It has been over 3 years since I last updated this blog. Fortunately, I have remained in remission from Multiple Myeloma (MM) for all this time. I am an extremely lucky guy to have stayed in remission for more than 11 years. It's more than I could have possibly hoped for. However, all good things must come to an end.
Over the past 6 months, I have noticed a steady deterioration in my blood test results. In August, I got my first sobering hint of what was to come when my electrophoresis results indicated the dreaded "M-spike detected", which meant that there was now monoclonal protein in my blood. I then realized that the party was over. 🥳
As is my wont, I started researching Relapsed/Refractory MM (RRMM) to see what the preferred treatment options are after the first relapse. I found that many oncologists are recommending a regimen using one of the newer drugs, Daratumumab (Dara). A lot of the clinical trials to date have shown very promising results with Dara.
I had an appointment with Dr. Richardson yesterday. While I haven't actually relapsed yet, I was confident that he would want to start some treatment soon, as he likes to hit things hard up front with everything he's got.
Based on my research, I felt that it would be likely that he would recommend a treatment option containing Dara. I wasn't disappointed, but to my surprise, he offered to enroll me in a clinical trial with a new drug, Mesigdomide (try saying that quickly 5 times), coupled with Dara and dexamethasone (dex). This is an early Phase 2 clinical trial, so there aren't any results available yet.
He also offered me an option to enlist in another clinical trial. That one involves Ixazomib (Ninlaro), along with pomalidomide (similar to Revlimid) and dex. This was a blast from the past because Ninlaro was the drug I took in my initial clinical trial back in 2011! It has subsequently been approved by the FDA and is now a standard frontline MM treatment option.
I have to reflect on how fortunate I am to be a patient at Dana Farber and have the world-renowned Paul Richardson as my oncologist. Where else would I be able to walk into my doctor's office and be offered on the spot two state-of-the-art clinical trials to choose from? I'm glad I don't live in Alabama.
After careful consideration, I decided that I wanted to join the first option. I spoke with the nurse today and I'll be making an appointment soon for pre-screening and signing consent forms. I asked her how the results have been to date. While detailed results are closely guarded until ready for publication, she said that her observations were that patients were responding very well to this protocol. That's encouraging!
There is one issue, however. The enrollment window for this trial closes at the end of October. If I am not clinically in relapse by then, I won't be eligible for this trial! So I'm in the uncomfortable position of hoping I relapse by then! Is that sick or what?
I just got yesterday's blood tests back today, and I don't think there is much doubt that I will be clinically relapsed very soon. One relapse criterion is that my involved (Kappa) free light chain (FLC) has to increase by 100 mg/L over its normal value. Here is a chart of this over the last 2 years:
It reminds me of how I slipped into my first clinical trial in 2011. Someone had already signed up for the spot that Dana Farber had, but he had backed out the day before. They would have lost that spot to another cancer facility, but all they had reported was his initials, which happened to be WO. Since I had the same initials, I was able to take his place. the rest is history!
I remain optimistic and upbeat about this. Those of you who know me know that I respond to a situation like this as a problem to be solved and a challenge to be dealt with, not to wring my hands and say "Woe is me!".
I won't wait another 3 years to update this blog. You should hear from me soon!
