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Facing CLL Together: Session Two Replay

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Published on October 8, 2019

In the afternoon replay of our “Facing CLL Together” Town Meeting, viewers learn about tools for education and advocacy, supportive resources and strategies for managing life with chronic lymphocytic leukemia (CLL). This program features renowned experts Dr. Farrukh Awan, Dr. Philip Thompson and Dr. Nicole Lamanna discussing the latest research, as well as an inspiring group of patients and care partners sharing advice on living with CLL. In the final portion of the program, an audience of patients and their loved ones pose their questions to the CLL experts in a Q&A session.

This program is sponsored by AbbVie Inc., Genentech, Inc. and Adaptive Biotechnologies. These organizations have no editorial control. It is produced by Patient Power and Patient Power is solely responsible for program content.

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What a wonderful time we had! We were excited like fans at a rock concert, but our rock stars were the medical experts.

— Lynn, CLL town meeting attendee

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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.

Carol Preston:

Welcome back everyone to the second half of our town hall meeting on facing CLL together. I’m Carol Preston, your host for today, and I’ve had CLL for 13-and-a-half years. But right now, I’m gonna introduce two of the most special people in the Patient Power community, the founders of CLL, Andrew, and Esther Schorr, who are joining us via video from Maine, and we’re looking forward to seeing them.

Andrew Schorr:          

Andrew Schorr and Esther Schorr, on the coast of Maine where were chilling out here but watching this program.

And I was diagnosed in 1996 and I had treatment, after four years of watch and wait, in 2000, in a clinical trial. Gave me a long remission and then I needed treatment again about two years ago, in 2017. And I just take every day as it comes. How about you? 

Esther Schorr:

Yeah, I mean that's what I do now as well, Andrew. And I can't say that is was easy at the start with small children and hoping to have another child. It was disruptive to our life, but, you know, we both—through counselling, and me through some additional things that I needed to do for me, in order to be there for Andrew, things like the counselling...

Andrew Schorr:          

...yoga.

Esther Schorr:

Yoga. Some medication. We've really spent the last 20 years or so, on a journey that's had its ups and downs.

Andrew Schorr:          

Right.

Esther Schorr:

But honestly, we're just so thankful that there are new medicines. 

Andrew Schorr:          

And more coming.

Esther Schorr:

And more coming, exactly. 

Andrew Schorr:          

And also, we know that what we have is today.

Esther Schorr:

Mm-hmm.

Andrew Schorr:          

So, I don't know if my white count will shoot up, something else will get screwed up in my blood. I'll get terribly fatigued. And I'm confident with the right healthcare team and the right medicines that are really personalized to me, that I can still live a pretty long, full life.

Esther Schorr:

Well, and that's exactly what I see going on. As a care partner I feel like the best thing that I can do is just be very present for Andrew, and be supportive, and take care of myself as well. I think anybody who partners with someone who is dealing with a serious diagnosis; you got to think about yourself too. And you work together.

Andrew Schorr:          

Communicate—communicate—communicate. 

Esther Schorr:

Exactly.

Andrew Schorr:          

And what will happen, will happen. If you have the right healthcare team and living every day CLL can be pushed to the background so often. And I'm confident that new medicines and a discussion with our doctor will help us get through whatever may come.

Esther Schorr:

I agree.

Carol Preston:

Love hearing from our leader, and again, to make note that Andrew is in Maine, he was in Sweden earlier this summer, he is going to South America in a couple of weeks to Columbia, and so this—he means it when he says you gotta push that CLL to the back burner as much as you can, when you can to live your life. And everybody sitting up here, and all of you sitting in this in-person audience and everyone online we know is doing his or her best to do just that. So, now what we wanna do is just us patients, just us chickens up here to talk a little bit about living with CLL, the kind of support you get, the resources that you have taken advantage of.

And let me reintroduce our wonderful patient advocates we have Lee Swanson from San Diego, my parents lived there for decades, so I love that city, and we have Al and Teresa Hollis who are from the Dallas area, so welcome back to all of you. And Lee, let me start with you about living with CLL; you are here, you’re tall, you’re strapping, you’re energetic, nothing can keep you down, and you’ve been living with this almost as long as I have. A year after I was diagnosed, you were diagnosed; so, I know it’s a big generic question, but tell us a little bit about living with CLL. And living with CLL in 2007 when you were diagnosed and when you were in treatment and then in treatment again; may be different than how you’re living today. So, maybe talk about the different episodes of living.

Lee Swanson: 

I’ve been fortunate, I guess, that I haven’t really had physical symptoms. My lymph nodes were never overly large; I wouldn’t know a lymph node if it walked in the room. I don’t have the kind of debilitating fatigue that people talk about. And so, in some respect I’ve often said I wouldn’t know I had this disease if they hadn’t told me; but for a long time, I got up every morning, looked in the mirror, and said you have cancer. To me, because I don’t feel it physically, it’s a psychological burden to me, and I had to overcome that. And I don’t know that I really did until I finished the venetoclax (Venclexta) trial, and was MRD-negative; and felt like I could take this from the top of my mind to the back of my mind. 

Which is only that far, but—it’s a giant leap for—well anyway. And I, to a large extent I had gone a long time, for instance since diagnosis, we didn’t go anywhere. Andrew and Esther are going all over the world, I kind of stayed close to home, and if I did go someplace, I had a prescription for antibiotics that I filled and put in my shaving kit and took with me. I can—it’s nice to address a group like this and not have to explain why I carry Purell. And so, but a couple of years ago we went to Europe for the first time in our lives, my wife and I; and we were in Barcelona just this summer, and we feel like we can—I mean San Diego is not a bad place to be, so I didn’t mind that. But we felt like we could get out and do some things.

Carol Preston:

And is your plan that you will do more things now that you’ve taken that leap?

Lee Swanson: 

Likely. I still have to be around for the grandkids, because they have to get to soccer practice; but yeah, we don’t have a list, but we’ll do things as they come up.

Carol Preston:

I found before we move on to Al, and we’re gonna get back to all of you. We have a nice chunk of time to discuss this, that was what I tried to do was to compartmentalize, you talked about we’re CLL, what space it takes up in your brain. There isn’t a day, 13-and-a-half years later that I don’t think about CLL, that it doesn’t come into my thinking, but I feel very strongly that it’s compartmentalized. Obviously, today, the disease for me is front and center, because that’s what we’re talking about here at this town hall. But on a day to day, and especially when I was working, and I would do eight-hour workshops, never would give it a thought. So, that, to me, was a big step forward; and I was able to do a lot of traveling over the years.

