Cancer Progress Report - Cancer Progress Report 2013

When I was diagnosed with chronic myelogenous leukemia (CML) in December 2008, my hopes and dreams were taken from me suddenly. I had a two-year old son and my wife was six months pregnant with our second child. I went from assuming I would see my children grow up, to wondering if I would see my first child start kindergarten. Thanks to a clinical trial that enabled me to receive the drug ponatinib (Iclusig), my dreams have come back. My wife and I have had a third child, and my oldest son started kindergarten last fall.

I am an avid soccer player. In the fall of 2008, I started feeling extremely tired during games and having to sub out a lot. I was also experiencing night sweats. My wife talked me into going to my doctor. He sent me for what I thought would be a routine blood test. However, the next day he called me back and told me to come into the office immediately. I don’t remember much about that appointment after my doctor opened by telling me I had leukemia, I was in complete shock.

The blood test didn’t tell my doctor what type of leukemia I had, so I was sent for a bone marrow biopsy. The results showed that I had CML. Standard treatment was imatinib (Gleevec), which I learned from my doctor put many patients in long-term remission. That gave me some hope.

After taking imatinib for just a few days, I started feeling much better. Thirty days later, my first blood test showed positive signs too. However, when my bone marrow was analyzed six months after I started imatinib, there were just as many leukemia cells as there had been at my diagnosis. This setback was devastating.

To understand why imatinib had not worked for me, my leukemia cells were analyzed for mutations, but this gave no clear answers. I was told my best option was to begin taking dasatinib (Sprycel).

I sought a second opinion from Dr. Druker at the Knight Cancer Institute at Oregon Health & Science University, who agreed but cautioned me that there was a 50 percent chance that it would not work.

Unfortunately, Dr. Druker was right. After taking dasatinib for three months, analysis of my bone marrow showed my leukemia had not responded to treatment. A second mutation analysis provided the explanation: my leukemia cells carried the T315I mutation that made them resistant to imatinib, dasatinib, and all other targeted therapies approved for CML at the time.

A bone marrow transplant seemed to be my only option, and I began preparing for it. However, I wanted to avoid it if I possibly could. I couldn’t fathom having to go through a physically extreme treatment that would involve my being unable to hug my children for 100 days.

I was lucky, I managed to find and enroll in a phase I clinical trial that was evaluating a drug, ponatinib, designed to treat T315I mutant CML. I received my first dose of ponatinib in November 2009. Six weeks later, right before Christmas, I got the best present ever: my test results showed that the drug was working. Finally I felt I could breathe.

More good news followed: at the three month mark my bone marrow showed no sign of leukemia cells, and for the past two years, my leukemia has been undetectable using the most sensitive test that exists. Although this does not mean I am cured, and I know that the cancer might reemerge, I am hopeful that my remission will be long term.

When I look back, I see how very fortunate I was to enroll in the trial. My best friend was diagnosed with CML just a few months before me and he was not so lucky. Although his leukemia went into remission after a bone marrow transplant, it later returned and he succumbed to the disease. But thanks to ponatinib, and to Dr. Deininger and Dr. Mauro, who throughout the trial made sure to treat me, not just the CML, I feel great, I am a hands-on dad to three healthy young boys, I have a full-time job, I play soccer, and I do everything I want to in life because CML doesn’t hold me back.