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I found out a year ago I had SMM. Mine seems to progressing quicker than they thought it should. I have my blood numbers, just don't know how to read them. At first I didn't want to know how to read my numbers, too scary. I've accepted it now. My BMB came out okay, so I was glad of that.
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@carlabaz My BMB last July had 15% or more cancer cells based CD138 staining (CD138 is a protein on cancer cells). That is above the 10% boundary for SMM, but my hematologist thought still MGUS because I don't have CRAB symptoms (maybe kidney [R is renal]). My kappa was 387 then, but now 934. If you have light-chain MGUS, a 24 hr urine test is useful (heavy chain deranged plasma is too large for kidneys, so less damage).I will start I-VRD chemo for high risk SMM next month (after a full body PET scan). I have IgA Kappa light chain SMM with the 1q21 chromosome mutation, not good. It is scary, but treatment has and continues to evolve. Mayo has a zoom support group for people with SMM (another for MM); if you can't find it online, check with a mentor.
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@carlabaz Welcome to Mayo Clinic Connect. It often can be unsettling to hear a diagnosis, right? I don't know that there are specific timelines for us when moving from one stage of MGUS to SMM to full-blown myeloma. For me, I went from MGUS in 2017, to SMM in 2018, to myeloma in 2019; definitely an overachiever!
What protocols are your medical team advising at this point?
Ginger