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A Decade After Diagnosis: My CLL Story

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Published on February 25, 2021

CLL Patient Shares His Story & Advice for Others

Brad Adams was diagnosed with chronic lymphocytic leukemia (CLL) in 2010. His journey with CLL includes seeking the care of a specialist, several years of watch and wait, relapse and being one of the first individuals to join a new clinical trial for CLL in 2020. His path inspired him to help others who are experiencing the same things, as a volunteer for a peer-to-peer support program at the Leukemia & Lymphoma Society. Keep watching to learn more about his experiences and hear his advice for fellow patients. 

Support for this series has been provided by AbbVie Inc. and Genentech, Inc. Patient Power maintains complete editorial control and is solely responsible for program content.

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Transcript | A Decade After Diagnosis: My CLL Story

Brad Adams: Hi everybody. My name is Brad Adams, and this is my CLL story. 

When Were You Diagnosed with Chronic Lymphocytic Leukemia?

I was diagnosed in the year 2010. In the spring of that year, I had some kind of unusual set of symptoms that forced me to go to the emergency room. The only thing that the doctors could find out of whack was my white cell count was slightly elevated. Over the summer my GP watched my count, and it never returned to normal. So at the end of the summer, she said, "I think you have CLL and you better go see a hematologist." I had no idea what CLL was. So, I did what everybody does and Googled it. Certainly, I knew then that I had cancer, or at least I thought I did. When the hematologist told me that I had CLL and that I had 18 years to live, my wife burst into tears. I had not told her that I might have CLL because I didn't want to worry her. This was the first time that she heard it. And so naturally she was distraught.

How Long Were You on Watch and Wait for CLL?

But the first thing we did after that diagnosis was to make an appointment to go to MD Anderson Cancer Center. My CLL specialist advised that we watch and wait. All of us know what that is. Watch and worry is what a lot of us call it. I was on watch and wait until March of 2014. Interestingly enough, what drove my treatment was not a high white cell count or a large spleen or anything like that. It was large lymph nodes. My neck swelled up. I looked like a football linebacker, and I gained about 15 pounds.

When I saw my oncologist in February of 2019 and my white cell count was abnormally high, he acknowledged that I had relapsed. But what was so great was he had been thinking about what options I had, and it wasn't that I had one option. As I recall, it was I had three different options, which was just fantastic to have that kind of flexibility to choose a treatment plan. And the one he was really interested in was a clinical trial that had not started. So, he monitored me throughout 2019 and into 2020 as the trial was developing. He finished the final paperwork and COVID slowed things down, of course. Finally, in September of 2020, I joined the clinical trial, and here we are in February of 2021. My white cell count, the last time I saw the doctor, was normal for the first time since February of 2019. My platelets are good. All the other indicators are good, and I feel great.

What Would You Say to Newly Diagnosed Patients or Those Considering a Clinical Trial?

What I would say to someone who's considering joining a clinical trial is to think about the fact that you're being given the opportunity to receive treatment that is on the cutting edge of treatment for CLL. Like I said, in my case these three drugs are approved by the FDA for the treatment of CLL. However, they had never been combined before. I was quite confident that they would put me in remission and perhaps, as the trial is intended, give me a longer and deeper remission. Because I'm so grateful for the treatment I've been given, for the opportunity to go to MD Anderson, for the CLL specialists that have treated me, who are some of the best in the world, right from the get-go I've wanted to give back to the CLL community. So, I volunteer with The Leukemia & Lymphoma Society through their First Connection Program.

This is a program that connects newly diagnosed CLL patients with people like myself who've been through the process and can provide some comfort, some reassurances and some answers to those newly-diagnosed patients. If you think back to when you were first diagnosed, you were probably terrified. You had cancer, the C-word, and you didn't know what lay ahead. Well, the very first thing that I tell newly diagnosed patients, believe it or not, is I tell them, "If you have to have CLL, this is one of the best cancers to have." Because it's treatable. The treatments have come a long way in a very short time and tremendous advances continue to be made. And the leading CLL researchers in the world are even talking about a cure on the horizon. And the management of side effects has gotten much, much better. So, like I said, I tell them, "If you have to have cancer, CLL is a good one to have."

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