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
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
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.
Living with Chronic Myelogenous
Leukemia (CML) Since 2008