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Cycle 2, Dose 3 Day 5 Epcoritamab Trial for CLL (Chronic Lymphocytic Leukemia): 98.6°F; It’s Good to Have You Back Again

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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

Brian Koffman MDCM (retired) MS Ed (he, him, his)
Co-Founder, Executive VP, and Chief Medical Officer
CLL Society, Inc.

20 Responses

  1. Whew! I was getting worried about you for a while. Great to have you back Dr. Koffman!
    Curious though, how are your ALC numbers looking?

  2. Dr. Koffman,
    We are all relieved and glad to be hearing from you again. Albie did, and does, a great job in keeping those following informed, and we are appreciative. We are also encouraged always by your spirit and positive attitude throughout your CLL adventure. We truly are all in this together, and CLL Society in general, and your personal blog in particular, help us all to stay strong. We also, like you, continue to train our bodies to stay strong with us and for us. Our thoughts are with you as you continue to strengthen yourself for the joy that is coming in the many years ahead.

  3. Great to her from you in the first person, Brian! Onward toward more strength and stable, good health!

  4. Yay! Hallelujah! You’re back! I feel like I was almost holding my breath every day until you were back and okay! What a freakin’ epic CLL journey you have conquered! What an inspiration for being your own best advocate with the best CLL specialists on the planet. Every time you were at the end of the line you found another lifeline to crawl up and over the precipice to higher ground. Amazing. YOU. ARE. AMAZING! I love you and the beauteous Miss Patty! Keep going! xoxox

  5. Great to hear from you, and that your health is improving. Along with your sense of humour.
    In Europe, Keith’s record was retitled, 37c.

  6. So glad you are back and rebuilding fitness. You continue to inspire us! Thanks so much for all you are doing!!

  7. Thanks for the update. I assumed you were beginning to feel better when I saw your activity on another forum.

    I hope this is the magic bullet and thank you for going first, as is your personality.

    Get strong but don’t forget to rest too.

  8. Thank you for sharing your journey with us. I am no where near where you are in my journey (still in active observation). Yet to hear that you are optimistic and that treatment, although momentarily nasty, is worth it. You continue to be in my prayers.

  9. You’re the trail blazer for the rest of us in so many ways, and have actively worked for very many years now to improve all of our lives. We are all more grateful to you than we can say, and we are all wishing you well. Mary L.

  10. Good to hear you are doing better. Suzanne had told me that you experienced some issues. Hope your health will continur to improve. All the best Bärbel

  11. Keep fighting Dr Koffman – good to hear the side effects are gradually getting better. You are a trailblazer in therapy development, and we honor your courage and tenacity. Stay Strong


  12. Dr K. Thank you for your inspiration. My husband had high dose Interleukin-2 therapy for kidney cancer. Sounds like your cytokine storm. It was a difficult treatment. I hope the treatment has a great outcome. Thank you for sharing your journey to wellness. The road back is long but worth it!
    Maxine Sindledecker ( just finished one year limited duration Venclexta plus Gazyva)

  13. Hi Brian, Really happy to hear the direction of your latest activity – it’s a relief. Reminds me of the Leonard Cohen lines (which I am sure you know extremely well).
    “Ring the bells that still can ring
    Forget your perfect offering
    There is a crack, a crack in everything
    That’s how the light gets in”

    Warmest Regards,

    Steve Meyers

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