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Smoldering Myeloma: Coping with the emotional toll and acceptance
How scary it is living in a condition that I will have for the rest of my life. Not knowing if it will get worse, but also knowing it will never get better. Blood tests. PET scans. Bone marrows. Neuropathy. Oncologists. All waiting for the go ahead when it progresses. There is no cure for myeloma. Clinical trials through Mayo. So what has happened the last 2-3 years since diagnosis.
Nothing physically, but mentally it takes a toll. Dread having blood work. It’s pins and needles, literally as you wait for results from blood work. M proteins, Igg testing. Elp serum, CRAB criteria. So far it’s stably abnormal.
So I moved on now. Don’t have to linger about possibilities that may never occur. And if they do, I won’t be ready. No one is. The shock of cancer is so difficult to deal with. But I cant obsess over it. Won’t let it.
So, I thought I would share for now my story.
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Thank you for sharing this. When I was diagnosed with MGUS in June 2023 with Monoclonal protein 1.6 g/dl IgG lambda, i was told not to worry it only progresses 1% per year. By January 2024 it was 1.8 g/dl, January 2025 it was 2.2 g/dl and they ordered a bone marrow biopsy in April which presented 20-30% plasma cells, monoclonal protein and a free light chain ratio of less than 0.1 with lambda restriction. I am now in Smoldering Myeloma phase with 2 high risk markers. I had a PET/CT scan which showed some areas in both femurs and ordered a pelvic MRI September 15 which showed a 13 mm focal enhancement in my pubic bone and suggested retesting to see if it went away or increased. I am still waiting for results of the retest from two weeks ago.
At first I was full of anxiety and fear and remembered that I can choose to Forget Everything And Run or Face Everything And Rise. I chose to spend time with the people I love, do things I love to do and started limiting time and energy on things I can’t control…accepting that whatever will be- will be. I will cross that bridge when it arrives. As a “doer “ by nature, watching and waiting does not come easy to me. I want to obliterate the monoclonal cells in my blood and be free from it forever….but, I am told this will never go away and I am just hoping for the opportunity to stop it from progressing.
I send you strength of spirit as you navigate this journey. May this mantra give you comfort…
In this moment, I am safe.
My body is strong and holding me.
I do not need every answer right now — only enough light for the next step.
I am surrounded by love, even when I walk this part of the road quietly.
I trust the strength within me that has already carried me this far.
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18 Reactions@donna195 I am also SMM newly diagnosed in June. My next lab draws are Dec 22 with a phone conversation New Year’s Eve with the hematologist/oncologist. Hoping for the best for as long as possible.
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6 Reactions"...live through it all as normally as possible, and accommodate the fact that there will be plenty of abnormality."
This was from a guest essay this past summer in the Washington Post, by Kim Fellner. Ms. Fellner wrote these essays about "living with dying" and shared about their experience as I was just learning more about my diagnosis, also. Ms. Fellner died in July, but I carry her words, especially this quote, close to my heart.
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5 Reactions@donna195
thanks for the good wishes. I never experience MGUS, just Smoldering. I have hand and foot numbness. Had it for years. Neurologist was the one who actually started the process. Abnormal nerve study. Blood work. And there you go. M proteins, Lambda, well it was a shock. Numbness to pre-cancer. I went to Rochester to start one of their clinical trials. 1q21.3 and 15% plasma cells in bone marrow was the only alert. All other blood work was on the low end. So Mayo criteria determined that its low probability. My story continues, so does everyone else. A collision course to destinies we can not control, but live with day in and day out.
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4 Reactions@msh466
So I have SMM IGA lambda. Low m proteins, low ratio, normal chemistries, no bone lesions. Just the 1q21.3 abnormality and 20% plasma cells in bone marrow. Where it gets fuzzy is all the criteria needed to establish what is what. Mayo uses this, my doctor uses the old standard. 1q21.3 is a high indicator that this will progress, while Mayo doesn’t. This wait and see is difficult. My reasoning is if it went from MGUS to SMM. What’s stopping it to go to the next level?
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2 Reactions@msh466
I understand the frustration from not understanding the criteria. I just got my 10-31-25 follow up pelvic MRI results from 9-15-25. 8-15-25 showed on 13 mm focal enhancement and 10-31-25 showed 3 focal enhancements: 1- 5 x 8 mm, 2 -5 x 6 mm and 3- 4 x 4 mm. MyIgG lambda smm was high risk with 20-30 % plasma cells and 2.2 g/dl m spike and flc less than 0.1.
I have my next round of blood work December 2 and then next followup December 17.
Hoping that I am still watching and waiting even though i want to squash it while I am strong enough! I hope you are still in safe territory and that when the time comes you are prepared to put it in remission!
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2 Reactions@donna195 What about CRAB criteria? That’s the problem. So many variables. CBC. Chemistries. Ratios. IgG Levels. Kappa or lambda. ELP. Levels up, down the same. PET scans. Bone marrows. And the best you can hope for is it’s close to the same results as 6 months ago. Stable but abnormal. I just wish there were more intervention that can be initiated.
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4 Reactions@msh466 , me too!
I was diagnosed in June. My hematologist said one thing, I studied my numbers (I’m a RN) and saw a MM specialist a the city cancer center for a second opinion. One bone marrow biopsy later it confirmed SMM. It’s hard to get up the energy to figure things out on my own. My next blood draws are in December and yes, there is an anvil hanging above my head and I feel much like Wiley coyote, waiting for it to fall. But maybe it won’t. It is an internal battle indeed. In the meantime, I put as much good nutrition in my body as I can, exercise when I have the energy, prioritize my sleep, avoid stress (politics be damned), and do a little more to make things a little easier for me. Of course, practice leaning on my faith. The rest I’ll have to accept.
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3 Reactions@amberl99 I was given an MGUS diagnosis and about a year later a SMM diagnosis. No telling how long I had the MGUS, it was my nephrologist who pushed my case to get into a hematologist/oncologist. At the time of the SMM diagnosis, I was in the process of moving 800 miles away. Fortunately I got a referral to a wonderful Mayo Clinic trained hemo/once Dr, two hours away from my new city. My SMM morphed into active myeloma within a year. Apparently I am an overachiever, and this was very rare.
As you mentioned, so much of our disease is an internal battle. We strive for balance in our lives each day, never knowing what we might be feeling, never knowing ahead of time what our energy level might be, or how our system is reacting today to the same foods we have been eating. Do we make plans to do things, and then make sure our friends/family understand we might not be up to following through? For me, having an awesome medical team is really a great support, and I know I can lean on them to ask even the silliest of questions, and they'll answer!
Ginger
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