Smoldering Multiple Myeloma (SMM). Questions and Answers

Posted by DMD81 @dmdinapoli81, Dec 6, 2025

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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Profile picture for rknicker @rknicker

40% in bone marrow, 333 k/l ratio, but no CRAB symptoms so still smoldering, no treatment at this time.

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@rknicker
Did they perform a FISH panel when they did your BMB?

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I don't know. If they did I have no access to them and they were not discussed. Second opinion, not Mayo, recommends to begin treatment. What is that like? Still working full time and wondering about what arrangements to make for whether or not to teach.

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Profile picture for rknicker @rknicker

I don't know. If they did I have no access to them and they were not discussed. Second opinion, not Mayo, recommends to begin treatment. What is that like? Still working full time and wondering about what arrangements to make for whether or not to teach.

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@rknicker

For Multiple Myeloma (MM), a FISH panel is a standard diagnostic tool used to identify specific genetic abnormalities that determine a patient's risk level and guide treatment choices. Because myeloma cells often don't divide well in the lab, FISH is preferred over traditional karyotyping for detecting these "hidden" genetic changes.

Might want to ask. Usually performed as part of your BMB.

Detects chromosome abnormalities that might put you at higher risk of progression to MM.

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As we age, stress becomes more of a factor in our health, and can release the wolves within our bodies. An ablation causes stress, as does any viral illness and age related changes to our life. Never underestimate the power of stress to trigger the disease or disorder that we are suddenly facing.

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Profile picture for righty01 @righty01

@rknicker

For Multiple Myeloma (MM), a FISH panel is a standard diagnostic tool used to identify specific genetic abnormalities that determine a patient's risk level and guide treatment choices. Because myeloma cells often don't divide well in the lab, FISH is preferred over traditional karyotyping for detecting these "hidden" genetic changes.

Might want to ask. Usually performed as part of your BMB.

Detects chromosome abnormalities that might put you at higher risk of progression to MM.

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@righty01
Thank you. Correct. The FISH report is not in my UF online info. who did the BMB. I will need to ask next time in. UF has indicated treatment to start in the next month.

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Diagnosed last August w SMM. Late March ‘26 started weekly Darzalex and been very fortunate to have no side effects (occasional light fatigue). Now on my bi-weekly treatment of Darz through summer. I’m not as handy with lab numbers as many here are, but when I look at blood tests results (and meet with my oncologist), numbers are moving toward normal range. My oncologist is pleased. He is adding one infusion of Zoltronic Acid to my next appointment as I have Osteopenia. Have read this treatment is occasionally used for MM too. Has anyone else with SMM had this added to their treatment? My second (annual) CT and PET scan coming up in a month. I am so grateful to be close to a major center (Cedars Sinai in LA) and have terrific treatment.

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I don't think an ablation could cause SMM, but no one knows the effect of stress in the situation. Stress is a factor in overall health.

I was diagnosed with SMM a few weeks ago. My m-protein is only 0.5 and my PET scan shows no lesions but my bone marrow biopsy is 10-15% while on 25mg prednisone for PMR. My kappa lambda ratio started at 8.21 before prednisone but has risen with each check on prednisone, and is now over 10. If not for the PMR and my rheumatologist, I'd never know about the SMM. I have to get off the prednisone before I will know my true SMM risk factor. I'm currently at 15mg with a taper to 12.5 planned this week and a plan to discuss tocilizumab for PMR instead of prednisone. I need rheumatologist, hematologist/oncologist and insurance to sign off on it.

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I am 72 years old and I was diagnosed with MGUS in 2007 when I was 54. Every 6 months since then I go back to my hematologist /oncologist for blood and urine work up. My Kappa / Lambda ratio has been decreasing to .11 and my Lambda free light chains have recently been rising and are now at a 96. I'm told that 100 would be indicative of either SMM or MM. I am awaiting the results of the 24-hour urine but the rest of my blood work is pretty good. I work out a couple times a week at the Y and really have had no symptoms other than numbness in my legs and feet for years.

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