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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Rimrod,
I don't know. I was new to the MM game then; I was more concerned with longevity than numbers. The numbers were probably high because they were what eventually led to the diagnosis of MM. All the numbers are near the norm for now.
Thanks,
Jerry

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Profile picture for hsminc @hsminc

@wesleym i liked your reply. I have had nine covid shots. I previously was getting blood draws every 3 months making it easy to track if there was any correlational relationship to changes in my MGUS IFE or FLCs. There was not. But to my surprise, I found a relationship between increasing FLCs and my 4 joint replacement surgeries. I have been noodling another jt replacement surgery so I called and requested a special telephone conversation with my Mayo hematologist. The answer was “no causal relationship” - just maybe normal disease progression. My husband thinks it is the titanium protheses or other parts installed during surgery. Who knows? I have had MGUS now going on 24 years. It probably would not have been discovered if I had not received Internal Medicine care at Mayo where they have a special interest/knowledge with this disease. I have no other “signs” or lab work.

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@hsminc
Interesting. I had a titanium nickel alloy device placed in my heart 21 years ago. Diagnosed with Smoldering Multiple Myeloma this June. Never considered a correlation. Won’t ever know, I suppose, but interesting.

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Profile picture for DMD81 @dmdinapoli81

@rimord
There are med journals out there that show correlation between certain COVID shots and issues with people who have blood issues. One that I read years ago shows people with MGUS are two folds more likely to develop arterial and veinous thrombosis. We know about the blood clots and strokes. Talk to you doctors about your concerns and its relationship.

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@dmdinapoli81
I wonder (when I’m bored) if the Covid virus infections have played a role.

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People who are SMM, were you Lambda high or Kappa High?

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Profile picture for hsminc @hsminc

@wesleym i liked your reply. I have had nine covid shots. I previously was getting blood draws every 3 months making it easy to track if there was any correlational relationship to changes in my MGUS IFE or FLCs. There was not. But to my surprise, I found a relationship between increasing FLCs and my 4 joint replacement surgeries. I have been noodling another jt replacement surgery so I called and requested a special telephone conversation with my Mayo hematologist. The answer was “no causal relationship” - just maybe normal disease progression. My husband thinks it is the titanium protheses or other parts installed during surgery. Who knows? I have had MGUS now going on 24 years. It probably would not have been discovered if I had not received Internal Medicine care at Mayo where they have a special interest/knowledge with this disease. I have no other “signs” or lab work.

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@hsminc
That’s very interesting. Thank you for sharing. I have a “cyst” in my bone marrow that on a bone scan, light up light a Christmas tree, but was told it’s nothing about 13 years ago. And they did nothing because they said it would destroy the bone. Now I wonder…

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Profile picture for rimord @rimord

@sallik74 Dr. Google referred me to a medical journal that said there was a direct link from the covid shot to my auto immune thingy. Wish I could remember the name of the mag. I'm sure it can be dug up.

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@rimord yes, please “dig it up.” I work in the medical field and am concerned to read that people feel not getting the Covid shot is a good idea when diagnosed with MGUS, SMM and MM. I have MM and will have a stem cell harvest in January 2026 in preparation for a bone marrow transplant. There is evidence that the Covid vaccine in very beneficial for those with compromised immune systems, like those of us with myeloma. If your hematologist recommends getting the Covid vaccine, along with other vaccines, I would highly recommend heeding their advice. I received 5 vaccines at the beginning of my myeloma journey and I firmly believe each will be hugely beneficial in the treatment.

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Profile picture for DMD81 @dmdinapoli81

People who are SMM, were you Lambda high or Kappa High?

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@dmdinapoli81 , i have had SMM since May 7, 2025 with 20-30% plasma cells with a lambda restriction, 2.2 g/dl monoclonal protein and flc ratio less than 0.1 on bmb. Lambda is very high 631 and Kappa is very low 35.

My hematologist ordered a repeat serum flc this week and I have a repeat bmb on Christmas Eve. My last two MRIs showed 2 focal enhancements, 5 mm x 8 mm and 5 mm x 6 mm. There is a 3rd that us 4 x 4. None of these areas showed up on July PT CT scan. We are discussing start of treatment to slow progression after we see results of new tests.

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Has your hematologist gone over the 20/2/20 risk stratification model? It would seem like you would be considered intermediate to high risk for progression based upon your lab results. plasma cells > 20%, M-Spike > 2 and your flc ratio is approaching >20 involved/uninvolved 631/35. Is your flc ratio 35/631 = .05546.
I am scheduled for my first bone marrow biopsy on 1/5/26. My flc is .056. Lambda flc is 331.7 and kappa is 18.6. Diagnosed with MGUS 18 months ago. M-Spike is 1.2, IGG is 2075, Beta 2 microglobulin is 3.3. Had a bone scan recently with came back negative for focal lesions. Trying to stay on top of this....will start treatment ASAP if warranted.

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Profile picture for righty01 @righty01

Has your hematologist gone over the 20/2/20 risk stratification model? It would seem like you would be considered intermediate to high risk for progression based upon your lab results. plasma cells > 20%, M-Spike > 2 and your flc ratio is approaching >20 involved/uninvolved 631/35. Is your flc ratio 35/631 = .05546.
I am scheduled for my first bone marrow biopsy on 1/5/26. My flc is .056. Lambda flc is 331.7 and kappa is 18.6. Diagnosed with MGUS 18 months ago. M-Spike is 1.2, IGG is 2075, Beta 2 microglobulin is 3.3. Had a bone scan recently with came back negative for focal lesions. Trying to stay on top of this....will start treatment ASAP if warranted.

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@righty01
Just read as much as you can and ask clarifying questions when you see your hematologist/oncologist! My igg is 2555. Try to take care of your body and mind. The good news is that the new treatments are helping stop progression before it get to organ damage and holy bones!

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Profile picture for donna195 @donna195

@righty01
Just read as much as you can and ask clarifying questions when you see your hematologist/oncologist! My igg is 2555. Try to take care of your body and mind. The good news is that the new treatments are helping stop progression before it get to organ damage and holy bones!

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