I will soon be rescanned to see if my total of seven doses, with the last three being the full therapeutic dose of 48 mg of epcoritamab, has shrunken my lymph nodes.
In a different CLL trial, the median time to response was about two months, but that was with a more accelerated ramp-up than mine, so I am a little early in this recheck, but still looking forward to seeing my results.
In that same trial, more than half of the responders who achieved a complete response took, on average, a little more than three months before all their lymph nodes and organs were shrunk to normal size. It is usually defined as equal to or less than 1.5 cm in maximum diameter for lymph nodes.
Everyone’s’ results will differ. I will share mine, good or bad, when available. But understand, we will all respond differently, so if considering epcoritamab, decide based on your circumstances.
On another note, my unpleasant cytokine release syndrome (CRS) symptoms have essentially all disappeared. It was certainly not fun, but not all that bad, at least in retrospect.
More on iwCLL in Boston in another post, but I also wanted to share the other good news is that by eating a ton of fish and veggies in Boston plus something definitely off my diet, a few bowls of Boston clam “chowda,” I am regaining the weight I lost.
Stay strong; we are all in this together.