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Charlie: How My Story Could Help Newly Diagnosed CLL Patients

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Published on October 1, 2014

Until his participation in our event at Seattle Cancer Care Alliance, Charlie had only told close friends and family about his CLL diagnosis. Charlie initially felt like "an atomic bomb" went off in his brain when he found out he had CLL in 1996, and he has been living in the watch-and-wait phase ever since. He explains how over the years he has adopted a new attitude about CLL and why he feels sharing his story could help people who are newly diagnosed. 

This program was sponsored by The Patient Empowerment Network, which received educational grants from AbbVie, Inc., Genentech and Gilead Sciences, Inc.

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Transcript | Charlie: How My Story Could Help Newly Diagnosed CLL Patients

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Charlie:

I, I live in Seattle. I was diagnosed in ’96.

I, my diagnosis went like this. I, I was, needed some blood pressure medication. And my doc had me, after we started, had me do some blood tests, CBC. And it was, it was, the white blood cell count was, was high. So took another one, and then eventually, I winded my way down to the medical center to a real hematologist.

And they told me I had, the first diagnosis was lymphocytosis, whatever that means. And I thereafter, ultimately I was told that I had chronic lymphocytic leukemia. Now, my grandfather died of leukemia, what variety I am not sure. But it was a long time ago, when I was born.

And so, how it affected me was that it was like an atomic bomb going off inside my brain. It was this cancer first of all. It’s incurable, and I was, I was just devastated. And I didn’t know what to do. For about six months, I just labored under this. It was just crushing weight.

And Rose and I were driving around one day, and she looked over at me and said, you don’t have your seatbelt on. Fasten your seatbelt. And I said, why? I’m going to die anyway—so, very foolish. I ultimately, my counts went up fairly steadily. My counts, the original count was around 25. The total white blood cell count went up to 55 or so.

And then, over many years, down to 25. So my doctor said that this can happen and, you know, don’t worry about it. And that was right after being diagnosed with incurable cancer. Don’t worry about it.

So, of course, I, I have a tendency to not look on the optimistic side of things. And, of course, I was, I felt really bad for many years. And it just was a gradually climbing out of a hole.

My history, subsequently, is I just don’t think about having CLL very much. I mean, it’s, it’s there. And if I’m totally down in the dumps, I, that’s, I think I have this problem, and this problem, and this problem, and I have CLL. But normally, I don’t think about it at all. I’m totally symptom free, with the exception of this goofy sensitivity to insect bites.

But otherwise, I just don’t, I have no, I’m as healthy as the next person. Only my physician would know that I have it.

I’m really lucky certainly. And perhaps it would be best to say that I am blessed. I’m comfortable with that term, but maybe it’s right. A lot of people get sick. I’ve followed the CLL mailing list from the beginning, and a lot of those people are gone now.

And but, for someone that is newly diagnosed, I think it’s really important to, to, to understand that it isn’t a, it may not be a, it may prove to be not a problem in, in your life.

Over the years, I’ve tried to keep my diagnosis to only my friends and relatives know. At this point, I think it’s a good idea to let people that are newly diagnosed know that it, it, there, there is some sort of subset that really just nothing happens. And I was told that in the beginning, and, of course, I didn’t believe it.

It’s a problem for me, but it really hasn’t stopped me from doing what I want to do for, for many years. At first, of course, it was absolute chaos. But now, it’s, it’s, it’s not nothing, but I’ve got bigger problems.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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