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Facing CLL Together: Session One Replay

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Published on October 7, 2019

During the morning session of our recent chronic lymphocytic leukemia (CLL) Town Meeting in Arlington, Texas, an expert panel, including Dr. Nicole Lamanna, Dr. Philip Thompson and Dr. Farrukh Awan, helps viewers understand CLL therapy options, testing and access to care. CLL patient advocates Lee Swanson and Al Hollis, and care partner Teresa Hollis also join the conversation to share the patient experience from symptoms, to diagnosis and treatment. Watch now to learn from CLL experts.

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.

Featuring

All in all we were very glad we took the time to drive to Tampa from the other coast of Florida and would gladly do so again. Thank you for your part in putting this together for us CLL patients.

— Michele

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

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:

Hello, everyone. Welcome to our town hall, we are in Arlington, Texas today talking about chronic lymphocytic leukemia, and facing CLL together. I am Carol Preston; I have been living with CLL for more than 13 years. We have a wonderfully enthusiastic in-person audience; we have 60—70 people here in Arlington with us. And joining us from around the world at least a couple hundred of you who are watching this online. So, again, welcome to you all. A big part, as was mentioned in our opening segment of the program, are your questions, so, again, please send them to [email protected] [email protected]

We especially wanna thank our wonderful sponsors who are making this program happen, and they are AbbVie, Genentech and Adaptive Biotechnologies. Very, very grateful for them, but Patient Power, of course, has complete editorial control, and also is producing our program today. Now, I have met many of you online through Patient Café, through interviews, and through blogs, and I mention that I’ve been living with CLL for 13-1/2 years, but what you may not know about me is that I did not meet my first patient for the first seven-and-a-half years after diagnosis, seven-and-a-half years.

And that, ladies and gentlemen, for me, was by design. I had been treated twice during that period, two different lines of chemo, including FCR, and some of you have undergone FCR before all these wonderful oral meds came along. But really, my definition of normal was to not discuss CLL in the open; wasn’t interested in meeting patients; just felt I would live my life the way I was going to live my life. Well, that changed in 2014 when I attended my first town hall meeting in Houston, Texas, which in Texas would be just basically across the street. And I realized how wonderful and how important it is to learn together about CLL, to ask questions so that we, as patients, and our care partners can become better informed about the best possible treatment options.

So, here we all are in person, thrilled to have you here, and many more online to learn to ask questions so that we can navigate much better CLL. So, really, really happy to have everyone here. Now just a couple of things that I wanna mention, a couple of ground rules. Please remember, it’s always the reminder, that any opinions you hear are not necessarily the views of the program or our partners. And we also wanna make sure that you understand our discussions are never a substitute for seeking medical advice or care from your healthcare team. So, when you do ask questions, let’s try to keep them as general as possible and not about your specific subtype, etcetera.

So, how are we gonna spend our time for the next few hours together today? We have three key areas on which we’d like to focus. The first is understanding your treatment choices; and choices here, ladies and gentlemen, is the operative word— your treatment choices both as a patient and a care partner.

Number two, to feel empowered and educated to communicate with your care team, not just about treatment, but about testing, and support resources. And finally, to be inspired by patients who are living with CLL. Now, again, we want to take a little bit of a poll for those of you who are attending person. So, is everybody ready to address the tough questions that you’re gonna be asked here? All right, that’s a yes from everyone. All right, so, first of all, by a show of hands, how many of you are living with CLL? Okay, there’s about half the group. And how many of you here today are here as care partners? All right, we have a lot of care partners, that’s wonderful!

All right, just a couple more questions. How many of you have been living with CLL for two years or less? Two years or less? Just a few of you. And how many ten years or more? So, the so the rest of you fall somewhere in the middle. All right. And a lot has happened amongst those of you who are just started treatment, some of you are still in watch and wait, I know, and for those of us who have been around the block probably more years than we care to. But, be that as it may, it is what it is. So, now what we’re gonna do—this town hall is a little bit different than town halls in the past because we have late- breaking news, this is really our version of headline news.

And as Dr. Awan mentioned, they’re jet-lagged; remember that ground rule I gave you about opinions not necessarily, in the program, we’re gonna ask each of them, and I’m gonna sit down now to give us their late-breaking headline from iwCLL. Why are they jetlagged? Some of you have heard they just came in from Edinburgh, Scotland; I think that they pretty much looked at four walls during that meeting, so I don’t know how much of Edenborough they really got to see—not too much that’s the way those meetings go. However, each of them comes here with a headline, a key takeaway from that meeting. And, Dr. Awan, I’m gonna start with you.

Dr. Awan:

Sure, and thank you and good morning, everyone. We did learn a lot in Scotland, and just to answer your question about the highlight of the meeting for me, medically speaking, was for CLL patients, I think we had another funeral for chemotherapy. And hopefully we can eliminate that from our lives as physicians, and as patients, I feel very passionate about it, so I think the crux of the—a lot of those things that we talked about were presented at the meeting and new updates were all in an effort to, at least, minimize and completely eliminate the use of chemotherapy for our patients.

Carol Preston:

Very exciting news. And, Dr. Lamanna, how about you?

Dr. Lamanna:

Hi all. Thank you for being here. You know, we had wonderful sessions throughout the meeting, and it is four days of intensive of both people from this country and internationally get together for four days to talk about CLL in collaborations, about 800 or so of us. So, it’s a really nice way to interact, the CLL community, as physicians and scientists are really small, so it’s nice to see everybody again. And one of the takeaways, I chaired a session that talked about

innovation of assessment, so actually testing in CLL. So, we talked about, and you guys might know, we’ll probably talk about it a little of this today, but minimal residual disease.

Oh, what’s that big fancy word? So, looking at how we can evaluate patients in terms of our therapies and see whether or not they still have any remaining disease, microscopic cells that are still remaining either in the blood or the bone marrow. And our testing is getting more refined, and so we talked about testing in that session, how we can get to finer levels of testing and how we can use that testing to maybe think about how we can truncate or shorten some of the oral therapies that are available.

Carol Preston:

Okay, so, we have a funeral for chemotherapy, and we have increasingly refined testing to determine not only MRD but also who might be able to stop treatment, at least for a while. All right. Dr. Thompson, headline.

Dr. Thompson:

Okay, yeah. Hey everybody. I think, for me, the thing that I really took from the meeting is we’ve already probably moved mostly away from chemotherapy. But the next thing that I think is gonna happen is we are gonna move away from single agent, novel agent therapy. We’re gonna be most doing combinations, and we’re mostly gonna be doing them for a defined period of time, or at least a period of time that’s driven by some of the testing that Dr. Lamanna was talking particularly MRD. So, I’m hoping that we don’t have people, for example, taking one oral medication for 10 years, I’m hoping we’re moving towards getting very, very day permissions with a short period of combination treatment.

Carol Preston:

So, in just a few minutes, we’re gonna find out a little bit more from each of these headlines about why Dr. Awan thinks chemotherapy is on its way out, if not already out. How refined is the testing, how accurate, and how credible is it? And then the use of combo therapies to make sure that we get the best treatment possible, I guess, for the shortest amount of time. Now, before we go any further, and we’re gonna start doing our very deep dive with our three CLL experts, and I’ll tell you a little bit more about them in a couple of seconds. I wanna introduce our patient advocates who you are gonna hear from later today. We have got on the left there, my left, we have Lee Swanson, and, Lee, you can just wave a little bit.

He is a patient advocate from Los Angeles, yeah, San Diego, how could I forget Dr. Kipps. See, and I’m not even jet-lagged, so I don’t have an excuse. And we have Al Hollis and his care partner Teresa Hollis, who are from this area, and actually, are connected with Dr. Awan, so Dr. Awan knows them very well. You are gonna meet all three of these a little bit later this morning, and as a special treat, though he could not be here in person, I think you all know this guy, Andrew Schorr and his care partner for many 30 some odd years, Esther Schorr, and they are going to join us via video after our coffee break in around 11:00 Central Time this morning.

So, you’re gonna hear from all of those patient advocates, and, of course, we’re gonna hear from you when we get to the question-and-answer session about CLL. But right now, what I wanna do is a deeper dive into who the heck are these experts up here, why are they here? And we’re gonna have a conversation about the headlines that they mentioned, plus those all-important treatment choices. To my immediate left, is Dr. Farrukh Awan, he is a CLL specialist and a lymphoma physician in the Dallas, Texas area, we are so pleased that you could join us today, Dr. Awan.

