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February 2
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Answer Summary

Members responded to concerns about a husband with SMM and AL Amyloidosis sleeping excessively during weekly treatment, with many... Read more

Members responded to concerns about a husband with SMM and AL Amyloidosis sleeping excessively during weekly treatment, with many acknowledging that extreme fatigue is a primary and expected side effect of his intensive chemotherapy protocol and the diseases themselves. Several members shared practical suggestions including checking B12 levels (which can cause critical fatigue if deficient), monitoring calcium levels (high calcium causes excessive sleepiness), evaluating thyroid function, and considering a sleep study, while one member emphasized the importance of staying active, hydrated, and supplemented with vitamins despite the exhaustion. A recurring theme was encouragement and validation that the fatigue, while distressing for such an active person, is a normal part of the treatment journey and typically improves once therapy is completed.

A MyMyelomaTeam Member

Hi Bedebaby, it could be critical low B12. I was like that and it got so bad I nodded out while driving. I had blood work and my B12 was critical low. I got a shot and started taking it everyday and that worked. Ask the doctor if that could be the cause and they will add it to the blood work. Here is Critical Low B12 Symptoms & Dangers from the internet.
Neurological Damage: Tingling, numbness in hands/feet, loss of balance, walking difficulties, and potential irreversible nerve damage.
Cognitive & Psychological Changes: Confusion, memory loss, dementia-like symptoms, irritability, and psychosis.
Severe Anemia: Extreme fatigue, weakness, dizziness, and shortness of breath.
Physical Symptoms: Smooth, sore, red tongue (glossitis), diarrhea, and weight loss.
Long-term Risks: If untreated, this can lead to severe cardiovascular issues,, and permanent cognitive or mobility issues.
Hope things get better, keep us posted.

February 2 (edited)
A MyMyelomaTeam Member

I don't know. I was diagnosed in 2008, and in about 2010, I went into remission and was off chemo drugs. Last fall, my Oncologist pronounced me CURED, not my word. Myeloma left its scars, knees, back, and neuropathy, but I feel pretty good for 84 years. I didn't think about it much until I happened on this site and read entries and remembered the dark feeling of impending doom. I don't have that feeling anymore. I'm back in the sunshine now.

February 10
A MyMyelomaTeam Member

@A MyMyelomaTeam Member,
What type of MM did you have? Notice, I said did, not have. I pray you are cured!
Paula🌹

February 7 (edited)
A MyMyelomaTeam Member

I suggest you talk to his doctor.

February 2
A MyMyelomaTeam Member

That is wonderful Leslie!! More Power to YOU!!

March 19

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