But, and I will mention this, I did not mention this in the opening; in January of 2018, I was diagnosed with a second cancer. I had to cancel a trip; ironically, to Morocco, I was diagnosed with a soft-tissue sarcoma; which, as rare as CLL is, I don’t know what you—this is way up in the stratosphere, but was successfully treated with surgery and radiation. I was lucky it wasn’t attached to the bones, it wasn’t attached to an organ—and so now I have two little compartments in my brain, but it’s one step forward, it’s one foot in front of the other. So, Al, you have been a CLL patient, remind me again how many years for…?

Al Hollis:         

Just slightly less than two years.

Carol Preston:

Slightly less than two years. You’re a newbie!

Al Hollis:         

Pretty much. 

Carol Preston:

Happily, and you and Teresa very wisely said, wait a minute, we’re learning that there are things other than chemotherapy to treat. So, in the last two years, because you’ve said I’ve always been a very healthy person, very active; how have you been living your life? What has changed? And what has not changed?

Al Hollis:         

That’s a good question. Rewind back to 2017 into at least the first half of 2018; I’m very, very physically active; I was running 10 to 12 miles a week, I was doing 75 to 100 miles a week on my bicycle, and I was in the gym twice a week. And so, we were moving along, and things were going great, I was feeling great, feeling awesome! And then you get the C diagnosis and your jaw drops, and you think I still felt pretty darn good. Well, the wheels came off about mid-year, and I thought okay, let’s get through this, let’s get this stuff done, let’s get through this treatment, so I can get back to what I was doing before.

And I guess that’s probably been the biggest disappointment is that the distances and the time—because I was running at the top of my age class on 5Ks and 10Ks and you know anybody that does 100 kilometers, or 100-mile bicycle is pretty amazing. And I was really feeling good about all that; post-treatment let’s go through—let’s get through the eight rounds that I went through on treatment. I’m thinking, okay, I’m through this, and we’re ready to go. Well, today, and my last treatment was in April, I’m still able to do the things that I did before but not the times or the distances. So, I’ve had to step back and say, okay, this is the new normal.

What was normal was all those many miles and distances and hours in the gym. I’m having to adjust to a new normal; cycling is about a third of where it was before; if I can get out and run two miles at a time, I’m good. Physically I’m good with that, and I’ve had to make that physical adjustment by saying okay; life’s different now, but in many respects it’s not different; it’s just a new normal. And so, as I get used to a new normal it is getting better. And I can continue to push myself physically, mentally, and emotionally, but I have to realize I step back some and say okay you may not advance you may not make the giant steps that you might have been able to make before because it’s a new normal.

Carol Preston:

Still one foot in front of the other, and let’s—Teresa I wanna ask you because we heard Esther Schorr mention and Andrew, of course, has been living with CLL and he has a second cancer an MPN as many of  you know for more than 20 years, and she said it hasn’t always been easy. And they turned to family and some professional counseling to get through this; Andrew was in his 40s when he was diagnosed. So, tell me as the care partner and as Al’s staunchest patient advocate what was whirling about in your brain when you heard this diagnosis, and you were starting to learn about this disease and how to manage it.

Teresa Hollis: 

Well, I guess my first thought was this is what we have to face, so we need to reorganize our responsibilities so that I can take more off of his shoulders and make life easier for him.

Carol Preston:

So, what were some of the things that you did? How did you reorganize?

Teresa Hollis: 

The first thing we did, we were living on—our home was on a acreage lot, and there’s a lot of maintenance for that; and he found out in February, I guess, was the official diagnosis, so by the end of February I had a realtor lined up and I said we’re selling this place, we need a smaller environment that if I’m the only one doing everything I can do it. So, a year later, we had accomplished that, and now we’ve been in a smaller property that’s now been just a year, so that consumed quite a bit of my time, which was healthy for me to stay busy so I wouldn’t keep thinking. Because I had just retired, I was retired two weeks when he came home and said, well, you know, I got a problem.

So, what I thought I would be doing in my retirement was different, but I felt like there was a purpose to it; so it gave me motivation to do it. The other thing, I guess I was trying to figure out because he’s not a shy person, and very active—how I can grab hold of the tail of the hurricane and help him accept that we are gonna have a new normal; that we are gonna have slower days. And accept that it’s okay that people know; because that was something—he still was working and didn’t think it was a positive thing for everyone to know that information. And even our children, he was reluctant to tell anyone.

I said, well, you know, it doesn’t mean they’re gonna treat you differently, and we may find some support there. And, in fact, that’s what happened; and I think it’s a blessing for us having had told our children it’s given them time to adjust to the fact that this very patriarchal person in our life is gonna have days where he’s a little off his game.

Carol Preston:

So, how involved—let me start with the Hollis’ and then come back to Lee; was your family involved in care, or were they? Was it just their we’re gonna support you whatever you decide to do; or did some things change for your family as well? Your kids in particular.

Teresa Hollis: 

I think probably they were kept at a distance, that was his preference. I went with him for all of his treatments, our daughter usually called because she knew where we were that day; she was how’s he doing did he get—but as far as them coming with him back and forth, or any of that, he didn’t want them to be involved, to worry. That was his concern that if they saw him off his game, they would worry; so he still, from the very beginning, no matter how bad he felt, if they would ask him—we could have a houseful of people with children screaming all over the house, and he’s just sitting in a chair oblivious to all the activity, and they’re going to be is he okay?

What’s wrong with dad? And I said well go talk to your dad, they would say how are you, daddy, he’d say I’m fine, I’m great no problem, everything’s good. So, he never really shared with them what I knew.

Carol Preston:

And so, Al, if you had it to do over, might you share more?

Al Hollis:         

Yeah, I think so. The more you’re into the new normal—the more I’m into the new normal—it’s really not a scary thing, it’s not a death sentence, per se. So, the more people that you get involved, the more I’ve gotten folks involved in the overall process; not the day to day stuff but letting them know hey I’m doing good, the treatments are working well, I’m feeling good, I’m past my treatment, everything is cool. And it’s surprising how many—and for me, I’m pretty stoic in that regard—it’s surprising how many people that are on your team that you don’t know that are there. And once you kind of turn that corner and maybe relate some of the things that you were going through; it’s amazing how many people have been through something similar.

