Leukemia survivor: Why I drove 700 miles for treatment at MD Anderson

Not long after my acute myeloid leukemia diagnosis in May 2019, my local oncologist said I’d probably need a stem cell transplant. At the time, I had no idea what that meant. But I knew that the hospital closest to me in small-town Missouri was not equipped to provide it.

My husband and I drove to another hospital located about three hours away to look into having it done there instead. But something about that place made us both uneasy.

Fortunately, my oncologist contacted me before I made any decisions about treatment. He said he’d been uncomfortable with the chemotherapy regimen suggested by my stem cell transplant specialist, so he’d reached out to a colleague at MD Anderson for a second opinion. That colleague, who turned out to be Dr. Farhad Ravandi, made a different recommendation, and said he’d be willing to see me if I could get down to Houston.

Almost instantly, I felt that this was the right thing to do. I don’t think my husband and I even discussed it. We just said, “Yes!” and within two days, we were making the 12-hour car trip to Texas.

Neither of us knew it then, but we wouldn’t be returning home for more than six months. Looking back now, though, I can say it was well worth every minute. Going to MD Anderson gave me a peace of mind that I don’t think I could have found anywhere else.

Choosing a targeted therapy clinical trial for my leukemia treatment

As soon as my husband and I met with Dr. Ravandi, we knew I was in good hands. Both his knowledge and the resources he had available to him at MD Anderson just blew me away. I no longer felt like an anomaly in a small town, but like a patient he actually knew how to treat.

Dr. Ravandi recommended a clinical trial involving a new type of targeted therapy drug known as a kinase inhibitor, along with an intense chemotherapy regimen. Afterward, I’d have a one-day course of whole-body radiation therapy under the care of Dr. Chelsea Pinnix, followed by a stem cell transplant under Dr. Betul Oran.

I was willing to try anything my doctor recommended; I trusted him completely. I joined the clinical trial in July 2019 and had my stem cell transplant on Oct. 2, 2019, using cells from my older sister. I finished all of my treatments just a few days later, after having two more rounds of chemotherapy.

Second clinical trial for side effect cures graft-versus-host-disease

Unfortunately, within two months, I developed a condition known as graft vs. host disease (GVHD). That’s where the cells from your donor – in this case, my sister – start attacking not only any remaining cancer cells in your body, but also some of your healthy tissues.

For me, the GVHD affected my gastrointestinal tract, primarily as nausea. But I also experienced severe weakness and fatigue. To treat it, my doctors recommended another clinical trial, this time involving a drug called itacitinib. It worked out amazingly well, and I was able to stop taking it after 28 days.

The second clinical trial extended our stay in Houston by almost a month. But my husband and I didn’t mind too much. We didn’t want to go home until we felt confident I’d be able to stay there. And my doctors at MD Anderson gave us that confidence. It also feels good knowing that my participation in these clinical trials could help other patients someday.

Why I’m optimistic about the future

My life looks a lot different now than I thought it would. For one thing, I’m only 32, and my husband and I had been ready for children at the time of my cancer diagnosis. But my leukemia came on so quickly that I had to start chemotherapy right away. There wasn’t any time for egg retrieval.

My first pregnancy ended in a miscarriage just six months prior to that. So, we were still grieving that loss when I was diagnosed with leukemia. We’re hopeful that someday we’ll be able to grow our family in other ways, but for now, we are still in the process of healing.

I also continue to take the targeted therapy drug (gilteritinib) daily that I was prescribed during the first clinical trial. I’ll do that until at least 2022, and possibly longer, if my body continues to tolerate it well. But I’m 18 months out now from my stem cell transplant, and I show no evidence of disease. I returned to my job as a pediatric speech language pathologist in August 2020, too, despite the COVID-19 pandemic. And I don’t have any other major side effects. So, that’s been great.

Check-ups at MD Anderson feel like coming home

Returning for my check-ups now at MD Anderson feels a bit like returning home. My doctors there are so compassionate and positive. They always make us feel like a part of the team. Even through all of the setbacks – and there were plenty – never once did I feel like they were giving up on me.

As harrowing as my leukemia experience was, I wouldn’t have wanted to go through it anywhere else. At MD Anderson, I truly was given a second chance at life. And I know that as I navigate survivorship moving forward, I will have the full support of my doctors there.

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