Be Careful What You Wish For!
Brian reached out to me this morning and asked that I update you on his experience with his first full dose of epcoritamab, as he was not up to writing it himself. And folks, he was not sounding upbeat on the phone either. In fact, in his words, not mine, he said he was feeling “pretty crappy!”
About 12 hours after receiving his first full dose, and just an hour or so after his prior more upbeat post and even with 100 mg of prednisone aboard, in the early morning hours, he was experiencing a fever of 38.4, chills, muscle pain, nausea, diarrhea, flushing, dry cough and a pulse rate of 105. Plus, he has had no sleep for two days. However, on a positive note, his blood pressure and oxygen saturation are good. That makes for Grade 1 CRS.
Oh, and those nasty hiccups have receded thanks to the change in steroids to prednisone. He’s unsure if this means another night in the hospital and if these symptoms may mean he may have to have his second round of the full dose of 48 mg of epcoritamab next week in the hospital instead of as an outpatient. He is disappointed with both possibilities, as he wants to return to his regular schedule and sleep in his bed, where they don’t wake you every hour or two all night. We will have to wait and see what his trial doctor and the hospital team say about that.
This turn of events is not unexpected. Almost 100% of patients get some CRS. Sadly, the correlation between CRS and efficacy is not that strong, but it’s still a good sign that his immune system is fired up.
If you remember, in his last blog entry, he said, “My nervous side now worries that I haven’t gotten sick enough to know that the EPCOR is working on my CLL. But I did have a mild reaction last week, which is encouraging in a perverse way.” Oh Brian, be careful what you wish for!
Let’s hope that all these side effects are due to the epcoritamab doing its job and killing off his CLL cells, and all these “crappy” side effects soon disappear!
Stay strong and take care of yourself,
Albie Suozzi
CLL Society
6 Responses
Standing with you in spirit, Brian. Stay the course and show us how to properly dance with the CLL / SLL Bear and accompanying new treatments. Thanks for the update, Albie.
Brian,
So sorry you are having such pain. Hope it means the CLL is under atack and will recede. Thousands of us are so appreciative for what you have done and your openness in sharing this experience, especially us that may find ourselves going through similar treatment.
You are in good hands and they will get your through this!
Doug
Thank you for the updates! We are all cheering for a fabulous response and deep remission. Hope you get some sleep and feel better soon!
You are a rock star Brian. I could never go through what you are doing and not sure if I could go through another clinical trial after 5 years traveling from Virginia to Ohio in my first one. I believe I’m I am speaking for all of us with CLL in how much we appreciate and respect all you do for not only yourself but for us all. I hope you are getting through the worst of this and you are feeling better very soon. Stay strong, we are indeed All in This Together
I don’t know what to say that doesn’t sound so cliche. Just know many people care about you, are extremely grateful to you, and wish you a successful response to your treatment. I’m so sorry to hear of your feeling so shitty during the last update Sept 6 and sure hope that rough time is behind you. Our support group meets tonight and we’ll honor you and your brave journey. I hope you feel the positive vibes, love, and prayers coming from Cincinnati.
i know you wanted a strong response and i’m glad you are getting one since it was your wish! as difficult as it sounds ‘it could always be worse’ and i have faith you’ll pull thru strongly. you are one tough cookie! im saddened to see that the correlation between strength of crs and efficicacy is not that strong. did not release this. did you? so many have you in their prayers. add one more to the list! looking forward to reading future posts….soon