Brian Parkinson: Taking Hope from Molecularly Targeted Therapy
When my chronic lymphocytic 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 always 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.
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