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I am only 1.5 years in, and I am sure my opinions matter mostly to those with similar MM characteristics that have less time than myself.
I find it very informative to read about everyone's journey with myeloma. We all have different presentations, and we all respond differently to different treatments. One day from diagnosis or 20 years from diagnosis.
That is true Donna, so many perspectives and situations to ponder.
For me, it depends. I know MGUS and SMM are issues, but if one person has had 10 years of MGUS, I don't consider that the same as full blown MM 10 years after diagnose. It also depends on what stage they were in at diagnosis and whether they were standard or high risk. I guess I look for those that have a similar type of MM and the treatments they've had more than overall remission or survival rates......although those are nice to lnow too!
I am 5+ years from diagnosis. Just had CAR-T cell therapy in March with great response and bone marrow biopsy negative. I’m in a clinical trial now with elranatamab to augment the T cells. I feel great although my ANC today is low and had forgo treatment until next week. Still feeling well and thinking positive for many more years of life.
Every person's experience with myeloma matters, regardless of how long they've been living with it. While those with longer experience may have valuable insights, early experiences are equally important since the first year after diagnosis and initial treatment is particularly significant for understanding treatment Show Full Answer
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