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.

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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@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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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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@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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@lfevold Welcome to Mayo Connect.
I have smoldering multiple myeloma, which really is myeloma that is not being treated, yet. My sub-type is IgM, but I also deal with chronic kidney disease [stage 4, eGFR 28%]. We are holding off starting chemo at this time, due mostly to the involvement and possible further downturn of my kidneys.

Every three months I have all the tests to see where the dis-ease status is. Because my kidney issue concerns protein leaks, we run some extra labs, also. Is is difficult to wait? Yes, indeed! But I am grateful for each day I am given.
Ginger

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I have smoldering multiple myeloma since mine was more aggressive then average I was able go into a clinical study at mayo clinic in Rochester MN you start chemo treatment right away. The sooner you can start with most cancers the better. We will see how things go with this study.

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@lfevold Hello, Linda. Allow me to introduce myself. Colleen invited me into your conversation because I was diagnosed at Mayo Clinic in Rochester. A high sed rate was red flag on my first visit to a rheumatologist in 2002, and I start my long journey with MGUS and a wonderful oncologist. That year I went to Mayo, was diagnosed there with IgG Kappa Myeloma in 2004. My greatest life blessing is that I am not a worrier, so following smoldering Myeloma until 2016 when I started treatment was an issue only because of monitoring it with periodic tests. Feel free to check out my other posts for my life on Connect since then. We are to eat common sense balanced diet which has been difficult for me for various reasons since treatment started so I concentrate on protein and then fruits and vegetables. Salt and sugar have been additives far too often, but they helped with intake and I reached remission in spite of myself. You are fortunate in that you understand the inns and outs of all the lab work we need to keep an eye on. Understanding that helps us be our own best advocate and I’m sure you will be able to do that. What else might I be able to help you with based on my experience? Nancy

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@gingerw

@lfevold Welcome to Mayo Connect.
I have smoldering multiple myeloma, which really is myeloma that is not being treated, yet. My sub-type is IgM, but I also deal with chronic kidney disease [stage 4, eGFR 28%]. We are holding off starting chemo at this time, due mostly to the involvement and possible further downturn of my kidneys.

Every three months I have all the tests to see where the dis-ease status is. Because my kidney issue concerns protein leaks, we run some extra labs, also. Is is difficult to wait? Yes, indeed! But I am grateful for each day I am given.
Ginger

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What is being done for your kidney disease while myeloma is not being treated? Are your red blood cell numbers ok?

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@sylvia67

What is being done for your kidney disease while myeloma is not being treated? Are your red blood cell numbers ok?

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yes

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@sylvia67

What is being done for your kidney disease while myeloma is not being treated? Are your red blood cell numbers ok?

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@sylvia67 My kidney disease is caused by an ultra-rare autoimmune condition. I knew back in 2015 when the diagnosis came in, that eventually I might be on dialysis. My oncologist and nephrologist determined the myeloma is not affecting my kidneys, so far. I am on two different high blood pressure meds to keep the strain off my kidneys, and following a strict renal diet. Plus exercise as much as possible, reduce stress.

And, I start oral chemo for the myeloma, today. We will keep a close eye on the kidney function.
Ginger

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@gingerw

@sylvia67 My kidney disease is caused by an ultra-rare autoimmune condition. I knew back in 2015 when the diagnosis came in, that eventually I might be on dialysis. My oncologist and nephrologist determined the myeloma is not affecting my kidneys, so far. I am on two different high blood pressure meds to keep the strain off my kidneys, and following a strict renal diet. Plus exercise as much as possible, reduce stress.

And, I start oral chemo for the myeloma, today. We will keep a close eye on the kidney function.
Ginger

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@sylvia67 At your stage, watch and wait is not good enough, but you don't have to do much to protect yourself. The trick? Since you have the initial certainty of KD, get yourself a Whole Genome Sequencing ( Dante, Sequencing.com, etc. ) and have them go through the data with their computer and software. Then you will be able to watch the changes in whatever impacts the disease comes up with over the next few years, and deal with them as they come along. I just saw a kidney specialist yesterday. I might as well been talking to a stump. MAYO says I am in stage 3-4, but this guy says everything is fine, doing better all the time, and I bleed like a stuck hog from my kidneys and urethra. I have anti-Insulin DNA , urethra blockage DNA, and sever types of Chronic or Acute Kidney DNA. Knowing that, the primary, the cardiologist, and the other specialists and I know what to watch for.

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@oldkarl

@sylvia67 At your stage, watch and wait is not good enough, but you don't have to do much to protect yourself. The trick? Since you have the initial certainty of KD, get yourself a Whole Genome Sequencing ( Dante, Sequencing.com, etc. ) and have them go through the data with their computer and software. Then you will be able to watch the changes in whatever impacts the disease comes up with over the next few years, and deal with them as they come along. I just saw a kidney specialist yesterday. I might as well been talking to a stump. MAYO says I am in stage 3-4, but this guy says everything is fine, doing better all the time, and I bleed like a stuck hog from my kidneys and urethra. I have anti-Insulin DNA , urethra blockage DNA, and sever types of Chronic or Acute Kidney DNA. Knowing that, the primary, the cardiologist, and the other specialists and I know what to watch for.

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check comments concerning organization first

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