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Making Sense of CLL: Session 1 Replay

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Published on May 24, 2019

Watch the replay of the morning session of our “Making Sense of CLL: What You Should Know About Treatment, Genetic Research and Available Support” town meeting, as a panel of CLL experts, including Dr. Jeff Sharman, Dr. Jeffrey Menashe, Dr. Michael Choi and Jeanne Schaffer, explore current CLL treatment options and developing research. Leading expert Dr. David Maloney also gives an important update on CAR T-cell therapy for CLL. Additionally, patient advocates Jay Sperling and Christina Fisher, and care partner Alice Sperling join the conversation to share their stories and take us through their journey with CLL. 

This town meeting is sponsored by Pharmacyclics LLC and Janssen Biotech, Inc. in partnership with The US Oncology Network, Compass Oncology, Willamette Valley Cancer Institute and Research Center, The CLL Global Research Foundation and The Leukemia & Lymphoma Society (LLS).These organizations have no editorial control. It is produced solely by Patient Power.

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The Leukemia & Lymphoma Society (LLS) CLL Global Research Foundation The US Oncology Network Willamette Valley Cancer Institute and Research Center

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Transcript | Making Sense of CLL: Session 1 Replay

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:

Okay. Welcome from—where are we? Portland, Oregon. Again, we were here about two years ago. We’re excited to be back in the Embassy Suites Hotel. I am Andrew Schorr, living, as you heard, with CLL since 1996. I actually went to the gym here yesterday, some energy. That’s what we’re trying to do, have energy, quality of life living with CLL and hopefully longevity. 

So, me, 1996—some people here in Portland, and we have about 100 people in the room—so, these are patients, care partners that you’re gonna be interested people here in CLL over the next three hours to learn the latest. I want to thank you for being here I want to thank Pharmacyclics and Janssen Biotech for providing grant funding for this, but they have no editorial control. 

So, what you’re gonna hear is the whole 360-degree view of CLL. We have eminent medical experts with us. We have patients you’re gonna meet, care partners you’re gonna meet. We want your questions. 

We want to thank US Oncology Network, Compass Oncology, Willamette Valley Cancer Institute and Research Center all for being our partners—CLL Global Research Foundation that was started by my former doctor, Dr. Keating, down at MD Anderson, and of course, Leukemia & Lymphoma Society. Thanks for all of them working together to put this on today, produced by our organization, Patient Power. 

Okay. So, you’re gonna have questions and you’re gonna hear statements from the doctors and other patients and they’re gonna talk about different treatments and research and they’re wondering, “What’s right for you?” This is not a clinic. So, you need to speak with your own doctor. 

Hopefully, you have a medical team that you really trust on what’s right for your version of CLL or your loved one’s version of CLL. It’s different for what previous treatments have you had, what might be right now, when might you need it? And of course, we’re gonna talk about clinical trials as well. 

I was in a trial for a combination you’ll hear about. Some of you may have had it, FCR. Maybe we can just get a show of hands. Has anybody here had FCR, fludarabine (Fludara), cyclophosphamide (Cytoxan), rituximab (Rituxan)? Not so many now. But if you went back a few years, most of us had it or had some variation of it, but things are changing. For those of us that had FCR, should we need treatment again, what could that be? Either an approved therapy or something that’s in clinical trials. 

Okay. So, remember, disclaimer—get what’s right for you, talk to your own doctor. 

Okay. Let’s talk about the agenda for today. Here’s what we’re gonna do between now and mid-afternoon Pacific Time. You got a chance to meet. We’re kicking off the program. We’re gonna hear from our medical experts, three eminent physicians. We’re gonna hear about clinical trials as well. We’re gonna briefly in a minute meet some patients.  

Then we’re gonna talk about financial issues and other things related to communication as well, like do you tell your kids? Do you tell your grandkids? Do you tell people at work? How do you think about it? How do you go on? Do you deal with anxiety or depression or your spouse does? How do you deal with all that? And lots of time, about 45 minutes, for questions. 

Okay. Then this is how you ask questions. I want to introduce you to someone who’s been my partner for 33 years, Esther. Grab your microphone and face the…

Esther Schorr:

…hi, there. 

Andrew Schorr:           

This is Esther Schorr and all of us know that we could not do this alone, right? Hopefully, wherever you are here in the room or in the world, you have somebody that’s hooked in with you. Maybe they go to the doctor with you and they can support you. 

When I originally had the FCR, there was a time when in the middle of the night at MD Anderson in Houston, Esther was wheeling me in a wheelchair back to the hotel across the skyway. She’s been with me by my side. 

So, Esther, if people have questions, particularly the internet audience, but folks in the room, what do they do?

Esther Schorr:

Right. If you have a question—if you’re here, jot it down and either pass it to me or to Rebecca, who’s standing at the back of the room. Also, we’ll be going around during the question and answer session and we’ll hand you a microphone and you can ask your question. Then if you’re in the audience online, write to [email protected] 

Andrew Schorr:           

And we’ve already gotten a bunch of questions. 

