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Cycle 1, 2nd Dose, Day 2 of my CLL Trial with Epcoritamab

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There is almost nothing to report, which is good. My hemoglobin is still slowly dropping, but my platelets have stabilized, and that was my bigger concern. Lymphocytes were back to where they were when I started, but these were all drawn before I received my second dose of epcoritamab, so that was to be expected. My blood chemistries are all good, except my phosphate dropped again after the treatment. Huh? EKG, BP, pulse oximetry, and temperature are all good, which should grease the wheels for a quick trip home tomorrow.

Happy to report that I also passed my neurological assessment again with flying colors. No ICANS (neurotoxicity).

As to the storms, there was no evidence of cytokines causing trouble in my blood other than some signs of inflammation with a rising CPK and metamyelocytes seen in very low numbers in my peripheral blood. Maybe the drug is stirring things up with the chronic lymphocytic leukemia in my marrow, even at a small dose.

Not much of a tropical storm either, though Dr. Danilov was without power last night for a few hours. We recorded over 4″ of rain and had some high wind gusts, but no flooding or leaks, and none of the deck furniture was blown into our pool. We did move furniture and pool toys out of harm’s way the night before.

BTW, if you didn’t already know, hospitals are unhealthy places. I had recorded only 37 steps the whole day until I grabbed my IV pole and did some fast loops around the 5th floor. I ended the day with > 3,000 steps, which is still well less than half my usual total. And forget sleeping. I refused my midnight and 5 AM blood draws for tonight. On the positive side, the vegan food wasn’t bad, and I did get to meditate. Patty and Ben visited, which was the best.

I will be home tomorrow with the easy first half of the ramp-up to the therapeutic CLL dose behind me. I can’t wait to eat home cooking, sleep in my bed, walk in nature, and swim in my backyard.

Stay strong; we are all in this together.

Brian

8 Responses

  1. Dear Brian,
    Steve & I are cheering you on and appreciate your CLL Society article about treating early and this interesting blog post. Your communications are always so clear and concise. Happy Patty and Ben were able to visit you and alleviate the hospital boredom.
    I’m holding my own and will always be thankful for the CLL Society. Your motto “ We are in this together” always brings me comfort.
    Cindy Delesie

  2. thrilled to read the uneventful report! enjoy your time at home! i was always a hallway lap ‘runner’ myself during confinements. in nature is so much better but we do what we can….when we can. all the best!

  3. Brian sounds like it is going OK so far. Hope it continues. There are thousands of us making this journey with you. We appreciate all you have done for us.
    Doug

  4. Wait… you can refuse blood draws?? Being woken up for blood draws in the hospital is the worst. I will try this next time.

  5. Dear Dr. Brian,
    I am following you along this journey, since you are my blood brother and my mentor. My next treatment off of ibrutinib will be coming as soon as the medical team at NIH tell me it is time. With two markers showing resistance to the drug, I am waiting for the pin to drop. LOL.

    You, my brother, are an inspiration to me. I have also come to the realization that I will be fighting this cancer and trying to manage it the rest of my life. It sure beats the alternative!

    Take care of yourself, blog, and know that you have many who are learning from every word you post. You are loved, respected, and admired for your courage.

    Love & Gratitude,
    Dr. La Verne

  6. Glad to hear it has been without extreme consequences so far. Thank you for taking us with you on this journey. You do so much for so many!

  7. Thank you so much for sharing your journey🙏 this is an inspiration to us all. I just started treatment after 6 years W&W. Zanubrutinib 160mg 2 times a day. I feel better like I can make it through the day with out extreme fatigue😊

  8. Thank you for all you have done for all of us in the CLL community. I have learned so much from the CLL Society and it gives me great hope on my CLL journey. I’ve been on Ibrutinib now for 8 years. Doing well- but it’s so helpful to know what other treatments are available if I need them. Good luck to you.

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