Next to Dr. Awan, is Dr. Nicole Lamanna, who is an Associate Professor of Medicine, Columbia University Medical Center; who really has just about all of her focus now on CLL. So, she really is amongst our wonderful younger CLL specialists in the country. And I’ll tell you why.

Dr. Lamanna:

That was very nice of you.

Carol Preston:

Well, I’ll tell you why I say that, when I was diagnosed 13-1/2 years ago, and some of you have been living with CLL longer, there were six recognized, well known, top-notch CLL specialists. Six. Spread across the country, and now it’s thrilling to know that if you were to go for an outside consult you don’t necessarily have to travel halfway or all the way across the

country to get a very up to date, accurate diagnosis and treatment plan for CLL. So, that really is the great new. Last, but not least, my doctor, Dr. Philip Thompson of MD Anderson Cancer Center, so glad to have you here.

And you will be able to tell, as you already know from Dr. Thompson Speaks, that he has a wonderful Texas drawl. You will enjoy that as we go forward, so now you have met our experts, and let’s face this disease together, it can be very mercurial, it can be indolent, but it can also be mercurial and take twists and turns that, sometimes, none of us expects. And let’s dive into those three takeaways about understanding CLL a lot better. Now, Dr. Awan, you really opened the box on this about treatment options, so let’s—I think everybody here really understands what CLL is, and they’ve been living with it, but let’s talk about—we’re gonna talk about testing, and we’re gonna talk about timing of treatment.

So, what tests do patients need to get an accurate reading, and we’ll start with Dr. Awan, but everyone, please jump in. I knowm Dr. Lamanna, you brought the subject up, but what testing actually is needed? There are an array of tests; does every patient need every test?

Dr. Awan:

Thank you for the question. I think that’s the biggest issue that we deal with on a daily basis, it’s a great one, we’ll talk about the treatment options and how they’re evolving, but for the vast majority of patients that I see in my practice are patients who have CLL that is newly diagnosed. There’s a lot stress with the diagnosis; there’s a lot of anxiety associated with the disease, and you know the big C word, and you don’t know what that means. What is a leukemia, what is a blood cancer, am I gonna die? There’s a lot of that that we have to deal with, so I think, for me, the biggest challenge is, is the emotional connection with the patient and trying to make sure that the patient is comfortable when CS.

Now, in terms of the specific testing, I can give you a very bookish answer, but I don’t think that a lot of you are really that would be interested in that.

Carol Preston:

Let’s have a patient answer.

Dr. Awan:

Yeah, so, let’s talk about a real person. So, I’ve been here a year now in the Dallas area, and I’ve been doing CLL for almost more than 10 years now, so I’ve noticed that a lot of my patients don’t even have the basic testing done that would a) confirm the disease and tell you what type of CLL you have. Because we’re not dealing with one single homogeneous disease that every patient’s gonna be the same. Not everyone would need X, Y or Z things for treatment, or diagnosis, or prognosis. Every patient is unique, and how do you tell that, how can you figure out that this person is going to behave one way, and this person is going to behave one way?

The other question we ask is, how often should we see a new diagnosis patient, should we see them every three months, should we see them every six months, or see you in a year? So, those are big practical questions that the patient wants to know that I talk about when I see the patient for the first time. From my personal experience and from the experiences that Nicole and Phil, already published before, and the real-world experience is that the vast majority of our patients don’t get a FISH test, which is extremely important. We start off with a test called the Flow Cytometry just to diagnose if you have CLL or not. Most of my patients come with that, that’s how they make a diagnosis, or they have a high white count.

Carol Preston:

What does FISH tell you? First of all, what does it stand for? And what does that test tell you? And it makes it more challenging for you if they haven’t had the test.

Dr. Awan:

Yes, I think in very simple words, FISH stands for fluorescent in situ hybridization, and there’s gonna be a test later on, so...

Dr. Thompson:

...if you guys want, write it down.

Dr. Awan:

So, no, fluorescent in situ hybridization is one of the techniques we use to look at the cancer cell and see what’s wrong in the message. And is that message which is in the book of life inside the cancer cell, is that making the cancer cell behave more aggressively, or less aggressively. And that’s how we can stratify, or we can put patients in different classes; some of them will do really well, some of them will do really poorly and have a very aggressive disease. Some of them will have big lymph nodes, some of them will not. So, those are some of the things we can check inside the cancer cell, the genetic problems inside the cancer cell by a simple test called the FISH in which we culture the cells and put certain probes on and the light up and that’s how we look at it under the microscope and figure out what you have.

Carol Preston:

What about a bone marrow—first of all I must ask the audience, and I know online you can’t necessarily see this but a show of hands, how many of you have had a bone marrow biopsy? Ouch! Yeah.

Dr. Awan:

Sure.

Carol Preston:

I’ve had a few myself; is that a necessary test?

Dr. Awan:

So, the vast majority of our patients at the time of diagnosis don’t require bone marrow biopsy.

Carol Preston:

Now you tell me.

Dr. Awan:

Hey, the doctors need practice, too, right?

Dr. Lamanna:

Okay! Next!

Carol Preston:

He’s not my new best friend. Continue.

Dr. Awan:

No. So, we, that was completely a joke, see the jetlag coming out in that? So, for the online audience, we were joking around before we went out. So, anyway, so no, we don’t do, we don’t need to go bone marrow biopsy for the vast majority of our patients; a lot of our patients have circulating disease. Which means they have disease in the blood, which allows us to get access to enough cancer cells to do all of these genetic testing. So, do I do a bone marrow biopsy on all my patients? No. But there are certain reasons why I do want to get a bone marrow biopsy, and those are very specific reasons, which is what the doctor would have to decide if you have these issues.

If I’m suspecting something else or if there’s a particular situation which I feel would allow me to diagnose the patient better, those would be the reasons to do a bone marrow biopsy.

Carol Preston:

So, no pun intended, but you’re really drilling down beyond the FISH test, to the bone marrow to get more information. I can’t help it. It’s all of you—your unleashing the wild in me. So, Dr. Awan, that is extremely helpful, and by the way, this is where I would like to stay before we move to Dr. Lamanna because we wanna get more into MRD and testing. About if only once you see a CLL specialist, if the physician you’re seeing is not a CLL specialist, these are the reasons why. My local hematologist in Maryland and I’m from the D.C. area says—he says I see a lot of CLL patients, it’s 10 to 12 percent of my practice, and I said to him, and this was long after I had been to MD Anderson, and I said that is why I check in with Dr. Thompson, and I check in with MD Anderson, because they only see, diagnose, treat CLL.

And the reason why that consult is important is a number of reasons; number one, if I’m seeing somebody who only sees CLL, that’s all that person is focused on. Number two, what that specialist knows could be, by the time our wonderful local community oncologists catch up; they could be a year ahead in terms of what treatments are available, how to treat, whether we watch and wait, or watch and worry as it’s called. And just very, very quickly; when I relapsed in 2010, the genetic testing showed from a bone marrow biopsy that I was something Unmutated 17P-deleted, which is a very scary thing to hear.

And of course, I was crestfallen. When I went back to MD Anderson, I actually sent all of my slides to MD Anderson, and what I was told is pathologists are great at crunching numbers, they are not the best at interpreting numbers. What I learned was from a specialist who only focused on CLL was that only 4 percent of my cells were 17P-deleted. So, what did that mean? That sounds like a lot of gobbledygook, except what it meant was that I was perfectly appropriate for the mainline FCR treatment, which I had not had originally. So, that is the difference between seeing a community oncologist or a hematologist; and at least seeing a specialist once, and that is my—yeah go ahead, Dr. Awan.

Dr. Awan:

So, I think I feel very passionate about this aspect of testing because I think we have a huge, huge room for improvement in this sphere. So, FISH testing is just one test, number one you have to have the FISH for acute leukemia is different from lymphoma, from CLL. And you need to have a specialized CLL lab which is available in a specialized CLL center. So, unless you have that, you run into these situations where every test has a cutoff; 5 percent, 4 percent, 10 percent depending on the sensitivity depending on the different test characteristics. So, you really wanna go to a CLL specialist center where the labs are set up to do the testing the proper way; because there’s a lot of technical things about the CLL cells, which we have to do to make sure we get the best results.

