I have smoldering Myeloma. Does anyone have this diagnosis?

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.

I have IgA (has been in the 1300 to 1400 range), with IgG and IgM being ungodly low.
Beta-2: has been within range
Kappa Light Chains: jumped to 20.83 last quarter, big jump
Lamba Light Chains: 13.63 (within range)
Kappa/Lamda Ration: 1.53
Lactase Dehydrogenase: 140 (on bottom of range)
BM: 40%
M-Protein: 0.7 (but I've read it is typically underreported in IgA cases

Hi Richard,
May i ask which type?
I have IGG with lambda light chains and my ratio is 0,04.
Lambda is 282
BM 20%
Scared somewhat.
How did your numbers go?
Regards
Mascot

I've had Smoldering Myeloma for several years. It's slowly getting worse but my hematologist/oncologist says it may never cross the line into Multiple Myeloma. Some excellent people on here and web sites providing accurate information regarding this stage of the disease. Have you had a bone marrow biopsy along with your blood and urine analyses? It may never progress further. Many oncologists do not recommend treatment when one has Smoldering, they believe the side effects can be harsher than the effects of the disease. Plus there is no definitive evidence linking curing/slowing down the disease to treatment at this stage. Best of luck to you.