Advocating for the Latest CLL Treatment Options

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Topics include: Living With Chronic Lymphocytic Leukemia

The first program in our Partners series features chronic lymphocytic leukemia (CLL) expert Dr. William Wierda, from The University of Texas MD Anderson Cancer Center, CLL patients Michele Nadeem-Baker and Bob Azopardi, as well as Patient Power founder Andrew Schorr. This series promotes meaningful conversations between patients and incorporates an expert’s perspective on important subject matters for those living with CLL. During this “Advocating for the Latest Treatment Options” program, the panel discusses ways patients can best partner with their healthcare team, advocate for themselves and contribute to treatment decision-making. Watch now to learn more about getting the CLL care that’s right for you. 

This program is sponsored by Pharmacyclics.

 

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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:

Hello and welcome to Patient Power.  I'm Andrew Schorr, and welcome to our first in our Partners series of programs and thank Pharmacyclics for helping sponsor these programs through educational support. 

What's Partners all about?  Well, I'm in California, long-time CLL patient, and I've been down the road, and I've had various doctors I've had to work with so that hopefully I get the care that's right for me.  And I'm joined by two other veteran patients and a leading specialist, and we're going to discuss how you can play a strong role in your CLL care in, let's face it, a changing environment in CLL.  So I want to interview my friends who are with us today who are going to help us in this discussion, and we hope in the end it will help you get the care you need and deserve. 

So first let's go to Valley Stream Long Island, just outside New York City.  Bob has a party.  Bob, you've been living with CLL how many years now? 

Bob Azopardi:

I have it since 2000, so it will be 19 years in April, 19 years, a long time. 

Andrew Schorr:

And, Bob, it started in Florida with a community oncologist, and over the years at various times you've had so many different treatments.  You've been a really sick puppy some of the time, but today in one of the modern medicines you're doing well. 

Bob Azopardi:

Yes, Andrew, that's for sure.  I started with a regular oncologist, and the key to the whole thing was moving forward to be treated by a specialist, and that's what turned it around for me. 

Andrew Schorr:

All right.  We're going to talk about that.  And we should mention you've been in a clinical trial.  It's helped a lot too.  Okay. 

Let's skip up to Boston, Michele Nadeem-Baker.  Some people have seen her on some of her Facebook Live programs that we do at Patient Power.  Michelle, you've been living with CLL how long now? 

Michele Nadeem-Baker:

I've had it, I was diagnosed towards the end of 2012, so a little over six years I have had it.  That I know. 

Andrew Schorr:

And how are you doing? 

Michele Nadeem-Baker:

I am doing very well.  I just had a big day of tests and meetings with my oncology team at Dana-Farber, and I am actually doing great.  I'm on a clinical trial as well but a different one than Bob is on. 

Andrew Schorr:

Okay.  All right.  I'm so glad to hear it.  Now it's not without you know, the issues that some people facing CLL.  Michele has dealt with fatigue.  Sometimes you've had skin issues you've been concerned about, all of that.  But both these people that I've introduced you to, and I guess me too, we've played a great role in our care.  Okay. 

So Bob mentioned a magic word, CLL specialist.  Let's meet one of our favorites, Dr. Bill Wierda who is the Medical Director in the Department of Leukemia at MD Anderson Cancer Center in Houston, one of our foremost centers.  Bill, thanks for being with us once again. 

Dr. Wierda:

Well, thank you for having me, Andrew. 

Andrew Schorr:

Okay.  So we call this the Partners program.  What's your view of partnership with patients today, Bill? 

Dr. Wierda:

What's my view of partnership with patients.  Partnership with patients for me is having patients understand their disease, having me work with them through the course of their disease, working with them and allowing them to participate in the discussion and contribute to the decisions that they need to make through their treatment.  So guiding them through their treatment and directing them in the best treatment to get the best outcomes that they can for their disease. 

Andrew Schorr:

Okay.  And you don't object at all to what I would call a smarter patient like the three of us here? 

Dr. Wierda:

No, not at all. 

Andrew Schorr:

Okay.  So, Bob, you said getting to a specialist, and you learned along the way to advocate for yourself.  From what you know in CLL today why do you think that's so important? 

Bob Azopardi:

The time that I spent with a regular oncologist was like a—it was difficult because it was a constant routine of chemotherapy, etcetera, etcetera.  To get with a specialist is completely different, you know.  And today it's not that difficult, because a new patient has the social media and Patient Power to begin with to research their disease and at least move forward to someone who deals with that on a daily basis. 

A regular oncologist deals with all different types of cancer.  The CLL specialist, that's his job.  This is what he gave his life into.  This is what he does on a daily basis, and he sees many different CLL patients.  So with that and then the objective of possibly getting onto a clinical trial you need to be with a specialist, and that's exactly what happened with me. 

Andrew Schorr:

Well said.  It probably saved your life given how sick you were. 

Bob Azopardi:

No doubt. 

Andrew Schorr:

When he went into his—Dr. Furman, when he went into the doctor, specialist where he ultimately was in a clinical trial you went in in a walker, right? 

