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Where Quality of Life Intersects With Making Medical Decisions

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Published on December 11, 2019

During day three of our “Daily Wrap” of news announced at the 2019 American Society of Hematology (ASH) Annual Meeting & Exposition, leading experts Dr. Gareth Morgan, Dr. Robyn Scherber and Dr. Ruben Mesa discuss a critical component to a patient’s treatment journey; quality of life. The expert panel shares progress in genetic research for myeloproliferative neoplasms (MPNs) and multiple myeloma in an era of personalized medicine, and guidelines for decision-making that take into account a person’s mental health and well-being.

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Transcript | Where Quality of Life Intersects With Making Medical Decisions

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

Andrew Schorr:

Greetings once again for our live wrap-up program. I’m Andrew Schorr from Patient Power with… 

Esther Schorr:

…Esther Schorr from Patient Power.

Andrew Schorr:          

And, we are in Orlando, Florida. Why? We’ve been here to really gather information, and as we talk with the experts, remember, whatever these experts say, whatever we say, consult with your own doctor, okay? So, why are we here? Big convention over there. 

Esther Schorr:

There are—what did we hear—close to 25,000-30,000 hematologists and oncologists, researchers, and there are even a smattering of patient advocates here.

Andrew Schorr:          

People from all over the world are here, every language, and they’re talking about the latest studies, the latest treatments, the latest testing for conditions we have. Tonight, as we have our wrap-up program, we’re going to talk particularly about myeloproliferative neoplasms. I have one—myelofibrosis.

We’re also going to talk about multiple myeloma, and then we’ll talk about the commonality across these hematologic malignancies because there’s been a lot of progress. Esther also recapped some of the interviews we’ve been doing that. Let’s just start with that. Esther, you spoke to a world-famous expert in a myeloid condition, chronic myeloid leukemia, and that’s Dr. Jerry Radich from the Seattle Cancer Care Alliance.

Esther Schorr:
Right, but the really interesting thing—and, I’ve been hearing this across all of the interviews that I’ve done and across a lot of these malignancies—what he spoke about was how the genetic differences that people have can be indicators—are starting to be indicators of how they’re going to do in treatment and how they might do afterwards. That was one thing he pointed out to me. The other thing—and, I’d love to hear what our experts think about that—the other thing is that there are now so many more kinds of treatments that are now crossing over between different kinds of conditions, because they’re working on the genetics behind it—the variants in the genes.

Andrew Schorr:                
And also, new uses for older drugs, so I think one is azacitidine (Vidaza)—I don’t know if I’m saying that right—and so, they’re finding that in combination with another drug, venetoclax (Venclexta), has a big bang for many people with AML leukemia, and there’s a lot in AML, and we’ve been talking about that.

Esther Schorr:
It’s kind of a big puzzle.

Andrew Schorr:          
All right. Who do we have here? I’m going to start to my immediate right. Our old—they’re all friends. Dr. Gareth Morgan, good to see you. 

Dr. Morgan:    

Good to see you, sir.

Andrew Schorr:          

We know Gareth from Europe, and we know him from Arkansas, and now, you’re a New Yorker.

Dr. Morgan:    
Absolutely. 

Andrew Schorr:          
You’re at NYU. What’s your title?

Dr. Morgan:       
I’m at NYU, and I’m Director of Myeloma Research.

Andrew Schorr:                
Okay, and we’re going to talk about myeloma, and we’ve been talking to Gareth about myeloma for years, and there’s so much more to talk about.

Dr. Morgan:       
Absolutely. It’s been a big meeting.

Andrew Schorr:          
Yeah, very exciting. Okay. This beautiful lady in the middle—Robyn Scherber—is at UT San Antonio.

Dr. Scherber:    
So, I’m Assistant Professor of Medicine, and I actually work with Ruben Mesa, who’s also here with us tonight. 

Andrew Schorr:          
Right, and you’re a specialist in MPNs and myeloid conditions.

