By any measure, George Valentine’s life was “going well,” as he described it, in 2002. Originally from Philadelphia, he was living in Arlington, Texas, working in the information technology sector, overseeing hundreds of people and enjoying family life with a wife and college-age daughter. He turned 50 that year and went to see a doctor for a regular physical.

“The doctor called and said, ‘I see something I don’t like,’” Valentine recalls. “So I went in for another lab test, and a day or so later, he called me into his office and said, ‘I have some bad news. You have chronic lymphocytic leukemia [CLL].’ I was like, ‘What does that mean?’ He said, ‘We need to send you to a specialist. I don’t want to spend too much time focused on what it means. But it’s chronic, so it’s better than some of the more severe [acute] versions of leukemia.’” 

Valentine saw specialists at MD Anderson Cancer Center in Houston, who confirmed the diagnosis and agreed that his slow-progressing leukemia, a cancer of blood cells and blood-forming stem cells in bone marrow, didn’t need to be treated right away. He began a period of active monitoring, commonly referred to as “watch and wait,” that lasted about two years.

Over nearly two decades, Valentine, who now lives in Irving, underwent several different treatments, including chemotherapy and monoclonal antibodies given as infusions and his current targeted therapy, taken as a pill twice a day.

chronic lymphocetic leukemia CLL Can Heal

George Valentine with his grandson.Courtesy of George Valentine

He has become an advocate, working to improve access to health care through the PAN Foundation [formerly the Patient Access Network Foundation] and educating others about CLL through the Leukemia & Lymphoma Society. Cancer Health spoke with him for the latest installment of our Can Heal column—­the empowering phrase “Can Heal” is right there in our title. After more than 22 years with CLL, Valentine, 73, has much insight to offer about treatment plans, advocacy, quality of life and more.

Tell us about your treatment experiences. When you first started, were you having health issues?

The only reason I knew [it was time to start] was because of the labs. Back in those times—there were things done 20 years ago that you wouldn’t do today—to start treatment, they gave you multiple doses of chemotherapy. It was designed to completely flush your system of the blood cells in your body, including the bad ones. Then your body starts producing new ones. In that process, they give you antibiotics because you have no infection-fighting ability at that time. That went on periodically, then they gave me [monoclonal antibody infusions]. Keep in mind that I’m working during this whole process.

What I determined over time was that this whole thing comes down to quality of life. I decided this is not the quality of life I want. Around 2014, I went to my doctor and said, “I can’t come in here every month or every two weeks for four hours of treatment because I’m working and need to work to take care of my family. I need a better option.” I changed doctors, and the new doctors said, “George, there’s a new drug out there—it’s basically a pill you take twice a day.” I said, “Let’s do that.” After a number of years, it failed, then the doctors moved me to the current drug I’m on.

You continued working throughout this process. Does that mean you handled the cancer and various treatments well?

Everybody that gets CLL is unique, and their body’s ability to handle treatment is different. I’ve been on calls with 30 or 50 people with CLL and not one of us has the same version of side effects. I had really bad allergies [before CLL] and had to get shots once a week, but the day they started treating me for leukemia, my allergies went away. I can roll around in the grass and get nothing. The allergist was really shocked. With me, whenever I got infusions [for CLL], I was at high risk for infections—colds and flus, things like that. There was a small amount of being tired right after an infusion, but it didn’t affect my ability to go to work and do my job.

But that’s a story as well. One of the things that happens at some companies if you get leukemia is they decide, “We need to take care of George. We need to take away some of his responsibilities so he can focus on his leukemia.” Which seems like a positive, but it’s actually a negative. My quality of life is that I want to keep working. Once I told the company I had leukemia, all of my [career] progression forward stopped and actually went in reverse.

You’re now retired but remain active through advocacy work. Do you think that helps in your healing process?

Yes, it does. People will get on [a Zoom call] and say, “I was just diagnosed with leukemia. How do I tell my family? Who do I tell?” I can take them step-by-step through my experience. God has allowed me to live all these years with leukemia. Why am I here? I realized that there is power in sharing my story with other people who are just diagnosed and in helping some of them access treatment, including clinical trials.

George Valentine plays golf while on vacation in Colorado.Courtesy of George Valentine

What advice would you offer to someone who is newly diagnosed with cancer?

I tell people this is a journey, and you’re going to need a team of people on this journey. My wife, who is my caregiver, is part of that team. When [friends and family] learn you have cancer, they’ll ask what they can do. Tell them, “I need you to go to my doctors with me. I need you to write down these questions and be sure they get asked and then write down what the doctor says.” If you go by yourself, by the time you get out to your car, you won’t remember what the doctor said.

The pharmacist is a key person on the team. My pharmacist is the one person who knows the 20 pills I take and whether they will play nice with one another—for example, will something for my leukemia interact with a diabetes med? Be sure all your doctors are on the same page and communicate. I have 10 doctors. All are at the University of Texas at Dallas. They share test results and summary notes. It’s a huge benefit. I don’t have to bring test results from doctor to doctor. I don’t want to be the middleman.

This all ties in to quality of life. You have to decide what’s important to you and what kind of life you want to live. If a doctor said, “George, I’ve got a cure for leukemia, but with this cure, you can never leave the house and interact with other people.” I’d say, “No, thanks. I’ll keep doing what I’m doing.” I live near a lake. I want to be able to go out to the lake and to visit family and go to a ball game and do things that other people do.