Published on August 6, 2018
CLL patient advocate Wesley Bishop shares his experience being diagnosed with an aggressive form of chronic lymphocytic leukemia (CLL) with a 17P deletion. Wesley walks through his emotional ups and downs, ways he pushed past the initial fears, and explains why he still remains positive. Wesley also discusses his treatment journey, why his health care team at The University of Texas MD Anderson Cancer Center was an “answer to a prayer” and gives advices for other patients to live well with CLL.
Provided by CLL Global Research Foundation, which received support from AbbVie Inc., Gilead Sciences, Inc., Pharmacyclics LLC and TG Therapeutics. It is produced by Patient Power in collaboration with The University of Texas MD Anderson Cancer Center.
Transcript | Wesley Bishop: You Must Have Hope
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First up, we have Wesley. From the pollen-rain capital of East Texas. Wesley, you’ve got a heck of a story, here. I mean, we touched on it earlier. And, you’re smiling all the time, and it’s one of the things that I absolutely love seeing, when I do these patient power events.
I like to see patients with smiles on their faces. Tell me about your story, and tell me about how you’re living well, and how you got to living well.
Well, first, I’m a dentist, so I guess that’s why I smile all the time.
But, my life with cancer, or CLL started two years ago. I was shaving one morning, one Wednesday morning, and noticed a large knot, at the base of my neck. Of course, I knew it wasn’t good, because I’ve had excellent health for 68 years. So, I saw my family physician the next morning, at 10:00, I had a CT scan, at 3:00 that day, I had a needle biopsy.
Then I was blessed the next day to see a very caring oncologist, in Longview. Of course, his initial diagnosis was what we talked about today. You’ve got a problem, probably, you’ll have to go through some chemo, and we’ll knock the numbers down, and then you’ll have a lot of years before anything else has to happen. But, we better take another biopsy, and remove some of the lymph nodes. We’ll see you in two weeks. So, we left, with a very positive attitude. Well, in two weeks, we visit again, and the picture, and the tone of the meeting was not the same. And, I had no idea was 17P meant, but during this conversation, we were told that we had some genetic issues, that the cancer was gonna be very aggressive, and the prognosis was not as good.
So, we left on a very high, the first meeting, the second meeting, as my wife and I walked out to the car, we looked at each other and said, we’ve got a real problem. But, at the end of the meeting, Dr. Calia mentioned that he would try to get me into MD Anderson, and with the leading specialist with CLL, Dr. Michael Keating. So, we were in Dr. Keating’s office within a month, I had progressed with more nodes. After the meeting in Longview, I read a talk that said, “Fear not. Be brave and be cheer. Your future is very bright, depending on your faith.” Well, I came to MD Anderson with faith, and not really knowing what was going to happen.
But, with the first meeting with Dr. Keating, we set, and he looked me in my eyes, and he gave me hope. He took off the table the idea of a stem cell, and said, we’ve got something that we can help you with. And, we talked about ibrutinib (Imbruvica). We started ibrutinib, in about three months, I put it off a month, and I got real sick. I had nodes everywhere. Couldn’t even lay my head on the pillow. We started ibrutinib, and started infusions of rituximab (Rituxan), and I did nine series of that. But, in two weeks, I had no nodes. I felt better. I had my smile back. He was the answer to a prayer, and he gave me hope with what the future was. We’re two years into it, and I feel good. I have a bright future, I’m enjoying my wife, and my grandchildren.
What advice would you give to people who just got a diagnosis of CLL?
Well, first, they have to realize there’s a lot of us with issues. And, I have to say that I found out that I was special, and I had different CLL.
But, you have to have faith, and you have to have hope. You have to know that there’s a light at the end of the tunnel. There’s a lot of people fighting it, there’s a lot of good friends that you’re gonna make during that journey. The staff at MD Anderson has been wonderful, the care team, and starting with Jackie, she was very concerned when we started, and she found every node that I had. We went through it, but it was—I’m gonna say, it was an enjoyable experience with where I was with CLL, and Dr. Keating, again, he gave me hope, and that’s the big thing we all have to have, that we know we’re on a journey, and there’s way to extend your life, and extend the joy of living.
Did you have any side effects?
Oh, yes. You know, it was a journey of—as we’ve heard before, of symptoms. Stiffness, and aches and fatigue.
But, as we discussed it, between Jackie and Dr. Keating, we adjusted some of the medications, and I really have got to the situation where unless I—I had bronchitis quite often, but there’s time that I really doubt that I have CLL.
Do you worry about stuff right now?
No, I’ve eliminated from my life that worry. I keep happy things in my life, as Dr. Keating told me to do, my wife and I enjoy each other. We’ve been married for 49 years, and we enjoy our family., and our grandkids, and the friends that have meaning to us.