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I was diagnosed with MM in 2024 and I have had a stem cells transplant. Just finished the remaining 2 circles of chemo two weeks ago and my Haematologist has asked me to start the maintenance meditation which is lenalidomide, but I have refused to start because I am tired of medications. Is there one that have refused to take the medication and why? I am just confused about everything at the moment, please help me. Many thanks

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Replies to "I was diagnosed with MM in 2024 and I have had a stem cells transplant. Just..."

@tbow Welcome to Mayo Clinic Connect! Congratulations on your stem cell transplant! I get that, being tired of taking medications!

As you know, we are each different, even when we share a common diagnosis of multiple myeloma. What dosage of lenalidomide is your doctor suggesting? A stem cell transplant is not a cure, but can put you into remission for an unknown amount of time [another one of the variables for each of us]. What feedback has your doctor offered when you told them you haven't decided to follow up on medication?

Lenolidamide can work to kill any remaining cancer cells, and stimulate the immune system. It can help retard growth of new MM cells. It might be a long-term medication, or used only until numbers are where your Dr finds them acceptable to stop its use.
Ginger

@tbow I've been on lenalidomide for 33 months. My oncologist told me yesterday (6-26-26) that I am in remission but nothing said about getting off the meds.

@tbow I hear your frustration. I was diagnosed with MM in early 2025 and had a stem cell transplant in late October 2025. Prior to diagnosis, I took no medications, just supplements and I worked with a Chinese herbalist. I am currently on maintenance treatment of revlamid and darzaflex. I don’t like being on revlamid,though my side effects could be worse; my doctor and I are working on the dosing. It is frustrating, but revlamid is an important medicine in many maintenance treatments for MM.
I encourage you to get connected with a MM support group. I attend the one from Dana Farber, where I had my transplant (I live 2 states away). It has been unbelievably helpful to know that several people in our group have complaints about revlamid. People shared things that might be helpful, but just knowing that I wasn’t alone it this was so helpful.
More importantly, keep talking to your doctor or reach out to your nurse navigator. I also agree with others on this site that International Myeloma foundation and the Multiple Myeloma Research Foundation are great resources . I view MM as a chronic illness and just like any other chronic illness, it has treatments that one may not like but that they need. There is a lot of uncertainty, be kind to yourself. Hang in there.

@tbow
I would suggest that you start the medication. Do your homework, but never underestimate how tricky multiple myeloma is. I have had most of the treatments out there for my multiple myeloma and now in a clinic trial. I stopped the Revlimid for a short time because I also was tired of all the medication. The multiple myeloma came back soon after quitting the maintenance therapy. It is a sneaky disease and can become resistant to a therapy. Keep fighting, keep informed, and never underestimate the seriousness of this disease.