Dr. Scherber:    
Yes. So, myeloid in general, though I have specifically focused on MPNs in research.

Andrew Schorr:          
Right. So you know who that guy Jerry Radich is?

Dr. Scherber:    
I definitely do, and a shout-out to all my CML patients out there.

Andrew Schorr:          
Okay. But, next to you is really your mentor, right?

Dr. Scherber:  
Yeah, 10 years.

Andrew Schorr:          
Who is this guy? You tell us. 

Dr. Mesa:             
Ruben Mesa, also from the Mays Cancer Center at UT Health San Antonio.

Andrew Schorr:          
Okay, and Ruben, you’re the director of the center.

Dr. Mesa:             
I’m the director of the center, so I wear both my MPN hat and a broader cancer hat, helping to steer all of our efforts in cancer.

Andrew Schorr:          
Lots of paperwork.

Dr. Mesa:             
Lots of paperwork, but a lot of exciting things, and a chance to see, really, how all these things fit together, not only in blood conditions, but other cancers as well. We learn a lot from each other—adult and pediatric patients, solid and liquid tumors, and even from benign diseases. We’re also learning now from immunology, aging, and other diseases. Again, there’s been a lot of historical silos, but we’re learning a lot more together.

Esther Schorr:
Does that have to do with how cancer is being approached, that you’re looking at them from the… 

Andrew Schorr:          
…whole person.

Esther Schorr: 
The whole person and the genetic differences?

Dr. Mesa:             
I think without question—there are many ways of thinking about it. One way of thinking about it is what do we know about the disease? Let’s just call it a cancer, whether that’s in the plasma cells, whether that’s in the myeloid cells, whether that’s in the cells in the breast or the pancreas. So, what is the biology of the disease as it relates to genetics and the factors within the tumor? But, people are not a tumor. People are people. 

So, it lives within an individual, and there are many factors regarding their health, their fitness, their genetics, their family history that have a big set of implications—how they metabolize drugs, how the disease will behave, other diseases they bring to the equation. And then, the final part is really the cultural part. So, they’re also an individual where their wishes, their understanding, their culture, their support system or lack thereof, their financial support system or lack thereof all are factors. So, we start with the genetics of the cancer, but boy, I could put the same disease in five different people, and we can have five really different outcomes.

Andrew Schorr:          
So, we have a future son-in-law who’s a fourth-year med student. We need to have a recording of that to play that for him and other future doctors because I think that’s—wouldn’t you agree, Robyn?—the whole person and all these factors…

Dr. Scherber:  
Yes. More than ever—it used to be a buzzword, but I feel like now you see it in fruition, which is this idea of personalized medicine, the idea that rather than just treating a cancer type, we’re truly treating the genetics and the specifics of that cancer for that person.

Andrew Schorr:          
And, at that time. So, let’s talk about myeloma for a minute. So, you have a whole bunch of new medicines. There was even one approved not long ago—selinexor (Xpovio)—for some of the sickest people. Now, they’re already talking about combining that with other medicines, changing the dosage, all these kinds of things. So, you’re like a juggling act in myeloma. You have genomic testing, minimal residual disease testing, and maybe testing over time to see if the cancer is changing, is the treatment working. How can anybody keep this straight?

Dr. Morgan:       
You imagine you have a patient in front of you, and you have a toolbox of drugs that you can choose from. Some of them have side effect profiles, some work in specific subsets, so it’s become really important to think about characterizing the patients at a genetic level. And so, one of the abnormalities—basically, only one of the molecular abnormalities is where a drug called venetoclax works. So, if you use it in those patients, they respond, they do well. If you don’t use it in that setting, you don’t get a response.

So, that’s really important, so you can start to put specific treatments for specific molecular subgroups, and what Ruben said, I think, plays out as well, about older people. We now use frailty scores to assess whether a medicine is really applicable in that group because above the age of 70 to 75, drugs can be hazardous for the patient, so you’d better get the decision right. And now, using these frailty scores that have come from geriatric medicine has translated completely into the oncology space.

