I have been off all medication it since 2022 and have been in remission for those 6+ years without relapse. It does happen and not everyone relapses. It depends on how deep your remission is during and after treatment that shows with regular testing. I've been MRD negative since my SCT in May 2020 and off Revlimid since 2022 - a bit less than 2 years on it. I'm a bit of an outlier in this group but not unique by any means. Make sure you discuss this with your specialist and never take this decision in your own hands please.

I stop Revlimid 2 years after maintenance with no SCT. I am going on 3 months now drug free and it feels wonderful.

Nick, the worst thing that could happen is you relapse which happens even when people are on meds and they have to switch to different meds. The best thing is you can be drug free for a while and let your body heal and keep Revlimid for future use. Most of us will relapse with or without meds, relapse is not the end of the world. But you can possibly enjoy a long drug free remission. My doctor originally told me I would probably be on drugs for the rest of my life because I had stage 3 hard to treat Lambda light chains MM. But he was the one to suggest getting off all meds or reduce based on results from the ClonoSEQ test.

@A MyMyelomaTeam Member 👍👏Outstanding. I hope to eventually get there. I know with my inherent bad luck, if I stopped lenalidomide cold turkey, unbeknownst to my oncologist, I would most certainly relapse. He is adamant about staying on lenalidomide at least five years before even considering taking me off of it. It is why, I will have to search out an Independent doctor or lab that could give me an MRD clonoSEQ test to determine MRD negativity. If said test comes back stating that I am negative, I will have to let my oncologist know. He'll not like me going over his head, but it's my life to worry about.
He wants to cut back my visits to every two months and starting in 2027 to every three months. So how would he know, if I'm achieving MRD negativity if I'm seeing him less frequently?
Lousy mood today, real lousy mood.

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A MyMyelo...

In 2021, I was 5915 IgA Kappa with t4;14 high risk. I had DarzFasPro + RVd Induction for 3 months and reduced Maintenance levels for 4 months.

Once they correctly tested me with the #123218 Lab that proved my persistent 0.1 MSpike was False, I got the Blood Sample clonoSEQ test that showed I was MRD Negative at 10 -6 (none per million).

In June 2022, I immediately stopped All MM Meds. I never collected my Stem Cells due to the chemicals involved and had No SCT.

I remain on Labs Monitoring Only, with Quarterly Blood Sample clonoSEQ MRD testing. My Labs are their best in 40+ years (Clean Whole Foods Diet, Supplements and plenty of Exercise)

My Onc said (probably 2 years ago) that my Labs are that of a person that’s never had MM.

My approach is Kill the Cancer, Stop the MM Meds as Soon as MRD Negative and help your Body Heal through Diet, Supplements and Exercise. Less can be Best. A healthy body can defend itself against all sorts of problems.

I’m now 5 years after my original diagnosis.