Non-Hodgkin lymphoma survivor: A CAR T-cell therapy clinical trial gave me my life back

Before I was on a clinical trial, I felt sorry for patients participating in them. I considered clinical trials a last-ditch effort, and felt they marked a really low point in someone’s life.

So, when I was faced with the possibility of being on one myself, my reaction wasn’t at all what I expected. I felt grateful just to have another option — a really viable one that my doctors were excited about. And for the first time in a long time, I actually felt hopeful.

The long road that led me to MD Anderson

By the time I got to MD Anderson, I had already been through the wringer. I’d had my spleen removed, received every drug known to increase platelet counts, and spent 43 days in a local hospital before I finally received the correct diagnosis — diffuse, large B-cell lymphoma (a type of non-Hodgkin lymphoma) — in August 2013.

My treatment in Kansas City included six courses of “R-CHOP” chemotherapy. They appeared to work at first. But seven months later, scans revealed that the cancer had either returned or never really been gone to begin with. I started preparing for an autologous stem cell transplant, in which my own cells would be used to rescue my immune system after high-dose chemotherapy.

But when the high-dose chemo failed, I had to consider the next-best option: an allogenic stem cell transplant, which uses stem cells from a donor. My husband and I weren’t ready to face the additional risks and side effects that come with an allogeneic transplant, so we sought a second opinion at MD Anderson.

Even though it’s two states and 14 hours away, MD Anderson is the top cancer hospital in the country, so the choice seemed pretty obvious. And once we knew that I had lymphoma, we also knew we wanted a hospital that focused exclusively on cancer.

How I found hope twice at MD Anderson

At MD Anderson, Dr. Frederick Hagemeister confirmed my diagnosis, but he also recommended a new treatment plan — one that would still allow me to use my own stem cells. I had an autologous stem cell transplant at MD Anderson in January 2015. Unfortunately, it wasn’t successful.

I cannot tell you how terrifying it was to learn that the cancer was still there and I had no good options left. My local doctor said my only chance at a cure was CAR T-cell immunotherapy. That’s where doctors harvest your T cells, then reengineer them by adding a receptor that binds to cancer cells so that they can recognize, attack and kill it. The cells are infused back into your body through an IV.

At the time, CAR T-cell therapy had been used mainly for leukemia, but multicenter clinical trials were starting to be talked about for lymphoma. MD Anderson was about to launch its own CAR T-cell lymphoma clinical trial, and Dr. Sattva Neelapu had just one spot left. I was excited to learn that I qualified.

My CAR T-cell infusion

I had my CAR T-cell infusion at MD Anderson on July 13, 2015. Since I was only the second patient at MD Anderson and the third one in the world to receive CAR T cells to treat non-Hodgkin’s lymphoma on this clinical trial, there were a lot of clinicians in the room, watching.

The infusion normally only takes a few minutes, but my sinuses started to close up almost immediately, like an allergic reaction. I worried my throat would close up, too, so they paused the infusion and gave me an antihistamine through an IV. We had only a very short timeframe — about 30 minutes — to complete the infusion, so once it was clear that the antihistamine was helping, we continued.

My scariest CAR T-cell therapy side effect

I stayed in the hospital for nine days. The worst side effect I experienced was probably “cytokine release syndrome.” It’s like a really bad flu, because your body — with the help of those reengineered cells — is working so hard to fight the cancer. One of the scariest parts is that sometimes you become unable to answer even the simplest questions, like, “What’s your name?” or “What color is this?”

For me, the neurological side effects appeared on the fourth or fifth day after the infusion. I needed a CT scan, and a nurse was telling me to swing my legs off the bed so she could help me into a wheelchair. I could hear and understand her, but I couldn’t make my body respond. Later, a doctor pointed to a picture of my son and asked me who he was. I said his name was “Spanish.” (Actually, it’s “Hudson.”)

My doctors used a rheumatoid arthritis drug to reverse the syndrome’s effects. They only lasted about 24 hours, but it was still really scary for me to experience and for my husband to watch. The doctors said that everything should eventually return to normal, but with me being such an early user of CAR T-cell therapy, they couldn’t know for sure.

Happily, by the time I got out of the hospital, I felt a lot better, and by the time I went back for my scans in August, I was feeling really good. But the best news of all is that I was also in complete remission, and I have stayed that way for two-and-a-half years.

My legacy: saving others people’s lives

CAR T-cell therapy has since been approved by the FDA for treating lymphoma. But knowing that I was a trailblazer in this area makes me feel so proud. Clinical trials are the future of medicine. And they really are how new treatments become available.

Seeing how far CAR T-cell therapy has come — and knowing that my help in getting it approved might be saving other people’s lives — is amazing. I was so sick for so long, that at some point, I felt like cancer had become my life. Cancer consumes you, whether you want it to or not, so getting to return to work full time and attend all of my kids’ games and practices again has been wonderful.

I didn’t think my life would ever be normal again. It’s been really awesome to realize that it is.

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