It’s an irony; it’s very, very unfortunate that 50 percent of our patients in this country, which reportedly has one of the best healthcare systems in the world, 50 percent of patients for CLL don’t have FISH testing, ever. Which is...

Carol Preston:

One and two.

Dr. Awan:

...it’s unbelievable to imagine why that is when it's easily available, every insurance pays for it, there shouldn’t be a problem, you can always find a good lab even if your hospital doesn’t do it, you can send it to a CLL lab. Fifty percent of my patients don’t have it done, FISH changes with time, it might need to be done at multiple times during the course of your disease, less than 50 percent of the patients have it done multiple times. IGHV is another test that is done once, and if you’re either mutated it means something else; if you’re unmutated, it means something else. That doesn’t change; it is the single or one of the very important testing for CLL.

How many patients get it done? Less than 10%, EP 53 Mutation Analysis, I’ve seen 100 patients in the last year in the Dallas area. How many of my patients had a p53 mutation analysis that Carol got partly referred to? Do you know how many? Zero percent. And the only patient I had with the p53 mutation analysis was a patient of that Dr. Thompson sent me.

Because I would expect a CLL specialist to do that, but the point is we’re talking about all of these fancy testing and how you combine this and that, and I’m like let’s get our diagnosis correct first, let’s start there. Before you know what you’re dealing with these academic questions about combining this with that, FCR versus not, well they’re fine, and we can talk about it all day; but the biggest single most important thing that I feel very passionate about, it doesn’t matter where you are there are multiple portals online, there’s multiple societies that are working on these things to have access to a CLL specialist.

Even if you see them once, maybe in five years, at least get your diagnosis correct, get your prognostic factors figured out properly, and then you decide to get care with your local hematologist, and that’s fine.

Carol Preston:

Yeah. And that probably would have avoided for me at least one inadequate line of chemotherapy where I started, so that’s why it's important. I don’t know, Dr. Lamanna, got anything to add?

Dr. Lamanna:

My Lord!

Carol Preston:

Now that we know about Dr. Awan’s passion about testing, and I think he’s really given us a great hierarchy; I also what you wanna add, but also let’s get into MRD a little bit, because that is on everyone’s minds.

Dr. Lamanna:

Just to add to what Farrukh was saying, I think it’s important—you know there is a difference, and we do appreciate, I think it’s absolutely important if somebody says you need treatment, or this is your first treatment, that is really a key point to seek consultation. Because what Farrukh was saying is absolutely true, because to make sure that some of these testing is performed at least prior to—you know the international colleagues, and I go back and forth; and all of us go back and forth because they may not—there is a sense of anxiety by knowing the results of some of these tests. And we shouldn’t be acting on these tests either, in other words, so if somebody has a 17p deletion, or they’re unmutated some of these things that we’re gonna refer to during this session, just by knowing that doesn’t mean you necessarily need treatment,

So, there is a sense of anxiety that can come with these prognostic markers; but that doesn’t mean everybody requires therapy just by knowing what you are on the scorecard, so to say.

Carol Preston:

And you know, everyone who has heard Andrew Schorr’s story knows that originally, he was told by a local hematologist he needed treatment right away. When he went in to MD Anderson, this is not a plug for MD Anderson; it just happens to be where he went; he ended up being on watch and wait for almost four years. So, that’s a big deal.

Dr. Lamanna:

So, it’s important. So, prior to getting any therapy, it is absolutely essential to have this testing done, because it may influence your treatments. And so that’s what when we talk about CLL specialists and seeing somebody, we realize across the country that’s not a possibility. Like Farrukh said, there’s lots of different ways to get access to all of us, so I think that’s important to keep in mind. So, certainly if you don’t have that testing done, that initial presentation, although all of us would like that, certainly prior to getting any initial therapy, we think it’s strongly we absolutely recommend it and we think it should be standard of care; and in addition to educating you all we’re trying to, obviously, educate doctors in the community to learn about this as well.

Because it’s a rare disease. We realize that you guys are rare individuals, and that’s why we’re all here, that you’re special.

Dr. Awan:

Special!

Dr. Lamanna:

Now, in terms of testing, the other big thing that comes up before we get to MRD is images. So, let’s talk about CAT scans or ultrasounds, X-rays things like that. So, typically, we do not traditionally recommend routine CAT scans for patients with CLL. So, if you are—because remember hopefully as we all examine our patients, we can feel who have lymph nodes—most of the time, what’s going on, on the outside is usually mimicking what’s going on in the inside. So, unless there’s symptoms— symptoms can drive imaging, so if you’re not feeling well or there’s something bothering you, you have abdominal pain or discomfort, absolutely I think that’s appropriate.

But just routine imaging all the time to look and see if the lymph nodes have grown; that’s a little bit of a dangerous catch because if your lymph node—let’s say a lymph node grows from one centimeter to two centimeters, that’s 100% growth, oh my Lord are we gonna do something about this to intervene. And we don’t want doctors necessarily intervening depending upon that sort of measurement. So, routine imaging is not something we typically do; it should be driven by symptomology by...

Carol Preston:

...and again, I had to—you’re just dredging up so many memories.

Dr. Lamanna:

Sorry.

Carol Preston:

No, but when I was first diagnosed, I ended up having four CAT scans in one year, plus at least one or two PET scans, and I actually went to the local physician, and I said stop. I said I’m not doing this anymore; I said you’re gonna kill me with the CAT scans before the CLL gets me.

Dr. Lamanna:

So, we’re not saying that it’s not; obviously there are appropriate reasons to be that.

Carol Preston:

But that was in 2006. So...

Dr. Lamanna:

...they wanted to keep aware.

Carol Preston:

And that is how rapidly things have changed. Before we do move to MRD, Dr. Thompson, anything you wanna add about testing?

Dr. Thompson:

Well, they’ve covered it very well, but I think the just to echo what Dr. Lamanna said, the key point to get testing done is before treatment. And the reason to do that is that the results might change the type of treatment that you’re offered. So, it’s not just to outline a prognosis; it actually might change the treatment decision, and so that’s the critical thing.

Carol Preston:

You know, that is a great segue into treatment, because a lot of patients, I think everyone gets the message now about how important testing is prior before you do anything because you may not do anything at the start. But let’s move into the treatment arena, when I think about the treatments then, it seems like only 13 years ago, but that, for CLL is a lifetime ago. When I think about treatments then versus now, I mean we are really looking at a multi-page Chinese menu of options which is why these flow cryometries, these FISH tests, and even the bone marrow and these other tests that Dr. Awan mentioned, I can’t remember them all, are so important to make sure we nail the right treatment.

So, starting with you, let’s work our way back, Dr. Thompson. You mentioned to me, it was either last night or this morning, how complicated or complex, maybe that’s a better word, treatment has become because of the explosion of options in the last three or four years. So, can you talk about that a little bit?

Dr. Thompson:

Yeah. Sure. So, actually, I was just talking to Shirley before we started, and I was saying I have a slide that I use when I give a talk that has a little flow diagram of the kind of treatment options for different patients with CLL. And it used to be really straightforward, and it's now getting to the point where I’m down to like size 14 font, and I’m worried that people aren’t gonna be able to see it. But actually, so, this is a good thing, it basically means that now we’re having so many more options that we can use; but it also means that you have to have someone that really understands the disease, making the decisions.

Because when you only have one treatment, anyone can give it. If your one treatment is chlorambucil (Leukeran), or bendamustine (Treanda), or rituximab (Rituxan), treatment decisions are simple, but—so now we have a lot of things that go into decisions about the first-line treatment. Now we have age and the fitness of the patient, and we have the genetics of the disease, and then we have whether the patient has other clinical problems, like, for example, do they have abnormal kidney function. And so, we put all of those things together, and we come up with treatment options. So, Dr. Awan was saying chemotherapy is dead, and that’s mostly true, I think.

Dr. Lamanna:

Oh, good! I’m glad; you’re gonna strike a middle ground?

Dr. Thompson:

I’m gonna strike a middle ground. So, there is a small group of patients who are young and fit, and have what we call favorable genetic risk, and that group of patients is still doing very well with chemoimmunotherapy. But pretty much everybody else, which would be at least 80 percent of patients are getting these novel targeted treatments. And I think over the next few years we’re gonna start to see results of clinical trials that are comparing combinations of these novel agents to chemoimmunotherapy, and I suspect eventually chemotherapy will be dead.

