August 2025 marks two years on the epcoritamab trial for my CLL. Since February 2024, blood tests have shown zero to one cancer cell per million white blood cells.
Excellent news, but the numbers have remained relatively unchanged for about a year and a half. The chronic lymphocytic leukemia cell count is a little higher in the marrow. Although I have had almost no side effects from the subcutaneous shots every four weeks (after some very tough weeks at the start), and the trial doesn’t require me to stop, I think it’s time to be grateful, declare victory or at least a prolonged ceasefire and quit the trial.
Epcoritamab has done a great job of cleaning up my cancer. My MRI scans are all totally normal. My blood counts are all totally normal. I am uMRD-4 but not uMRD-6. That means I am enjoying a complete remission with detectable, measurable disease by clonoSEQ using next-generation sequencing (NGS).
My absolute lymphocyte counts are low and stable. But they are not getting better. Or worse. Is my trial drug doing much good now? I don’t think so. And the bispecific antibody therapy is very immunosuppressive, so I’m betting it’s done all that it can, and it’s time to move on.
Soon, I will do a repeat clonoSEQ for MRD testing in the blood and maybe in the marrow and then decide for sure.
Follow me here and on my blog at https://bkoffman.blogspot.com, where my public advocacy in CLL began, for more details and updates on my CLL journey, as well as my thoughts and discussions with experts on CLL therapy as I move on to the next phase of my nearly two-decade-long personal journey to outsmart CLL.
Stay strong. We are all in this together
Brian
18 Responses
Congratulations Dr. Koffman. So happy to hear that you are doing well. You are an inspiration to us all.
Continued blessings to you.
Thank you very much for putting yourself as a pioneer in the fight against CLL. May you enjoy much needed health and long life.
Your CLL struggle has been long and REAL! You do deserve a break. Your body deserves a break! I would take as long of a vacation as I could. You can put your body and any old or new drugs back to work if needed. Call it retirement rather than a drug vacation. If your body needs more “money” later on you can put your body and any new drugs/procedures back to work then! Just my thoughts. Your body/psych might not be comfortable with this; you have to do what you can live with.
After almost 8 yrs on Ibrutinib alone after finishing the Captivate trial I had to come off it in March due to it causing Ventricular Tachycardia. Will be on a CLL drug vacation until my numbers or symptoms indicate disease progression. Hopefully it will not progress; but if it does, I will have you and others like you to thank for all the literal and proverbial trials you have gone through. There will be something out there to try. Thank you for all you do.
Just want to thank you for your inspiration, candor and willingness to share experience. You were instrumental in getting me to switch from chemo to Ibrutanib. Which I was able to teach my oncologist about.
Just so you know how your musings have rippled out into the community.
Brian, good fr you. You’ve put a lot of thought into this decision. You didn’t mention Dr. Danolov trying to talk you into continuing, so I surmise that he understands your decision.
You mentioned that perhaps it’s time to move on, does that mean a holiday?, allowing for you to return to epcoritamab or might you have the next thing in mind?
Enjoy you vaycay from treatment and make some new immunoglobins. I’m off acal for 9 months now, I’m wondering mine are doing. RON
Brian,
Congratulations on a very well navigated approach to your CLL!!
It’s inspiring.
Mike Green
Congratulations, Brian! This planet sure is a better place with you walking on it.
What do you do to track B-cell and immune recovery?
=seymour=
Headed down the same Epcoritimab path. While everyone’s experience will be their own, your observations are instructive. Thanks !
Thank you for all the info and inspiration. Starting my 9th year on Ibrutinib and it’s nice to know that there are alternatives if it stops working. Stay well and thanks again.
Best of luck, Brian!
What is your plan if an when MRD goes above uMRD4? How high above 4 will you go before doing some sort of treatment?
You can still repeat Epcoritamab because there’s no drug resistance to it possible, right?
=seymour=
So glad to hear you are doing so well. Your journey is a brave one and very inspiring for so many of us. Wishing you continued health.
Congrats, Brian!!!!
God Bless,
Pat
I’m reading a lot of comments about decisions to make when starting a treatment, but I found almost nothing like these when it comes to stopping treatment by the patient’s own decision.
In my case, since I’m thinking about taking a break, it would be interesting to read more about this topic—especially for those of us who have a complex cariotype and we’re concerned about a quick relapse or perhaps a more aggressive return , etc.
Thanks Dr and good luck with your decition
Congratulations Brian! Thanks for sharing your journey-it’s been a long one. It’s encouraging for those with a persistent CLL like yours. It shows that if one is aggressive in seeking out the best treatment options there is a chance of holding the beast back.
Dr K- thank you for paving the way for millions of us. Your practical sensible life mission is so inspiring and uplifting! I also tell myself that good enough is good enough.
Always rooting for you, Brian! You will make the right and educated decision for you, and I support you every step of the way. Thank you for all you do for our CLL / SLL Community.
Dr. K thank you for the update. Been a while since I got back on this site, thanks to other fun things in my life. Curios how your boss is doing these days. My hope is that Patty is hanging in there and doing her best to keep an eye on you. Off and on we have been yakking over the last 5 years and a few months before our fun with COVID. Truly appreciate all your information, been a big help. Especially when I had to head back to the hospital thanks to COVID and things going sideways, you answered the call. And I thank you. Hard to believe how fast and how far CLL Society has come. Will keep you updated on the other adventure I have been on, 12 months now clear. All my best and keep giving us the play by play, means the world to a lot of people.
Is epcoritamab still just on clinical trials?