Why continue with Revlimid (lenalidomide) after stem cell transplant?

Hi @tbow. It’s understandable, after having gone through a autologous stem cell transplant (using your own cells) for Multiple myeloma, (MM). that you want to just ‘be done’ with it all. But your doctor would like you to take a maintenance medication to help prolong your remission and you’re reluctant to do so. Maybe this explanation will help.

You have a type of blood cancer which allows your body to produce too many plasma cells. As you’ve already discovered, this can create some nasty complications for you. To help rid your body of these cancer cells, your doctor recommended an autologous stem cell transplant (ASCT).

This type of transplant is Not a cure for MM. But it can help keep you in remission from the disease longer. Some patients may require a second ASCT down the road. But the goal is to keep the MM damaged cells at a low count to minimize further damage to your body.

You had chemotherapy, after which you had a harvesting of your stem cells. Once those were set aside for later, you had chemotherapy to clear any remaining cancer cells from your body. Now, the ‘clean’ stem cells have been returned to your body where they will replenish your bone marrow and blood supplies.
The amount of MM damaged cells are at a minimum right now and that’s where your doctor wants to keep the level. By taking the Revlimid (Lenalidomide), you can help to minimize the re-proliferation of any of the MM damaged cells. This will help keep you in remission longer.

Certainly it is within your right as a patient to decline further treatment. Have you talked this over with your doctor?

@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

@loribmt thank you so much for your explanation and information it is very helpful. I have spoken to my Doctor/haematologist, and she was not happy that I didn't want to agree with the medication, I am worried about the side effects although I know that it doesn't affect everyone I just wanted to be clear. Many thanks

@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

Hi @tbow. Sometimes being aware of the logic behind a medication recommendation can a help with the decision making. From my understanding, Revlimid (Lenalidomide) as maintenance drug following an auto-transplant (ASCT), is pretty standard. Basically, this drug targets and kills myeloma cells.
As I described before, an auto transplant isn’t a cure for MM but it may help get you into remission or greatly reduce the Myeloma cells. Revlimid also enhances the function of the immune system to help immune cells recognize and destroy myeloma cells. This helps prevent new myeloma cell growth.

But your concern for potential side effects is certainly valid. Quality of life is important. Many people don’t have issues but you’d like to be able to weigh your options. That’s why I think it’s important to talk with your doctor about your concerns, such as, if you do have side effects what’s her alternative plan? You and your doctor are a team in your health care journey. You should be able to help make decisions regarding treatment. ☺️

Do you know if you reached complete remission post transplant? How long ago did you have your transplant?

@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.

@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.