Or they’re unbelievably supportive of what’s going on with you, and they’re constantly saying hey, how are you doing? How are things happening? And you know, it doesn’t get old—it really does—I think it does after they continue to ask you over again how you doing? I don’t mind that because whenever a friend says how are you doing, they really mean it; and they’re really sincere about wanting to know. So, yeah, here I’ll probably, in retrospect, I would do that part of it differently.

Carol Preston:

Yeah. And I just—you may recall at the beginning of our town hall today I mentioned that it was seven-and-a-half years before I spoke to another patient, it isn’t that—my family knew, my closest friends knew, but I just felt that to be normal, to live life the way I had lived it is that I should just keep going the way I was going. And really learned—as I said came to realize man you can just learn so much more, you can ask better questions when you have that kind of support without waving the flag about it. Lee, how about you? Did you share? Not share? Evolve as time went on? 

Lee Swanson: 

Well, initially, I thought nobody really needs to know this. Initially. I left that first doctor’s appointment, called my wife obviously and what the hell we gonna do now? And but I felt generally that I didn’t look any different, I didn’t really feel any different, people didn’t need to know, why bother with that. But I worked in television news for 30 years, and so if I find out something, I go door to door and try to tell people. And so, I couldn’t keep it to myself, and I’m glad I didn’t because everybody I talked to was very supportive, and curious and interested, and I felt better having them ask. And my wife has gone with me to most appointments and sat through chemo with me, and it’s been a team effort.

Carol Preston:

It is a team effort. And we don’t necessarily need to pan the audience, but I would like to ask for our in-person audience, a show of hands of people who have perhaps felt the same way we all felt at the beginning that I have this disease, I’m not exactly sure what my trajectory is gonna be, and so I’m just not gonna talk about it. Can we get a show of hands? We have half to a little bit more than half the room who felt that way. Probably a normal gut reaction, I’m thinking because nobody—we’re all very active, busy people and nobody wants to think that they’ve been stopped in their tracks for any reason, so why let on? 

I did have to let my office know, because I was actually traveling in between chemotherapies, so I said I just wanna let you know I may not be able to travel that week because I’m doing X. But they were great; I mean my boss and I’m wondering outside of the family in terms of support said if you tell me you can do it, then I will take your word for it, we’ll give you the assignment. Because as a consultant I would go where the patients—ah, the patients, I am the patient—I would go where the clients are, they weren’t just coming to an office, I wasn’t just sitting in an office and doing workshops with them, it did me—he says if you tell me you can do it, then you’ll get the work. And that was great comfort, and so then I was more comfortable letting the office know I can do it these three weeks, I can’t do it this week.

Moving forward. So, that was actually a good thing; you learn slowly but surely, and Al did you wanna…?

Al Hollis:         

I might interject here, for those of you who are close by, there’s a local CLL support group; and from a personal perspective, I’m not a joiner, doing something like that was not really of interest to me, until I needed to get interested in it. And once involved in the local support group I found an immense amount of support, immense amount of information, and a lot of comfort in knowing that I’m not the only one going through this, I’m not the only one feeling at the end of the day that you just when you hit the floor is there any lower than going below the floor? Because you’re so tired and you’re so physically exhausted, it’s comfort to know that there are other folks going through the same thing at the same time.

At least Carrie is here in the audience, she’s some local folks, for your international audience look for, if you can find one, a local support group. It’s amazing what you can learn, it’s amazing what you can do, and really in essence, and I’ll go back to what the docs were saying a while ago; knowledge is power, but understanding is superpower. When you begin to understand what’s going on with you and what’s going on around you and with the team you’re working with all of a sudden, it turns a black and while world into color. So, that support group helps; and obviously, the docs help too, but really reach out to your local support groups because they can just be absolutely awesome for you.

Carol Preston:

That’s a great tip. I never did a support group; you didn’t do a support group? Or did you?

Lee Swanson: 

I did, not religiously, but there is a group through UCSD that meets monthly, and it was hard to go to when I was working because they’d meet a little bit too early in the day, but I went to as many of them as I could, and I haven’t in some time now.

Carol Preston:

It’s interesting you went off the pill, that’s something that needs to—when you no longer had to take venetoclax, it’s as if you don’t have CLL and maybe this support group.

Lee Swanson: 

Well, in a sense, I mean it’s like I say, it’s still in the back of my mind; but I think that I figured out what I’m doing with it, and what it’s doing to me and where we’re going here.

Carol Preston:

And, of course, the flip side of that is for those of you, for those of us if we are on an oral medication if we reach that heralded day of going off, not needing it anymore, is it possible that we can help others? So, that’s something to think about too. And, Lee, that’s what you’re doing right now. You mentioned that you were in television; you were a news producer for 30 years; so, outside of your wife and your kids, how did you handle that? Because you needed to travel all over as well.

Lee Swanson: 

No, I was in local news I was pretty much at the station, and I—so no, I wasn’t traveling at the time particularly. But I let people at work know, they were in the same boat I was; what is this, and what are you talking about? Hmm. And so, we’d have those discussions, but generally they were just—just wanna know how I was doing. And you have those two discussions; you have the people you meet in the hallway and go hey how are you, fine and you’re crossing in the hallway, and all they wanna hear is fine, how are you? And then you have people who say, no how are you? Really! And that’s what matters.

Carol Preston:

Yeah. I’ve had it before as well. Teresa?

Teresa Hollis: 

Speaking of that, Alan’s immediate supervisor he told him because of the time that would be required to go for treatments, and it wasn’t very long after that that he came home and told me that his boss wanted me to join the two of them for lunch. And I thought he’s gonna cut him off, he’s gonna cut us, we’re done! And I went in there to sit down with him, and it was so sweet, he said I just want you to know that I want you—talking to me—I want you to know that whatever he needs, we’re there; if he needs to go part-time, whatever, and if he’s not doing what the doctor says, you call me and tell me. And I thought how special; what a great boss to have in a time like that.

It was really one of our best memories for that time period.

Carol Preston:

And Al you’re retired now? 

Al Hollis:         

Oh, no.

Teresa Hollis: 

Still working, same great boss.

Al Hollis:         

Same great boss, I wouldn’t give him up.

Carol Preston:

Oh, that’s terrific. That is terrific. So, you mentioned about finding a support group. What is the best way to find a support group? Because sometimes you can Google CLL support, it may not be there. So, what is the best way to do that?

