to have different symptoms.

Kind regards, Ann