Should all multiple myeloma patients look into stem cell transplant?

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

@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

@gingerw thank you so much,
I have discussed with my doctor, but she was not helpful at all and she said that I only have two weeks left to start taking the medication because you start within 100 days after the SCT transplant. I am this weekend to make up My mind if to take it or not. Many thanks

@tbow because you don’t feel like you have all the answers you need. I would recommend that you start, or at least order the revlomid. Then I would look into getting some answers.
The international myeloma foundation is an excellent source of information. That combined with a frank conversation with your doctor might be helpful.
My husband had stem cell transplants, then he went on maintenance revlomid. It wasn’t intrusive and it didn’t make him sick. It was a low dose and he had a great quality of life. This lasted for two years then he went off and had a two year remission before needing to go back on treatment.
He has had several periods of treatment and then periods of no treatment. During the past 16 years he has had a pretty good quality of life and we have travelled and had a pretty normal life.
I don’t believe he would have had 16 years of life quality without making good choices with a doctor that keeps us well informed.
If you can’t get answers from your doctor, a second opinion might be in order. Do you like and trust your oncologist?

@tbow
I would start the meds while I was deciding. If you don't get the answers you want from your doctor, maybe you're not framing your questions correctly. It can be difficult to gather your thoughts during the conversation with a doctor if your mind is racing through everything you're being told. If that's not the issue, then maybe you should start the meds while you get a second opinion.

@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.

I hope you have great insurance because it is very expensive.

@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.

79 years-old here...Diagnosed at 78. Was 3 years too old for stem cell transplant and prior colon cancer and Widowmaker stents made me a 40% risk of not surviving the recovery period.
I was told the cost is about $400k.

@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.