Andrew Schorr:          
You know, this gentlemen helped lead the way in another kind of study on people’s quality of life as they were living with an illness to also decide about treatment, and what a difference, because certainly, in the MPNs—myelofibrosis in particular—that’s an indication for treatment, is improving quality of life, right?

Dr. Mesa:             
Well, without question, I think we’ve learned a great deal in these diseases as a whole, as it relates to disease-specific symptoms that are linked to biology, and that’s one of Robyn’s areas of focus—studying the biology of those symptoms. But really, how that then links to quality of life.

So, a bit like how Gareth was mentioning the frailty scores, we’re starting to be able to take some of these things that are subjective, but really be able to try to quantify them in a way that really helps us make medical decisions and planning because before, the only, say, objective data we had that sometimes, perhaps, was the only thing looked at was the M spike, was the radiographic image of a bone lesion, or the size of the spleen for MPNs, or the presence of anemia. All those things are relevant, but everything else was not.

We all know that we have friends that are 72, and one 72-year-old may be the picture of health and the other 72-year-old may have a tremendous illness and be really not able to tolerate an illness. So, how does one quantify that? I think we’re learning a great deal more with many validations of how we do this in a way that we can learn, we can compare, we can use that to plan or predict which therapy might be appropriate for an individual, as well as to assess response—whether it’s decreasing the pain in a patient with sickle cell disease, or decreasing the likelihood of a pathologic fracture in someone with myeloma, or improving the symptoms of someone with myelofibrosis.

Esther Schorr: 
And, wouldn’t it also make it a little more complicated as people get older and have more than one condition going on? So, that has to get factored in as well, right?

Dr. Morgan:       
Think of heart disease. It’s very ubiquitous as you get older. Some drugs have cardiac profiles that you really don’t want to expose them to, so that all plays out in the selection.

Dr. Mesa:             
Certainly, Andrew, as you’ve shared with us as well, you face not one condition—you’re an individual, and you have two, and how the two intersect. Gareth, you specialize in myeloma, I do MPNs, but you clearly have had, undoubtedly, myeloma patients that have had other heme conditions, and just as well as I have worked with my Mayo Clinic myeloma colleagues over the years, we had many concurrent myeloma/MPN patients, and how do we balance those two, both medically and management-wise?

Andrew Schorr:          
It’s getting complicated. We’ve talked about the juggling, and yours—the rareness, if that’s the right word, even in MPNs, and the knowledge you have as specialists, and it’s really becoming important for consumers with these confirmed diagnoses to arrange somehow to have a consultation, sometimes even telemedicine—Nicole Lamanna in CLL is doing telemedicine consults—but in-person when you can. Ruben, I know people come from around the world; people come from all over to see you guys to have a specialist with all the knowledge of what’s new, the new testing, the personalization weigh in on your case. 

Dr. Morgan:       
So, there’s that important feature which we kind of introduced. So, you can be presented all of the facts; all of the facts are really helpful, but nothing really counts like seeing the patient in-person.

Esther Schorr:
That’s not the first time we’ve heard that, by the way.

Andrew Schorr:          
Brad Kahl from the Siteman Cancer Center said that. I said, “You go those people”—he’s in St. Louis. Wide open spaces; you have them in Texas. I met a guy from Buffalo Gap, Texas, near Abilene. Anyway, maybe they’d say, “Well, I don’t see a doctor who’s nearby.”

But now, if you have one of these conditions and everything’s changing, very much in the hematology area—Brad said, “I really want to see them. I want to lay my hands on them. I want to feel the lymph nodes. That’s what I’m trained to do with the other facts.” Ruben, I know for years, wherever you’ve been, people have come from all over the world to see you because they have a more rare condition, and that’s what you—you have that wisdom, and now she does, too.

