Smoldering Multiple Myeloma (SMM). Questions and Answers

@sallik74
Congratulations on your remission. You seem to be a very early patient using Darzalex. Glad you had no side effects. I’m SMM and starting Darzalex by itself next month. My oncologist is very supportive of it as a treatment.

@hlwd7
Diagnosed with MM in Sept. 2023. Have had 30 sessions with Darzalex. Also am on lenalidomide; 21 days on, 7 days off. My "numbers" in 9/2023 were in the upper 1200's, now they are in the low 200's. My oncologist is very satisfied with the progress. I have no pains related to MM or any side affects of any consequence. Treatment and meds are very, very expensive. I hope you have as good insurance as I have. Also, I am 83 years old.
Good luck,
Jerry

@jrenjr
Thank you Jerry. Did you have MM straight off or initially go through SMM?
All best.

@hlwd7
MM straight. Five months before that my primary care doc gave me a clean bill of health.
Go figure! Que sera.

@dmdinapoli81
I have IGG Lambda.

Lambda flc is 414. Kappa is 17.1.

Diagnosed with MGUS 2/24. Recently moved to intermediate SMM based on BMB fish panel showing gain of 1q and monosomy 13. Plasma cell % is 10-15. M-Spike is 1.62. No crab symptoms. Negative Pet scan. Being seen at Dana Farber

@dmdinapoli81 my fish panel showed gain of 1q and monosomy 13. Puts me at higher risk of progression.

I was diagnosed with Light Chain Smoldering MM in Oct 2025 because my Light Chain ratio was at 101.55 but over the course of 5 months, it has dropped to 93 without treatment. Kidney function is normal so my light chains aren't impacting the kidneys. Pet scan normal, no symptoms, some immunoparesis because igm is at 17. Unfortunately, when the lab did the FISH test in October, they performed it on unenriched bone marrow so I have no clue if I am high risk or not. The fact that they didn't enrich it bugs me. But, I supposed whether I am high risk or not isn't relevant at this point because I am not treating. I do get blood work tested every 2 months I think because my MM specialist doctor wants to see if I am stable. So we are at least keeping a close eye on it. I have to say, this diagnosis is annoying because even if I don't progress, I must still get bloodwork for this condition for the rest of my life. Ugh.

I was diagnosed with high risk SMM last December. PET scan and MRI showed one iliac lesion. So, I was happy with the initial SMM, but then it turned out to be high risk. Not being treated but monitored. Could be worse, I guess. Good luck, everyone.

@rimord just curious if you don’t mind me asking. Why are you not being treated if you are high risk SMM? What is your plasma cell percentage, M-Spike, kappa lambda flc ratio? Any other blood work that is concerning?

@righty01
Curious also. The new standard is to treat high risk SMM.
I’m standard risk and am hoping for a clinical trial spot. I want this alien out of me!