CAR-T Torch Bearer

I just recently passed my labs and CT scan six and a half years after entering into a clinical trial for an aggressive form of follicular non-Hodgkin lymphoma (FL). FL is generally considered an indolent or slow-growing cancer, which, in a lot of cases, it is. When I first looked it up after being diagnosed, I read that you would probably die of something else before this cancer would kill you. A lot of people are put on a watch-and-wait routine as opposed to treatment.

Not the usual trajectory

Unfortunately for me, mine was not a watch-and-wait situation, and once I started treatment, it turned into quite a journey.

In my case, it was an aggressive cancer that was resistant to chemotherapy; the term they used for me was I am “refractory.” Each level of chemotherapy I did provided a brief remission, but the cancer would return within six months. Even an autologous stem cell transplant, where they gave me high-dose chemotherapy for five days to kill my immune system and restart it with my own stem cells, failed after six months time.

CAR T-cell therapy changed the game

Then came the game changer and life saver for me in the form of a clinical trial for a new process called CAR T-cell therapy. Never in a million years would I think I would be a patient at a hospital like Dana Farber in Boston or in a clinical cancer trial.

I grew up a Red Sox fan and always heard about it through the Jimmy Fund promotions. They have always had a big connection. But I never would have thought I would be a patient there.

To not only go through the stem cell transplant but also to be part of a clinical trial resulting in an FDA approval of a drug for others with the same cancer. File under: you never know where life will lead you.

Promising trial leads to remission

With the recent tests coming up I did some quick research on my clinical trial called Zuma-5. The results are so promising to see. When I came back for my first scans after the clinical trial at the thirty-day mark, still in recovery and so weak, my trial nurse came in so very happy to declare I had a CR!

I did not actually know what a CR was, so I wasn’t immediately thrilled, though I could obviously tell it was something good. I said what is that? And my oncologists said that means a complete remission.

It gives me a bit of a run of goosebumps still to write it to this day. I was happy, but I had received what I thought to be remission after every round of treatment I had so far, and the cancer had returned each time, so I was still a bit apprehensive. Each subsequent scan and there have been a lot of them being in the trial, has shown the lasting effectiveness of the procedure.

Still in remission 6 years later

What I found researching the latest results showed that there is still no median time determined yet for relapse for those who received a CR in the study. Those like myself who received the CR have not relapsed as of the time of the report, so there is no median time set yet, six-plus years after the trial.

We are all people who had failed at least two lines or more of treatments and this new process has given us all this lasting remission, amazing.

Are we the first to be cured of an incurable disease? Only time will tell, but for now, I and the others in the trial are torch bearers for this new treatment, setting the bar for just how long it can work. I am grateful for the time it has given me, the advances in medical science that has allowed it to happen, and to be a part of moving the fight forward against cancer.