Smoldering Myeloma: Coping with the emotional toll and acceptance

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.

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.

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.

@amberl99
I have had SMM High risk for nearly 5 years. I took revlimid for the first 3 years, 3 weeks on and one week off, plus dexamethasone 40 mg once a week for a year. Happy to say the SMM has not progressed. Yes, I have blood work done every 3 or 4 months but all is well. Keep the faith

@tominga I’m so glad that you posted. Welcome to Mayo Clinic’s Connect.
I believe that MGUS and Smoldering MM are particularly frustrating because it’s as though we can see Darth Vader lurking, but we find ourselves without a light saber with which to defend ourselves.
I think it’s important to remember that with watchful waiting, we are taking measures to ensure that we stay diligent against multiple myeloma and other blood disorders. Thanks for your testimony and support.
I hope you stay engaged on the forum and let us know how you’re doing. Will you?