Smoldering Multiple Myeloma (SMM). Questions and Answers
I wanted to start a discussion specifically on SMM. Asking specific questions about time of diagnosis, like age, m-spike level, protein in urine level and % of bone marrow involvement. If you had MGUS prior to diagnosis? Any bone or joint paint? What your Hem-onc has as your monitoring schedule? Etc.
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I was diagnosed at the age of 61. I had 10% plasma cells. I did not have MGUS before my diagnosis. I had no joint pain or any indication I had it. I was diagnosed on a work up for neuropathy. My oncologist was a wait and see type. My Rheumatologist convinced him to start therapy (Revlimid). I am glad I did. I progressed to myeloma (from labs). I had no symptoms. I have had a stem cell transplant and now I am in remission after Car-T therapy last spring. I was diagnosed in 2017. I had no symptoms until 2024 when I broke my clavicle and had myeloma in my jaw. So I have had myeloma now 8 years.
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10 ReactionsI have a question: Did anyone out there develop MM after a cardiac ablation? I know I did! My hemoglobin was fine until I had the procedure. Then, it cratered. Now it's coming back, but I've been diagnosed with MM.
I am 60 years old. I was diagnosed in September of 2024 at the end of chemotherapy treatment for colon cancer. I was having lower back pain and low haemoglobin.
M protein is 2.5 and plasma cell infiltration of 50/60 percent. I have lesions on my right hips but told it is not cancerous.
I get monitored every 3 months.
Currently on wait and watch.
I am concerned that l am not offered any treatment?
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2 Reactions@rimord Interesting you ask this question. The thing about the progression from MGUS to Smoldering MM to active MM is we don’t always test to catch all the phases. In my case we missed diagnosing MGUS but…I lost some blood during my cardiac ablation in 2023. About a yest later I finally had labs drawn by my pcp. I was iron deficient. She sent me to hematologist who drew the correct labs and I went to a MM specialist at the closest city cancer center. There I was diagnosed with SMM. I think I had MGUS for a couple of decades based on abnormal labs then but they didn’t do the correct labs to detect it. So I don’t think my cardiac ablation caused my SMM, but I think the subsequent blood loss that made me iron deficient and symptomatic helped to find the SMM. I’ve had a couple iron infusions and feel better. I’m on the watch and wait path which does make me a bit anxious. Next rounds of labs are at the end of the week. Gulp.
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4 Reactions@princesskah
With your numbers I would advise seeing a MM specialist, not just a hematologist/oncologist. There’s really a wide gap of current knowledge. I understand the discomfort, I’m a watch and wait patient too but with lower numbers than you.
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4 ReactionsI have to agree, with those numbers I would be looking at intervention possibilities. With those numbers I assume they diagnosed you with high risk SMM?
@amberl99 Thank you for the thoughtful reply. I wasn't sure what I was implying with my first statement. My Hgb was good before the ablation. I have the labs to prove it. It tanked right afterwards. There is so much we don't know about the way things work. Think a hundred years ago. A hundred years from now we'll be looking back and wondering at how little we knew! I just had a marrow biopsy and am waiting for the results, but my labs are not good. Good luck with yours. Fingers (and toes) crossed!
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3 Reactions@princesskah Welcome to Mayo Clinic Connect. I see you have been a member for close to two years, and this is your first post! How are you doing post colon cancer, now?
I bet several of us are wondering who is doing the monitoring you are going through every three months? It seems there would be some follow-up with those lesions to get a more definitive overview of where your health is right now.
Ginger
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1 Reaction@rimord
I had a cardiac ablation in 2013. Diagnosed with MM in Sept. 2023. I don't see the connection.
@jrenjr I don't know. Maybe it's a coincidence. Maybe it all started with the covid shot in '22. All I know is my health went south after it. We don't know more than we know. Besides the MM and the AFib, I got a really weird auto immune disease - bullous pemphigoid.
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