New to group taking isatuximab

I’m on Radar trial awaiting SCT I feel really tired a lot but just listen to my body and rest when feeling this way 

Hi. Dipp.   Not on that   But wanted to respond so you know we are here !      I am 2.5 years post. S. C. T.   Not on any maintenance drugs for over a year.    Was Lenolidamide.  Still in remission w haematologist this week.     Kick its arse !     Kevin ️

That’s amazing. I’m nine months post SCT but I thought Lenalidomide was forever. What needs to happen for me to come off it? 

i had a severe skin reaction,    the dose was reduced but  this did not fix it,  so    1 year ago,  he took me off lenolidamide,   and  blood results still good,   so far  

Thanks for that. Sounds like you’re on the right track. My reason is a bit more frivolous. It’s made coffee taste weird! 

well i used to drink a lot of coffee,  but not anymore,  and i have a fancy machine at home!! 

Hi jo100, just to say I had a SCT 3 years ago ( April 23) was put on Len as maitaince but had a severe skin reaction as well as major liver problems.  Came of Len and never revisited it . I remain in remission , just have blood checks and a chat every 3 months with care team .I think it may be standard treatment post SCT but have a talk to your team . X Sue 

Hi Vespa   just wanted to ask you why you are not taking Lenolidomide any longer. I have been in remission after STC for nearly 2 and a half years and have taken Lenolidomide all this time.  No side effects apart from the neuropathy caused   by the Velcade at the beginning of my treatment.  I know your journey has been very similar to mine.  Best wishes

I

Hi Vespa  have just seen your other message and understand why you came off it.  Guess I have just been lucky!!  (About time!)