Brian has asked me, again, to update you on his progress with his epcoritamab trial. Until Monday, Brian had a fever every day. He wasn’t on steroids since Sept. 5. That was the date of his first full-strength dose of 48 mg of epcoritamab for his CLL (chronic lymphocytic leukemia).
Finally, on Monday, he woke with his temperature back to normal, and it stayed below 99 degrees all day with no help from steroids or Tylenol. He is not 100% back to normal as he has been weakened by everything his body has endured over the last few weeks between the CRS (cytokine release syndrome) and the steroids to control the CRS. But he is starting to see the path of recovery, and the worst may really be over this time.
Dr. Danilov, being the good physician that he is, is doing a full workup for infection. Brian’s thoughts are that he doesn’t have any symptoms that couldn’t be explained by his CRS (Cytokine Release Syndrome), so infection is unlikely.
In the meantime, he hopes to be recovered enough to blog more soon, so stay tuned.
Stay healthy and strong.
Albie Suozzi
CLL Society
11 Responses
Thank you so much Albie! We were concerned at the lack of posts. Praying for a continued recovery.
Thanks so much for the update – it was getting to be a long time between posts and I was worried. Brian is in our thoughts and hearts daily, and we look forward to the recap of his “adventures” when he has put it all behind him. His perspective on these choices and treatments in always invaluable to us and we appreciate him so much. Thanks for being the messenger, Albie.
Thinking of you. You are a beacon for us all. Hope you will soon see real progress. Thanks for all you are doing for the CLL community.
Hoping that his symptoms mean a stellar response to treatment! Wishing Brian a swift and complete recovery, and easier days ahead.
Brian – Thinking of you and hoping the worse is really behind you now. Thank you for helping lead the way for the rest of us and keeping us all informed of your journey.
Brian, I’m really sorry that you’re going through this. Having the CLL Society to turn to for information has been immensely helpful to me (and many others) since my diagnosis, thank you for that.
Hang in there!
Dr Koffman is our Moses. I read every word and send prayers daily. Hoping for good results!
Appreciate the update, Dr. Koffman is always on my mind. Wishing you strength to endure the fight, we are all, indeed, in this together.
Alvie! Many thank for the update. I was counting the days.
So glad to know Dr Brian is on the mend.
Our love and best wishes to him.
Brian, I hope your days continue to get brighter. Many well wishes, prayers and good thoughts for you…and your fabulous caregiver Queen Patty!
You are our resident hero for oh so many reasons.
1. You are an amazing husband and farther
2. You created all of this in your mind and then you made The CLL Society happen! I watched you! You build something incredible that has touched and changed so many lives.
3. Your personal CLL journey has been one of finding the best CLL specialists an then advocating for yourself. You sometimes took novel approaches to things. You were creative and brave and forged a path for others to follow.
4. You love your CLL family and you come to our groups and you care about us.
You are a magnificent human being and I am so proud to be your friend. Keep Going! xoox