Carol Preston:

Dead and buried too, huh?

Dr. Thompson:

It’s certainly on its way to being dead, but yeah. So, I guess the take-home message is most patients now the optimal treatment is gonna be targeted therapies, the new oral targeted therapies is a smaller group of patients where chemotherapy-based treatment may still be appropriate.

Carol Preston:

So, I offer this to all of you, so how do you choose? Even after doing two tests, three tests, five tests, six tests—drill, drill, drill, get down to the essence of what the message that those cells are sending. With so many immunotherapy options now, a lot of them oral, I don’t even know if we’ll get into CAR-T cell, how do you decide Dr. Lamanna?

Dr. Lamanna:

Yeah, I think it’s exactly what Philip was saying. I mean before we didn’t have as much and so there was a lot less wiggle room, and it was more of an age and fitness, and comorbidities like renal function and things like that would guide us in one way or another. Now, with all of that plus all these new novel therapies, we’re still looking at fitness and comorbidities, but in addition, now, we can really factor in the genetics and the molecular mutations of the disease to self-select. So, that’s why that testing is important because we might steer people away from certain therapies; but we’re still then still talking about what inherently people are living with, what other comorbidities.

Do they have heart disease? Are they on blood thinners? Things like that that might go hmm, now we have all these novel agents but these oral agents it’s great they’re convenient, they’re pills, but they also have side effects too. So, when we talk about there are side effects to these new therapies as well; and so when we’re trying to then partition out or figure out what might be best for patients, in addition to the features of their disease, we’re still counting in what are their kidney function, do they have heart disease, what other medications are they on? There might be drug interactions. Are they able to access these new medications?

Not everybody gets approved for—the majority of folks do in the U.S., the international whole different beast whatsoever. A lot of them don’t have access to these novel agents even though they’re approved. So, there’s financial concerns as well to take into consideration, so we look at all of these factors when we talk about, them, the right—and obviously with you all, try to talk about long, continuous therapy versus short-term therapy. These now have to be taken into consideration as we have all these new agents. Believe me, we’re very happy we have multiple choices, but we still, it is not one size fits all, we would all like to say that there’s a drug that cures everybody and we’re done.

If not, yet the case. And so, we really do need to factor fitness, comorbidities, and disease factors. And the good news is, is now older folks can benefit from novel therapies that are just as well as our younger folks. So, really age shouldn’t be a factor anymore in treating the disease; but we do still take into consideration comorbidities, renal function, organ function and things like that.

Carol Preston:
Do you get to a point where you say to a patient, I’ve factored in all of your factors, all of your testing with the genetic results are, and you have three different options that we could do. We have different routes. Because when I was being treated that wasn’t the case, it was really only, there were lines of chemotherapy, and then Rituxan came on the scene, one of the antibodies, the monoclonal antibodies, and today I mean do you ever say, you know what we could do this, we could

do this, we could do this. Or are you pretty much narrowing it to one once you’ve gotten all of your ducks lined up? Just start with Dr. Lamanna and then Dr. Awan.

Dr. Lamanna:

You know I think its overwhelming for patients, there’s no doubt because of all these choices. I try to, in my practice, help guide patients, and part of that does factor in their influences about treatment, so, first and foremost, I was trying to make sure that we’re getting good efficacy we recommend for you all. But second is taking into your considerations as well. So, I will try to guide patients based on my interactions with them as well, because definitely you all have biases and opinions about your treatment and that is important, so I absolutely will try to narrow it down, because I think otherwise it could be completely overwhelming for patients.

Carol Preston:

And lifestyle.

Dr. Lamanna:

So, here’s your menu, and it’s—the good news is yes, there is multiple options, but I really do try to narrow that down for folks, so it’s less overwhelming, and I take into consideration what you all are thinking about from your standpoint.

Carol Preston:

And there are lifestyle considerations.

Dr. Lamanna:

Absolutely!

Carol Preston:

Whether you work, whether you’re taking care of kids or grandkids.

Dr. Lamanna:

But that’s what I mean, I try to narrow that down for folks; because otherwise, I think it can be completely overwhelming.

Carol Preston:

So, Dr. Awan, I wanna pitch it to you about that and also some other topics that we wanna make sure we touch upon which is length of treatment, which is, I think, as varied as the options now that are available; as well as resistance to some of these new oral medications. So, first of all, you can talk about treatment options, then let’s move to length of treatment.

Dr. Awan:

Sure. Sure. And I think these guys have covered the big points about treatment selection; it’s confusing for us just as it’s confusing for you guys. You see all of these names, and which ones to use, and how to put them together, and which one’s better; short-term, long-term. And that’s a great thing to have; those are options that we need to talk to our patients about; the last thing you want, and I keep harping back to the same thing, we need to break our habit. And the habit is I saw a patient two years ago, this is what I used, it worked for me, and I’m gonna use the same thing again. Which is what I see every day.

Half of my patients end up getting bendamustine (Treanda) and rituximab when they come to me after treatment. And, you know, I can argue about that nine out of ten times against it, the point is why am I using as a physician that sees a lot of patients in the cancer world, why am I using/still using bendamustine, rituximab for a lot of my patients? It’s because I feel very comfortable with it, I’m a beast of habit, it’s easy, my nurses knows how to do it, I know how to handle the side effects, my boss used to do it when I was in training, you know, so on and so forth. But is that the right thing to do?

Now, we—even we don’t know, and we can debate, all of us can probably, we all have our own opinions, we can talk about which chemo would we use, which chemo would we not use? As Philip said, FCR has a role in the younger person with good risk features, good risk disease. My argument to that is FCR works greatly in patients who don’t need it. So, you can spin it; however, you want.

Dr. Lamanna:

This is why they put me in the middle!

Carol Preston:

Maybe I’m gonna add something, maybe you need to see at least two outside specialists.

Dr. Awan:

And then the point I’m trying to make is there’s a lot of disagreement even with amount stats, and people feel very strongly.

Carol Preston:

Friendly disagreement.

Dr. Awan:

And friendly, friendly. No. No. No. Absolutely. And I think that’s a very good problem to have. Ten years ago we didn’t have that option, and I’ve practiced in that time, but it was also, and I’m so happy to now have these options, as Nicole said, my job as a CLL doctor is to figure out this alphabet soup and make it easier for you and shepherd you towards the right treatment in my opinion. You are not the expert, I am. This is what I went to school for, and trained years and years for, and I do day in and day out; nine out of ten times the patient can be shepherded to a treatment based on my biases. And that’s why it’s extremely important to talk to at least one CLL, maybe two CLL specialists.

Carol Preston:

He’s knowing our business.

Dr. Awan:

When you first get—because I think it would be critical, I mean, you don’t stop at the first dealership to buy a car, unless you really trust that dealership, maybe on the third or fourth car you would probably go to the same dealership. Remember the first car you bought? You must to have gone to at least two dealerships. This is a life decision; this is probably the biggest decision you make in your life, right? When to start treatment, when to get a CT scan, when to get all of this testing done? And I agree with Nicole, I think you need to have—this is what I would do, X, Y and Z; this is an 18-month treatment, this is a lifelong treatment, this is a short treatment with these side effects, this is a long treatment which might be hard on the kidneys.

This is a long treatment which might cause some bruising and bleeding. Lifestyle issues—I’m a very athletic person, I play tackle football every weekend, maybe certain treatments are not good for you; because you have a big spleen and you’re gonna have a problem. So, those are the kind of discussions that you wanna have, so my point is, every patient is unique, every patient is special, and you need to talk, we need to talk to our patients. And the patients need to tell us what’s important for them, and that’s when you can decide if any D month one. This whole notion, in my mind, I agree that in a way, we need to come up with new treatments, shorten the course of treatment.

Let me ask you a few basic questions. Which disease kills the most people in this world? Or in this country, let’s not talk about the world, in this country. Which is the most common killer in this country? Cardiovascular disease, right? Heart disease. What causes heart disease, cardiovascular disease? Hypertension, high blood pressure basically, and diabetes most common causes. What do you do with hypertension? You take a stupid pill a day. What happens if you don’t take that pill? You get a stroke; you might have a really big problem. Right? How is that different from if I give you a pill? Now I understand that cost is an issue; I understand the side effects are an issue.