Al Hollis:         

I think, and Elise correct me if I’m wrong, I think I found it through the CLL society. That it was the connection there; and there’s a way to window through there and find your local group, and it posts meetings and contact information and things of that regard, so it actually started with that particular website, and then we were able to make contact. And at that time, when I was first diagnosed; the meetings were a little bit more sporadic, they’ve become more consistent, she’s done a exceptional job of keeping good continuity, and good locations so we can attract the entire metroplex. For those of you who are international, you don’t realize—I can drive for three hours and still not be out of the Metroplex sometimes.

So, it’s a large place and trying to find a meeting space that’s reasonable; she’s been able to do that. But once you find that support group you should be able to tap into that and really sincerely take advantage of it.

Carol Preston:

And perhaps another way to do it if you’re living in a major metro area, as both of you are, you’re in San Diego you could call UCSD, and you can call—someone somewhere they have all these advocate and support services. I suspect that both our in-person audience and online have lots of way to find support groups if that is your aim. You can call your place of worship, a lot of times they have support groups as well. Now, Lee, you were in a clinical trial, yes?

Lee Swanson: 

Mm-hmm.

Carol Preston:

All right. So, tell us—and some of our certainly in-person audience and certainly for our online audience have also been in clinical trials, many of which are ongoing; tell us—it was after relapsing you decided to get into the—was it suggested to you? Did you ask? What were your concerns?

Lee Swanson: 

Well, when we got to the point where we were talking about treatment again, Dr. Kipps said well, you have several options, there’s this, and there’s this, and there’s this, and there’s—and he was involved in the Murano Trial as one of the principles, I believe.

Carol Preston:

Can you tell us what the Murano Trial was?

Lee Swanson: 

That’s venetoclax and rituximab (Rituxan). Six rounds of Rituxan, and then venetoclax for two years.

Carol Preston:

Right, which is many of you know, is the monoclonal antibody.

Lee Swanson: 

And he couldn’t say you ought to do this, because it was a trial it had to be my decision, which is really difficult to understand, or grasp. You’re sitting there with the doctor, and he’s saying well, what do you wanna do? No, no, no! You sit here; I’ll sit there, you tell me what I’m gonna do. And a trial is kinda scary, because it’s a trial; at the same time I knew I’d read literature, I’d try to keep up on what’s going on; and I knew I certainly wasn’t patient number one, this had been going on for a while, and so, but even at that, there’s no history to say this is what’s going to happen five years later because you did this today. And so, it’s kinda scary, but he…

Carol Preston:

…did he shepherd you in any way? 

Lee Swanson: 

I think, yeah, I think…

Carol Preston:

…I’m gonna borrow from Dr. Lamanna, did he shepherd you?

Lee Swanson: 

No, I think that’s the right term, and we looked into it, and I was eligible from whatever the parameters were; I’m not even sure exactly what they were, but I fit the description. And we went forward. And, I don’t know, I’m happy I just thought when I started this, this is gonna work, I’m going to get—there was a percentage of people that got MRD Negative and a percentage of people that got a lesser resp—everybody got, I think, virtually everyone had some level of success with the trial. And I just felt it’s just gonna work; I’m gonna be one of them that it’s gonna work for. 

Carol Preston:

Was this—and just I’m curious, was this what they call a random, double-blind? Because and our panel can correct me on this; in cancer trials it’s not a placebo, but it’s whatever the current gold standard is versus the medications or the treatments that are on trial. So, was everybody on venetoclax plus rituximab? Or was it half and half and you were on venetoclax only?

Lee Swanson: 

I was on the venetoclax, I don’t really—I don’t know what all the qualifications or what the parameters were for who was doing what. But—and you know, it was—the trial had been stopped at one point because of tumor lysis syndrome, the pills worked too well, they gave people a large dose too soon, and two or three patients, I believe, died; and so they stopped the trial and developed a ramp-up of dosage which I believe is still the way that venetoclax is prescribed; so that they could monitor you along the way to see your tolerance to the pill.

Carol Preston:

And this town hall today is not focused on clinical trials. A number of people who are here in person have been or are on clinical trials. I think it’s important to remind people, and I’m certainly no expert, because I have not been on a clinical trial, but it’s important to remind people with cancer trials, as we just said this is not the old double-blind random placebo, where one arm is receiving nothing but a sugar pill and another arm is receiving the drug on trial. But that one arm does receive the current gold standard for treatment. So, they are getting treatment it just may not be the newest treatment which is actually being evaluated for safety and effectiveness; so, for people thinking about a clinical trial but say what if I’m in the arm that doesn’t get anything, that’s not the way it works for cancer trials.

And that’s really, really important to know. Al, I would like to ask you, because I know that Teresa was adamant that you were not gonna get chemotherapy in the last couple of years; how was that decided upon. And that was your treatment? Or is your treatment. 

Al Hollis:         

Yes, yes, yes. The—I wanna go back just a little bit if I could, and I don’t mean to be too wordy here. But we’re scared to death, I’m absolutely petrified of the chemo option, and I know some people do it well, but it just petrified me. And through the series of events that allowed me to meet with Dr. Awan, we’re just absolutely amazed, and you are really providential, and as he ran his test and did his full spectrum of things, and I’m actually gonna put him on the spot here, he won’t like this. The first time I met with him, he draws pictures. And let me tell you how good that is, because I actually understood what he was talking about.

I’m not a very smart guy, but I actually understood what he was talking about. And as we walk through this process together, and he began to see who I was and what I was, and what I was made up of, and he analyzed all the metrics. How’s your physical level? What’s going on with you physically, emotionally, personally; he wanted to know all of that. And then it came to the point where it was time, they had done a bone marrow biopsy, and I was enough compromised that I needed to start treatment. He laid out the options, and yes, Nicole he did shepherd me, he helped me a lot he said you could do this; and we could do this, and this is what your outcome could potentially be, but these are the issues, the side issues, the goods and bads that go along with that.

And we landed on a single treatment option because he said, and this is really important that treatment—and these guys will tell you, Brian will tell you this, this treatment landscape is changing daily. It’s amazing what they’re working on and what will be standard practice in the next, I don’t know, three, six months, a year; and he said what my recommendation for you is, let’s put you in remission. Maybe its two months, maybe its seven years, but by the time you come back, and I know I’ll have to go back, I know that, I’ll have something really cool for you that’ll be absolutely awesome. I mean, he said that that’s exactly what he said.

