Smoldering Multiple Myeloma (SMM). Questions and Answers

@donna195 did your BMB include a FISH panel? Any chromosome abnormalities?

@righty01 @donna195
Dr. Sikander Ailawadhi from the Mayo Clinic explains the monosomy 13 marker, chromosome mutations, and how specialists locate high-risk markers. Check out what he has to say. It’s interesting. No one thing to mention having chromosome mutations or deletions can increase your risk factor, but I think are more important once it has progressed and with medical advancement, they found ways to reduce those initial thought risk factor

@righty01
Yes it included a FISH panel and no abnormalities. I was just hospitalized for 9 days from a strange infection that was abscessed in my right neck cavity. my immune system is a little weak right now. Hoping to get some answers from ENT, infectious disease and hematology/oncology follow ups after i finish remaining antibiotics.

I am new to all this. Diagnosed with SMM August 2025; I was 65 then, healthy adult. I don’t have my numbers at my finger tips but I am high risk (based on one of the two charts used to gauge results). My oncologist is starting me next month on Darzalex which was just approved in December 2025 for high risk SMM. Does anyone else have any experience with this new med? It’s given subcutaneously. Thanks.

@hlwd7 hello, I am still categorized as MGUS and have no experience with Darzalex, but I want to welcome you to Mayo Clinic Connect, and I hope that there are members who will jump on this thread and answer your questions.
I hope that you will share your personal experience with us if you feel comfortable doing that once you start taking the medication.

@pmm Thank you for your welcome. Brave new world here. I have a very small support group (two brothers and a friend) at home as a not ready to share this new situation. I'll be grateful for any support or thoughts here. From all I've read and what my oncologist advises, Darzalex treatment seems very encouraging in lowering high risk SMM developing to full MM by 51-60%. My treatment starts next month and hoping to avoid potential side effects. Thanks again. I'll keep you all posted.

@hlwd7
May I ask what your score was for high risk? I am worried about me being high risk now with risky mutations as well.
Thank you
Mascot

I went from mgus to smm to mm fairly quickly. Currently in remission but have been on Darzalex and Revlimid for over 3 yrs with no apparent side effects. Originally I got Darzalex weekly along with 20 mg of revelimid which was decreased continually. Now get Darazallex monthly and Revlimid 5 mg on alternate days.

@dickmm
Did you have to do induction therapy?

@mascot
I’m not sure which numbers would help you. My M protein is 3, and plasma cells percentage is 30%. Both have remained static in the last couple of months, but the 30% is what puts me into high risk. Do check with your physician about your concerns.