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Smoldering Myeloma: Coping with the emotional toll and acceptance
Blood Cancers & Disorders | Last Active: Nov 19, 2025 | Replies (18)Comment receiving replies
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.
Replies to "I was diagnosed in June. My hematologist said one thing, I studied my numbers (I’m a..."
@amberl99
Try to relax, pray and know God’s on your side. I have been smoldering since 2014. I went through the bone marrow biopsy and the many, many blood draws. I see my oncologist once a year and have my blood drawn every six months now. Here’s praying everything works out for you too.
@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
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@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