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Planning for the Future With CLL

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Published on November 19, 2019

Key Takeaways

  • Staying optimistic about the future.
  • Staying active and physical lets you know how you are feeling.
  • Both short-term and long-term plans are important.

During this highlight from our Patient Café program, a panel of patients and family members living with chronic lymphocytic leukemia (CLL) share ways they continue to make plans and remain optimistic about the future. Watch as a father shares his plans to walk his daughter down the aisle, what a husband and wife do to maintain active lifestyles, meet important milestones and more.

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.

Featuring

I just wanted a way to express deepest thanks for being able to attend this extremely helpful and informative seminar from afar. Thank you from a CLLer!

— Marilyn

Partners

Patient Empowerment Network

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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:          

How do you and the family look about your future? You got a couple of grandkids, right? I don’t know if you’ll have more. And wouldn’t it be great years from now to dance at their weddings? I mean, how do you view the future? And how do you generally all plan for the future?

Allan Rosenthal:         

I take it one day at a time, but I’m enjoying life as it is. I’m working, I’m having actually the best time in my practice I’ve ever had because I’m doing what I like to do. I live in a very nice place. I get to do the activities I want; besides pickleball I play golf still, and I still ski. I’m fine. One of the things that was strange that happened to me: I went to two meetings with other podiatrists, and I was really feeling pretty bad about it at the time. I wasn’t on any treatment, and I said, “You know, I have this thing called CLL,” and my friend turns around to me, and says, “My father and uncle have it, and if you start complaining about it, I’m gonna wring your neck!” so to speak. Thank God there’s research out there, continued strives, and medication. And again, I’m grateful for this Patient Power. 

Andrew Schorr:          

So, do you make plans for the future? You and your family?

Allan Rosenthal:         

Yes. Yeah.

Andrew Schorr:          

Okay, you just keep on keepin’ on. So, we have to mention just about future plans—Ruthie I want a big smile on your face—Ruthie about a week ago got engaged, so somewhere down the line is a wedding, and I’m gonna dance with that young lady at her wedding, and Daddy’s gonna be right there. And I have full expectations to do that, I don’t know whether it’s next year, or the year after. Her boyfriend’s in med school, so you know, Allan, it’s a long, long haul. But at any rate, we’re making plans. We’re doing stuff.

And you, in Canada, you guys have the summer off, or some of the summer off, and you’re gonna spend time together. So, do you make plans? I mean, how do you see the future, Jay and Maureen? How do you see the future, even while you’ve got this in your blood? 

Jay Connolly:              

Well, absolutely we make plans. And you know, your relationship to the time and the way the disease plays out is a big deal. When I was diagnosed, a week later, there was an article in Canada’s largest newspaper about CAR-T therapy. 

Andrew Schorr:          

Right.

Jay Connolly:              

And I said to my oncologist, I said, “Well, that seems pretty good, can I get that?” and he said, “Well, maybe eventually; probably not,” and then yet, look at how far that therapy has come. I haven’t followed it extremely closely, but it’s my understanding that they’re trying to develop some more cost-friendly options for that, and whatnot. Ibrutinib was just on the horizon at the time; it was in early trials, I believe. And so, when I think of all the medications that I’ve read about over the years, and then I watch in Canada the approval process: ibrutinib (Imbruvica) is approved, and is in the process, and will probably be approved, and so forth. So, there are options, and so, I try to look at the next 20 years. And we – it’s changed our relationship to retirement, we kind of think, “Well, we’ll work another three years, and when I’m about 60, we’ll retire.” We should be okay, it’ll be a modest retirement, but it’ll be an opportunity to go and do some things that we would love to do in a healthy state. We make short-term plans in terms of: we’ve done a lot of bicycle touring, we rode 2,000 miles from Canada down to Denver four years ago on our bicycles, all self-contained; we rode from Ottawa to the Maritime Provinces the year before that.

So, I try to push myself physically because it’s that measure, and it’s a daily measure. I go out for a 20-mile bike ride, and that tells me how I’m feeling.

Andrew Schorr:          

Right, me too. And it’s pickleball in Connecticut and bike riding there, and then I go jogging; right, that’s our barometer. So, Maureen, do you expect to have this guy around for a long time?

Maureen Connolly:    

Yes, I do, and I’m counting on it.

Andrew Schorr:          

Okay.

Maureen Connolly:    

But that’s the difficult thing about being the partner in this: you don’t want to imagine a future alone. So, there’s no point in thinking about it; we’re just planning for a future together.

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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