He said it’ll be really cool what we’re able to do with you after that period. And he said, but we can put you on the daily, we can do all the other stuff that folks are doing that are getting good luck; or we can do this other thing. I said I kinda like the other thing; and again providentially, after coming through that treatment, I’m feeling great. Yes, it is a new normal, but I’m absolutely prepared, and I listened to them talk this morning about we’re gonna do this, we’re gonna do this, this is happening. I’m so confident that the promise he made me about the cool stuff is absolutely gonna happen.

Carol Preston:

Well, you’ve answer the last question that I wanna put to you so I will put it to Lee, and I will put it to Teresa, and that is going forward; you are off any treatment right now; I think you mentioned that your numbers may be shifting. Mezzo, mezzo maybe just a little bit; but going forward have you given thought about, and of course this would be in consult with your doctor in San Diego. What you might wanna do, what you’re thinking now that you’ve been through 12 years of this.

Lee Swanson: 

Well, the likely thing, I think, is that I’ll go back on the same medication. It worked once. Part of the reason to go off the medication is, so you don’t build a resistance to it, and so logically you would think I would be able to take it again and get pretty much the same kind of response. Unless there is a new flavor of the month, I think that’s what I would do.

Carol Preston:

Yeah. And there very well may be a new flavor of the month. We mentioned there are trials that are ongoing with acalabrutinib (Calquence), and who knows? But that sounds very logical. You seem very calm and sanguine about it, though, it may be different from the first day as I have what? What the hell is that? And, Teresa, how about you? I know that you are the partner and not the patient, but Al has talked about how confident he is going forward in terms of finding out what’s next and what’s new. What is your thinking as you look to the future just as a care partner and as an advocate?

Teresa Hollis: 

It’s very positive. Today I feel much more aware of resources, much more confident in the network of treatment caregivers. So, we’ve spent the last almost two years arranging our personal life to be able to accommodate what will come, and we wanna take each day as it comes and not stop living and be very grateful for the time that we have. The biggest confidence I have is the awareness of all the resources out there. And we will not be shy about tapping into them.

Carol Preston:

That’s fantastic! First of all, I wanna give thanks and a big round of applause to Lee Swanson, Al Hollis, Teresa Hollis, for sharing their story, for being wonderful, wonderful advocates, very positive and with tremendous hope going forward. I wanna thank all of you for being up here, because now what we’re gonna do is to get into your questions, the online questions, thank you all so much.

So, we’re gonna bring our specialists back up, and you all can just leave the mics on the chairs, and we’re going to bring our specialists back up. And now, it really is your time where we’re going to listen to what you have to say. Of course, we’ve gotten so much great information and insight I can’t imagine that there are any questions left to ask, but I have a feeling, in fact, there may be. So, if we could welcome back Dr. Thompson, Dr. Lamanna and Dr. Awan. And I’m sorry that the three of you have been so shy about offering information at this town hall.

Dr. Awan:       

There’s a statute of limitations on that. It is like one year or something.

Carol Preston:

Well, we’re gonna get right to the questions. Let me just start with some questions that came in early on. And actually, one was offered by Michelle in Boston, and I can—this is a question that is near and dear to my heart because I now have a second cancer. So, the question is, especially for those of you who are new to any type of cancer, what are the chances with CLL that I’m going to develop a second primary cancer? And what might it be? And I’ll just say for me; I thought it was always gonna be melanoma, so I slathered myself with SPF zillion and wore hats; and lo and behold it was a sarcoma. So, what might the impact of CLL be on developing a secondary cancer? Dr. Awan, can we start with you?

Dr. Awan:       

Sure, I think there are multiple reports over the years multiple people have studied this, Dr. Thompson has studied this in detail specifically in combination or in the context of chemotherapy, but we all know that patients with CLL have a higher risk of getting other cancers. The most common cancer being skin cancer; melanomas are more common, but the most common still is Basal cell and Squamous cell, I think the key is to realize that the common cancers would be more common; skin cancer, breast cancer, lung cancer, colon cancer, prostate cancer those are the common ones. So, we expect that we anticipate that that our patients are at a higher risk because of the fact that their immune system doesn’t work like a normal person’s.

So, I go through the list of things that I would recommend my patients, I think prevention is important for those; early detection is important for some of those; there’s established testing that we can do, and for my patients we do that on a more religious basis than an ordinary person probably doesn’t need to get a colonoscopy every five years and maybe skip one or two. But, in our patients, we do recommend that you get a colonoscopy every five years, a skin exam every year at the minimum; then you also do a mammogram or a pap smear; those are common sense things; the PSA evaluation people can argue hey some patients without CLL, may not need those.

But I think for our patients I strongly recommend following these regular preventative health maintenance workups, which can diagnose cancers early, and we can treat them appropriately.

Carol Preston:

Any other thoughts from our panelists?

Dr. Lamanna:  

We’re all agreed I mean one of the things we do with a—when I have a new visit is go through exactly that, in fact, they go home with my drawings, because I draw for them too. And I think some of us do that so that they don’t have to, that hearing business if they’re not hearing the whole story, they can go home with my drawings and be like, okay. Or go back to it and write questions down. So, in addition, we give them recommendations regarding cancer—healthcare maintenance, vaccinations, things like that so they have it. And I feel like a broken record for my patients because every time they come to the clinic, I’m going, when was your last derm exam, when did you have your…

I’m repeating myself over and over and over again, because other cancers are curative, potentially curative, so if we pick them up early, and the skin stuff we see all the time; you remove it you move on. So, we absolutely will promote sort of routine visits for other healthcare cancer screenings so that we can intervene sooner on you all.

Carol Preston:

We have a ton of questions, so I’m gonna—since you all are basically on the same page although we know not always, I’m gonna address this one to Dr. Thompson, from Jacqueline—who says she keeps getting bronchitis with every cold since she was diagnosed with CLL, is there a connection? Her primary doc referred her to a pulmonologist, and we’re not doing specific diagnoses here, but is that cold? I mean, is that a huge issue with CLL?

Dr. Thompson:

I mean, yes, it is. I spend a lot of time talking to patients about infection prevention. But there are, unfortunately, relatively limited things that we can do; so, patients with CLL are at high risk of serious infections, the most common being pneumonia, so I try to make sure everyone gets immunized against the types of pneumonia that we can immunize against; which is pneumococcal pneumonia. But there are also definitely people are more likely to have nuisance infections that linger on, so the winter viruses just last for a lot longer. And I think it’s something that as a research community we’re trying to get better at which is restoring normal immune function; so, one of the things that we have tried to do is move away from chemotherapy-based treatments because we think that that may have less effect on people’s immune function in the long term.

