[scarlet65]

Diagnosed with smoldering myeloma

by scarlet65 on Sat Jun 22, 2013 4:48 pm

My husband was diagnosed with smoldering myeloma in Nov., 2012. He was diagnosed with MGUS about five years before that. He sees an oncologist every four months for monitoring. I know he's to watch for bone pain, but he just doesn't feel well and is tired much of the time. I haven't seen anything about these types of symptoms in what I've read about SMM, but is this possibly related to the SMM?

[Ron Harvot]

Re: Diagnosed with smoldering myeloma

by Ron Harvot on Wed Jul 03, 2013 11:22 pm

Fatigue is a symptom and is usually related to anemia. What did his most recent blood work show with respect to HGB and HCT and WBC?

[Mary T]

Re: Diagnosed with smoldering myeloma

by Mary T on Thu Jul 04, 2013 12:53 pm

Hello Scarlett,
I've been smoldering since 2007 and anemic since diagnosed. Over time, fatigue has increased. I also developed back,neck, and rib pain occurring intermittently, but over the last year more often present than not. I have developed other symptoms such as severe hearing loss in my right ear and numbness and burning occurring often all over my body.

I have seen all appropriate specialists for symptoms. My labs are stable, and I am scanned every 6 months. Results keep me in the smoldering category as risk/benefit ratio still keeps treatment at bay. I do have Aridea infusion every 3 months, down from monthly. I take valcyclovir to keep shingles away and I would have your husband ask his Dr to start it if he's has not. I did get shingles and not fun.

So yes, can have symptoms when smoldering.

I attended a chronic pain program and my biggest lesson learned is pacing to manage symptoms.
I don't find it easy to do with working a stressful job and managing family life including being involved in my elderly father's care. Acceptance that I don't bounce like I use to is hard.
But I do treasure this time of smoldering and am working on myself to prioritize and learn to pace.

God bless all with active and smoldering myeloma and the MGUS folks. All the best to you and your husband.

[scarlet65]

Re: Diagnosed with smoldering myeloma

by scarlet65 on Thu Jul 04, 2013 4:29 pm

Thank you both for answering. At this time, he is not anemic. He just wears out quickly. He has neuropathy without pain in the feet; neurologist says this isn't multiple myeloma related, but I wonder. He has frequent headaches from arthritis in cervical vertebrae, as diagnosed by pain management specialist. Is now having bloodwork every 4 months for oncologist. He really doesn't feel well most of the time. Again, I appreciate your caring and God bless you, too.