Anyone with Myeloma post ASCT taking lenalidomide for maintenance?

I am on lenalidomide as a maintenance program and was on it for my initial pre-transplant drug induction. The fatigue has been manageable for me. The primary side effect I have is severe constipation. Having said that, my oncologist felt the constipation is from the Darzaflex, though I am only on that 1x/month now and received it more often during drug induction. My maintenance program started in February. Good luck.

@3sew1 thanks for sharing your experience. I had the constipation during induction too taking lenalidomide. That was something I really didn't like. Daratumumbab or darzaflex on the other hand was really all good for me. Anyways, have a restful recovery!❤️

I started Induction of RVD in January of 2019, SCT in May, Lenalidomide since September 2019. Started at 10 mg, currently at 5 mg. I have had no adverse effects, only mild constipation. My Dr. says best to stay on as long as I have no adverse affects. Hope this helps you.

@lrzellman thanks for sharing. So its almost 7 years you have been on Lenalidomide? Wow.

I had Poems Syndrome. I had Bmt on 3rd jan 2-026. As Per Latest VEGF my disease in under control. My doctor is insisting Lenalidomide as maintenance medication. Can anyone please share whether it’s required in Poems Post SCT to take maintenance medication. Wht is Latest Protocol to for the Poems Patients

Hi @a9uradha, While you’re waiting for feedback from members like @lifeagain, whose husband had an autologous stem cell transplant(ASCT) for his treatment of POEMS, I’d like to welcome you to Mayo Connect.

From my understanding it’s not uncommon to have maintenance therapy followup after an ASCT for diseases such as MM or POEMS. Though for POEMS there is not a great deal of information regarding the efficacy of the maintenance at this point. But from information I’m seeing MM and POEMS treatment run parallel and so the Lenalidomide, because of its success with MM followups, is used also for post ASCT in POEMS patients.
If you’re a reader here’s an article from ASH Publications that you might find relevant:
https://ashpublications.org/blood/article/146/Supplement%201/5737/553447/Nationwide-real-world-outcomes-of-POEMS-syndrome
Was Lenalidomide part of your initial treatment for POEMS?

Yes it was a part of treatment before ASCT. But i feeL neuropathy issues increase after using it despite reduction in blood disorders as per PET SCAN

@a9uradha. If you felt your neuropathy worsened from the medication before your ASCT then I can certainly understand your hesitancy in using Lenalidomide as a post transplant maintenance drug.

As patients we have the right to ask questions and also help make our own medical decisions. The maintenance drug may help to keep you in remission longer or, the ASCT may do that on its own. I do know neuropathy can be debilitating and also interfere with your mental health and your well-being overall. I think this is a valid discussion to have your doctor…what’s the risk vs reward?

I have been on lenolidamide post BMT for > 5years now. I'm still in deep remission (haematologists view anyway). I have had neuropathy in my feet for > 5years and just starting to get it in some fingers in my right hand. For me i think the worst side effect is the diarrhoea. I spoke to the haematologist about it, and she said that there isn't much evidence out there that lenolidamide is even effective after such a long period, so i c ould stop it if i want to. I'm a bit afraid to quit completely so instead i extend my "off" time from 1 week to 2, and that seems to help. Here in New Zealand where i live, there is no alternative treatments available. No new meds for MM have been approved here for > 10years. Our health system isn't the greatest. Plug on though; every day above ground is a good one.

Not Sure about lenolidamide But been on velcade after stem cell transplant for 9 years with no side effects