Dr. Mesa:        
She’s phenomenal, without question. I think there really is no substitute for that face-to-face interaction, though. I think it’s really twofold. From our end as specialists, there really is a perception from a patient, both in terms of the disease, but also in terms of their wishes, their culture, their understanding. The second is really educational. It is probably more often than the norm that the patients that come to see us have an incomplete understanding of their disease. These are all incredibly complicated diseases.

Gareth has seen someone with amyloidosis. This is a very complicated concept to have, and most of the time, a patient is probably not going to understand that well, and part of that developing a therapeutic plan is really a shared understanding of what is it your disease is doing exactly, and as we try to approach a therapy, what really are our expectations? What is that therapy going to do? What should you expect from it? How long does it take for us to see whether it achieves what we want it to achieve? How do we judge whether it actually helped or not helped? And then, if it doesn’t help, what is really the next step? 

So, there’s so much—people send us emails with 10 attachments, and at the bottom will be “Should I have a bone marrow transplant?”, which is probably one of the most complicated medical questions one can ask as an email. And clearly, it’s a multi-hour discussion, usually with one or more specialists.

Esther Schorr:
So, in a perfect world, when somebody is diagnosed with one of these diseases, they would come and see you. What’s the next best when you’ve got a barrier like a financial barrier, or mobility issues, or not a support system? 

Andrew Schorr:          
Nobody to take care of your kids, your car is broken…

Esther Schorr:
…what if you have nobody to take care… 

Dr. Morgan:       
…you absolutely need a good local doctor, and then you could do Facetime or this video imaging, but even that—I so totally agree with what Ruben just said. It’s about the education. You can’t just say, “You need this,” because asking a question in a vacuum like “Should I have a transplant?”—maybe that’s not even something they should be considering. There’s a two-way passage of information that you need.

Andrew Schorr:          
So, Robyn, first of all, some people sometimes, I’m sure, come to you who’ve been misdiagnosed. First of all, you’ve gotta get it right, know what you’re dealing with, so testing increasingly and having it done properly with the right pathology labs is critical, right?

Dr. Scherber:    
I agree entirely. I think that’s 100 percent critical. A great example is recently, I had a referral to me for polycythemia vera, and I go through all of their labs, and as some of you might know, there are certain mutations that go more frequently with polycythemia vera, and some more frequently with essential thrombocythemia. So, I’m looking through his previous testing, and I see that he has what’s called a CALR mutation, or calreticulin. Very rare in PV.

And so, I start looking at his case, and I’m like, “I know you’ve been diagnosed with PV, but let’s go back up here.” So, I start talking to him, and it turns out he’s on high-dose testosterone. So, we started to have this long discussion of, “Well, let’s talk about this a little more. What happens if we get you off the testosterone and just see what your blood counts do?” He was willing to do that. Sure enough, his erythrocytosis—the high red blood cell count—came right down, and it was just high platelets. So, it was very interesting, and of course, we’d had the bone marrow biopsy results and things like that, but without really seeing the patient and getting that good history, there can be a huge difference. 

Andrew Schorr:          
I want to mention—I’ll just tell a story. Someone I knew in New York wanted me to talk to her cousin, who, for a number of years, had been going to a suburban New York doctor, being treated, I think, with interferon or something like that for an MPN diagnosis. I said, “You really should see a specialist.”

So, he went to—I don’t know if you’ve ever met him; you know him—John Mascarenhas at Mount Sinai. I said, “You’ve got to see one of these people in New York,” and he took the train in and he did it. Guess what? He didn’t have an MPN. So, he’d been going through treatment for years, and he never talked to anybody about it, but the mental stress of it—So anyway, it was really good that he did this. While I’m thinking about it, this lady—Robyn—is an award winner, an MPN Hero. Ruben, you’ve been an MPN Hero, I’m sure.

Dr. Mesa:             
I was honored to receive that a few years back.

Andrew Schorr:          
I got it one time, too. It was a great honor. 

Esther Schorr:
Not for your medical expertise. You got it for your patient advocacy expertise. 

Dr. Mesa:             
His contribution to our community, absolutely.

Esther Schorr:
There you go.