Esther Schorr:

Right. We’ve already got a dozen or two questions, but please send those. I will have them and during question and answer, we’ll try to get to as many of those questions as we can. 

Andrew Schorr:           

Our friend, Jay Blatt, wants to know about clonal evolution. We’re gonna ask you guys about that. And also, measles, right? What’s the story? Most of us our age had measles. So, we probably have the titer, but let’s see who had different treatments that knocked down your immune system. Do you still have that immunity? Should you wear a mask if you go on vacation to Europe this summer or wherever? 

Okay. If these two folks can stand up, Jay and Alice and Esther, if you could get next to them—why don’t you face that way a little bit so they can see you and we’ll talk. This is Jay and this is Alice Sperling. What is the name of the town you’re from, Alice? You told me what the name is. 

Alice Sperling:

We’re from Philomath, Oregon, which is just west of Corvallis. 

Andrew Schorr:           

And what does that mean?

Alice Sperling:

Love of learning.

Andrew Schorr:           

She was a college professor for many years. Jay was also working at Oregon State in Corvallis. So, Jay, how long have you been a patient?

Jay Sperling:   

I was diagnosed in 2002 and, my first real treatment was 2009.

Andrew Schorr:           

Okay. How are you doing?

Jay Sperling:   

Pretty well right now. I’ve been on ibrutinib for a couple years. I just started IVIG because I was having a lot of—unfortunately, having an awful lot of infections and various oddball things like appendicitis.

Andrew Schorr:           

How are you doing now?

Jay Sperling:   

Good. 

Andrew Schorr:           

Alice, how long have you been my his side with his CLL journey?

Alice Sperling:

Since 2002.

Andrew Schorr:           

You’re a researcher. You’re like all over the internet looking up things, right? 

Alice Sperling:

Yeah. It gave me something to do. I know sometimes when you’re the care partner, you feel a little bit helpless. There’s sort of a line between how can I be helpful without taking over the whole show. He does have a will of his own, believe it or not. But yeah, I’m the family researcher. 

Andrew Schorr:           

Okay. We’re gonna hear a lot more from you. Thank you so much. Esther, if you can make your way to this lady in yellow here. This is Christina Fisher. If you can turn around and face that way so the whole world can see – 

Christina Fisher:         

I’m feeling a little like Vanna White, you know that. 

Andrew Schorr:           

That’s us. So, Christina, what is the name of the town you live in here outside Portland. 

Christina Fisher:         

Boring. 

Andrew Schorr:           

Boring, Oregon. But she’s not boring. So, you’ve been living with CLL how long? 

Christina Fisher:         

Well, I was diagnosed in 2013, but it took about a year to get a diagnosis from my position and I’ve been told I’ve been living with it a lot longer than that. 

Andrew Schorr:           

We should mention her diagnosis—you’ll hear about this—came in a very unusual way, not from a hematologist, not from her primary care doctor, but actually from an ear, nose, and throat specialist. 

Christina Fisher:              

Correct. 

Andrew Schorr:           

So, a very odd journey. Some of you may have had that too. Fortunately, she’s getting good care now. What is your medical therapy now?

Christina Fisher:         

I am on venetoclax (Venclexta) and I have been switched over recently to the rituximab-hyaluronidase human (Rituxan-Hycela) shots. 

Andrew Schorr:           

So, she gets Rituxan, which some of you may be receiving or have received, in a new way. So, we’ll hear about that as well. Okay. Thank you so much. All right. There they are and there are their pictures that you can see on the screen. 

So, now, let’s get down to the nitty-gritty. I want to introduce our medical professionals here. Some of them you may have met before. Some may be your doctor. So, for instance, Jay’s doctor is to my left. This is our friend, Jeff Sharman, who’s from Willamette Valley Cancer Institute and Research Center. Jeff, for years, you’ve had a special interest in CLL and also lymphomas, right? 

Dr. Sharman:   

Yes. 

Andrew Schorr:           

Okay. Why those? 

Dr. Sharman:   

I enjoyed the blood cancers for a long time. As a research fellow, my projects I was working on as a fellow ended up becoming ibrutinib (Imbruvica). So, I very quickly became a CLL doctor. 

Andrew Schorr:           

You are encouraged with what’s been changing? 

Dr. Sharman:   

Absolutely. It is a time really remarkable for the level of enthusiasm that we have in the field because it has changed so much. I really look at 2014 as a dividing line between olden days and new days. We’re only five years into the new era of CLL, and the tools and toys we get to play with to help our patients are really transforming what it means to be a patient with CLL. 

Andrew Schorr:           

Okay. Jeff is involved in research as well. We’re gonna get a window into not just what is approved, including a new approval just this past week, but also what could be coming. So, we have a lot to talk about. 

