Myelodysplastic syndrome survivor: A targeted therapy clinical trial put me in remission

In my almost 73 years on this planet, I’ve been in a war, been held as a political prisoner, and been diagnosed with myelodysplastic syndrome — a bone marrow disorder that can turn into acute myeloid leukemia.

Each experience brought its own type of pain. During the war, it was caused by lack of sleep, the fear of being injured, and the trauma of seeing my fellow soldiers die. In prison, it was the loneliness of being in a cell, and imagining the lives of those who’d left their names on the walls before me. But in a way, my cancer diagnosis was just as challenging, psychologically.

It’s not because of how hard my treatment was. And it’s not because of any particular side effects I experienced. The reason is simple: because uncertainty unnerves me. So, when my oncologist in Cairo told me I only had three or four years left to live, the feeling was almost unbearable.

Egypt was undergoing a second revolution at the time. My younger son was about to get married. And I didn’t know how much longer I’d be around, or if I’d be able to accomplish everything I wanted to before I died.

That was in Sept. 2013. Eight years later, I am still here. I am also still in remission. I credit both of those facts to a targeted therapy clinical trial I joined at MD Anderson.

Why I traveled 7,000 miles for myelodysplastic syndrome treatment

I went to MD Anderson after three years of watching my white blood cell counts steadily decline. When I started getting persistent ear infections, too, my local doctor finally said, “Let’s face it: you have cancer,” and sent me to a specialist. Egypt is more than 7,000 miles away from Houston, but every specialist I consulted there recommended MD Anderson. So, that’s where I went for my myelodysplastic syndrome treatment.

The first people I met at MD Anderson were leukemia specialists Dr. Zeev Estrov and Dr. Courtney DiNardo. They recommended several rounds of chemotherapy, with a drug called decitabine. But after a few months, it became obvious that the drug wasn’t working. So, they suggested a clinical trial involving a new type of targeted therapy drug called AG-120 instead.

Why I chose a clinical trial to treat myelodysplastic syndrome

I knew I didn’t have many options left. But I trusted my doctors. So, I started taking the targeted therapy drug on March 3, 2014. I never stopped. And I’ve been in remission ever since.

The two pills I swallow every day are not a cure. They are only a treatment. So, I may have to take them for the rest of my life. But that’s OK. Because I think it’s worth it. They keep the myelodysplastic syndrome at bay and allow me to continue living my life. I’ve already lived twice as long as my local doctors thought I would. And I show no signs of disease.

The only side effects I’ve had so far are some mild hearing loss, as well as dry skin and eyes. Whether those are due to my treatment or my age, I don’t know. But I relieve the latter with regular lotion and moisturizing eye drops.

I also get tired a bit more easily than I used to, after doing the same amount of work. But I’m still doing it, and that’s what counts. I never missed so much as a day of lecturing, writing, researching or teaching political science due to my myelodysplastic syndrome treatment.

How I feel now about my clinical trial experience

Today, AG-120 is now called ivosidenib. It was approved by the Food and Drug Administration (FDA) for the treatment of acute myeloid leukemia in 2019.

Knowing I was a part of making that happen as a clinical trial participant feels really good. Because I believe that life is a process of overcoming challenges. Cancer was just the latest. And now, my experience may help someone else to overcome their own.

I know quite a bit about political science. But cancer treatment is the specialty of others. And I know I got the very best treatment at MD Anderson, because I am doing superbly now.

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