Doing Great Two Years on CLL Epcoritamab Trial: Time to Stop?

 August 2025 marks two years on the epcoritamab trial for my CLL. Since Feb 2024, blood tests show zero to one cancer cell per million white blood cells.

Very good news, but the numbers really haven’t moved in about a year and a half. The chronic lymphocytic leukemia cell count is a little higher in the marrow. Although I have had almost no side effects from the subcutaneous shots every four weeks (after some very tough weeks at the start), and the trial doesn’t require me to stop, I am thinking it’s time to be grateful, declare victory or at least a prolonged ceasefire and quit the trial.

Epcoritamab has a done a great job of cleaning up my cancer. My MRI scans are all totally normal. My blood counts are all totally normal. I am uMRD^-4 but not uMRD^-6. That means I am enjoying a complete remission with detectable measurable disease by clonoSEQ using next generation sequencing (NGS). 

My absolute lymphocyte counts are low and stable. But they are not getting better. Or worse. Is my trial drug doing much good now? I don’t think so. And the bispecific antibody therapy is very immunosuppressive, so I’m betting it’s done all that it can and it’s time to move on.

Soon I will do a repeat clonoSEQ  for MRD testing in the blood and maybe in the marrow and then decide for sure.

Expect an uptick in my posting here on my blog where my public advocacy in CLL began Watch for more details and updates of my CLL journey, plus my thoughts and discussions with experts on CLL therapy as I move onto to the next phase of my almost two decade personal journey trying to outsmart CLL.

Stay strong. We are all in this together

Brian