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CLL Patient Stories: Coming to Terms with a CLL Diagnosis

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Published on October 12, 2020

Listen in as CLL patients share their initial thoughts when they were diagnosed with CLL, how they came to terms with their diagnoses, and how they have continued to lead active and happy lives. This segment features Jeff Folloder, Patient Advocate and Host, and Co-Host and Patient Advocate Michelle Nadeem-Baker.

Keep reading for Jeff Folloder’s first-hand account of how and when he started treatment, his advice for those who are newly diagnosed, and how his own diagnosis ultimately had a positive impact on how he lives his life.

Jeff Folloder’s Story

How Did I Get Here?

“And you may find yourself behind the wheel of a large automobile. And you may find yourself in a beautiful house. With a beautiful wife. And you may ask yourself, well, ‘How did I get here?’”

With a tip of the hat to the Talking Heads, of yesterday’s music fame, I think they were writing about me. I had the automobile, the house and the beautiful wife. I had two great kids, was successful, could eat anything that I wanted and still stay slim. I drank good whisky and had great friends. And then I started taking naps. I didn’t know it, but the naps should have been a warning.

Diagnosed with Chronic Lymphocytic Leukemia

I hit my mid-40’s and my regular doctor announced that my blood work wasn’t quite right and he was at a loss as to why my white blood cell count was staying elevated with me showing no signs of infection. He referred me to a hematologist. And within 72 hours my world came crashing down.

I had an appointment with the new doctor along with a blood test. That was followed by a pretty much immediate bone marrow biopsy, which was followed a day later with a diagnosis of “advanced” chronic lymphocytic leukemia (CLL). “We need to start chemo immediately!”

I had been hit in the gut with a baseball bat. But I still had enough wits about me to hold up my hand and ask for some time. A very emotional discussion with my beautiful wife produced the mandate to get a second opinion. And that we did at Houston’s MD Anderson Cancer Center. I was connected with one of the world’s foremost experts on CLL. He gave me a hug (and one for my wife, too) and said that chemo wasn’t starting tomorrow.

Starting Treatment for CLL

I wound up getting treatment almost two years later in a clinical trial that did not involve chemo. I got six and a half years of rock-solid remission while receiving the best care possible. I also started appreciating how I had wasted so much time, effort and resources on stupid stuff. I made a determined effort to stop wasting time on stuff that didn’t matter. I started telling the folks around me that I cared for them and was proud of them. I started exercising during my remission, too. A little, at first. And then I got addicted to speed walking. I mean really addicted. I started going further and faster and pretty much doing it every day. I completed a few half marathons and was pretty darned proud of myself.

And then I relapsed. I was still getting the best care, so I was not particularly worried. What worry I did have was channeled into my speed walking. I knocked out my first full marathon! And I managed to do another half marathon just a few weeks ago, on the morning of my regular work up at MD Anderson (pro tip: doing that will mess up many of your blood test results!).

Where I Am Today

I am relapsed with CLL and am living a great life. When it is time to treat, I will do so and likely have a great outcome. I will present my body to my care team in the best possible shape I can so that they will have the best shot at either putting me back in complete remission or maybe even curing me.

All of that is why I have become a patient advocate. I love public speaking and helping manage CLL discussions online. I want as many people as possible to know that, while there are still some sad endings, the story is more often one that ends well. You can live a great life, even with this cancer along for the ride. It may not “sound” right, but a cancer diagnosis was one of the best things that have happened to me. I got to open my eyes and really live. That is a great message to share and I savor the ability to share it.

by Jeff Folloder

Transcript | CLL Patient Stories: Coming to Terms with a CLL Diagnosis

How Is CLL Diagnosed?

Jeff Folloder: The doctor's office called and said, "We would like for you to come in with your wife." And of course, I knew that that meant that it was not so good news. He told me what all was wrong with me and what all he wanted to do, and it was literally as if he was beating me up with a baseball bat.

My assumptions about being told that I had cancer didn't play out at all like I thought they would. I thought it was time for final plans. I thought it was time for making amends. I thought it was time for getting all the scales balanced and everything made right. It was a very negative outlook as to what cancer was supposed to be.

Looking back over these past 10 years I can honestly say that getting a cancer diagnosis was the best thing that has happened to me in a very long time. I was given the opportunity to reprioritize my entire life, throw away all the things that were a waste of time and energy and really work on the good stuff.

Michele Nadeem Baker: Before I was diagnosed with CLL, if I heard of someone with cancer or even leukemia, I thought that was a death sentence. That I had it was pretty shocking. I've walked in the shoes of those who were just diagnosed, and it is not a great time.



How Did You Come to Terms with Your CLL Diagnosis?

You start out with this heightened anxiety and you think your world has ended and nothing will ever be the same again. What I have learned is things — I guess you get used to it. I'm not saying in a good way, but you do get used to it. You learn to live within the parameters of whatever they happen to be, because everyone's a bit different in CLL, and how they experience some of the effects of it. And so, then things kind of normalize a bit. And then when you go into treatment, for some people everything stays absolutely the same.

I know for myself, and I used to run, I kept that going. It was a little less intense, but I tried to keep whatever I could keep in my own control in control, that would make me feel as normal as possible. So, life didn't totally change. It changed a lot, but it doesn't have to totally change. For some people, it doesn't change at all.

Jeff Folloder: Next Monday I have an appointment at MD Anderson, this is my six-month follow-up coming up. I've been doing this for a decade now. I'd be a liar if I was to tell you that I'm okay with it because I'm not. We're less than a week out, I know that the wonderful phlebotomists are going to take a truly stunning amount of blood out of my arm. The doctor is going to probe and poke and talk and look at the numbers and all that and I'm anxious. I have anxiety. I have worries about what the numbers are going to say, what the symptom load is, and I have worries about what the response is going to be to all of this.

Michele Nadeem Baker: My name is Michele Nadeem Baker, and I have CLL, but I'm not letting it stop me in my life, and I'm still moving forward with it and full of hope.

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