CLL Disease Monitoring: Coping With the Fear of Relapse

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Topics include: Living With Chronic Lymphocytic Leukemia

How can chronic lymphocytic leukemia (CLL) patients cope with uncertainty and the fear of relapse? Listen in as patient advocate Carol Preston explains how she compartmentalizes living with two cancers, pushes through and stays hopeful. 

This program is sponsored by Pharmacyclics. This organization has no editorial control. It is produced solely by Patient Power.

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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, I wanna deal with an emotional issue for all of us. So, as I got a couple years past FCR, I tried not to think about the CLL, and I finally got to a point where I wasn’t thinking about it every day, which I had been, and I just went on with my life. But, there’s uncertainty for sure. Even now, I’m a year and a half out from retreatment, and I wonder – I’m getting monthly blood counts, and I’m watching them like a hawk. Should I worry? Carol, how have you dealt over a number of years now with the uncertainty?

Carol Preston:             

Similar to your experience, rather than saying I stopped thinking about it—I think there’s not a day that goes by that I don’t think about it several times a day. However, having said that, what I feel that—what I’ve done is compartmentalize it, as we do with so many things. So, there’s a little compartment for the CLL, there’s a little compartment for work, and I also just—I recently retired as a communications consultant, and I would say the most—the longest stretch of time when I did not think about the disease was when I was working.

Since then, I’ve been very busy, including a move, as you mentioned, a week ago. I like to say we’ve moved from total chaos to diminished chaos. “This too shall pass.” But, that’s basically what I do. And, of course, with that second primary cancer, now I need two little compartments. But, my feeling is that once you hit the ground running to figure out what you’re going to do, when you’re going to do it, who you’re going to see – and, that sequence ends a lot easier in theory than it does in practice – that staying in motion, moving toward the next goal, really helped me.

The same held true just a year and a half ago with the sarcoma. I know we’re not talking about sarcoma, but when I found out, I moved as fast as I could to figure out how I was gonna resolve the situation, and five weeks after it was found, I had the surgery and the radiation—only five weeks. So, that’s basically how I deal with the emotion. There’s that expression “If it ain’t broke, don’t fix it,” which means if it’s not an issue, don’t dwell.

Now, there was one little caveat before we hear how James handles it, and that is the last time I saw my hematologist, he mentioned that my B12 level had dipped, and so, I’m just taking the sublingual—a couple over-the-counter sublingual tablets a day, but anything that dips, anything that’s out of the ordinary, suddenly, the brain starts to cogitate, and I wonder, “Is this the start of something else?”

Or, as he asked me, he said, “Have you changed your diet lately? Have you stopped eating meat?” I said, “I’m trying to do more plant-based.” He said, “Start eating some meat.” So, I’m hopeful with the B12 sublingual and eating more meat that that will resolve the question, but you do your best to push through, but you hit these little bumps.

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 July 10, 2019