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Dealing With CLL Blood Test Result Anxiety

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Published on November 5, 2019

Patient Power Co-Founder, chronic lymphocytic leukemia (CLL) patient and advocate, Andrew Schorr, talks with CLL patient Jay Connolly and his care partner, Maureen Connolly, about coping with feelings of anxiety around blood tests and maintaining an active lifestyle with a chronic cancer. Jay and Maureen share how they learned to pay attention to more than just the numbers, and how his doctors have, over the years, explained machine counts to help alleviate blood test anxiety. Watch now to hear their CLL patient experiences.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc. and Pharmacyclics for their financial support through grants to PEN. These organizations have no editorial control, and Patient Power is solely responsible for program content.

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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.

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:          

So, Jay, you have these blood tests, and it sounds like your emotions sometimes go up and down. Have your doctors tried to tell you to, I don’t know, for lack of a better term, “chill out” a little?

Jay Connolly:              

Oh, absolutely. And I’ve just finally—after eight years I’ve gained some ability to do that. But it just—it was a function of education, of learning not to overreact to the blood numbers. And to look—because I’ve had times when getting my blood count—my white count right now is around 34,000; my last test it was 28, I think. And so, even a year ago I would’ve overreacted to that, I would’ve thought, “It’s gone up 6,000, that’s horrible!” but the fact is that the test before that it had gone down by kinda 4,000.

So, it tends to jump around, and one oncologist took the time to take me through the machine counting, the process of machine counting, and explained that it was dangerous to get too excited about one blood test. And so, that was probably a couple of years ago that he gave me that explanation, and it’s really now that I’ve had another half dozen tests, including one—and this was instructive—I think it was six months ago, my GP phoned me because my neutrophils were at 0.8, or something.

And he said, “Have you seen your – “he said, “How do you feel?” and I said, “Great,” and he said, “Do you have a cold or anything?” I said, “No,” and he said, “Well, I phoned the oncologist because I don’t like the look of the neutrophils,” and the oncologist said, “Well, have him go back in 10 days for another test.” When I went back, my neutrophils were 3.9.

 

Andrew Schorr:          

Totally different.

Jay Connolly:              

It went from the lowest rest I’d ever seen to the highest test I’d ever seen. So, either somebody in the lab didn’t know how to operate the machine quite as well they should, or there’s that swing in the quality of the machine counting; so that actually helped me relax.

Maureen Connolly:    

Yeah, one of the really important things that the doctor said to us a couple of years ago was, “Jay, maybe don’t pay as much attention to the numbers, just how are you feeling. Make sure that that is at the top of your mind, not the numbers: how are you feeling?” Because through it all, Jay’s felt quite well, and we’ve done some amazing bike trips, and we’ve had some great adventures, and he’s felt good, so.

Andrew Schorr:          

So, Maureen, there in that beautiful British Columbia and you’re around all these kids at a boarding school, can you just go live your life and say, “Yeah, he’s got this chronic condition, and he may need treatment again, and he gets occasional—but let’s just like put it aside,” can you just go, Maureen?

Maureen Connolly:    

Yeah, we pretty much have to, because it’s kind of overwhelming and there are always lots going on, and so many people to look after, that I thinkwe do struggle a bit with that. I think that sometimes Jay wishes there was more attention paid to him. But for me, it’s good to have lots going on. And we look forward to—because we’re at a boarding school, we get lovely long breaks together, and we’re just about to start six to eight weeks together now. And we’re really looking forward to that, and just spending the time on each other and, yeah.

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.