@A MyMyelomaTeam Member, I have read several articles and also on this site that after two years of being on revlimid and being in remission there is such a minimal benefit to keep taking revlimid and so much benefit to stop taking. I was on revlimid for two years and have been off for 9 months now - blood work is good - I go every three months for test. And finally around the 8th month being off of revlimid I feel so much better. That medicine is so strong that you really don’t realize it until you get off of it. Please read more articles but I highly recommend getting off. Give your body a chance to recuperate as if by chance MM comes back you will be stronger to fight it. Plus there are many new meds that can put you back in to remission if need be. Wishing you all the best. Less is more!

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A MyMyelo...

I stopped revlimid maintenance treatments about 5 yrs ago. I had too many bad side effects that my transplant specialist allowed myself to stop receiving revlimid. My body went back to where I was before I was back in 2008 when I was diagnosed with multiple myeloma. I was back being a man again. I went back to having intimacy with my new partner again. But you take a chance with getting multiple myeloma again. Pedro Flores Jr.

Hi Jim, there have been studies that have looked at this question in the past- continuing with maintenance or going off and taking a medicine holiday break. Here’s what they found (ChatGPT):

Continuous/Indefinite Maintenance: Median progression-free survival ranges from 42.5 to 58.2 months (roughly 3.5 to 5 years), depending on transplant status and clinical trials.

Off Maintenance / Fixed Duration (e.g., 2 years): Median progression-free survival ranges from 30 to 38.9 months (roughly 2.5 to 3.2 years).

Recent findings from the ENDURANCE E1A11 Trial show that while continuous therapy slightly delays progression, long-term overall survival can be similar for standard-risk patients who stop at 2 years, avoiding cumulative side effects.

So while there is a statistical remission timeline difference between the two, the long-term survival timeline doesn’t seem to move the needle much. Personally, I’ve been m-spike free for 32 months and maintenance drug free for 10 months. It’s been great getting my mind and body feeling back to normal. However, my last blood test showed the presence of a small m-spike. I’m hoping it’s an anomaly as the other blood numbers still look good. But if my MM is waking up, I’ll move back onto maintenance as this is considered a biochemical relapse (since I went off Pomalyst) and not a drug resistant relapse which would cause me to seek a new line of treatment.

Thanks Donna!
As we all know, every patient has a different reaction to treatment and should way out the risk of going off maintenance. I feel comfortable with my decision and with my Dr will monitor my progress and every couple of months blood test.
Take care

I am in the same spot. I did not have a stem cell transplant but have been on Revlimid 10mg for about 3.5 years. All
My blood tests have been clean with no detectable m spikes. We have decided this month to begin a new next gen sequencing MRD blood test that just came out to help with the decision. I took it along with my standard myeloma blood test and am awaiting the results this week. My Onco says it can help understand just how deep the remission actually is and can be used to help make this decision easier. I see the oncologist in two weeks and am hoping to get a reprieve from Lenalidomide. I have lost my ability to walk thanks to neuropathy but I am hoping to at least feel better and reduce toxicity. It is always a gamble knowing when to stop but I am hopeful. Best of luck!