As I said before, August 2025 marks two full years that I’ve enjoyed the benefits from my trial of epcoritamab, a bispecific T-cell-engaging monoclonal antibody for my CLL. But the last remains of my chronic lymphocytic leukemia (CLL) have remained stubbornly persistent for about a year and a half. I have been in a complete remission (CR) with normal blood counts, normal physical exam, and all my lymph nodes shrunken back to normal size when imaged since February of 2024. That was only six months after starting the trial for my high-risk (del 17p, TP53 mutated, del 11q, complex karyotype, unmutated IGVH, NOTCH1, and more) relapsed CLL. This rapid response was reinforced when my testing for measurable residual disease (MRD) by next-generation sequencing (NGS), specifically clonoSEQ testing, showed only one or fewer clonal CLL cells per million in my peripheral blood and about 45 cells per million in the bone marrow. It seemed I was destined for a uMRD-6 remission.
But the rapid fall in tumor burden has not continued. A year and a half later, my CLL MRD testing in my bloodstream remains the same. So have my routine blood counts and scans. I am still in a complete remission with detected measurable residual disease by clonoSEQ at the level of less than one per million cells (dMRD-6). What’s new now is that the results are still unchanged through the end of July 2025. Four sequences were measured:
- One stayed the same at undetectable
- One stayed the same at less than one
- Two moved from one per million to less than one per million
So essentially stable. As far as I know, I am the only one in the trial who has achieved a CR without also reaching uMRD-6. So close, but not there.
I am not sure what benefit continuing to flog my T-cells with the bispecific antibody to kill my cancer cells will do.
I am also not sure what harm it might be doing.
I do know that my good B lymphocytes are missing in action as they are directly targeted by epcoritamab. I know my T lymphocyte subsets are low and that the ones that I do have are likely exhausted (and therefore ineffective) by two years of being called into action to kill all my B-cells, cancerous or not.
Not surprisingly, with no B-cells and iffy T-cell counts and activity, early data show infections are the leading cause of death in my trial.
I also know that once I go off the trial, it may be hard to restart epcoritamab “off label” as no bispecific is yet approved in CLL, should I need it again.
Psychologically, epcoritamab has been my security blanket. I feel I am doing something by staying in the trial, but am I? It was hard for me to stop my ibrutinib, but when I did, I did fine for years.
My experience with relapses helps predict the future. Once my CLL reached one per million cells in the blood after my CAR-T, I was staring at a new treatment choice in less than two years. That treatment was epcoritamab. Will it take off faster this time? The timing of when I need treatment must be nearly perfect, as I almost certainly will be looking to a clinical trial for knocking back my recurring clone. Will there be a degrader, a new BCL2 inhibitor, a dual inhibitor, or a combo trial that I could use when I need it?
Still, most bispecifics, when used for other lymphomas, are taken for a fixed duration such as two years, not forever.
I thought last month would have been when I stopped. But I stopped the cordyceps instead, on Dr. Danilov’s advice, with a plan to recheck my T-cells. Regardless, I will be surprised if I continue epcoritamab any longer.
Despite a rough take off with cytokine release syndrome (CRS) and adverse events over a rocky first two months, it has brought me two great years of a deep remission, and a chance for a long glide off therapy. I am very grateful for the trial and to the team that has cared for me, led by Dr. Danilov, trial nurse Alex, and GenMab for their flexibility and diligence in making this possible. I hope, but am uncertain, that others with CLL will be able to enjoy similar benefits—more on that in a future blog post here and at https://bkoffman.blogspot.com. Thanks for reading.
10 Responses
Doc,
Glad to hear you are still in a deep remission. I was hoping you could elaborate a little on the cryptic ending to your post sooner than your next update.
Why are you uncertain that others might enjoy similar benefits from this drug?
Jeff Z
Great blog. Thank you. Full of special terms I need to check… and learn.
I have just had my sixth obinutuzumab infusion and now continue until September 2026 with Venclyxto (I live nowadays in Finland).
My regular blood test values fluctuate; especially neutrophils and leukocytes. So I have to self administer zarxio injections to correct those values.
Maybe, an added complication, is that I have thalassemia b minor. It is extremely rare in Finland. I am a 77-yr-old white Caucasian Brit.
I wonder if thalassemia hinders my values during CLL treatment? This is a rhetorical question but on I ponder.
Once again thank you
Brian
I have followed you since my son was dx with CLL in 2012 at age 34. You are my hero! i wish you good health and I wish a cure for this elusive CLL.
Natslie
Good morning Dr.Koffman.
My name is Alan Justice and I am a currently practicing Internist in Macon Georgia.I appreciate your blog on CLL.I am currently in a watch and wait situation with my diagnosis.I have been practicing for 34 years in a private practice with 4 NPs.My senario is more SLL with mild lymphocytosis(20,000 Wbcs) and normal Hgb and platelets.I have been followed by Emory Winslet cancer centers.The watch and wait has caused intense anxiety about when is the appropiate time to treat.I was diagnosed about 2 years ago.I would appreciate any advise about trials etc.How do you handle the stress about your condition.Good luck and continue to do your amazing advise.God Bless.
Alan Justice MD.FACP
You are in an inspiration! Good luck with your difficult decision. Thanks for all you do for the CLL community.
Dr. Koffman – you have been an inspiration since my diagnosis 7 years ago. In that time I’ve learned more from the CLL Society site that I have from my own oncologist. Thanks for that & for your continual work on behalf of all of us in the “club”.
You are an inspiration for us all. Thank you for sharing!
Dr. Koffman, I realize this hasn’t been a trip that you would recommend to many, but you have been a great beacon of light since you and your bride started CLL Society. Didn’t realize that you had been taking the Cordyceps. Would be interested in hearing more at some later date and we can compare notes. All my best to you and your family during the upcoming holiday season that is fast approaching. From other CLL patients thank you for the gift you have given all of us thru the CLL Society. Take good care. All my best. Staying Strong Together.
I am so sorry, Dr Kaufman. I have followed your story since my dx in 2014. I’ve been on Acalabrutinib for a few years and all is well and stable for me (though my disease was “not so bad” at dx.)
I just write today to say thank you for all of the amazing work and I’m sure many personal sacrifices for basically becoming a “guinea pig”, not only in hopes of controlling your own disease, but also to further the knowledge of medicine, in hopes, I’m sure, of finding a cure.
You have given of yourself in so many ways, and I hope you know how much you are appreciated.
I have learned so much from the many offerings and weekly newsletters from the CLL Society, and having this expert information in my back pocket has helped me so much in discussions with my oncologist. And early on in my process I took your advice about finding an expert, even though I was under the care of an oncologist (who I have to say, in my opinion, was definitely not an expert in CLL.) Because of that advice I was able to get in to see Dr John Pagel, (2 days before he left Swedish!) who was on that list and was also highly recommended by another onc. Because of that visit I was able to start Acalabrutinub almost immediately, when my (now prior!) oncologist would not order. So, thank you again for the Society and your excellent tutelage!
You gave given so much for so many. May this next phase of your journey be successful. Thank you for sharing your process with us all! Bless you.
PS I am a retired Certified Oncology Nurse, so I appreciate the thanks you gave to your study nurses!
Thank you for continuing to share your story and journey.