How many people stock lisinopril (Zestril)? One of the most commonly used drug for blood pressure? Forty-seven percent. My drugs are much cleaner than that. Forty-seven percent of patients. Half the patients who start a blood pressure medicine stop within the one year of starting because they can’t handle the side effects. I’m just giving you a similar pill for a cancer that keeps it under control, and if we have that option is that unreasonable? Why is it so important to develop a shortened time option? But then that’s where the resistance comes in; maybe if you take it for longer, just like with antibiotics, maybe the cancer will develop a resistance.

So, we’re all learning, so you can argue this model blood pressure, chronic therapy, they keep taking it, see you back in 10 years. Or, the other model is, hey, if I take it for too long, then people will develop resistance, then it won’t work, and the cancer comes back stronger. These are all outstanding, exciting new questions that we’re dealing with every day.

 Carol Preston:

Well, I’m not sure I’d use the word exciting.

Dr. Awan:

No, look at the challenges. I mean...

Carol Preston:

...okay, they’re amazing challenges. But let us—let’s talk about resistance a little bit.

Dr. Awan:

Sure.

Carol Preston:

And, Dr. Awan, we absolutely—we love your passion, and your passion is becoming our passion. And that’s really one of the takeaways for me from this meeting about being passionate, doing the right things for ourselves. So, Dr. Lamanna, you are now prescribing a lot of oral medication and combo therapies; there is rising incidents and rising concerns about resistance. So, tell us what is happening and how that’s being remedied if it can be remedied.

Dr. Lamanna:

Yeah, absolutely. I mean—so, similar—when you think about the folks who’ve had chemoimmunotherapy, and there are several in the room, we talked about this that there weren’t less options, and so we would cycle people from one chemotherapy regimen to another, and certainly you can develop resistance from those therapies as well, it’s just we had less techniques and ways to measure those resistance. With some of these new oral therapies, we’re learning about the mechanisms of resistance that can develop, and we’re being able to start testing. More importantly, to translate that by testing for these mechanisms of resistance.

So, there’s a certain mutations that could develop that we can test for now for patients on some of these oral therapies, such as Ibrutinib. And, so, we’re learning about them, and we can test for them, and that’s very helpful because now we’re looking at ways—are there different ways that we can overcome some of those mutations? Are there newer therapies, or are there combinations? How do we strategize? Like Farrukh was saying, Dr. Awan was saying, how do we strategize? Are there different ways that we can then bypass or see if we can delay that resistance from developing in certain individuals?

And so, this is all now in a part of what we do as researchers, but we’re trying to move that, obviously, into the clinical arena for you all because there are ways that we can finesse and actually identify mechanisms of resistance to some of these novel therapies; and then try to look at different therapies to intervene. And we’re testing, now, newer drugs actually that can overcome some of these resistant mutations. And so, we’re hoping to bring newer therapies, right? So, I wanna make a plea that although he made a huge plea for CLL specialists, but that one of the things that we’re trying to move forward is obviously every time that when you, as obviously in your mind you’re think about your disease, and if you’re on therapy, you’re currently thinking about the therapy that you’re on and the side effects that you may or may not receive from that therapy, we’re also trying to look forward.

So, when I think about a patient, and we’re starting whatever therapy they’re gonna start, I’m thinking about, not only are they getting now, I need to think about their next therapy, their next therapy, their next therapy. Because our goal is really to keep you all alive enjoying the things that you like to do long term. And so, and a CLL specialist Head Row is trying to think forward and ahead so I can anticipate what your next therapies might be if you need them. And so, that’s really important. So, when we talk about resistance, we’re doing a lot more testing, and some of these are now commercially available, so their oncologist can test for some of this, although again, there’s gonna be—until it’s really mainstream.

And we know that there might be some issues with insurance companies still reimbursing some of these testing; hopefully we, as a community, can push that forward so that when we think about some of these novel therapies, and if people look

like they’re breaking through these novel therapies that we can test for some of these mutations in real-time, and then start acting on it. Although again, some of this is still in the research domain, that’s what we’re trying to do is push this forward and learn more about some of these resistant mutations. And we don’t know all about them yet; there are patients who might be resistant that don’t have some of these mutations.

But we’re gonna be learning more, and more, and more about that and by the patients, and we wanna thank—and wanna put a plea out also for patients who are on any clinical trials, are there any people in the audience who might be on a clinical trial? Thank you. Because this is how we learn about some of this, we learn more and more about the biology of CLL, we learn more about the therapies, and obviously some of these therapies now are obviously mainstream because by being on clinical trials we can push these novel therapies forward, or combinations and trying to learn, so thank you all.

But that’s important as we learn more and more about the biology from folks on clinical trials and we can learn how to, then, finesse this into mainstream for patients who aren’t on a study.

Carol Preston:

So, Dr. Thompson, a lot of people are saying great, these are all meds, I’m talking to other patients, and they’re actually getting off those meds that it is no longer day to day for the rest of my life. And, in fact, pretty soon we’ll meet Lee Swanson, who will tell us about his experience with that. In terms of measuring success for treatment, eople are placing a lot of hope that they won’t have to be on the oral meds forever, how realistic is that?

Dr. Thompson:

Well, the answer is it depends which oral medication you’re on. So that’s the first thing I would say. Now, so MRD testing is important in certain situations, but it’s not important in others. So, for example, I think ultimately, the best measure of success is the patient is alive, and the patient has a good quality of life, and you can get there in different ways. So, you know we now have kind of two different types of very potent oral therapy that can control CLL, one is bruton tyrosine kinase (BTK) inhibitor, ibrutinib (Imbruvica) is the one that’s currently approved, and there will be others coming along like acalabrutinib (Calquence). ibrutinib controls the disease extremely effectively, but it doesn’t eradicate the disease in the vast majority of patients. And so, as Dr. Awan was mentioning, you have to take this drug indefinitely.

But I have patients who have been on Ibrutinib for eight years, and they’re continuing to tolerate the treatment, they have no side effects, they have an excellent quality of life. If I do MRD testing, I find they have 1 percent CLL, but if this is causing no symptoms, they have a fantastic quality of life, is this a major problem? So, the answer is, well, in that situation, MRD testing is not helpful. There’s a different treatment paradigm which comes from the drug venetoclax (Venclexta), which you’ve probably heard of. So, venetoclax has a different target to ibrutinib; it targets a protein that prevents the CLL cells from dying, so when you block this protein, they die off rapidly; particularly when you combine it with an antibody-like rituximab or veltuzumab you can get what we call very deep remissions.

So, when we look in the bladder, we look in the bone marrow, and we do a special test called flow cytometry, which can detect one CLL cell out of 10,000 normal cells; there’s a high chance we won’t be able to find any CLL using that test. And so, that gives us the hope that, okay, we can stop venetoclax, and maybe the patient will be a in a long-term remission without being on a daily oral therapy. What we don’t know, yet, is the durability of remission once we stop the drug. We assume this—we know from the chemotherapy era that if you are what we call MRD-negative, you’ll be in a longer remission on average than patients who are MRD-positive.

But we don’t know yet with these oral therapies like venetoclax how long are these remissions going to last. So, we can tell that when we look at MRD testing again in a patient that’s been on, for example, the Murano Study, which was venetoclax, rituximab approval of that regimen, patients who were MRD-negative had a better outcome than patients who remain MRD-positive. So, it is a useful test in that sense.

Carol Preston:

I’m just jumping in, there are questions going around in the research in the scientific community about whether it is okay to be MRD-positive and go off some of these medications. Is it imperative that I be MRD-negative in order to stop the drug?

Dr. Thompson:

Well, again, the answer to that would be it depends, and...

Carol Preston:

So equivocal, this guy!

Dr. Thompson:

No. Well. So, you need to think about the disease in two ways, one is how much is there? But the second is what’s the biology of what’s there? So, there are some patients whose disease grows very quickly when they’re not on therapy, and there are other patients where the disease grows very, very, very, very slowly when they’re not on therapy. So, I’ve had some patients, for example, who’ve stopped Ibrutinib therapy because of side effects, who had quite a large amount of disease when they stopped, but they haven’t actually run into any problems in several years of observation, because their disease grows slowly.

So, you need to know more than just what the MRD test says; you need to understand the biology of each patient’s disease because that will have a huge influence on the durability of remission when you’re not on a suppressive therapy.

