I want to start this post with an apology and a correction. In my penultimate post on April 24, I worried that the apparent M-spike in the Cycle 5 serum electrophoresis results on April 19 of 0.13 had slightly increased over the last several cycles, even though they ascribed the faint spike as probably due to the Dara treatment. However, what I didn't realize when they sent me home because of my cold that day is that they retested it again on April 26, which I hadn't seen.
I started Cycle 7 of the trial at Dana Farber last Thursday. The nursing team told me that my latest results showed no measurable M-spike, which confused me. When I got home, I rechecked the most recent Cycle 5 test results, and sure enough, the electrophoresis result from April 26 showed a "faint M-spike that can't be quantitated. That's great news! My earlier concerns about the slight increase in the faint M-spike have been allayed.
I just got all the Cycle 6 test results back from my May 23 visit. The results are the same as last cycle: the free light chain ratio is still normal, no sign of an M-spike in the urine, and only a faint M-spike in the serum electrophoresis that can't be quantitated. I have been doing extremely well on this clinical trial, and I seem to have achieved a complete remission! Yay!! Thank you, Paul!
Despite my great reaction to the clinical trial, I do suffer from some treatment-related deficiencies, such as low white blood cell count, low red blood cell counts, and low platelets. This could explain why I am constantly fighting a cold.
Here is a graph of how my platelet count has been trending lately:
Low platelets can lead to excessive bleeding and a condition called "purpura", which appears as purple bloches on the skin. Lately, I have these blotches on both forearms:
I got my monthly IViG infusion on my last visit, which should help my platelet count. I don't think this is a serious problem, but hopefully these blotches will disappear sometime soon.
From now on, my schedule changes. I will only go in for treatment once every 28-day cycle instead of twice. My Mezigdomide schedule also changes from one week on, one week off to three weeks on, one week off. I will only get the Daratumumab injection once rather than twice per cycle, and I will still keep taking the dexamethasone every week. The plan is to stay on this new schedule indefinitely, as long as I keep responding to the treatment.
On Monday, I leave for my eagerly-anticipated Canadian Rockies train trip and visit to Brian and family, where I'll spend Father's Day and his 51st birthday. I return home on June 18. If I can get rid of this lingering cold, it should be even more fun.