Andrew Schorr:          
But anyway, the point is that we are also honoring a variety of heroes, and one of them was a physician assistant, I think, from MD Anderson, and she has been working on the mental health, if you will, aspects of a cancer diagnosis, and she’s been really touched by people in the anxiety or depression we may have.

And, we had a guy here sitting in that chair earlier—a fellow treated for AML, 78 years old, thought he had the flu, the flu didn’t get better—“You have cancer, you have AML, and you’re going to need pretty aggressive treatment right away.” And, he just felt punched in the face, and he was pretty down about it. His whole life of retirement, golfing, fishing, making furniture in his workshop—Now, fortunately, he’s doing well, but the whole patient and the emotional aspects are things we have to pay attention to too, right?

Dr. Scherber:  
I agree entirely. Actually, one of the things our group presented at ASH this year was really looking at quality of life and the different contributors to that specifically for myeloproliferative neoplasm patients, but what was interesting about what you’re saying is that along with symptom burden being a major contributor, depression or mood and anxiety were also significant contributors. Out of all contributors, those were the most highly correlated with quality of life. So, if we want to try to aim for improved quality of life, we have to think about mental health. If we don’t, we’re missing a huge component of treatment, to be honest.

Andrew Schorr:          
Gareth, it’s the uncertainty. You can talk about all these approaches you have, but we’re still on an adventure, whether it’s going to work for us, and is it going to poop out on us, and then you’re going to have to go to something else, and there are different side effects? Will we eventually need something else, like experimental CAR-T therapy? 

Dr. Morgan:    
I would say around—patients like a degree of certainty and a plan, so I think doctors should have a strategy for their whole-disease journey, and not just what you need now. You need what you need now, what you might need in the future, and if you can do a genetic assessment as well as a sort of personality—get a relationship with the patient, I think you can predict those patients who are going to do particularly badly, where you might want to customize the treatment. 

And, it’s this genetic assessment. We heard about calreticulin mutations. There’s really been a buzz in the meeting about that. Assess the cancer at a molecular level, integrate that with your clinical knowledge, and then use it to make the patient’s information better. If you know you’ve got more aggressive disease, treat it appropriately. If it’s going to be there for some years, then you might want to take a different strategy.

Andrew Schorr:          
Well, I’ll share a personal example, and I’m going to talk to you about this later, too, Ruben. So, in my own myelofibrosis case, my platelets have been trending down and my spleen has been getting a little larger. So, my doctor, who you know, Catriona Jamieson, has said, “Maybe we should—there’s a new inhibitor. Maybe we should try that out—fedratinib (Inrebic)—as another drug.” 

Well, for me, I obviously considered that, but next month, when I try that, will I have different side effects? How will it affect my life? So, while you have ranges of treatments and new approved therapies or a trial you might suggest, for us, it’s kind of scary…

Esther Schorr: 
…to make a change. I’ve also heard patients—as well as their care partners—say, “Okay, this treatment is going to happen now, and once it’s done, I want a plan B. What am I going to do if another shoe drops?” So, what you’re talking about is having at least a little more information about what the path looks like—so, you’re here now, and then, hopefully, some good time will pass, but if it goes this way, here’s what we can do, if it goes that way, we can do this.

Dr. Morgan:       
It’s kind of like this idea of informed consent. “This is slightly different.” I think you have to inform the patient about what their likely outcome is going to be as well as you can, and then manage their expectations over that time so you can get them—so all of our aims is to get younger, fitter patients back to work, back with their families, with their children, and I think we can start to achieve that now in a variety of disease states, and it’s important that patients get that education, so I’m all about educating the patients.

Andrew Schorr:          
See, one of the uncertain things—and, we’ve talked about it over the years, Ruben—is people might initially be diagnosed with essential thrombocythemia, but they know that it can progress to polycythemia vera, that can progress to myelofibrosis, but they don’t know when or if, right? And, that’s—people worry about—they know that any of them can be serious and have their own issues, but that’s scary. So, Ruben, how do you help people take a breath—these are very long-term conditions—so that we can just go on with our life?

