Maintaining hope during CML clinical trials

In December 1997, Interferon -- the only available treatment to hold back my terminal chronic myeloid leukemia (CML) -- was failing me. After nearly three years on the drug, that had been expected.

Sitting in my doctor's office at MD Anderson, 40 pounds lighter than my normal weight, my doctor offered a sliver of hope. He said, "We have a month-long clinical trial of a CML drug called PegIntron."

I knew there were no guarantees that it would work. But I immediately said, "I'll go for it!" Time was running out for me, and I desperately needed a Hail Mary drug to survive CML.

Jumping from clinical trial to clinical trial isn't easy. But with no other options left, I had to have faith and keep trying.

Starting the PegIntron clinical trial to treat my CML
I started the PEG Intron trial in January 1998. Since it was the middle of the school year, I reluctantly left my wife and young daughter 800 miles behind. A lifelong distance runner, I remember looking out the hotel window at the Rotary House International at MD Anderson, thinking about going for a jog, but realizing that I couldn't jog even one city block.
I was really excited about this trial because it offered me another lifeline. It required only one weekly injection, versus the daily injections of the regular Interferon.

During the first couple of weeks, I was heartened when the lab tests showed that the drug was working. But the happy in my heart was short-lived. By the fourth week, the drug became less effective. I was in nearly the same condition that I'd been in when I started.

I stayed on the drug until June 1998, when it completely stopped working. Then, I started Hydroxyurea, an older drug used in CML patients to slow down the cancer. I knew resorting to Hydroxyurea meant my clock was not only ticking down, but thundering in my ear. Time and hope were dissolving rapidly.

Finding hope in the Gleevec clinical trial
I returned home and began helping my family prepare for a life without me. Still, I prayed for a miracle. About two months later, my doctor called. He'd just received approval for a drug that could treat my CML.

The drug, Gleevec, was a new type of targeted non-toxic drug. Unlike other forms of chemotherapy, it attacked only the bad cells. This phase of the trial was to test its effectiveness and safety in humans. Again, I gladly uprooted myself and traveled alone to MD Anderson.

That summer, I became the second of 20 patients to enter the phase I Gleevec clinical trial at MD Anderson. Each week, one or two patients entered the trial. As in the previous trial, my blood began to show improvement. I made friends with some of the other patients on the trial as we conversed in the waiting room.

Before one appointment, an elderly lady who looked remarkably like a very frail trial patient I had seen before power-walked passed me as she came out the doctor's office and sprinted towards the elevator. I chased after her and asked her as she was getting on the elevator, "Aren't you the woman normally in the wheel chair?" She said, "Yes!" I knew right then that Gleevec was my Hail Mary drug.

With renewed hope, I returned home with my supply of Gleevec in time for Thanksgiving. I started running a few miles a day. My blood counts continued to improve, and I ran a marathon six months later. 

Looking back on my clinical trial journey
Undergoing a clinical trial isn't easy. For me, it came with my fair share of progress and setbacks. But all along, I maintained hope that the next drug would be the one to save my life.

Occasionally, during my appointments at MD Anderson, I bump into other trial patients and reminisce about the old days. We know that we were on the front line of a clinical trial that is now a standard treatment and is saving the lives of patients who in the past were incurable. We took an uncertain, hopeful path, and it led to a bright future for us -- and for countless others.