Next to him is another Jeff, Dr. Jeffrey Menashe, who’s with Compass Oncology here in Portland. Dr. Menashe, you are what we would call very much a community oncologist. You’re not involved in research, but you’re involved in patient care like 12 hours a day, right? 

Dr. Menashe:   

That is correct, yes. 

Andrew Schorr:           

How long have you been doing that?

Dr. Menashe:   

Since 1981.

Andrew Schorr:           

You were doing rounds even this morning.

Dr. Menashe:   

That’s true, yes.

Andrew Schorr:           

He got up very early. We appreciate that. I want to mention that most people get care not at a big research center, although you might or have a consultation there, but get it at a community oncology center. 

Part of what we’re talking about is if you have a Dr. Menashe, who has to cover a number of cancers, and you have a Dr. Choi, who you’re gonna meet in a second, who really focuses on CLL in particular, how are you gonna get them to work together for your benefit? We’ll talk about that too. 

I mentioned Dr. Choi. I am from Carlsbad, California, Esther and I, which is in Southern California, about 30 miles north of San Diego. About halfway there is La Jolla. That’s where there is the UC San Diego, University of California, San Diego Morris Cancer Center. That’s where Dr. Choi is. Welcome to the program. You’re in the lab most of the time, right? 

Dr. Choi:          

Well, sometimes. I guess, yeah, I’m in a center where I’m fortunate to have close collaboration with scientists, a laboratory that’s really committed towards understanding this disease and trying to translate to new treatments. 

Andrew Schorr:           

Okay. And one of the things that he’s working on is a very early drug. You’ll hear about clinical trials along the way. It’s like Phase I, Phase I to II. I know you get involved in that as well very early, which could be something that will pay off for us some years down the road should we need it. We’ll be looking into our crystal ball as well. 

All right. Let’s get started in our discussion of what’s more about CLL. So, there we go. So, making treatment decisions—so, first of all, I want to start with this, Jeff Sharman—CLL is not a one-size-fits-all. How do you know what version of CLL you have? 

Dr. Sharman:   

So, there are a number of important questions embedded in that. It’s a conversation that oftentimes comes up very early in the management of a patient who may come into your office just being told they have leukemia or—that’s actually a common presentation is, “My doctor told me I have leukemia.” There’s this kind of dazed and confused look. 

So, in those initial conversations, I always start with, “Okay, there are four main families of leukemia—there’s acute, there’s chronic, there’s myeloid, lymphoid, and it sort of makes a box plot with four different types.” So, we say you’re in CLL. Most of what you think with leukemia when you see children who are bald, who are really sick, that’s AML or ALL. So, CLL is just a different entity completely. 

I think we’re all conditioned to hear that early detection saves lives, early intervention leads to the best outcomes. That’s what I think the gestalt is when these patients walk into the room, like, “What kind of chemotherapy do I need?” You have to unwind this and say, “Well, you’ve got CLL but having CLL doesn’t mean you need to treat it. You can oftentimes live with CLL for a long time.” 

I often find it’s very reassuring when you go back and find some of these blood tests from four years prior and you say, “See this little lymphocytosis you had four or five years ago? You probably have had your CLL all this time and didn’t even know it.” 

So, when we talk about subtypes of CLL, we get into discussions about FISH testing and IGHV mutation analysis. It can quickly become very overwhelming. So, we kind of try to layer this in as we go. 

Andrew Schorr:           

We’ll walk through that as we go. The point is there’s different testing we do. Dr. Menashe, how important in 2019 with the testing we have—do have to do a bone marrow biopsy where you have to stick a needle in somebody’s hip to look at the cells? 

Dr. Menashe:   

Usually, we do not have to do that. I think we look at people who present with these high white blood, high lymphocyte counts. Usually, we can define it just by tests on the peripheral blood. Sometimes, there are some variants that occur, which sometimes you might have to do some ancillary tests, imaging or even bone marrow, but usually not.

Andrew Schorr:           

Okay. Dr. Choi, people have heard about different mutations or unmutated. What are we talking about when we say mutated or unmutated? What does that mean? 

Dr. Choi:          

Yeah. So, as Jeff was saying, there are many tests that can help basically stratify the aggressiveness of the disease. One of those is to sequence the antibody gene in the cancerous B cells, so, not necessarily the genetic tests of what you were born with, but what has turned or what has happened to the leukemic cell. The VISTA antibody gene is one that normally gets mutated as a normal B cell matures. 

So, if we find out if the CLL has a mutated version of that gene, we can kind of say that cell that turned into CLL was a little bit more grown up. In my mind, that makes it a little bit slower to progress, a little bit less aggressive, whereas a cell that has an unmutated antibody gene came from a little bit more immature B-cell. I think of that as like a teenager that’s a little bit less predictable, a little bit more aggressive.