Dr. Mesa:             
Well, it’s a critical point. The anxiety over the uncertainty is something to be managed, and if people underestimate it—physicians underestimate it—it really is a barrier. So, let’s talk CLL.

One of my colleagues, Tait Shanafelt, did a very nice study as we were looking at these symptoms in parallel, and they did a study asking about how the physicians had framed the diseases, and that if the physicians had labeled it the “good leukemia,” then—which is an arbitrary frame of reference, because there’s always somebody who’s going to be more sick than you or less sick than you, but it pretty much shut down the conversation. So, here, a patient had anxiety regarding their future, but they felt that they couldn’t even bring it up, because they had been told they had the “good leukemia.”

Esther Schorr:
“Don’t worry. It’s a good kind.”

Dr. Mesa:        
As opposed to what? I was hit with a good hurricane as opposed to the bad hurricane. What you speak of, Andrew, is really mindfulness. These are long-term chronic illnesses. Life is life. None of us truly know what the future holds. There could be a terrible accident or illness that could take any one of us at any time. That is a bit of the uncertainty we live with in life. But, how do we compartmentalize that?

So, I think there are opportunities. There’s colleagues of ours that are looking at things that are called ACT therapy, which is sort of a cognitive therapy that is a type of mindfulness. How do you take something that—there is no way Gareth can give his myeloma patient absolute certainty, but how do you frame it in a way that gives you permission to put that in a box, close that box, and not worry about that for today? Yes, tomorrow might be different, but we’re going to give you permission not to worry about it today, so you can enjoy that day. If you waste that day worrying about what might happen, then you really ruin the purpose of the quality of life that you’re having.

Andrew Schorr:          
Robyn, you and your friend—also another MPN specialist, Angela Fleischman—you’ve been working on managing symptoms and also diet, and she’s been working—maybe you too—on the Mediterranean diet. So, for instance, with every forkful, I can feel like I’m helping my health—taking back control.

Dr. Scherber:  
Yeah, I think that’s a really important thing, just knowing—it ties back into this whole idea that quality of life is important. There’s things that you can actually do for yourself to improve your quality of life. Certainly, our interest is in nutrition, and we’re looking through the Mediterranean diet, and also to see if there’s other types of diets –

Andrew Schorr:          
To lower inflammation, which is active in MPNs.

Dr. Scherber:    
Right, lower inflammation, and there’s some signal that we actually might be able to target the metabolism of mutant stem cells, and that’s really what my research is trying to focus on right now.

Esther Schorr:
That’s really cool. 

Andrew Schorr:          
Don’t feed them. 

Esther Schorr:
Right! Starve the bad guys.

Dr. Scherber:      
There’s some data here that you can actually understand what stem cells eat, especially stem cells that have mutations. I could talk for an hour on that another day. 

Andrew Schorr:          
Interestingly, in CLL, there are different Facebook groups—as there are in all these conditions—there’s a woman named Maria Taylor who has a Facebook group—you can look it up if you’re on Facebook—that’s called CLL Anti-Cancer Warriors, and it’s all about nutrition. They’re all trading information, and some of it, I’m sure, is science-based, and it probably ties…

Esther Schorr: 
…and, some of it is not.

Andrew Schorr:          
Thank you, Esther. Not to be crazy-making—I’ll just tell one quick story—some of you have heard of Dr. Andrew Weil. 

Dr. Mesa:             
Sure, in Tucson. 

Andrew Schorr:          
When I was diagnosed with CLL, he’d written a book, and a lot of people were juicing, and I remember saying to my CLL specialist…

Esther Schorr:
Spontaneous healing.

Andrew Schorr:          
…to Dr. King about carrot juicing, because there were people doing carrot juicing. Remember that? He said, “No. First of all, there’s no proof, and you could be feeding the cancer. You don’t want to feed the cancer.” So anyway, there’s been a lot of study and discussion about sugar and everything else… 

Esther Schorr:
…we’re talking about some really great specialists who are looking at this disease…

Andrew Schorr:          
Do the science. 