But certainly, I don’t think we’re quite there yet where we want to be in terms of restoring normal immune function; and certainly, it’s a frustration I think, that a lot of patients have, recurrent sinusitis things like that. I often see people who’ve had two or three sinus surgeries with limited benefit, and I think unfortunately it’s probably not something we’ve got a great solution for yet. But certainly, it’s something we’re working on.

Carol Preston:

And I just wanna, before you go on because we have a bunch of questions. Do we wanna turn over one of the mics to you so that we can get questions from our in-person audience. Is there a mic—and the lights are blinding me. Oh, okay, great. And we’d like to ping pong back and forth, does anyone—just raise your hand if you have a question in-person; we’ll do one more from online, and then we’ll take an in-person. So, here’s an—one thing we did not talk about, or we nibbled around the edges were side effects, and the question was will side effects go away only if we stop treatment? And I know—Dr. Thompson will say, it depends.

Dr. Lamanna:  

He’s right.

Carol Preston:

But any thoughts about that? I’m presuming besides—it’s okay. Well, I’m gonna actually pitch that one to Dr. Awan. Let’s just get it going.

Dr. Awan:       

Can I start with the depends?

Carol Preston:

Oh, gosh!

Dr. Awan:       

No, I think we’re very fortunate that a lot of the side effects that are associated with some of these newer agents are reversible, and you stop the drug you can actually overcome those issues fairly quickly; because most of these newer drugs last for a very short amount of time in your body. So, you clear them very quickly, most people recover their side effects and they can be actually restarted on the drug a lot of times, they can start on a lower dose, so there’s a lot of wiggle room with these newer therapies. And one of the things that I think it’s happening in the field right now is that we are beginning to develop newer treatments that might potentially have lesser side effects as we’re learning more and more about the mechanism.

And I think that’s very exciting for us. There are, unfortunately, some side effects that might linger beyond stopping the drug. So, I think those are, again, considerations; this is exactly why you need to work closely with a doctor who’s experienced in managing these issues. With the first sign of a side effect, you don’t wanna stop the pill because the pill could be fine for years beyond that if you manage the side effect properly. I think that is the key, that is what—where the expertise and the experience comes in; that you do this over and over and over again so you don’t panic at the first sign of trouble, which can happen with anything.

Carol Preston:

And again, you can coordinate with your community oncologist and a specialist. The specialist, in many cases, becomes the backstop. So, we have a question from our in-person audience. 

Participant 1:  

Well, first of all, I wanna say that this has been absolutely wonderful, I loved meeting Dr. Lamanna, and I’m very blessed to have Dr. Awan and Dr. Thompson both as my doctors.

Carol Preston:

Is this a—you guys are red! Look at this!

Participant 1:  

Yes, I am very, very blessed, and very, very thrilled.

Dr. Awan:       

It wasn’t handed off.

Participant 1:  

No, this is coming from the heart. With someone like myself who does have horrible markers, and does have a high risk; is there any pretesting you can do to alleviate the boog a boo of Richter’s?

Dr. Awan:       

Wow.

Dr. Lamanna:  

No that’s…

Carol Preston:

…now, we only have another 15 minutes.

Dr. Awan:       

So, you know, this is exactly what I—I just joke about it because I like to joke about these—but the cancer doesn’t always read the textbook, I think every cancer has a different biology and we—the numbers we give you are, at the end of the day, approximations. I think we give you averages, that’s all we can do, and as with any average there’s a curve around it; some people will be on this side, some people would be on that said. Can we predict risk of Richter’s? That’s a very, very difficult question; we have certain markers that do increase the risk of having Richter’s; certain mutations on the FISH and on the genetic testing that you’ve had absolutely, comprehensively performed.

So, I think there are definitely certain markers which are predictive of having an increased risk of developing Richter’s, but that doesn’t mean that it’s going to be 100% in every single patient. And perfect example, despite all bad markers some people can go a long time without needing treatment, and others might need treatments in six months. So, this is not an exact science, and that’s where the art of medicine comes in; and again, somebody who deals with it on a regular basis might be able to better discern this, and you might get better quality of care.

Dr. Thompson:

I would say with the prediction of Richter’s that even people who have what we would say high risk, their lifetime risk of developing Richter’s transformation is probably 10 percent or less. So, it’s something that particularly early in the course of the disease is something that I would encourage most patients not to occupy a lot of their thoughts with. The other thing I would say is that a lot of the data that we have regarding risk of Richter Transformation comes from the chemotherapy era; and probably people with high risk features in their CLL who have chemotherapy may be at even higher risk. We sort of hope that people with high-risk disease who receive newer therapies as their first treatment will have less a risk of developing it.

Dr. Lamanna:  

But we need to—there’s no doubt that we need to develop better therapies for patients with Richter’s; so that’s an area that all of us are actively working on.

Dr. Thompson:

I think they’re coming; actually, I think we’ve got a couple of good therapeutic leads for Richter’s; combination of chemotherapy with venetoclax; some new types of immunotherapies. You know there’s certainly some promise out there that we’re gonna be doing better with Richter’s in the future; but I also hope we’ll see less of it as we get better at picking which groups of patients to use which therapy.

Carol Preston:

Thank you both. That’s excellent and very, very encouraging, that is very, very hopeful from when I first heard about Richter’s in 2014. We’ve had a number of questions about weight loss and fatigue; and can you offer a little bit more insight as to why it happens with CLL and how best to manage and combat it. Obviously, the right treatment certainly will help to mitigate, a number of people are asking about that. 

Dr. Lamanna:  

That’s, I think, a tougher question to answer because it really is dependent on each individual in terms of where they might be on their CLL journey. There are patients who have fatigue that we have a hard time, I think, as clinicians sometimes figuring out why they have fatigue if their numbers—if things look okay. And obviously, there are, as you’ve heard today, there’s a lot of things we don’t necessarily have a handle on; I think fatigue might be one of them because there might be—we always attribute somebody fatigued if their red cell might be low. So, if they’re anemic, that certainly is a direct mechanism of fatigue because those red cells carry oxygen, and if you’re low on them you just don’t have enough, so you’re more tired.

But if your numbers are okay—so, why are people fatigued, and it’s not like we have a blood test to go, that’s why. So, there are some people that their levels of fatigue may not correlate well with their numbers or things like that, and I think that certainly that’s tougher to figure out how do we intervene on those patients if otherwise they don’t need treatment. And that’s an area that we’re still trying to figure out. Sometimes with fatigue and weight loss, if the disease is progressing, so, if you’re having a movement on what’s really going on, then the doctor—that’s maybe why. So, there’s some direct correlations that as the disease may be marching on you might have some weight loss; you might have some fatigue that seems to increase.

