After only four months in my chronic lymphocytic leukemia clinical trial of epcoritamab, and only three months on the full-strength dose, I found out last week that I am not only in a complete remission, but also there was no measurable CLL in my peripheral blood done by flow cytometry, down to 1 in 10,000 cells (10-4).
That means my cancer cells were extremely susceptible to the experimental bispecific antibody due the rapid rate of decline to the point where they can no longer be detected.
It is hard to maintain my Zen approach to stay calm and underreact to this great news, when what I really want to do is dance on a tabletop and scream out that I have no detectable cancer cells in my blood stream.
But I’ll stay calm and reflect that all seven patients in Europe on a similar trial who were in a complete remission were also uMRD. So, while it was not unexpected, it was not guaranteed and was most a welcome result.
I will discuss with my doctor about next steps, probably testing the blood down to 1 in a million cells using ClonoSeq next generation sequencing. If that too is undetectable, then time to check the bone marrow. Not sure of the timing, but it’s all pretty great.
I did find out that the muscle aches and joint pains are quite common in other lymphoma patients on epcoritamab, so my hunch that the drug was the culprit is probably correct. That is small potatoes if my CLL is in a full and fast retreat.
I didn’t jump on tables and dance, but I did go the hottest place on earth (not the day I was there- it was actually freezing cold when I was there) and the lowest place in North America, namely Death Valley for an internet and cell phone free 3 days of hiking canyons, visiting a ghost town, playing chess and Clue, swimming in a spring fed pool, and not thinking one little bit about CLL for all 3 glorious days.
I was the first chronic lymphocytic leukemia patient in the trial. I understand now there is a long waiting list to enroll.
Stay strong; we are all in this together.
Dr. Brian Koffman MDCM (retired) MS Ed
Co-founder, Executive VP and Chief Medical Officer
CLL Society, Inc.