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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10 -15% plasma cells of the total bone marrow core. Immunoglobulin M is 15 (low). Kappa/Lambda flc ratio is 7.64 (high). Thank you for your interest.
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3 ReactionsI was diagnosed with MGUS in July 2025 and with SMM four days ago, in March 2026. I am a 73-year-old female. I have 10-15 percent kappa dominant IGM plasma cells, both scattered and in clusters. My immunoglobulin M is 775. My kappa/lambda ratio is 3.29. My urine protein is normal. Technically, I have bioclonal gammopathy, with an IGM kappa monoclonal protein of .35 and an IGM lambda monoclonal protein of .18. My primary symptom at this point is neuropathy of both feet, which I have had for six years. It is now starting in my hands as well. At my stage, my hematologist normally would "watch and wait," but she is considering Darzalex because it could hopefully slow the progression of my neuropathy. Does anyone have experience with this?
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3 ReactionsIf my PET scan last week had shown ANY lesions or cancer, my oncologist would have started me on I-VRD chemo. My high risk SMM is on the 3 mo bloodwork waiting plan. I have IgA Kappa light chain high risk SMM with the 1q21 gain mutation. I'm 72, my M spike is 1, kappa/lamba is 87, kappa is 931 (378 6 mo. before), no CRAB symptoms, and my BMB in 2024 showed 15% deranged plasma cells. I may plateau, but more likely I will start chemo this year or next. I do have light fatigue from the kappa proteins flooding my kidneys (small compared to heavy chains so can stress kidneys more).
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5 ReactionsI was diagnosed with MGUS June 2024 1.6 spike igg lambda, progressed to SMM in April 2025 m spike 2.1, bmb showed 20-30% plasma cells and lambda restriction. 2 mri’s in fall 2025 showed 3 focal enhancements in pelvic region. January 2026 hospitalized for 13 days for rare streptococcus pneumoniae abscess infection in neck cavity. Found PE in lung, suspected renal carcinoma on left kidney which prompted additional scans. Started Darzalex March 17. After treatment got results of NM PET and showed 10 focal lesions in rib, pelvis and femur with metabolic activity. Now adding Velcade, dexamethasone, and revlimid to Darzalex. One day at a time. Stay positive.
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5 ReactionsSMM 9/24. K/L ratio 324.0 - doubled in last 5 mos. Kappa 126 double since Dx. All immunoglobulins are really low. Gratefully no CRAB and no M-spike. Second BMB coming in a few days. Not totally sure what's going on.
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2 ReactionsI am going to Seattle in July and I have been told that Fred Hutchison Cancer Center is quite good and I should go for a second opinion, any thoughts on that? Dr. recommendations? I am currently moderate risk SMM, thanks,Rusty
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1 Reaction@rustypenny If you have the opportunity to be seen at a Center that specializes in Multiple Myeloma I would jump at the chance.
What led to your intermediate SMM diagnosis.
Were you originally diagnosed with MGUS.
Has your doctor discussed any early intervention therapy or are you watch and wait.
My local oncologist considers’s me intermediate SMM. I am now being treated at Dana Farber which is 2 plus hours away.
Have my second round of blood work scheduled for next month.
Already discussed early intervention and possible clinical trials.
My local cancer center can’t offer some of these options and testing options.
Not sure why you wouldn’t given your current situation
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2 Reactions@righty01 what make you intermediate ssm? And what is the thing that made you and your doctor decide to begin treatment?
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1 Reaction@rustypenny If you’re going to be in Seattle and have the opportunity, the Hutch Cancer center would be an excellent choice for a 2nd opinion. They have been at the forefront of hemotological studies for decades.
Here’s the link to get you started to request an appointment for a 2nd opinion
https://www.fredhutch.org/en/patient-care/request-appointment.html
Will you let me know what you find out, please?
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1 Reaction@georgiagurl
I have not begun treatment. But first course most likely Darzalex Faspro.
Intermediate SMM because recent BMB indicated gain of 1q and monosomy 13 from FISH panel. Coupled with my kappa lambda flc increasing to 24.1
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