Patient Perspective on the Difference Your CLL Care Team Can Make

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Topics include: Living Well , Self-Advocacy and Empowerment , Patient Stories and Understanding

Getting an accurate diagnosis and suitable treatment begins with finding the right doctor. How can finding the right doctor also contribute to a patient’s confidence and quality of life? During this Patient Café segment, Patient Power founders Andrew and Esther Schorr are joined by a panel of chronic lymphocytic leukemia (CLL) patients, including Michele Nadeem-Baker, Jeff Brochstein and Jeff Folloder, to discuss how self-education, getting a second opinion and choosing the right health care team can make all the difference when it comes to just getting treatment and living well with CLL.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc. and Pharmacyclics for their support.

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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.

Esther Schorr:

A few of you referenced having a wonderful medical team and finding a specialist and educating yourself.  So finding the right doctor, educating yourself about the disease, what did that do for you?  I mean, did it help you with just the emotional part of it?  Did it help you feel more in control?  Why was that a good thing? 

I was—put my hand out, and he said, no, I want to give you a hug, and he's done that with you too, as Dr. Keating has.  What it did by getting the right doctor is I think gave me, and I think you too, confidence.  And this ties in to Jeff Brochstein as well.  Confidence to go on with your life and at that age, earlier age, said go ahead and father a child, which is a big deal, right?  That's not just a short-term thing.  And I'd be interested in what Jeff Brochstein says, but I know you and I, Dr. Keating gave a hug and said, go have your baby, which here we were in a major cancer center.  Go have your baby. 

And Olga—and us getting pregnant was just all the more of a present on top of that, so life is good in that regard. 

And I can remember telling Dr. Keating, okay, you need to know that I smoke an occasional cigar, maybe an occasional briar pipe.  And he asked me, well, how often do you smoke, and I said, ah, three or four times a month.  And he said, okay.  And I didn't quite understand what okay meant.  And then I kind of confessed, okay, you need to understand that most evenings I have a whiskey or two. 

And he asked me what type of whiskey I drank, and he complimented me on my taste.  And he actually stopped me and said, I am here to help you live a good life, not make you miserable.  That's where we were focused on.  My first doctor just wanted to start treatment.  Dr. Keating wanted me to live well, so instead of just getting a, quote/unquote, gold standard of treatment, Dr. Keating was focused on getting me the best treatment.  So that was sort of my start to living well. 

So we're blessed now with a range of—a whole array of treatments, Jeff, you recently, Jeff Folloder led a town meeting in Jeff Brochstein's home town recently where you spoke about that, that there are more treatments either approved or in research than ever before.  So part of it is what's your situation, and Michelle talked about unmutated and 11q, what treatment lines up with that clinically, but also what are your goals?  Somebody who has FCR might be able to stop treatment after six months if it's right for them and if it works for them.  Some people may—there's some idea with venetoclax (Venclexta) combined with obintuzumab (Gazyva), maybe you'll be able to stop after two years.  With ibrutinib (Imbruvica) you're taking it long term. 

So what's right for you?  And I think all of us need to take a look at our lives, have a conversation with a knowledgeable doctor and state our goals.  What are our personal goals for what works for us.  Michelle, I mean, you may have things you want to add too. 

Certainly.  So when I went on the clinical trial I'm on, which some people know as IFCR, ibrutinib and FCR, I did not know at the time nor do I think they knew long-term what would happen, but here it is.  I can't believe it.  It's three years this month I've been on it.  I've been on ibrutinib for three years now, and I will be indefinitely until either it stops working or something better comes along, and I am able to live life.  I am looking of course, as we all are, for a cure someday, and I'm still not MRD negative.  That would be wonderful.  That would be great.  But right now I'm holding steady, and that's a good thing.  So my goal is to be able to live life as healthy as I can, and that's what this is doing right now.

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 September 9, 2019