Randy Surratt: Looking Forward to the Future Thanks to a Clinical Trial at the NIH

Age: 62Roseville, Michigan

Since I was diagnosed with hairy cell leukemia 21 years ago, I have been in and out of treatment. Most recently, I was treated with moxetumomab pasudotox-tdfk (Lumoxiti) as part of a clinical trial being run at the National Institutes of Health (NIH). The six-month course of moxetumomab pasudotox-tdfk put me in complete remission for the first time since my cancer diagnosis and my blood counts have returned to normal for the first time in more than 15 years. I continue to live a day at a time, but my wife and I are now feeling more secure about the future.

I was diagnosed with hairy cell leukemia in August 1998, when I was 41. My wife, Vicki, had insisted I go to the doctor after I’d had several episodes of exhaustion over a hot and humid weekend. I’d tried to mow our lawn and been unable to do more than a couple of passes up and down before having to take a break. I also remember being too exhausted to walk back to the car without sitting down after throwing batting practice to my oldest son.

Two days after the doctor’s visit, they called to tell me to go straight to the emergency room. They recommended that someone else drive me because the blood test results had shown that my blood cell and platelet counts were so low they were afraid I would pass out.

It took about a week to get the final diagnosis because hairy cell leukemia is so rare that the oncologist had wanted a second opinion from the University of Michigan before telling me. During that week, I was terrified. I didn’t know anyone who was living successfully with cancer so I automatically thought I would not have long to live and I was extremely worried about what would happen to my wife and kids.

When they finally told me that I had hairy cell leukemia and that it was a slow-growing cancer that can be controlled by treatment, I felt some comfort. But they also told me that there was no cure, which was very hard on my entire family.

I started treatment with cladribine almost immediately. It is a chemotherapy that was given 24 hours a day for 7 days. The leukemia and the cladribine left my blood and platelet counts so low that my immune system was severely compromised and I had to remain in isolation in the hospital for three weeks while it rebuilt. As the general manager of a small family business, I kept my mind off everything by continuing to work from my hospital bed.

The cladribine put me in partial remission, but only for 2 1/2 years.

Another cycle of cladribine put me back in partial remission, but it only lasted two years. A this point, I had two cycles of cladribine, but again, I was only in partial remission for about 2 years.

At this point, I changed treatment to rituximab (Rituxan). Unfortunately, like cladribine, this was only a temporary fix. Between 2005 and 2015, the leukemia would return every two years. Each time, rituximab would put me back in partial remission, but only for a limited time.

In 2015, my oncologist recommended I consider a clinical trial at the NIH testing a new treatment for hairy cell leukemia, moxetumomab pasudotox-tdfk. I had tried to enroll in the trial in 2005, but had not met the enrollment criteria. This time I did meet the criteria, and I was one of the last patients to enroll. From March 2016 to August 2016, I traveled to the NIH for monthly treatment with moxetumomab pasudotox-tdfk. A bone marrow biopsy taken 1 month after I finished treatment showed there was no sign of leukemia; I was in complete remission, and have been ever since.

Participating in the clinical trial at the NIH was a great experience. It was the first time I had ever met other patients with hairy cell leukemia, which helped me emotionally. It was also good to be cared for by nurses and oncologists who knew so much about the disease.

I am extremely thankful for having received moxetumomab pasudotox-tdfk, and I always say, “If you ever want to see your tax dollars being spent wisely, visit the NIH.”