← Return to Smoldering Myeloma: Coping with the emotional toll and acceptance

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My husband had an abnormal SPEP after a routine physical in August/September 2025, after retiring from 37 years as a federal employee. What timing! We were hoping for MGUS, but it turned out to be smoldering multiple myeloma. (SMM) Our initial hematologist repeated labs and did a bone marrow biopsy and assessed him to have low risk SMM. I looked at the results of his BM cytogenetics (I have a background working in cytogenetics) and other criteria and thought he fit intermediate to high risk SMM. We got an 2nd opinion with an MM specialist at Wash U/St. Louis and they confirmed he is intermediate to “on the cusp” of high risk SMM. If he would meet the Mayo criteria for high risk SMM, he could participate in a phase 3 clinical trial in St. Louis assessing whether Darzalex/dexamethasone vs. Darzalex + plus lenalidimide (Revlimid - which costs $18 K/month!) /dexamethasone are effective at stopping progression of SmM to active myeloma (or at least delaying progression). I am hoping he will eventually qualify for this clinical trial and get one of the already FDA approved drugs for active myeloma. The watching and waiting is so difficult for me - also would like to take action. In addition, it turns out my husband likely had been exposed, as a child, growing up in North St. Louis, to radioactive waste from the Manhattan project that was improperly stored near his childhood home next to the St. Louis airport. So I have a lot of anger that his SMM may have been caused by his exposure to this nuclear waste. We will most likely be filing a radiation exposure compensation act (RECA) lawsuit as a result of this unnecessary exposure to nuclear waste products. These were supposed to be our “golden years” where we get to travel and enjoy life. Instead, we have this sword hanging over our heads. And it was likely caused by exposure to nuclear waste products. So effing unfair! So we are in the “watchful waiting “ phase for now. I pray that he meets the criteria for this clinical trial so we can take action and hopefully delay and/or stop progression to active myeloma. And the clinical trial/study may also help others with SMM//MM in the future as well. So at least there’s that. My advice to others is to *definitely* get a 2nd opinion with a diagnosis of SMM/MM, as most regular hematologists do not see very many of these cases and do not have the expertise/experience that it requires to treat these difficult diagnoses - and also check online or ask your hematologist for info on clinical trials available near you. The International Myeloma Foundation (IMF) also has many online resources as well as support and information for patients and their caregivers.

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Replies to "My husband had an abnormal SPEP after a routine physical in August/September 2025, after retiring from..."

@ellenemm I lived ten miles from oak ridge, TN where the Abomb was developed. My dad worked there and brought whatever contaminants on his clothing home every day. To this day secret stuff happens there. I’ve noticed a cluster of MM in that area, not to mention everyone has hypothyroidism. Just bad luck through no fault of our own.