And certainly, that’s what you need to work with your physician on, because your tempo might be changing, and that may be why you’re having more fatigue. So, it’s hard to answer because it depends where you are on your journey; some of it might have to do with certain therapies you’re on. So, we do see a correlation with certain therapies, even some of the novel agents; some people can have fatigue on ibrutinib and things like that. So, it’s a good discussion, and you have to sort of, obviously again, involve your healthcare team because it may be dependent where you’re on in your journey, so it’s hard for me to answer that one. 

Carol Preston:

Well, but beyond slowing down, is there anything taking a desired of naps in the afternoon, wouldn’t we all like to do that? Is there a way to manage it and weight loss as well? Dr. Awan, what is your experience on that? Can we actually manage the fatigue to feel a little bit better and less dragged down?

Dr. Awan:       

Sure! Absolutely! And what Nicole said, I completely agree with her; I think sometimes the disease are out of proportion to the extent of the disease. So, your disease might not be that bad, but some young people, especially, they just feel so fatigued that they cannot function; and when you treat the disease, they get better, even though numbers-wise, it might not be that bad. So, I think we’ve all seen that in some of those patients it said the fatigue is really becomes a predominant symptom. And the analogy that I give is if you have a runny nose and if you get a sinus surgery, it might fix it if you have a crooked bone, but if the runny nose was from allergies, you’re gonna be right back after the surgery where you started off.

So, if the fatigue is from the CLL, treating the CLL makes sense. And that, again, is a judgment call on your point, and on the physicians end and on the patients’ end and they come with a collective decision. You have to rule out thyroid function testing, you have to make the testosterone—hormone levels are fine, other reasons why you can get fatigued, the common ones. Once you’ve ruled that out, then you can talk about hey, wanna try some supplements? You wanna try some stimulants, maybe that will get you through the day? I don’t like to do that that much personally because I don’t believe that these anti-fatigue supplements, in the long run, those stimulants are good for you, I just feel a little nervous, and I don’t feel like that’s fixing the problem, necessarily. 

Dr. Lamanna:  

Right. And weight loss is something that needs to be evaluated because that’s not so common. 

Dr. Thompson:

Yeah, that’s not common at all. 

Dr. Lamanna:  

And so, if there’s weight loss we usually are—our little ears prick up, because we’re going hmmm, is there something else we need to worry about? So, for sure, when we talk about fatigue and weight loss in general, we’re—like Dr. Awan was saying—we’re kind of ruling out and looking at other things that might be making somebody have some of these symptoms, because we don’t wanna just blame the CLL. Because when we talk about therapies, obviously, that’s a big deal for you all in terms of the side effects that may come with any of these therapies. So, we wanna rule out and make sure that there’s nothing else going on with that individual to explain so that for them we decide to talk about therapy, we’ve sort of excluded everything else that we might have missed because you might need treatment for something else, so that’s really important.

Carol Preston:

And let me just say for those of you, in-person, who are interested in asking a question, just raise your hands, and that way, Karen will know to come to you with the microphone, and in the meantime,  we’ll keep going with the online questions. This is very interesting question. There are patients—there’s a certain percentage of patients who just never need treatment, they’re on watch and wait their whole life. And so, the question is, are they generally young and fit, or are they older?

Dr. Awan:       

That’s a good question. So, I know, and Nicole has a pretty cool term for that, what was it? Active observation?

Dr. Lamanna:  

Active observation!

Dr. Awan:       

I think I have a better one. I call it dynamic monitoring.

Dr. Lamanna:  

Bad! 

Dr. Awan:       

I think that’s cool, right?

Carol Preston:

Dr. Thompson, do you want to…

Dr. Lamanna:  

…you know this trio, we just can go on the road.

Dr. Thompson:

There was mentor of mine back home that used to call it masterful inactivity and cat-like observation.

Dr. Awan:       

So, what…

Dr. Lamanna:  

…I know who that might be!

Dr. Awan:       

So, I think there’s a dynamic monitoring that we do. No, the point is that the median age of diagnosis is about 70 to 72, so a lot of—half of our patients are older. Now, we are doing these testing much earlier; patients are getting diagnosed much younger; but there’s definitely almost half of our patients are in the good-risk group. So, there could be a lot of patients with the right genetic features, with the right markers who may not need treatment ever. Obviously, if you’re diagnosed very young, then you can have enough time to develop the issues with CLL, but I think from the Framingham corner, some of these patients have had CLL detectible in their test by these highly sensitive testing; 50 years ago, from the samples they had frozen from 50 years ago.

So, some people can have a very long lag time, and our technology is getting so good that we are able to pick it up earlier, and earlier, and earlier; so, we definitely see a lot of patients who may never need treatment.

Dr. Lamanna:  

Right. So, I just wanna interject and say, sorry, say age isn’t—I always tell my younger folks that they’re gonna live with CLL longer, but their biology may still be that they don’t need treatment; so, it’s not really dependent on age, it’s dependent on biology. And so, I just like to prepare them though because if they’re gonna live with CLL longer, just like Dr. Awan was saying, the likelihood of them might needing therapy is because their duration, their exposure is longer so they might need treatment during their lifetime. But it really is dependent on biology, not necessarily your… 

Carol Preston:

…yeah. So, another question, I think I already know the answer to this, I think it came up, but it’s a good opportunity to reiterate, and that is—if I’m currently on watch and wait, if the patient’s on watch and wait, when is the right time to see a specialist?

Dr. Lamanna:  

Any time. But definitely prior to starting therapy.

Dr. Thompson:

When someone writes bendamustine (Treanda) on the…

Dr. Awan:       

No, no. I think… 

Dr. Lamanna:  

…you got to change it active observation.

Dr. Awan:       

The first—dynamic monitoring—so, no, I think again, we alluded to this earlier the biggest is like a lot of people have said, is this the big C word? That’s when you’re the most anxious, and we know that stress is not good for you, and there’s been scientific studies done, and every cancer the stress with cancer is bad than cancer without stress. So, it’s as simple as that. So, we need to destress and with knowledge comes control and power, superpower, I really like that terminology, but understanding is superpower. I think if you understand the disease you really can help yourself, and I think going to a specialist at the time of diagnosis when you are anxious, when you are stressed is extremely important, in my opinion, and I agree with Philip, I agree with Nicole that maybe those testing can be delayed for the prognostic markers until you absolutely need it, completely agree with that. Maybe before treatment CT scans and bone marrows can be done at that point.

