Chronic myeloid leukemia survivor: Why I joined a clinical trial at MD Anderson

When I was diagnosed with chronic myeloid leukemia (CML) in 2005, I was flabbergasted. There was no history of cancer in my family. I was only 42. And, I felt perfectly fine.

But routine blood work at my annual physical showed my white blood cell count was significantly elevated. It was more than four times the upper limit of the normal range. There was no question that I had leukemia. All that was left to decide was where to go for my treatment.

Why I chose MD Anderson

I’m retired now. But I spent my entire career working in health care IT. Most of that involved traveling from one end of the country to the other, visiting various hospital systems. So, I was familiar with MD Anderson not just because of its stellar reputation, but also because I had been there myself in my professional capacity.

I knew that not all cancer centers are created equal. So, if I had this disease, I wanted to be seen by experts. Not necessarily because my local doctors wouldn’t know what to do. Just because you go to a specialist for a reason. I wanted to see doctors who focused on chronic myeloid leukemia and treated that disease every single day.

I was living in North Carolina at the time. I knew I’d need a place to stay for an extended period if I required a stem cell transplant. My wife’s brother and family live in Cypress, just northwest of Houston. She’d feel more comfortable staying with them than she would at a hotel. I called MD Anderson.

Why I joined a clinical trial

The first thing my doctors did at MD Anderson was conduct their own tests to confirm my diagnosis. Then, they asked if I’d consider joining a clinical trial. It involved a type of targeted therapy drug called imatinib, which was still relatively new at the time. Both my local doctor and my MD Anderson care team believed it would work well for me.

I felt very strongly that others had helped and sacrificed to get me to this point. So, I owed it to the patients who would come after me to do the same. It was my turn to pay it forward. I joined the clinical trial.

Why I’ll keep taking this targeted therapy drug

Back in 2005, researchers were still trying to find the optimal dose of imatinib. So, the goal of my clinical trial was to see if patients could achieve remission faster by taking a higher dosage. Eventually, the data would show that a lower dose could still get patients across the finish line; it would just take them a little longer to get there. But it would also cause fewer and less severe side effects, which was great.

Imatinib ended up working so well for me that I stayed on it long after the clinical trial ended. I briefly went off of it once, in 2020, after the results of a new international study came out. It showed that some CML patients who had achieved complete remission on this drug could stop taking it and remain cancer-free. Leukemia specialist Dr. Courtney DiNardo said I was a good candidate to try going off the medication. I gave it a shot.

It was really strange not taking that pill every day. By then, I’d been taking imatinib every morning for 15 years straight. But when my white blood cell count started creeping back up again just 90 days after going off the drug, I wasn’t too disappointed. The medicine still worked. So, I felt like either way, I’d win. 

My life today, after 20 years of targeted therapy

I’ve been on imatinib now for almost 20 years. And, aside from that one three-month period in 2020, I’ve only missed maybe five doses. I never needed a stem cell transplant. And, I only come back to MD Anderson every other year now for check-ups.

So far, my only limitation is that I can’t eat grapefruit. Which is no big sacrifice. I’m also prone to muscle cramps, I get chilled more easily, and I have loose stools. But I’ve learned to manage all of those side effects with diet, occasional potassium pills, and a sweater or jacket. I have no complaints.

What I tell others about clinical trials

I realize that clinical trials are not for everybody. It’s a very personal decision. You have to weigh the pros and cons and then decide if it’s right for you.

But in the end, I said yes. I felt like I owed it to society as a whole, and to the people coming after me. If I could help better their lives in some small way, then it was almost a moral obligation.

Today, I look at what I did as being pretty trivial. Essentially, I took pills twice a day and had a whole lot of bone marrow aspirations. So, I’m no hero. I’m just lucky. But I am proud to have contributed in some very tiny way. And I’m grateful to still be alive today.

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