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.

Nancy, Alumna Mentor | @1nan | Nov 14, 2023

In reply to @fluffy56 "My husband was diagnosed with Smouldering myeloma. Our life has changed..waiting is awful. trying to do..." + (show)

@fluffy56 Hello from PA. I was tagged by Colleen to reply to your post, and I would be honored to help you get your life back. It won't be the same as before, but it can be one of good quality without consuming your lives with fear and constant preoccupation of this diagnosis. Can you please tell me when and where your husband received his diagnosis?
Peace, Nancy
(My favorite explanation of Peace is. " it does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart".
Unknown)

fluffy56 | @fluffy56 | Nov 14, 2023

In reply to @1nan "@lfevold Hello, Linda. Allow me to introduce myself. Colleen invited me into your conversation because I..." + (show)

My husband was diagnosed with Smouldering myeloma. Our life has changed..waiting is awful. trying to do everything we can to restrain, delay disease onset . He’s a scientist and researcher. Seems to us it would be better to treat and stop disease before it explodes.. Is there anything out there to treat it NOW.

4family2023 | @4family2023 | Apr 18, 2023

I am in the same situation. I am in a wait and see as well. Follow up every 3 months.

Ginger, Volunteer Mentor | @gingerw | Apr 10, 2023

In reply to @cheft "I’m in Twin Cities MN. Rochester MN Mayo is 2 hours away. I did look up..." + (show)

@cheft My apologies for assuming you were in the Virginia area given the info you said about the cancer institute you were seen at! Yes, definitely head to Mayo Clinic for a second opinion. The team at Rochester is stellar. My oncologist was part of that team until he relocated out here about 6 years ago. It is worth the peace of mind to know you are doing the best you can for your situation, and feel secure in the answers you are given. I know from experience with different health issues, that as a patient, you deal with everything much more confidently when you have taken the effort and time to look in to all avenues of education, and treatment, making your decisions wisely based on what you find out.

Please let me know what you decide!
Ginger

ChefT | @cheft | Apr 10, 2023

In reply to @gingerw "@ChefT Welcome to Mayo Clinic Connect. I can definitely relate to being scared when you get..." + (show)

I’m in Twin Cities MN. Rochester MN Mayo is 2 hours away. I did look up trials that may be available however they seem focused on high risk smoldering myeloma. I have been told I’m currently low risk but not sure how they decide that. Oncologist said I have 25% chance in next two years of going to active myeloma. My effected marrow went from 5-7% last year to 10% last week. I am going to talk to the Mayo docs for second opinion. As far as how am I? Ok I guess, just worried about if it gets worse in next year or two how successful is treatment in keeping me around longer? And how long can I expect to live with active?

Ginger, Volunteer Mentor | @gingerw | Apr 7, 2023

In reply to @cheft "Hello, I am 53, male. Occupation is a Chef. After 1 year of MGUS I was..." + (show)

@cheft Welcome to Mayo Clinic Connect. I can definitely relate to being scared when you get this type of news. In my situation, being the overachiever that apparently I am, I went from MGUS to SMM to active myeloma in less that 2 years! It was a surprise to everyone, including my medical team, and added to existing medical concerns.

That's not saying this will happen in your case. What you have heard, about the smoldering myeloma staying in its spot for years, is correct. If you feel confident in your team, ask their opinion. Being in the Virginia area, you could also head towards Mayo Clinic for a second opinion. Here is the link to get started: http://mayocl.in/1mtmR63

How are you doing today?
Ginger

ChefT | @cheft | Apr 6, 2023

Hello,
I am 53, male. Occupation is a Chef. After 1 year of MGUS I was diagnosed 4/4/2023 with low risk Smoldering Myeloma, marrow at 10%. I am scared. Not much scares me in life but I must say this has got me. I found out just over a year ago after a freak tibia fracture and trying to figure out how it happened. Ended up getting a dexa scan after my labs showing protein etc. My bones showed thinning so that led to more labs and then a surprise call to schedule a bone marrow biopsy. Well, now here I am after another biopsy and labs with Smoldering Myeloma and am told to watch and wait. Oncologist said I have 25% chance it will progress to MM in the next 2 years. I’m going to Abbott Hospital Piper Cancer Institute. I can’t say I’m unhappy but wonder if I should get another opinion or switch to the Mayo? I try not to freak out but it’s hard. I’m used to solving problems and I can’t fix this. How long have some of you been in the “smoldering” stage? Are any of you doing some of the Smoldering Myeloma trials I see on here and if so what are the results? Watch and wait seems crazy to me but I’ve been told it could not progress for years why treat it if you don’t need too? I wish everyone the best and appreciate your input. God Bless.

Ginger, Volunteer Mentor | @gingerw | Aug 24, 2021

In reply to @sylvia67 "Update; they just did IV flush on my kidneys, not dialysis thankfully Start chem tomorrow and..." + (show)

@sylvia67 Very glad to hear it was not dialysis, hope I didn't scare you with my comment!

Remember, as others have told me, that each person responds differently to treatment. There are guidelines that are followed, but our drs will closely watch things to "tweak" the situation to fit you best.

Being scared and concerned is only natural. It's all brand new for us. Do you have a support team around you, family of close friends you can lean on? Write down your feelings and thoughts can certainly help, too. It seems to take some of the power of those negative ideas away.

Let me know how you are doing?
Ginger

Colleen Young, Connect Director | @colleenyoung | Aug 24, 2021

In reply to @sylvia67 "Update; they just did IV flush on my kidneys, not dialysis thankfully Start chem tomorrow and..." + (show)

Thinking of you today, Sylvia. I hope the transfusion went without a hitch. All the best with today's chemo. I look forward to hearing from you when you feel up to giving us an update.

sylvia67 | @sylvia67 | Aug 23, 2021

Update; they just did IV flush on my kidneys, not dialysis thankfully
Start chem tomorrow and hopefully my kidneys can repair??
Today is blood transfusion for low red blood cells
I’m 53 year old female absolutely no other medical issues nor any take meds.
Scared for how my body will react to all this ….
Good luck everyone.

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