Mike Delia: Skiing with the Grandkids Thanks to CAR T-Cell Therapy

In summer 2016, after my non-Hodgkin lymphoma relapsed for the third time, I chose to participate in a clinical trial testing a new immunotherapy. It was a CAR T-cell therapy now called axicabtagene ciloleucel (Yescarta). I chose this option because I felt that it was my only chance to get rid of the cancer for the rest of my life. Since receiving the treatment I’ve been cancer free, and earlier this year I fulfilled my dream of skiing in Sun Valley, Idaho, with my kids and grandkids.

I was diagnosed with large B-cell lymphoma, a type of non-Hodgkin lymphoma, in February 2014. However, I first noticed something was wrong the previous fall. I am an avid skier, and I was in the gym training for the upcoming ski season when I felt a lump in my right groin. My doctor initially thought I had aggravated a cyst. But after the lump grew from the size of a marble to the size of a small potato in less than four months, he sent me for a biopsy.

The biopsy showed that I had non-Hodgkin lymphoma. Then a CT scan revealed cancer not only in my right groin, but also in both lungs and in a couple of places on both sides of my lower back. This meant the non-Hodgkin lymphoma was stage III.

The diagnosis was a huge surprise because I didn’t have any symptoms other than the lump, but I attribute it to being exposed to Agent Orange while serving as a helicopter pilot during the Vietnam War; I just can’t prove it.

Despite the surprise, my initial reaction was, “Let’s take care of it right away.” I was convinced that I would beat it. I think that my military background – I finally retired as a full colonel from the U.S. Air Force in 1992 – had a lot to do with this.

I opted to be treated here in Maine and started the standard treatment of chemotherapy and rituximab (Rituxan). However, I had a bad reaction to rituximab during the first infusion so I just continued with the cocktail of chemotherapy drugs. This seemed to work and I was free of cancer for a few months.

Unfortunately, in early 2015, the cancer relapsed in my right groin. More chemotherapy appeared to eliminate the cancer, but it returned in the same area in the summer of 2015. This time, radiation treatment seemed to clear the cancer, but it relapsed for the third time in early 2016.

Fortunately, my local oncologist was in communication with oncologists at the Dana-Farber Cancer Institute in Boston who were running a clinical trial testing a new CAR T-cell therapy for patients like me. The consensus recommendation was that I consider participating in the trial. Given that my other option was more chemotherapy, the decision to participate was a “no-brainer” for me.

The scariest thing about the trial to me was learning a whole new set of words, and understanding exactly how the treatment worked and what it would entail. I wasn’t concerned about the treatment itself.

The first step of the treatment was leukapheresis, a process that allowed the Dana-Farber team to collect my T cells. The T cells were then sent to a laboratory in Santa Monica, California, where they were genetically engineered so that they would attack the cancer. Two weeks later, the engineered cells were infused into my body. I had to stay in the hospital after the infusion so the team could monitor me. I was lucky; I did not have any of the serious side effects that others have experienced with CAR T-cell therapy. The only thing I felt was extreme fatigue during the first two or three days after the infusion. By the fifth day I felt great, and by the eighth I went home.

The CAR T-cell therapy worked. I have been cancer free for two years now and enjoying skiing as much as ever. I don’t know what the future holds because this treatment is so new. But I am hoping that it has conquered the cancer for the rest of my life.

I feel very fortunate to have participated in the clinical trial. It gave me the chance to be at the forefront of advances in cancer treatment. Funding for cancer research was key to the development of my treatment and I have confidence that with an infusion of more funds, we can surge forward and cure more people with cutting-edge new treatments.