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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@dmdinapoli81 No mutations that I can remember, but I haven't had a BMB in a very long time. It's definitely possible some mutations may have developed.
@dmdinapoli81 Very welcome. It's nice to connect with fellow SMM patients. Myeloma is such a complex disease and shared experiences help us understand the challenges of navigating through it.
@dmdinapoli81 I believe the title of this discussion is "blood cancers and disorders." That says it: it's not narrowly limited to SMM.
@dmdinapoli81 I am aware that istoppMM has conducted a study concerning how certain blood labs may predict the results of a not-yet-performed BMB. Since I've had three BMBs, however, that study isn't particularly useful for me. If this is not your question - sorry, I don't understand it.
I have SMM- but I don't seem to get the numbers some folks here are talking about, I had BMB, MRI,XRay no lesions. My numbers are IGA 31 (low) IGG 2170 (high) IGM 43 (norm) KappaQFC 154.14 Lamba 4.31 Ratio 35.76
MSpike 1.9 They haven't changed much in the first year, diagnosed 12/24. My Hem/Onc said I was low to med risk - but I don't think he specializes in MM I think he is molecular geneticist, which I had assumed would mean he could read my chart. I guess what worried me is the thought that there is a window for most effective treatment during this stage before SMM turns to MM and I don't want to miss it.
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1 Reaction@salma5k I’m not sure how long they’ve had the FISH test that determines genetic markers. When you had your bmb, they may not have been able to determine that. It’s a very specific technologically advanced test.
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1 Reaction@amberl99 I am familiar with FISH, but I think only the congo red staining with the usual testing was done. I honestly can't remember. It's been so long. I would have to go back and review the results.
@amberl99
It might also be what you hemoc orders I guess too. It wasn’t cheap either, blew my mind when I got back the bill and it was over 31K before insurance and 75% was pathology. It’s also amazing the technology and more recent studies of SMM itself. I think people that would be moderate risk of progression years ago would now be considered high risk.
@kcmogal, welcome. IgA myeloma is the second-most common type. (In people with multiple myeloma, 70% have high levels of IgG protein, 20% have high levels of IgA and 5–10% produce only immunoglobulin light chains.)
You might wish to connect with other members in this discussion:
- A Summary of My Multiple Myeloma
https://connect.mayoclinic.org/discussion/a-summary-of-my-multiple-myeloma-journey/
See all: https://connect.mayoclinic.org/group/blood-cancers-disorders/
@dmdinapoli81, you're quite right that the title of this discussion is "Smoldering Multiple Myeloma (SMM). Questions and Answers".
As @wesleym @amberl99 @rimord point out, SMM is closely related to MGUS and multiple myeloma, conditions that also belong is the Blood Cancers & Disorders support forum. As with conversations in real life, like around the dinner table, topics will go off course and come back on track.
The Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/) remind us to stay on topic. When a conversation makes a tangent, that's okay. It happens. Then we can bring it back on topic with respect.
Let's keep Mayo Clinic Connect informative, supportive, and above all a place that is welcoming.
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