The same applies to Prostate cancer, I have, doctors told me it is very slow growing and contained in the prostrate and would probably die of old age first. My options were radiation, surgery to remove the prostrate, or do nothing. I chose to do nothing because I don't fear a few cancer cells living in my body if they are contained and not growing. I have friends who have chosen both removal & radiation and the outcomes were not very good although they removed the cancer from their body. If you are not negative with MM but it is not active there is no reason to keep poisoning yourself and destroying your quality of life.

I often think about this. I've never reached mrd negativity. But will my myeloma go crazy if I stop treatment? I don't think they know.

My first oncologist used to call it "Complete Response" instead of remission. She said with Myeloma you don't really reach remission. But that was back in 2010 when Velcade, Revlimid and Dex were the basic treatments.

Sounds about right for me. I had smoldering for 9 years. After 8 plus years of treatment I have been off all meds for 4 years now and back to the regular testing like I had when smoldering.

I know a woman in her early 50’s that is Smoldering and through LifeStyle changes, morning sun, diet, supplements, exercise, she’s keeping it very well managed.

Her Specialist, Dr Langren, reviews her Labs quarterly. Though she has a low MSpike and IgA activity, due to her very stable Labs, he’s recommending Monitoring Only, without any MM Treatments.

An interesting question is if a person has only ever been Smoldering verses had to deal with very Fully Active MM, such as 60% or more bad plasma. Though that person can see a great reduction in their bad plasma and MM Activity with Treatments, is it safe for this situation to live at a Smoldering Level verses someone who’s Smoldering and has never Progressed to Fully Active MM.

For myself, since I was originally 80%+ bad plasma and needed Treatments which did get me to MRD Negative - now that I’m on No MM Meds for over 2-1/2 years from my single Plasmacytoma Bone Tumor (with no Marrow Activity) and 4 years since my original Marrow MRD Negative status, I won’t allow myself to live in a Smoldering Mode.

I Sure that if I ever regain Levels that would be described as Smoldering, I’d locate the issue via a PET/CT - Marrow vs Plasmacytoma Bone Lesion - and take corrective action of MM Meds, for a very short time, to remove the issue and get back to my MRD Negative state - which I entirely Trust from the Blood Sample clonoSEQ MRD Test - it’s known to be Accurate to 10 -6 (none per million cells tested).