After seven weeks of cytokine release (CRS) and way too many steroids, I have finally gone almost four days with no fever without the antipyretic benefits of Tylenol or steroids. The only lingering mischief from my excessive cytokines, the inflammatory enzymes triggered by epcoritamab, a bispecific T cell engager (BITE), is that I still have night sweats that keep me awake, and I am still achy and tired. And even that is slowly improving.
Overall, I feel pretty darn good.
The inflammation was expected. CRS has been observed in 100% of CLL / SLL patients, myself included. Mine was only Grade 1, meaning fever with or without symptoms, but oxygen saturation and blood pressure have been okay. Low-grade CRS has been the case in the few prior CLL / SLL patients. What was unexpected was its persistence. Repeated episodes of cytokine storm are rare in the trial, about 16%. I have now had some CRS for four weeks running.
CRS probably means the therapy is working, and the inflammation is the side product of the dirty work of killing a systemic cancer. My inflammatory blood markers are still sky-high.
The decimation of the CLL can continue without CRS. There is no strict correlation between the amount of CRS and the amount of response. The ultimate goal is an ongoing deep response with no side effects, including CRS.
Maybe the worst is finally in the rearview mirror. 98.6°F, it’s good to have you back again.
I am working very hard with my trainer and walking daily to rebuild all the muscle fitness I lost in 7 weeks of inflammation, steroids, and bed rest. Deconditioning is fast and easy; reconditioning my body will be slower and more challenging. But so worth it.
Stay strong; we are all on this together.
Brian Koffman MDCM (retired) MS Ed (he, him, his)
Co-Founder, Executive VP, and Chief Medical Officer
CLL Society, Inc.