Whenmychroniclymphocytic leukemia (CLL) relapsed, I was training to climb Mount Denali, in Alaska.
My doctor told me I had a choice of more
chemotherapy or the last spot in a clinical
trial testing venetoclax (Venclexta), which
at the time was called ABT-199. After lots of
research, I chose the clinical trial, although
it meant postponing my climb. I felt that the
clinical trial would give me the best chance for
maintaining my quality of life, and it has. I’m
off to climb Mount Elbrus, an 18,500-foot peak
in Russia, in a few weeks.
I was first diagnosed with CLL in 2010, but
my journey with leukemia began the previous
fall, during what was a cold and wet harvest
season on the farm. I had a cold that would just
not go away. I hadn’t seen a doctor in decades.
So, after Thanksgiving, I went to a local urgent
care center. They told me I had pneumonia and
gave me antibiotics. Unfortunately, one course
was not enough, and only after several courses
did I finally feel better.
At that point, I decided I should have a
routine physical. As part of the check-up, I
had a blood test. The doctor called the next day
to tell me the blood test had found a problem
and that he had scheduled an appointment
for me with an oncologist for that day. When
I reached the oncologist’s office, he told me,
“You are really sick, and I have an appointment
made for you at the hospital. You have to be
there in half an hour because if we wait any
longer than that, you may die.”
It turned out the reason I needed to get to the
hospital quickly was that my blood was so full
of leukemia cells that they could have blocked
my blood vessels at any moment, causing me
to have a stroke.
In the hospital, I underwent leukopheresis
to clean up my blood. Then, I had to decide
whether to be treated locally or at a large center
farther away. After researching the options, I
chose to be treated at Northwestern Memorial
Hospital in Chicago because it was a leading
research hospital that gave me access to world-
renowned doctors and clinical trials.
A battery of tests at Northwestern finally led
to a diagnosis of CLL. After a 6-month course
of chemotherapy, my doctor told me there
were no signs of leukemia in my body, but he
was very careful not to say that I was cured.
Sure enough, 4 years later, one of my routine
blood tests revealed that the leukemia was back.
My doctor told me that in the 4 years since
my initial diagnosis, research had led to a
large number of treatments for people in my
situation who were being tested in clinical
trials. He also told me there was one spot left
in a clinical trial he was involved with that
was testing venetoclax or that I could be
treated with chemotherapy, but a stronger
chemotherapy than before.
The first chemotherapy treatment I had
received had not given me many side effects,
apart from losing my appetite. However, I
did not want to start down the road of taking
stronger and stronger chemotherapies and
lose my quality of life. Venetoclax offered me
a better chance to maintain my quality of life,
so I opted for the clinical trial.
I continue to take venetoclax every day. I
take four pills in the morning after breakfast.
Once every 3 months, I go to Northwestern for
follow-up appointments. They do some blood
tests, and I usually have a CT scan. Then I see
the doctor, who tells me I’m doing great and to
keep up the good work. I can take advantage
of the trip to the city and do something fun,
like sail on Lake Michigan.
As far as I’m aware, I have no side effects from
venetoclax. I am a little stiff in the morning, but
I’m 60 years old, and once I’m up and about,
I’m great. Really, really great.
One thing I al ways tell people, and I’ve found
myself counseling a lot of patients on the cancer
floor at Northwestern over the years, is that
having cancer is not an excuse to do nothing—
you have to go out there and kick some butt.
I T IS ESTIMATED
IN THE UNITED
STATES IN 2016
ON \\ AGE 60 \\ MILAN, ILLINOIS