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