Smoldering Multiple Myeloma (SMM). Questions and Answers

Posted by DMD81 @dmdinapoli81, Dec 6, 2025

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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for DMD81 @dmdinapoli81

@salma5k
While I don’t want to say it’s nice to hear from someone under 45 but it is good to hear as I was first diagnosed with IgG kappa MGUS at 38. I was tested for rheumatoid arthritis just to rule that out, but 2019 my key numbers have only gone up, which prompted my first bone marrow biopsy last year. Now I am on a 4 month monitoring schedule. With 24hr urine every year.
With your BMB did you have any mutations of the chromosomes?
I have found a lot of new research, including one from the Mayo Clinic had of now included chromosome 13

Jump to this post

@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.

REPLY
Profile picture for DMD81 @dmdinapoli81

@salma5k
Thank you so much for sharing your experience.

Jump to this post

@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.

REPLY
Profile picture for DMD81 @dmdinapoli81

To everyone coming into this chat. It is specifically about Smoldering Multiple Myeloma (SMM). If you were looking for answers on other diagnosis, there are form chats specific to those. Please keep crosstalk to a minimum.
Thank you.

Jump to this post

@dmdinapoli81 I believe the title of this discussion is "blood cancers and disorders." That says it: it's not narrowly limited to SMM.

REPLY
Profile picture for DMD81 @dmdinapoli81

@wesleym
Have you ever gone to the istopMM studies website where they have the risk assessment? It gauges the likelihood of having a BMB over 10%.

Jump to this post

@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.

REPLY

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.

REPLY
Profile picture for salma5k @salma5k

@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.

Jump to this post

@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.

REPLY
Profile picture for amberl99 @amberl99

@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.

Jump to this post

@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.

REPLY
Profile picture for amberl99 @amberl99

@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.

Jump to this post

@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.

REPLY
Profile picture for kcmogal @kcmogal

2016 - Diagnosed with Non Hodgkins Lymphoma, involving the IgM.
2025 - Recently diagnosed with Multiple Myeloma, involving the IgA. Treatments to start soon.

Jump to this post

@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/

REPLY
Profile picture for DMD81 @dmdinapoli81

To everyone coming into this chat. It is specifically about Smoldering Multiple Myeloma (SMM). If you were looking for answers on other diagnosis, there are form chats specific to those. Please keep crosstalk to a minimum.
Thank you.

Jump to this post

@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.

REPLY
Please sign in or register to post a reply.