Carol Preston:

Yeah, and, Dr. Lamanna, you had mentioned about how much more refined the MRD testing is, so does that factor into your equation?

Dr. Lamanna:

Yeah. Well, again, not mainstream yet, so we’re able to get more sophisticated with the testing to even get beyond that level of 10-4 and so on, and so forth. You can get deeper with our sophisticated testing that may become mainstream at some point in time, not necessarily done in all labs yet. But what Philip was bringing up is actually critical, so the fact is, is back in the—and I could say this because I was part of some of the initial FCR clinical trials that did MRD testing, so I’m older than both of these gentlemen. So the point being I’ve given all these therapies and chemoimmunotherapy, FCR, was a great example of this because, obviously, compared to Ibrutinib much more deeper remissions and hence, why certain individuals can then be off therapy for years.

And so, even in what he’s bringing up is there are patients who even may have some disease but still not need treatment for years down the road, and so that really is important because we’re using MRD testing to try to see if we can truncate the oral therapies like venetoclax similar to what we do with chemoimmunotherapy we could keep, because of the side effect issues, weren’t keeping people indefinitely on bendamustine, rituximab, or FCR therapy because it’s too toxic. So, similarly, can we do that with some of the orals and truncate the therapy? But, remember, these novel agents, we do not have 10, 20 years yet of data, and so we don’t know that one is how long does that response duration last?

Whether you are MRD-negative or positive; from the chemotherapy era, we do have that, so we kinda know that obviously, if you are negative, that response will last longer than if you’re positive. Now with the new orals we need longer follow-up, so we need to see for the patients who have been on some of these key clinical trials, how long for those who might be MRD-positive, we even, as I said, breaking them down to even to sublevels of that, how long will their response duration last? And then when can we use that data to then say, okay, can we restart drug if they need it? So, can they go back on venetoclax and still be sensitive to those therapies, have they developed any new mechanisms of resistance?

So, we’re still learning about all this in the era of these novel agents and these targeted therapies, and so, unfortunately, the answer is—there isn’t a right answer or a definitive answer yet. But I think that, at least, finally we’re trying to look at MRD to see how we can utilize that to tailor therapy better. And as Philip was suggesting, there are probably some individuals where it may not be a good idea to get off an oral agent depending upon their disease characteristics. That it might be a benefit to stay on them because they have more of an aggressive phenotype about them that they may be beneficial to stay on oral therapy indefinitely; we don’t know yet.

And so, stay tuned. I wanna say there’s not a 100 percent right answer, and that’s why having that discussion with your doctor and knowing that about CLL is very important.

Carol Preston:
And we have about a minute before we bring our patient advocates up, they’re gonna come up and join this conversation. So, Dr. Awan, in the minute that we have, are routine blood tests even necessary anymore? Should we just stick to the specialized test? Do we still need to have these tests every three or four months? She asked, knowing that that’s what she does.

Dr. Awan:

I think adding to what Nicole said, there are very few labs in this country that can do MRD testing, number one, outside of major academic centers. So, this is a very academic discussion, right? Most patients, for most of us, it’s not even relevant right now, but this is what we are working towards. Nobody knows what the right method to use is, we’re figuring that out. There are very few certified labs who even know what an MRD is, is 1 in 10,000 level better than 1 in 100,000 level better? These are all questions that we are beginning to answer. Again, I hark back to the same issue; that’s where you need a CLL specialist.

Flow cytometry is not MRD; the flow you get for diagnosis has nothing to do with MRD. There’s a much more specialized test for MRD, which very few labs can do in this country. And that is something that we have to grasp; not just a random marrow will do it. So, I’m talking FISH and IGHV we don’t even have enough of that testing done to expect people to check for MRD I think it’s asking a lot, frankly. So, having said that, I agree with everything that these guys have said; routine blood tests are important, because if I’m making treatment decisions based on your kidney function, based on your liver function, based on your bleeding risky, those are important considerations for me if I am using those testing for making treatment decisions.

Routinely do you need to have a blood testing done? Some of the reasons why I would treat a patient is obviously the symptoms, the patients, how they feel, how big the lymph nodes are, are they causing any symptoms? But the other important piece is the more objective piece, are they anemic? Are they getting more Trauma Site PA, do they have low platelets? What is the white count, and how fast is it going up? That gives me a trend; I don’t use a magic number; there is no magic cut off for the white count, 100, 200, 300. We have patients walking around with a count of 300, and they do fine; there could be somebody with a white count of 50,000 and really bad symptoms.

It just depends on the disease biology, which comes back to can I stop treatment in those persons? Some people are on Ibrutinib; they stop the Ibrutinib for three days before they get a colonoscopy and bam the lymph nodes flare up, right? Right? We’ve all heard that story, and other patients they can stop for a month and like Philip said...

Dr. Lamanna:

Or months, years.

Dr. Awan:

...or months, years, I’ve had patients, we’ve all had patients, I had a patient I remember the patient had a rash, so we had to stop the ibrutinib and then we tried it again after a few days, they had a rash again. So, this drug is not for you; any drug can cause a rash. Guess what? The guy was in remission for two years after seven days of treatment.

Dr. Awan:

Go figure! I’m just giving you a real person perspective. I can’t explain it; his spleen went from this to this. I said, whoa, man? This is magic. And I’m—do you know why I hate chemotherapy now?

Carol Preston:

Are you playing tackle football? I think you need to get some energy up.

Dr. Awan:

Oh, no. I think what my point, again, is I think these are great academic discussions, but we also wanna have—people are real, you deal with real-life issues.

Dr. Lamanna:

So, you need your blood counts checked.

I guess the bottom line is...

Carol Preston:

...and you have provided the perfect segue when we talk about—and all of you have mentioned how academic this is, and now we wanna really get to the people. So, in just a minute we are going to bring up our patient advocates, we have two patient advocates and a care partner who are going to share their stories with you including—I don’t know, there’s a lot firing of doctors in these stories, and that’s a good thing. But that actually is number two on our agenda about feeling empowered to communicate with your healthcare provider so that you know the questions to ask and so that you can determine which treatments are right for you, or which physician is right for you.

So, now I would like to ask Lee Swanson, and Al Hollis and Al’s wife Teresa, to come up and join the conversation.

Dr. Lamanna:

Yay!

Carol Preston:

From the frying pan into the fire, folks. First of all, welcome, we’re glad to have you all here, I’ve had a chance to see Lee online, and also to talk with him, and they all have very important stories to share with you. And you’ll hear a lot of your own stories reflected in what they have to stay. So, Lee, let’s start with you about when you were diagnosed, what your symptoms were, and just a little bit about your story.

Lee Swanson:

Well, in 2007, I went to my primary care doctor for a physical; and we were looking for cholesterol, and we found CLL.

Carol Preston:

Oops!

Lee Swanson:

Yeah. And he sent me to a hematologist/oncologist, and I my first question was, what is this? What are you talking about? I’ve never heard of this. And I was asking global questions, and he was saying come back in four months, and we’ll do another blood test, it’s treatable, it’s not curable, so just come back later. And I was asking you just said cancer and the next sentence is supposed to be this is how long you’ve got. So, am I gonna live or am I gonna die, and if so when, and if not, why not? And he said come back in four months we’ll do another blood test. So, I went where you always go for medical advice, Google.

Dr. Awan:

Dr. Google. Yeah.

Lee Swanson:

And found several articles that kept mentioning a Dr. Kipps at UC San Diego, which is five miles from my house. And he was in so many of these articles about the research that he was doing and being quoted about things as well. He’s never gonna see me; he’s way too busy. I called, and they said how’s next Wednesday, and so, I fired the other guy, I didn’t have to give him severance, I got to Dr. Kipps and have never looked back. I did FCR in 2008 about a year after my diagnosis and was in remission until 2014, and did the MURANO trial venetoclax and Rituxan in early 2015, and came out of that MRD- negative, and have been without any medication at all for about two-and-a-half years now.

Carol Preston:

Let me ask you this; between the time you saw the first hematologist/oncologist, and you saw Dr. Kipps, something inside you was seeding doubt. You clearly were feeling uncomfortable about what this oncologist, what is—for example, I think we’ve all had physicians they’ve been dismissive, they have broad-brushed, or they have swept over our questions. What was the inside of you that said that this will not stand?

