Since the Kyprolis trial went bust last year, I’ve been: hospitalized for kidney failure complicated by pneumonia (early in Dec ’15), which heavy chemo finally beat down, then on Selinexor pills (which did little but make me more nauseous than nearly any previous treatment) and daratumumab (briefly) before the myeloma really began making a concerted effort to kill me in April and May. I was in and out of hospital several times, with greatly elevated M-spike and calcium levels, delirious at times, scaring relatives, hospital staff, and eventually myself with my ravings. The docs threw all sorts of chemo at me, including D-PACE, none of which was able to provide anything but short-term results. So I finally gave in to my oncologist’s long-time hint that I was due for a second stem-cell transplant, and entered the hospital AGAIN on May 31st.
The transplant team was able to use blood cells culled from my original SCT and frozen way back in 2006. (I still have a hard time believing those suckers were really on ice somewhere all this time, sitting patiently in the dark.) Didn’t suffer any more side effects than expected, so the time in hospital was only minimally horrible (fatigue, nausea, green diarrhea). Was discharged effectively before the end of June, and spent most of the next month recuperating at a sibling’s house. As of today, I am officially in partial remission, M-spike at 0.7, and most other blood counts in the normal or near-normal range. RBCs remain low so I’m tired most of the time. In mid-September, a little over 100 days post-SCT, I began weekly infusions of elotuzumab (Empliciti) with small doses of dex. This treatment appears to be holding my numbers steady for the time being, but is not so far ridding my body of the last traces of myeloma, as we’d hoped. But I’ve got some breathing room for the moment.