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Smoldering Myeloma: Coping with the emotional toll and acceptance

Posted by msh466 @msh466, 2 days ago

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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donna195 | @donna195 | 1 day ago

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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2 replies
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amberl99 | @amberl99 | 1 day ago
In reply to @donna195 "Thank you for sharing this. When I was diagnosed with MGUS in June 2023 with Monoclonal..." + (show)
Profile picture for donna195 @donna195

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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@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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aoifet | @aoifet | 1 day ago

"...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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msh466 | @msh466 | 23 hours ago
In reply to @donna195 "Thank you for sharing this. When I was diagnosed with MGUS in June 2023 with Monoclonal..." + (show)
Profile picture for donna195 @donna195

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.

Jump to this post

@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.

REPLY
1 reply
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msh466 | @msh466 | 6 hours ago
In reply to @msh466 "@donna195 thanks for the good wishes. I never experience MGUS, just Smoldering. I have hand and..." + (show)
Profile picture for msh466 @msh466

@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.

Jump to this post

@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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