lenlidomide maintenance side effects long term

Opps, sorry ment Rivaroxaban as the blood thinning drug, sorry got confused!!

My partner is a long-time lenalidomide taker and, heaven bless it after three unsuccessful periods on different chemo. Lenalidomide suits her and she is now, seven years after beginning taking it taking half the dose than was prescribed at the beginning. But it comes at a cost and that cost is an "uncertain" stomach, a horrid thing which can only be controlled by the regular taking of medication which checks diarrhea. But after ten years following diagnosis we are just so happy that she is still leading a nearly full life.

Hi Dickielex,

Thanks for you post, really glad you have managed 10 years after diagnosis, which is amazing!

Can you tell me what dose of lenalidomide  your partner started on and how much she is on now and if she took the dexamone steriod drug with it?? 

sorry to ask but the consultants never seem to say the same thing, which places doubt in your mind as what is the best for me!!

No steroids, just the Lenalidomide, now down to 5mg a day with a 5 day holiday between courses. But that is what currently suits her and it might very well be awful for you. Good luck in any case.

Hi Dickielex, thanks for your reply and your info to what has been taken! Did your partner refuse the steroids or were they not prescribed at the start?

Sorry for so many questions

Steroids were not prescribed with this chemo

Wow, ok you hear different things from different people, can u tell me her first prescribed dose amount as you said your partner half the dose straight away as they want me to start on 25mg which seems high as that was the dose I was on with this drug as my chemo one before my stem cell!! 

So sorry to keep asking things but is just nice to understand what other people have done as I feel the consultants don't help explain your options!

Thanks again