What Does Living Well With CLL Mean?

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Topics include: Living Well

It’s easy to focus on getting or staying physically healthy, but what about your overall health?  Patient Power Founder, Andrew Schorr along with CLL patient and patient advocate Jeff Folloder and MD Anderson Cancer Center physician assistant Jamie Lynn Gibbons share what living well looks like from each of their perspectives.  Listen as Jamie discusses exercise, Andrew shares his holistic view, and Jeff describes his version of stress-free positive thinking.

Provided by CLL Global Research Foundation, which received support from AbbVie Inc., Genentech Inc., Gilead Sciences, Janssen Pharmaceuticals, Inc., Pharmacyclics, Inc. and Teva Pharmaceuticals.

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Transcript

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.

Andrew Schorr:   

Okay. So part of the team is Jamie. So I want to just while we’ve been discussing this, we all want to be more in control.  That’s why you’re here.  What can I do? What can I eat, etc.?  So, Jamie, there are other things though, even for fatigue, that can make a difference like exercise, right? I mean hasn’t there been research that a cancer patient, even one who feels very fatigued, exercise? And that doesn’t mean running a marathon. But it’s to the good, right? 

Jamie Lynn Gibbons:       

Yes, definitely.  As I’ve become more familiar with CLL, and now kind of as my general clinical assessment when I see patients is kind of asking them what their physical activity level is right now.  And if it’s really not that much or they don’t have a specific routine, I say let’s maybe try to have a game plan for between now and the next time we see you.

And it doesn’t have to be running a marathon. It can be going for a walk after dinner. It could be, if you have co-morbidities or arthritis, going to the pool and doing something there, so it’s not hard on your joints. So it’s about finding something to increase it to a level that you’ll be able to manage. But it’s definitely something I recommend with almost every single patient. 

Andrew Schorr:                  

There’s one other thing I wanted to bring up about living well with CLL.  You want to live well. Let’s leave out the CLL for a second.  But it dominates our thoughts sometimes. And, Jeff, I want to ask you about this.  So I was seeing my local oncologist in Seattle. And one day, he said, “Maybe you should take a baby aspirin.” And I said, “What are you talking about?”  He said, “Well, maybe a good idea for overall heart care, etc.”  I, eventually, developed another condition, myelofibrosis, where it maybe wouldn’t be such a good idea.

But before that. And I said, “But I’m a cancer patient.” He said, “Yeah, but I’m also an internist. And I’m thinking about you not just as a cancer patient but as a whole person.” We can have heart disease. We can have diabetes.  We can have arthritis, etc. Jeff, you’re doing well with your CLL, but you’re trying to take care of your overall health.

Jeff Folloder:     

Absolutely.  I was listening to all of the doctors speak. And I was like yeah, I did that, I did that, I did that.  And Dr. Keating told me you can have your Scotch. You can have your Blue Bell ice cream when it’s available in the stores.  Just don’t go nuts.  Well, all the stuff that I was doing to make myself feel better, have that bowl of Blue Bell, wasn’t as important as what you talked about earlier, the mental health part of it.  All that walking that I’m doing is great. But the fact that I’m doing the walking in the morning without the headphones, with the ringer on the cell phone turned off, no text messages.

It’s just quiet. That’s my hour-and-a-half or two hours every morning to get reset and prepared for the day to push out all of the bad stuff, bring in the good stuff, and, actually, be ready to be a real person all day long.  

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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Page last updated on October 4, 2016