Lee Swanson:

I got the impression he didn’t have time for me.

Dr. Lamanna:

Can I say one thing? I think we, being the specialist, we see this a lot, so the patients come to us as second opinions, third opinions...

Carol Preston:

...fourth opinions.

Dr. Awan:

A lot, yeah.

Dr. Lamanna:

And I think the reason being, I think there are very fine oncologists in the community, I mean I don’t wanna go to—but you’re an unusual individual, CLL’s not so common, it’s a leukemia, if we put all the leukemias together this is one, but if you put all of them, AML, there are several subtypes of leukemia you guys really represent like four to five percent incidence of cancer in the U.S. So, compared to what most of the oncologists are seeing their butter, the solid tumors, lung, colon, breasts, so on and so forth. So, when they get a CLL patient, and their counts are fine, they’re going 10, 15 count they don’t have time for this.

And we do feel that we hear this all the time, and so we echo the sentiment that you guys need to have some time to talk about your concerns and the issues because it’s brand new to you, they’re like you don’t need treatment you’re fine. So, it’s part of that sense, and that’s wrong, and that’s why we’re trying to educate community docs, that’s why we think you guys need to be with specialists because we do spend that time in council, and I’ll spend a whole hour discussing CLL, and you meet my nurse and nurse practitioner, I mean it’s a whole new support group that we need because we realize that the first year or two after diagnosis that mentally it plays a head game with patients, physically.

So, you know, it’s very important, but we hear that a lot, and I think that’s the biggest reason why patients do leave their primary, some of their initial encounters, so it’s really important I just wanted to bring that up.

Carol Preston:

Yeah, and we all really—we like and many of use treasure our local hematologist/oncologist. I think I have a terrific local hematologist but as I mentioned 10 percent of his practice is CLL, and he’s treating Ray...

Dr. Lamanna:

...it’s not their bread and butter.

Carol Preston:

He said he feels it’s a lot, and actually that is a lot for hematologists, but he’s treating an array of other blood cancers, lymphomas, breast cancer, and so on. So, just touching base, having that touchstone of a specialist either to reconfirm, reaffirm what’s going on, and making sure that there’s communication between the two good local community docs will be very willing and very encouraging to check in with a specialist. As we said, not every specialist can see every patient on the planet and it’s just very welcoming. I think Dr. Lamanna, you mentioned about helping and hoping to educate community oncologists toward that end.

Well, let me turn to my new friend, Al Hollis, who is from this area and you’re sitting way far away from Dr. Awan, but I know he’s your specialist. Al, would you hold the mic up if you would?

Al Hollis:

I’ll come over there.

Carol Preston:

Can you tell us a little bit about your story, please? And we’ll bring Teresa in on how she is a very critical part of determining what your care is. Go ahead.

Al Hollis:

Be glad to. My story is very similar to Lee’s I had a regular annual checkup with my primary care, and I felt great, I mean I felt awesome! And we did a blood test in January of 2018, and blood tests came back pretty abnormal, and I still felt great. He said I’m gonna refer you to a hematologist, okay, no big deal. So, we get on the phone with his recommended hematologist and I get off the phone, and I look at her—and let me say this right now, I’ve been so fortunate 42 years ago, she said yes! And she’s sitting with me here today because, for those of you who are dealing with this personally, you’ve gotta have a partner that helps walk through this with you. It is absolutely critical, absolutely essential.

Someone to lean on, someone to be there, someone to listen to you moan and groan because that’s gonna happen, but someone to be there and advocate for you, sometimes when you can’t talk, or when you don’t know what to say, or what the next word is, or what the next question is. So, anyway, I get this—I make contact with this hematologist, and I get off the phone, I said honey this guy is a hematologist/oncologist, and she looked at me and said what? We had the first meeting with this hematologist, and he ran his series of tests, and our first discussion with him was you have cancer, you have CLL, I said okay what are we gonna do next? He said wait, and she goes what?

You don’t wait with cancer! We both got cancer in our family background, so you know you don’t wait. And that really wasn’t explained very well, so, okay, he knows what he’s doing he’s a professional, I’m cool with that. She wasn’t, she looked at me at the time and said you need a second opinion, you need a second opinion.

Carol Preston:

And we wanna hear from Teresa about that, so if you’d give the mic per forma to Teresa. I would like to ask you, as the care partner, just talk about in your own words you’re on the receiving end of Al’s phone call with the hematologist or visit, and you were apoplectic, it sounds, about what you were hearing. And so, why was that?

Teresa Hollis:

Well, he’s always been extremely healthy, so this was kinda counterintuitive that we would have that degree of a problem, to begin with. And the terminology, he said his internist who referred him to the hematologist, I feel didn’t prepare him for his concerns, how it was gonna unfold. So, he said call this doctor there’s something weird with your blood. That was really what he came home and told me. So, I’m sitting there mainly because I wanna see what the schedule’s gonna be for how we were—and when they answered the phone, he hung up. And I said you didn’t even say hello, he goes that’s an oncology department; he was—it was a shame to give him that blow to not prepare him a little bit.

So, I kinda had my heckles up over that, so he called back and asked for the appointment, and I was struck by something that Dr. Awan said earlier in his talk, that the doctors that get so used to what they’re doing, and that was from the moment this doctor walked into the office it was like we were on the clock, and we were about to run out, and he wasn’t very informative. He certainly was dismissive, you feel good, fine, come back and see me when you don’t feel good. This is pretty much what I remember him saying, the treatment that we’re going to offer you; you have to feel worse than the treatment is gonna make you feel before we begin the treatment.

So, we’re waiting for him to fall apart so that he can start to feel better. So, we did keep going—once I saw what that was like, I did go with him to his future appointments, and every time we’d walk out of there, I kept saying we need to talk to someone else, this is—we’re not getting the whole story here. And only when they finally said okay now you feel bad enough that we need to start chemo, then he’s like chemo? And he’s a very active person so we’re talking about cord placement and the chemo treatments and he did not want to do that. Way did not want to do that. So, he became engaged in what else is there? Finally, he got involved very aggressive about online searching and discovered the information that was available, and I’m taking over your story.

Carol Preston:

No, not at all. But in addition to being patients and patient advocates, I wanna mention, as you heard Al and Teresa say, they have been married for 42 years, no small feat.

Do I remember correctly, five grandkids? Five grandkids, and Lee has four grandkids, and I think he is a bus driver for at least a couple of them.

Lee Swanson:

Designated driver.

Carol Preston:

Designated driver for—especially when they drink, you know you’re not allowed to—no I’m just kidding. So, this is—why is that important to mention? Because you all have lives to live, you have children; you have grandchildren, you wanna travel, you are working—I was talking to Fern who still works fulltime even while she is handling her CLL. So, that’s an important takeaway that life does not stop with the diagnosis. But I will end up saying, and then I’m gonna turn this back over to our panel, that having someone there at your appointments is critically important, it’s as important as seeing a specialist. Why? As a mostly retired communications consultant, I can tell you that memory retention is only 10 percent, and when you hear the word cancer or leukemia, your ears become filled with wax, you hear nothing.

So, it is very, very important, at least in the early stages, to bring someone with you. It could be a spouse, significant other, a friend, even an adult child who can sit there and take notes, because as many of you know from experience you will hear very little. Especially at the get-go. So, for Al, Teresa, in many ways, saved his life. So, that’s...

Teresa Hollis:

...again! Forty-two years, said yes and again.

Carol Preston:

Teresa, you gotta stop doing—yeah, you let Al save your life. So, based on what you’re hearing, Dr. Lamanna you mentioned you heard this a lot, Dr. Awan similar stories when people finally—well you obviously heard it from Al when he came to see you. And I’m not sure it’s because the doctors don’t care, it sounds to me as if many of our community oncologists are just overwhelmed.

Dr. Awan:

You know, I think some of those guys, not some of them, most of them are phenomenal doctors. I think they do a great job, but just half an hour ago, we were having arguments about what’s the right treatment to use.

Dr. Lamanna:

That was an argument?

Dr. Awan:

Or a discussion. But very, I guess, animated discussions were that. But the point is, there is a lot happening in the field, I can barely keep up, I mean I have to really focus every day, study, read, go to meetings, travel all the way to Scotland, all of those issues.

Dr. Lamanna:

Darn!

