I was diagnosed with myeloma eight years ago. No symptoms, just picked up in an annual medical mostly due to low hemoglobin (117) m band count was 44. started on dexamethasone alone, dropped to 20 but soon started to rise. I was on track for an ASCT , was harvested but then upon testing found that I was 4;14 positive, so was not an ideal candidate for an ASCT.
I was fortune enough to be enrolled a clinical trial mostly using velcade quickly dropped down 0 myeloma count and was fortunate to remain there for over 48 months from the start of the clinical trial. Slipped out remission over a year ago and now am on revlimid, dex and cyclophosamide. Although initially disappointed that I did not reach a negative count, I am now at 4 for last few checks and will live with that.
I know that I will slip out of remission with revlimid but look forward to several drug combinations pomalidomide, carfilzomid, velcade sub q and any number of combinations with some of the new novel drugs. And I guess that I still have my stem cells stored so this could still be an option if deemed necessary.
I guess what I am trying to leave with this story is that when I was diagnosed the doctors said I only have 2-5 years. I am now working on nine years and feel that the future is even brighter than I have experienced over the last journey.