Does smoldering multiple myeloma or myeloma cause skin problems
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@treinbold You pose an interesting question. Here is an article that may help you understand a bit more about skin concerns when we are dealing with MGUS or multiple myeloma. Our immune system gets pretty active, and often not in a good way!
For many years I have dealt with skin cancers, rashes, bruising, etc. so for me, it is difficult to associate things strictly with myeloma. I am curious what skin changes you have seen, and how you might be dealing with them? Recently I bought some arm sleeves to cover the worst of my bruising and discoloration.
Thank you, I have never had problems with my skin until the last few months, my onocologist referred me to dermatologist, the dermatologist said it was atopic dermatitis, so he prescribed two different ointments, it didn’t not help. I went back and they did a skin biopsy, still waiting for results.
This post is a flashback from when my husband who had been underdiagnosed by his unfortunately, inept, self-reported MM expert, hematologist / oncologist. Steve was diagnosed with MGUS in late 2017 although no baseline bone marrow biopsy, PET-CT or 24 hour urine test were conducted, just the relevant labs. Sadly, I didn't know then what I do now. We trusted in the expert Dr. Raymond Thertulian.
What ensued were rashes that itched horribly for him. We went to the "Expert" he said there were no such symptoms for MGUS. We went to an allergist, internist, and dermatologist and no one could explain it.
The sad part is he probably had MGUS for many years prior and he had now morphed into Smoldering Myeloma and we had NO clue due to the under diagnosis. When you're told you have a 1% chance per year and we'll watch the labs, you figure, "Okay."
Then Steve was diagnosed with Stage 3, High Risk MM on 10/20/21 and the remaining story is a short, but complex and horrible one as he passed on 7/24/22.
That distressing rash went on until we finally found a dermatologist that prescribed betamethasone which was the only topical steroid that touched his discomfort. The rash eventually passed. Since no one could identify the cause of his never-before-had eczema, or dermatitis or hives. They all had a different diagnosis, but none had the correct one. We still just thought it was supposedly, symptomless MGUS.
Now that I was personally diagnosed with MGUS on 2/15/23 my knowledge has come full circle. I pushed for the BMB, PET-CT, 24 hour urine and even a bone density scan. I know where I'm at in the numbers and at baseline.
I am on a whole-food, plant-based diet which is my preferred way of eating and part of a study being conducted at Memorial Sloan Kettering in NYC under the guidance of Dr. Urvi Shah.
For now, I have my NC local and truly knowledgeable Hematologist / Oncologist (not the one that under-diagnosed Steve), then I have my MM expert, study doctor in NYC and I have also consulted with a very wise researcher and MM expert in Boston.
That's all I got at this breath. Hope that might have helped some.
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@treinbold are you on treatment, like immunotherapy?
I am not any treatment, I see the oncologist in November, I have a list of questions for him, hopefully I get answers. I have a follow up appointment this Friday regarding the skin biopsy.
Any update on the skin biopsy?
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