usedtobe's Journey with Multiple Myeloma

Patient: Multiple Myeloma

Patient Info: Prefer not to answer/not applicable/unsure, Diagnosed: almost 3 years ago, Male, Age: 76

  1. 1
    • usedtobe
    • Experience with Multiple Myeloma
    almost 2 years ago
    usedtobe's Avatar


    Drug or Chemo Therapy

    Diagnosed with Multiple Myeloma November, 2017. Initially 'smoldering', but free light chain test confirmed 'active MM'. Started chemo, had major negative reaction to Velcade, changed to ninlaro with revlimid. Went through 2 cycles of chemo, experienced significant loss of strength and endurance. Developed severe case of peripheral neuropathy [lower legs and hands]. Kept informing oncology team of deteriorating effects of chemo, and their advice was to 'just stay on prescribed treatment protocol'. Was still trying to run my business in the meantime, which was becoming more difficult as each day went by. 3 days into third chemo cycle, had trouble getting out of bed, managing stairs, etc. Called oncology team and told them I couldn't keep doing this. Stopped chemo January 6, 2018. Have not had any communication with oncologist since then. Getting blood work done every 2 months to see where RBC, WBC, platelet, 'free light chain' counts are. FLC count has always been above normal, but other 3 are still showing up within normal range. But, getting slow recovery from effects of chemo on legs and hands. Been a very active outdoors person, hiker, ski patroller for 25 years. Because of residual negative effects of chemo, doubt I will ever be a participant in these activities again. Don't know what the future holds, but if I'd continued chemo I would be either dead from it, or an invalid. Just my experience, so far.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree