After being treated for his chronic lymphocytic leukemia with chimeric antigen receptor (CAR) T-cell therapy, Brian Koffman, MDCM, DCFP, DABFM, MS Ed, medical director, CLL Society, is being followed for 15 years to better understand if there are any undiscovered adverse events that pop up and how durable the response is.
After being treated for his chronic lymphocytic leukemia with chimeric antigen receptor (CAR) T-cell therapy, Brian Koffman, MDCM, DCFP, DABFM, MS Ed, medical director, CLL Society, is being followed for 15 years to better understand if there are any undiscovered adverse events that pop up and how durable the response is.
Transcript
As someone treated with CAR T cells, what do you do regarding follow up? What is your physician keeping an eye out for?
Since CAR T is a new therapy, and the first genetic therapy that’s been approved in the United States by the FDA, I’m being followed for 15 years. Which I’m very happy about, because if I’m being followed for 15 years, that will mean I’m 82 years old, so it means I’ve lived 15 years with this.
I’m being followed to see are there any undiscovered adverse events that we don’t know about. It is gene therapy, I have foreign genes in my body, that’s why it’s a chimera—a mix of 2 different creatures in me. So, I have foreign protein in me. Is this going to cause a problem? Other gene therapies have been disastrous in the past. So far with CAR T things have gone well. But is there something that’s going to pop up 5 years from now, 10 years from now? We really don’t know the answer to that. So, that’s one thing that I’m being looked at for.
The other thing is how persistent are the CAR T cells, themselves? There’s not clarity on how important that is in terms of the duration of the response. So, some people lose their CAR Ts and they still have very durable responses, and other people have persistent CAR Ts, but the cancer comes back.
And that leads to the other big question: do I remain in a complete response? Or is the cancer creeping back again? That’s the main thing that they want. So, in CLL, the responses have tended to be quite durable for most patients. But in other blood cancers, sometimes people get a deep response—MRD [minimal residual disease] undetectable—but the disease can be back again in 6 months. So, I think that those are the things that they’re looking for.
Plus, the usual kind of things. Am I getting more infections, am I getting anemic, am I getting problems with my platelets? Things like that. The follow-up isn’t too onerous. I essentially get a physical exam and blood work once a year.
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