But just by talking to somebody who does it for a living, I think it helps a lot of us. And then, in terms of—what was the—I guess the other part was…

Dr. Lamanna:  

…we’re asking.

Dr. Thompson:

When to see a specialist? I think…

Dr. Lamanna:  

…when do you see a specialist?

Dr. Thompson:

Twice! When you’re diagnosed and before you get treated, don’t come and see the specialist after you’ve had three cycles of bendamustine and rituximab and say, should I have done that? Because we can—but in all seriousness, if you’re on watch and wait, it’s useful to see a specialist when you’re initially diagnosed so you can get all the information that you require. And then you—it may be fine to be monitored locally; but if you, then, are told now is the time to be treated, you should come back to your specialist because the answer may be well you don’t need treatment, we can continue to watch. Or the answer may be well yes, you do need treatment, but I would recommend something different.

Carol Preston:

So, one final question as our time together winds down, and this is something that certainly has happened to me, and I bet it’s happened to almost everybody in person and online. A lot of—oh, I’m gonna hold my questions, and we’re gonna go to Pam.

Pam:   

I would just like to ask when your local physician/oncologist says we can do whatever they can do, we have the same drugs and so forth.

Dr. Lamanna:  

Ahh! We’ll all be jumping on that one 

Carol Preston:

Right. Now let’s be diplomatic.

Pam:   

That happened to me actually happened last week. 

Carol Preston:

Fair enough.

Dr. Lamanna:  

Fair enough.

Dr. Awan:       

I think that’s a legitimate question, and in all fairness, yes, they can they have access to similar drugs; they can do the drugs exactly the same way that I would. Except I’ve only done it 200 times. And that doesn’t necessarily make me better, but I might be able to manage it slightly better. I’m not saying that they can do a similar job, I think ultimately, it’s what you’re comfortable with and what works out with your situation. And if you both agree on the general thing, then I think it’s fine. Yes. Do they have BR and bendamustine, and I have bendamustine, yes? Does it mean I’ll use it? No. And vice versa, there might be other drugs that they have used, or I have used, but I think when it comes to experience, nobody has more experience in using venetoclax than probably the three of us, right?

Because we’ve been involved since the get-go. And similarly, with all the newer drugs, Ibrutinib all of that, so can your local doctor do a similar job? Absolutely, but again, I think that’s ultimately your decision.

Dr. Lamanna:  

But we understand that again, I wanna—for many of the fine physicians out there it’s a partnership, and so we wanna make sure you’re in the right hands and there are many fine physicians in the community that can give the same drugs we do, we just wanna make sure that they’re comfortable doing it. Again, we wanna make sure that there’s no—we want you guys to have the best available in your tools, and in your kit, and along with your physician partnership, because we realize not every patient can come to a CLL specialist, so we do get that. Absolutely I think that some of the drugs require a little more fine-tuning, and that’s where the benefit comes in, but we don’t wanna say that your local oncologist can’t do that. That’s absolutely not correct.

Pam:   

Well, the fact he was, I feel offended. 

Dr. Lamanna:  

That’s the again, that same question if you’re seeing a second opinion and I get offended, then always it pricks my ears again to go mm. Is that okay? Is that the right person? Because they’re getting offended and they shouldn’t be. I don’t do breast cancer or lung cancer; I certainly want—you don’t wanna come to me to see those diseases you wanna see them, that’s the same thing. So, if they can everybody wants to seek help, I think that’s the right thing to do if they’re offended, I think that’s a problem.

Carol Preston:

Yeah. And that’s happened to me as well.  Let…

Dr. Thompson:

…one really quick thing I wanna say—so, all of these new drugs that we have, have come to the market because of clinical trials, and I think every patient that is about to have treatment for CLL or another cancer should at least have a look as to what clinical trials might be available, and in many cases there will be more options at an academic center. Now it might be that in a patient-specific situation, there’s nothing particularly exciting in the clinical trial space at the time, and they may decide that they don’t need a clinical trial or that’s not optional, but I think it’s worth looking before you make a treatment decision.

Dr. Lamanna:  

He did say I’m not big on clinical trials.

Carol Preston:

Pam, you’ve just reaffirmed everything they’ve said. All right, first and foremost, very quickly, operative word quickly, one sentence, your message of hope, we’ve been together for three hours now, and I’ll start with you, Dr. Thompson. A sentence of hope or going forward with CLL.

Dr. Thompson:

Yeah, I think we’re in an extremely exciting time for people working with CLL, and I think most patients are gonna be able to live more or less a normal life with this disease.

Dr. Lamanna:  

Yeah, the future is bright. I don’t have much to add lots of things going on, lots of approvals. Think about all these drugs we just talked about approved in the last couple of years, more coming down the pike, the field is moving very, very quickly; and there’s every reason to be hopeful.

Carol Preston:

Dr. Awan? 

Dr. Awan:       

Cure within our lifetime without side effects; I think that’s our ultimate goal. And I’m hopeful that I will see that in my career and that would be awesome! Number two, seek a specialist opinion and clinical trials. 

Carol Preston:

All right. Awesome.

Dr. Lamanna:  

Agreed!

Carol Preston:

Let’s give a big round of applause.

Dr. Awan, thank you so much, stay here, Dr. Lamanna and Dr. Thompson, what a great panel. And I really think they should go on the road.

You know, I’ve just had such a good time up here. Listen, we do hope not only that you enjoyed the program in-person and online, but you’ve picked up a nugget or two of information that increases your level of confidence. We did focus on our key takeaways, which was understanding your diagnosis and treatment choices, feeling more empowered, and educated as a patient. I sure do. And also, I have been very, very inspired not only by Lee and Al, but all of you here with whom I have had a chance to chat. 

I wanna, again, thank our wonderful sponsors which are AbbVie, Genentech, and Adaptive Biotechnologies. The program as you well know from—that’s why you’re all here was produced by Patient Power there will be more programs in the future, continue to email at [email protected]because if your questions weren’t answered today, they will be answered by someone at Patient Power to make sure you get the right answers in consult, of course, with a specialist.

I wanna thank our wonderful, enthusiastic, knowledgeable in-person audience as well as our online audience, and your questions were fantastic, and I would simply like to leave you with this, in the matter of your health, never stop asking questions. Thanks, everybody.

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.