Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
@donna195 Sounds like you are low risk according to the IMWG 2/20/20 risk stratification model. All the best to you that you stay in the smoldering phase long-term.
-
Like -
Helpful -
Hug
1 ReactionI was officially diagnosed with SMM in December of 2010 by Dr. Joseph Mikhael at Mayo in Scottsdale, AZ. M-spike was 0.7 with 15% abnormal plasma cells in BMB. No bone involvement or joint pain. Currently being monitored every 6 weeks by local oncologist.
-
Like -
Helpful -
Hug
2 Reactions@amberl99
If we stay on topic of SMM
@salma5k
Thank you for the info, was your M-Spike always that low? What sparked the BMB?
Very welcome. My M-spike hovers between 0.7 and 0.9. I am not a healthcare professional, but my job required me to establish affiliation agreements with healthcare facilities so I was constantly in and out of doctor's offices and hospitals. I began to feel a general feeling of malaise over the course of about three months which was unusual as I had been working in this capacity for almost a decade and I had never felt that unwell before. I just dismissed my symptoms and figured it would pass. It wasn't until I was stricken with bilateral pneumonia and my blood counts were low that I knew something was wrong. Physicians also felt something had gone awry as I was only 35 years old. I was referred to a rheumatologist who ran a battery of tests. Dr. Smith found the elevated IgA levels. She then provided a referral to an oncologist/hematologist who ordered more blood tests. The abnormal Kappa Free Light Chain test prompted the BMB.
-
Like -
Helpful -
Hug
1 Reaction@dmdinapoli81 As the administrator of a board myself, I am well aware of how threads tend to drift. That seems a little harsh, however. While there are of course diagnostic criteria, the MGUS/SMM/MM spectrum is a continuum, and lines can get a little blurry on the borders.
I'm an example. Technically I've been high-risk MGUS for nearly two years. I've had three marrow biopsies during that time, because my doctor (a hem/onc whom I like a lot) keeps expecting to find >10% plasma cell involvement. Hasn't happened yet. However, a recent 24-hour urine showed significantly-increased albuminuria and bence jones proteinuria, and prompted a kidney biopsy (next week); the results may mean that I start treatment. The chart now notes SMM despite BMB results; MGRS is also in the mix.
It's a complex disease.
-
Like -
Helpful -
Hug
4 Reactions@salma5k
Thank you so much for sharing your experience.
@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%.
@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
@dmdinapoli81
Now I understand. Cross talk means something different to me. Agree to stay on topic!
-
Like -
Helpful -
Hug
1 Reaction