After only three full-strength doses of 48 mg of the bispecific antibody epcoritamab, I am thrilled to report that essentially all my enlarged lymph nodes have shrunk back to normal according to my MRI scans on August 11, 2023. I am very close to complete remission, with only one node still greater than 1.5 cm in its longest diameter.
This is terrific news, especially with my response coming so quickly. This rapid and significant shrinking of my tumor burden bodes well for a deepening response going forward. The speed and depth of response have proven predictive of improved duration of response (DOR) and progression-free survival (PFS) in other CLL treatments. There is good reason to believe the same will be true for this immunotherapy. The odds are good (not certain, but good) that my present trajectory will continue and that the ongoing treatments will drive my chronic lymphocytic leukemia (CLL) to such low levels that I will enjoy a long and deep remission.
I do not, however, believe for a minute that epcoritamab will wipe out every last CLL cell or cure me. Still, a multiyear period of no significant disease is possible and would be enough for me.
I don’t want to get too far ahead of myself. I don’t want to overact. Stay Zen. Everything can and will eventually change.
I am, after all, the first patient in this trial, the one who is the furthest along in this protocol. The future is never clear, but continuing good news is not only possible now but likely. There are no guarantees, but this was about as good a result as I could have hoped for.
Moreover, some worrisome lung changes seen on my last MRI that concerned me have entirely disappeared. Glad they are all gone. One less unpleasant thing to have to contemplate and try to stay calm about and ignore while waiting patiently for months to see results.
My lab tests were also mostly normal, including my formerly sky-high inflammatory marker, CRP, which has fallen back from 160 to a normal range of <5.
It’s not all perfect. I have mild anemia, my antibody levels are low (this is to be expected with any anti-CD20 antibody therapy), and my platelets are too high. Still, I am not going to worry about any of this.
More good news. I am now 36 hours post my latest dose, which is my 4th full-strength dose and my 7th dose overall, and other than some mild fatigue, I have no symptoms, including no signs of recurrent cytokine release syndrome (CRS). Boy, that would be good to have that gone, too.
So, strong response, CRS fading, and labs close to normal. Pretty sweet. I am gaining my lost weight; I am back to about 90% of the dumbbells I used in my weight training before starting the trial, restarting my intermittent fasting, and walking 7,000 steps daily.
Was all the unpleasantries of the last two months worth it? You bet. CRS and steroid side effects were unwelcome and, at times, miserable, but I got through it. Other therapies have much worse short and long-term adverse risks.
I think others may benefit from some future tweaking of the trial protocol. Maybe more use of tocilizumab, a more targeted antibody treatment for CRS, than the carpet bombing of the immune system by high-dose steroids, but that’s what trials are for: To find the proper dosing and the best pre-medications. All the CLL patients presented at iwCLL had received tocilizumab for their CRS.
I wouldn’t wish my last few weeks on anyone, but I would recommend considering this trial to anyone who needs treatment but for whom options are limited.
In summary, while the numbers of patients treated are small, the results are encouraging. It is bad science to compare one trial to another. Still, the overall and complete response rates are higher with epcoritamab than with liso-cel, the cellular CAR-T immune therapy.
I am a high-risk patient with some complex, idiosyncratic reasons that I might have an exaggerated inflammatory response. My immune responses are quite possibly upregulated. As I said in a prior post, your mileage might differ, both in terms of severity of adverse events and depth of response, but based on the very limited early data and my own N of 1 experience, immunotherapy with a bispecific T-cell engager (BITE) such as epcoritamab is a powerful option.
Stay strong; we are all in this together. Brian Koffman
17 Responses
Superb result for you, Dr K! Thank you for staying in the advanced party for all of us, too. I am a year into the BRUIN trial, VR arm, and looking ahead for for the next lifeline. I hope you keep moving forward with your same gusto and Zen. Regards, Bud
I am so glad to hear that you’re seeing positive results. Wonderful!
Doc,
That is the best news I heard all month!
What a relief for you and your family to see you feeling better.
Jeff
Brian – so very happy to hear this excellent news and update. Many thanks to you for always leading the way for us – and adding to the science for the betterment of all – whilst saving your own life. May this terrific trajectory continue and may you reach your previous levels of energy, fitness and stable/in remission CLL. Big virtual hugs to you, Patty and the family. Onward!
So good to hear, Brian! You are such a pioneer and role model!
I wonder if tocilizumab has been trialed to prevent infusion reactions from obinutuzumab. Might have saved me 3 days in the hospital at MDA.
🙏Congrats and Thankyou for trialling and sharing
BK I have only one comment. Holy Schnikies! Happy for you and for your having connected me with Dr Furman back about eight years ago. I feel like a dinosaur now on Ibrutinib but we ain’t fixing what ain’t broken yet. Thanks for the things you do for us.
Brian,
We have all been cheering for you for the last few weeks. So glad you seem to be doing so well. Thank you for being so transparent with what you have been through. Wishing you continued remission. All the best
Doug
Oops: that’s Doug Smith
Thanks for posting all this. As a cancer biologist/biochemist living with SLL, it’s great to hear from another physician/scientist about your experiences in clear language for scientists and non-scientists alike.
Brian- Thank you for sharing this with all of us….very encouraging…
I’m glad to hear of your exellent results.
I took part in the NVG111 BiTE antibody trial in March 2022, being the 6th patient in the world in London, UK. Unfortunately, it didn’t work for me (I had very bulky nodes) and I had no response at all apart from massively raised liver enzymes which put an end to my participation. I actually got much worse during the short ramp up period that I was on the trial which was very disappointing. I then had V+R for one year and then an all SCT in June this year when I was finally in complete remission with U-MRD at 10-6. I’m still recovering from that, it’s harder than I thought.
I wish for the very best for you.
You are a rock star! I’m so happy for this latest update.
So glad to hear this wonderful news! Thank you for sharing your courageous journey with us. You have been a light and an inspiration as you wrote to us of your experiences.
What a good report, in all ways. We are so grateful for how you balance zest and zen…great modeling Brian.
“Travelin’ mercies,”
True
I’m so glad to know you’re doing better! You navigate the maze of options, side effects and outcomes with such grace and precision. Your advice and articles have helped me immensely in my journey. Thank you for giving so much of yourself to the world.
Wonderful news , Dr. Koffman. I gave been following you for a few years now and thank you for your contribution to our group.