I have smoldering Myeloma. Does anyone have this diagnosis?

I see that this is an older thread of conversation, but it appeared in my list of updates today. I am glad it did! I have SMM, low risk, but my M spike has increased along with other key bloodwork. So, I am interested in the stories of those of you who are diagnosed with SMM and are still there, as well as, your stories of moving to MM and how you are doing now. Thanks, in advance, to all who respond. It means so much to all of the SMM folks!

@rustypenny There never is a "good time" to get a diagnosis, and coming around the holiday season seems like a double whammy, right?!

Here is a link from the International Myeloma Foundation, explaining the different levels of myeloma, that you may find informative: https://www.myeloma.org/what-are-mgus-smm-mm
As you can see, it is a good idea to find out if you are high-risk or not. That is determined by additional testing and information. If you are not already, I suggest you get under the care of a hematologist oncologist. In my humble opinion, Mayo is the gold-standard of care, or a large teaching hospital.
Ginger

Hi there,
I was diagnosed with smoldering myeloma last month. I am finding it hard to comprehend all the information from all the labs. I keep reading about it and looking for a more positive outcome but I guess it is a wait and see game, not something I have ever been good at. I live in Idaho but I think maybe I need to find better care, like Mayo. Does anyone have any suggestions?

I wish you success as you learn about smoldering Myeloma. Ask your care team for a packet of literature and delve into it learning as much as you can. This will help you worry less and be more proactive.

Yep, have that DX after bone marrow biopsy. Prior was just MGUS, but no treatment yet. Dr says still Low risk! Test every 3 months.

Hey Keith, how are you doing now?
Have you had to start treatment?
Best wishes
Mascot

Hi,

Adding my data to this group as I am now classified as Smoldering. I only discovered the situation in October. 50 years old, male, healthy. No focal lesions, bone marrow just came back at 22%. My M-Spike was 1.9 g/dL, then 1.67, and finally 1.64 this past week. Beta-2 Microglobulin between 2.2 and 2.4. IgG 2326, IgA 20, IgM 29 (apparently not good when A/M are falling and G rising). Presently completely stumped as to how to read my FISH genetic tests. I live in Spain and only have so much time during the visits and couldn't get far enough to understand it. Does anyone know how to read these genetic results?

Is anyone with Smoldering considering clinical trials?

Thanks,

Keith

I have Asymptomatic (Smoldering) Myeloma. My last blood tests showed that my IgA had decreased from approximately 1350 to 1150 but my IgG has decreased from 350 to 250, with IgM at 17. My heme/onc is concerned about me being susceptible to upper respiratory infections, which I have been lucky enough to not be getting and recommended I start IVIG infusions quarterly.

I lead a support group for MM patients (I’m a patient too), and I’ve seen several smoldering patients stay in that spot for years. There is a virtual support group for smoldering MM patients called “Smolder Bolder”. Led by 2 amazing people, 1 a patient, 1 a Mayo Clinic MM nurse.

The Smolder Bolder Virtual Support Group was created to provide education and support for people living with Smoldering Multiple Myeloma (SMM). We meet on the Second Monday in January, March, May, July, September, & November from 7:30 - 9:30 pm Eastern Time. If you would like any additional information, please contact Jessie Daw or Teresa Miceli at Group Email: smm@imfsupport.org.

My IgA decreased slightly on my last set of analyses. Unfortunately, my IgG took a precipitous drop to a level my heme/onc is going to start me on quarterly IgG infusions.