Dr. Awan:

I know! So, the point is I can barely keep up with what’s happening in the field, and for me to be on my A-game, I have to really spend a lot of time on this particular disease. If I’m seeing breast, colon, lung, prostate, breast, colon, lung, prostate, and every three months I see a CLL, I’m surprised your hematologist sees 10 percent.

Carol Preston:

Yeah, that’s a lot.

Dr. Awan:

That’s a lot of patients for CLL, most of the regular guy who has a clinic down the street from here, they’ll probably see one every three months. You’re being a little unfair to ask that guy to be an expert in breast cancer, expert in colon cancer, lung cancer, which are the most common ones, right? And prostate. Those are the four more common cancers, and then also be really outstanding, the guy has to be a genius. So, I think they do a really good job, some of them have more of an interest in the leukemia world, so they do a slightly better job. But I think what I always wanna know I’m not any special or Nicole or Philip, we’re all regular doctors with a focus in CLL.

But I would love to know, what, other than the Google searching, just because we are online and we have published a few papers that’s fine, that’s what our job is, right? That’s why we are in academics, we are not there for the money, we’re there for the research, and we’re there for education, we’re there for patient exposures honestly that’s what it is. Why can Nicole spend an hour with you? Because she’s gonna get paid the same if she spends an hour...

Dr. Lamanna:

...doesn’t matter if I see five, or 105.

Dr. Awan:

I know! I’m a state employee, so that’s another story. It’s even worse, we get you can have coffee with me, and I’ll be fine. The point is, or we can have lunch together because I don’t...

Carol Preston:

...can you see tomorrow? Just kidding!

Dr. Awan:

I don’t have any motivation to see more patients, that’s the point, you don’t have to stop at 30 minutes, or 15 or 20 or six patients an hour, whatever, I don’t care. So that’s why sometimes my patients get delayed a little bit, and I apologize all the time, but the point is our goal is the best possible patient care for this disease, period, end of discussion.

Dr. Lamanna:

Yep!

Dr. Awan:

The buck stops—the buck stops at you, but I really wanna know other than the, obviously Dr. Kipps is an exception because he’s world famous and he’s been doing this for God knows how long, 30-plus years now, so, we all know him and love him, the point is what was in that discussion with a doctor that made you stick with Philip, or Nicole, or me for that matter, or Kipps. What is it that they said that made you more comfortable? I would love from the physician –

Carol Preston:

So, let’s talk with Al, and then we’ll go to Lee on that.

Al Hollis:

Let me interject here real quickly. And Dr. Awan was—and I’ll call him doc here in a few minutes, but what doc was telling me at the time, he said this is what I think you need, I will work with your local hematologist if you want me to, he said I can do that, that’s not a problem; they can collaborate, if I’ve got a connection with my hematologist then he was willing to make that connection to make that work. My statement was, why would I wanna do that? But he was willing to do that, and I’m seeing this in probably more cases than not, that these specialists are willing to work with those who, maybe, you have a connection with already. It didn’t happen with us; but it is definitely possible, and they’re extremely willing to do that, or I don’t think the reciprocal is the case, honestly.

Dr. Thompson:

It depends.

Dr. Lamanna:

Yeah.

Carol Preston:

That’s your favorite word, isn’t it Dr. Thompson? It depends.

Dr. Thompson:

I definitely try to, because a lot of my patients come from out of state, and if you don’t have a working relationship with that patient’s local oncologist, things can become very complicated if the patient’s having problems. And if because if someone calls me from Minnesota and says, I’ve got a fever and a cough, what do I do? It’s much harder to make an

accurate diagnosis and treat the person without touching the patient. But also, I think, I relish having the role of trying to maybe educate some of the community physicians on some of the new treatments we’re using, and how to use them. I think that’s a pretty important part of my job, so I try wherever possible to have my patients maintain the rela—particularly the ones that don’t live nearby to Houston, I actually think that’s quite important.

Dr. Lamanna:

Yeah.

Carol Preston:

And I just want to—Dr. Thompson remind you last night you said you haven’t been to MD Anderson for a while, maybe it’s time to show up. And I really do need to do that, but I live in Maryland, so some of you are only five miles, like Lee, or 5 minutes, or maybe a half-hour from the specialist that you’re seeing. Many of us are quite far, and even if some of you with whom I spoke this morning are three, four hours from where you see a specialist that’s where the relationship is important, and I know what you’re saying Al about the specialists are always willing to work with the locals and sometimes it’s not in reverse. But that’s where the education comes in; the first hematologist I saw in Maryland was very hurt that I actually would go for a second opinion.

And I went for two, actually. And every time I told them I shuddered because I knew because he was going to castigate me for that, he was gonna scold me for that.

Dr. Lamanna:

Can I make a comment about that?

Carol Preston:

Yeah.

Dr. Lamanna:

So, Phil and I, we see a lot of folks, as we said, from out of state; particularly for patients that I think are about to start therapy or start a new therapy, if they are not coming back to me because they’re really getting that opinion, I will often call the local hematologist to get a feel about that connection so that they’re—because there are certain therapies, venetoclax- based therapy that need to be done with a lot more attention. There are some issues, and so I will often try to get a feel if I can build that relationship, so I can educate and help them treat the patient because some of it could be a little bit complicated. If I get the wrong feel, okay, don’t kill me for saying this, I will absolutely let the patient know I have a bad feel.

And so, I think if your local person is uncomfortable with you getting another opinion, I think that’s a problem.

Carol Preston:

Yeah.

Dr. Thompson:

Fully agree.

Dr. Lamanna:

So, then you need another local person who is willing to work with the specialist; because they don’t do this every day. So, that’s the feel I try to get because, ultimately, I care about what you are going through. As Farrukh said, it doesn’t matter how many we can see in a week; we devote our life to finding a cure, bettering the research. Moving the field forward and taking care of you all, that’s our prime focus we’re in, but we have to help you, and so it does extend to trying to help you find the right person to work with by you because you’re gonna be treated.

Dr. Awan:

And you, you’re more important than any doctor’s ego. You know what? That’s getting hard. You need to find another person.

Carol Preston:

Let me just ask Lee before we, we’re gonna break very shortly we’re gonna take a nice coffee break; and Lee I just wanna ask you before we break, when you met with your specialist in San Diego what did he say that convinced you this is the right guy? Obviously he wasn’t dismissive.

Dr. Lamanna:

Well, it’s Tom.

Carol Preston:

We’re not here to plug any particular specialist, we’re just wondering what you heard versus what you had heard prior?

Lee Swanson:

Well, he explained—he’s perfectly capable of using polysyllabic words, but he explained in plain English what watch and wait was, and what the disease was, and what tests he was gonna—what tests he was going to run. The previous guy it’s just come back we’ll do another CBC.

Carol Preston:

Makes a big difference.

Lee Swanson:

Yeah. He talked to me.

Carol Preston:

You’re right. He spent the time, and that’s what he felt his job was.

Dr. Lamanna:

It’s a terrible term; it’s a terrible term.

Carol Preston:

Watch and worry is what many people call it.

Dr. Lamanna:

It really should be like active observation, I make this plea all the time because you guys are worried, and that makes sense; and so, active observation I like to use a different term because you know if you don’t need therapy you get to—and again part of that—totally different cancer. Which is why they shove everybody out the door going we’ll do a CBC in three months because you don’t need treatment, I don’t have much time for you, but the active observation is very important because if—until we have a cure that everybody can get therapy as soon as you need it, and it’s done, and we can move on, there are patients that never need therapy, there’s a quarter of patients who never need treatment for their CLL.

And so, if I knew who those individuals were, then we could do a test, a blood test, and say that you don’t need treatment, you’re fine, live your life, that would be wonderful. But until then active observation is very important because we then, remember on the back end you guys get to watch all of what we’re doing to move the field forward, all the new therapies that are evolving, all of what we’re learning and pushing forward that you may benefit if you need treatment sometime in the future; then you get to watch all of that on the sidelines. If you don’t need a therapy that may even some of these oral therapies that may give you a side effect right now, you don’t need it; you don’t need it.

So, I think it should be active observation, and with that comes the caveat of the support and the caregivers, and our extended providers; the nurse practitioners, the social workers, psychologists. I know we’ll get into all that stuff, but it’s important that our active observation period is very important, and we just need to help you all support you through that active observation period; because the watch and wait is a terrible term.

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