Bob Azopardi:

Right.  I was with a walker for 22 months, and I also had my wheelchair with me.  And when the prognosis came down from Dr. Furman and the clinical trial came up I—at first I wasn't really in favor of it, but I guess we'll discuss that further also, and I was told I really had no choice in the matter.  So I took it, and it was a long road ahead, but it turned my life around.  Turned my life around. 

Andrew Schorr:

And you have a great boat.  You go out on Long Island Sound and all that. 

Bob Azopardi:

Yes, thank God.  It was the—first trial I was on it gave me my life back.  And, Andrew, as you know, prior to Dr. Furman I had seen many upscale physicians and especially one who was well renowned, and again by seeing Dr. Furman and having that clinical trial offered to me, you know, was it.  I wouldn't be here if it wasn't for that. 

Andrew Schorr:

Some of it is timing for sure, what's available and where. 

So, Michele, you, of course, also go to a major center, Dana-Farber, and have another renowned specialist Jennifer Brown, but you talk to a lot of patients as well.  So what would you say to people about the importance of being a self-advocate wherever you get care? 

Michele Nadeem-Baker:

If I hadn't been a self-advocate, and as Bob was just saying, if he hadn't been, we would not have ended up with potentially the best treatment that is out there at the time.  So one of the things by being, by advocating for ourselves, we were able to find out some of the options that are out there.  When I was first diagnosed, even in 2012 there wasn't that much on the Internet that was all that credible.  That's how I found you, Andrew, and Patient Power.  You were just about one of the only few at the time that had anything that was truly credible and backed up by the medical community, the leaders in the community.  So that helped guide me what to do. 

I was from Boston to begin with, so I knew of Dana-Farber.  If it wasn't for Dana-Farber, I would have gone somewhere else though if I wasn't familiar with it.  It is so important to get a specialist and one of the leaders in CLL for us, because that helps us, at least for me, helps me have more confidence in what my oncologist is doing for me. 

In Florida, it was a general oncology/hematology department, and I just did not have confidence in the care and the way the diagnosis was even given or in the doctor.  I knew it wasn't going to work in a partnership.  I would not have had confidence had he suggested any treatment. 

So I think it's important for patients to also not only research what they have in the options, but to have confidence in, as Dr. Wierda was saying, the partnership with the doctor.  From the other side, from the patient's side, you need to have confidence in that partnership. 

Andrew Schorr:

So, Dr. Wierda, I don't want to be disrespectful to community hematology/oncologists.  They're very devoted, and certainly there are some that take a special interest in CLL, and you spend a lot of time also in medical education trying to help get everybody up to speed, but how has CLL changed?  I mean, it used to be there was sort of one-size-fits-all approaches, going back to chlorambucil (Leukeran).  It's changed dramatically now.  So is it the complexity and maybe even the speed of change that makes it harder?  What's changed? 

Dr. Wierda:

I don't know that there's been a lot that's changed.  We've gotten a lot of new drugs, and there have been nuances about managing chronic lymphocytic leukemia versus other types of leukemia all the way along since I've been involved in the field. 

I think the comment that I would make with regard to the community oncologists, community oncologists work very hard.  I went through the medical education process and trained as a hematologist and oncologist, and you have to know a lot about a lot of different cancers.  And over the last 20 years, treatments have become super specialized among and across all of those cancers.  The community oncologists have a huge task in terms of keeping up, and they for the most part will keep up very well with the common cancers, breast cancer, colon cancer, lung cancer, the types of cancers that they see a lot of in their community practice. 

CLL, while it's the most common type of leukemia is a relatively uncommon disease, so it's another disease that they will take care of, they can sort of keep up, but the nuances and the data that's come out and the new treatments for CLL have made it—it's hard for a community oncologist to keep up with everything. And so for that reason it's very important I think for patients with CLL to get a consult and to get an opinion from a specialist, particularly at the time that they are discussing treatment with their oncologist. 

Now, the one thing I would say, I was just this weekend at a meeting with a whole bunch of specialists, specialists from New York, from Boston, from all across the country and Michael Hallek was at this meeting.  And even among the specialists you will get different opinions and different approaches to managing CLL.  So I think it's important to talk to a specialist.  If you start going from specialist to specialist, and some patients do that, you will realize that there are different approaches, and you have to be sort of cautious.  And that's where sort of this partnership is important and what's your philosophy and what's important to you in terms of management of your disease becomes very important.  So I think that's something to consider. 

Andrew Schorr:

Right.  Well, I've had that very discussion.  So my specialist now in San Diego, Bill, you used to work with, Tom Kipps, we had a discussion about infused therapy versus oral therapy.  What was right for me?  Which would be effective?  Which would be more convenient?  Which would be covered by insurance and to what extent?  So there are a lot of discussions that you have, but I think part of what Michele and Bob and I would say is you need to find someone that have confidence in and also check in with a specialist or two to get their take on the range of options. 

Now, let me talk about the range of options for a minute.  So, Dr. Wierda, you're at a major research center, and in New York City, Bob has gone to major research centers and Michele in Boston, and so often that's where there are trials as well.  So part of the discussion today is not just about an individual approved therapy or a new combination, it's also about something that could be in trials as well.  It's like it could all be laid on the table, right?  Both experimental on one end and standard old therapy on the other, and that's part of the discussion, isn't it?

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Page last updated on September 4, 2019