Newly Diagnosed with Smoldering Multiple Myeloma: Watch & wait

Posted by lfevold @lfevold, Oct 22, 2020

Interested in connecting with others with the same diagnosis. Looking into dietary changes that could help.
I will introduce myself to the group. This will be long so sorry in advanced.

I was a Lab Tech for 15 years so of course we ran test samples on ourselves in training. I have always had an elevated ESR - I put that down to allergies. Jump ahead to 2013 I started to have GI issues plus a couple of cycles of Diverticulitis. Local doc ran a panel for Celiacs but the was negative but the IgA was 1533 mg/dl, no follow-up even though I asked. GI symptoms went away. 2019 started having issues with GI again plus a slightly decreased Hgb not bad but put me through colonoscopy and upper GI - nothing remarkable. Blood work the IgA was now 1960 mg/do. Total Iron was slightly decreased so just put me on over the counter Iron supplements. Fast forward to June 2020, gi issues (diarrhea for 6 weeks) - local doc ignored it. At that point I requested a referral to Mayo Clinic/Rochester. Through all of the testing for GI issues which nothing found remarkable, I asked about the IgA which they ran again, came back 2350 mg/dl. Also C Reactive Protein was elevated. They referred me to a Rheumatologist who ran all of the RA type testing but included the MGUS screening. I have an M Spike of 1.6 mg/dl. Low Lambda Light Chain but Kappa was right on the top end so the Kappa/Lambda Ragio is a little over 5.0. Also re ran the Immunology levels IgG low at 326, IgM low at 10 and IgA still at 2350. So the RA doc referred me to Hematology. They ordered Iron studies which are normal now, CT Skeletal no lesions seen, and Bone Marrow Biopsy - came back as Plasma Cell Myeloma with approx 20% plasma cells. Slightly hupocellular. Plasma Cell morphology abnormal large cells with large nucleoli and binucleation. Plasma Cells express: monotypic kappa light chains, CD38 & CD138. They do not express CD18 or CD45.

Final DX after meeting with specialist.
Smoldering Multiple Myeloma Subtype IgA Kappa Light Chain with an average risk of progression. 20% Plasma Cells, 1.6 M-Spike, 5 Kappa/Lambda ratio. On FISH I do have the 1q gain marker. At this point I am at a Watch & Wait with blood & physical exam every 3 months.

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

Profile picture for Colleen Young, Connect Director @colleenyoung

Hi @lfevold, I'd like to add my welcome and also bring @beepoop @1nan @pro @lkzvlk @gingerw and @cctoo into this discussion. You can read more about their experiences with smoldering multiple myeloma in this discussion:
- Multiple Myeloma- I have smoldering Myeloma. Does anyone have this diagnosis?: https://connect.mayoclinic.org/discussion/multiple-myeloma-i-have-smoldering-myeloma-does-anyone-have-this-diagnosis/

You may also be interested in this video with Mayo Clinic hematologist Dr. Kumar
- Multiple Myeloma: Smoldering, disease progression, and changes in approach: https://connect.mayoclinic.org/page/hematology/newsfeed-post/smoldering-myeloma/

@lfevold, for some people watch and wait can be disconcerting. I prefer to call it active surveillance. How do you feel about active surveillance as your primary treatment option?

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At this time I am fine with it. I am looking at things that could potentially help such as dietary changes or supplements.
Linda

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Hi @lfevold, I'd like to add my welcome and also bring @beepoop @1nan @pro @lkzvlk @gingerw and @cctoo into this discussion. You can read more about their experiences with smoldering multiple myeloma in this discussion:
- Multiple Myeloma- I have smoldering Myeloma. Does anyone have this diagnosis?: https://connect.mayoclinic.org/discussion/multiple-myeloma-i-have-smoldering-myeloma-does-anyone-have-this-diagnosis/

You may also be interested in this video with Mayo Clinic hematologist Dr. Kumar
- Multiple Myeloma: Smoldering, disease progression, and changes in approach: https://connect.mayoclinic.org/page/hematology/newsfeed-post/smoldering-myeloma/

@lfevold, for some people watch and wait can be disconcerting. I prefer to call it active surveillance. How do you feel about active surveillance as your primary treatment option?

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Profile picture for summerkrae @summerkrae

Why do they say it is smoldering? Did they test your protein? My mother had MM and indicators were high protein and IGa best wishes. My NP got MM and she recently had a stem cell transplant In Indy at the Simon cancer center to hopefully cure it

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Total Protein is not elevated but IgA is ag 2350 with a FLC Ratio is at 5 with a 1.6 M Spike. Bone Marrow is at approximately 20% plus they have the +1q gain genetic marker.
My 20/20/20 is 20/1.6/5 but because of the genetic marker it bumped me to average risk of progression.

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Why do they say it is smoldering? Did they test your protein? My mother had MM and indicators were high protein and IGa best wishes. My NP got MM and she recently had a stem cell transplant In Indy at the Simon cancer center to hopefully cure it

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