Esther Schorr:
…so you have to balance where—what’s your source? 

Dr. Scherber:  
We need to do the science. Until that time, really, it comes down to living healthy, and this is not exactly rocket science. It’s making sure that you’re getting out, you’re able to walk, and able to eat healthy things—things high in micronutrients, like vitamins and minerals. Even different types of spices can be rich in anti-inflammatory potential that are just part of a healthy diet. But, I think it’s also important, again, to think of that mental health—this idea that being around people that you love, that you enjoy being around, and doing things that are important to you that also potentially give back to others. I’ll be honest: It’s one of the best things you can do for your mental health.

Andrew Schorr:          
Let’s talk about—I know you and I have done programs before on symptom management—symptoms and side effects. So, cancer medicines are powerful, and as we like to say, there’s no free lunch. They have side effect profiles, and then, there are symptoms of the diseases as well. That needs to be an active conversation with your provider. For instance, we knew with the earlier myeloma medicines—neuropathy. You’ve got to speak up.

Dr. Morgan:       
Neuropathy—They were designed as sleeping tablets, some of them, so they made people a little wobbly mentally, tired all the time, and you’re suggesting to them they stay on them for three years and beyond. You have to manage the side effect profile constantly. It’s not like “Come back and see me in a year.” This is an ongoing conversation on a regular basis.

Andrew Schorr:          
And, we have to speak up or our care partner has to speak up. Sometimes the men—I know you say, “How are you doing?” “Fine.”

Esther Schorr:
“No he’s not.”

Dr. Morgan:    
Yeah, so, there’s this other thing: Once you’re on a drug, people become sort of mentally dependent upon it, and so, if you see them with a side effect profile that you know, and then you suggest, “Well, maybe we should stop this now,” then that causes as much anxiety...

Andrew Schorr:          
...because it’s their lifeline, or they feel it is.

Dr. Morgan:    
Absolutely. It’s important to manage that appropriately. 

Esther Schorr:
That was another topic that’s come up over the last few days, is the idea that as these new potential treatments come up that there’s a deep looking at intermittent therapy, where you go through, you get treated, and then, if you get to a certain—what is it?—a minimal… 

Dr. Morgan:    
Minimal residual disease. 

Esther Schorr:
…a minimal residual disease that maybe you can stop out for a while, and that some people become dependent. 

Dr. Morgan:    
That’s become really important in myeloma—so, getting people to MRD negativity is important. I really don’t know what happens in myeloproliferatives anymore. It’s probably not where you are these days. 

Dr. Mesa:             
Right, but different thresholds. I think each of our diseases are different states. We’re clearly each trying to come up with an equilibrium, where we’re trying to have the best amount of control, avoid progression, and decrease the immediate morbidity, whether that be in myeloma, whether that be in the MPNs. It looks different in each. Objectively, in myeloma, you guys probably have had more success—in terms of the degree of decrease of the burden of the clonal neoplasm, myeloma probably has been more successful. We’re certainly hoping to get there, but we’re not there yet. 

Andrew Schorr:          
So, I want to look into the future for a minute in the last couple minutes. So, we’re hearing a lot about immunotherapy. Now, let’s face it: Transplant is immunotherapy. If you’ve gotten somebody else’s cells, that reboots, right? A different immune system. And, our immune system let us down, where we have aberrant cells that proliferate. So, now we’re talking in some of the areas about chimeric antigen receptor T-cell therapy, or in myeloma, BiTE and all this kind of stuff. So, different monoclonal antibodies that can trigger your immune system to do things. So, I guess looking in the future—you’re a director, you’re a director, you’ll someday be a director—across other cancers…
I don’t mean this to be "Star Trek, "where they can just scan you and then you’re fixed, but will we get to the point where someday, we can have the immune system do its job in a relatively nontoxic way and have this surveillance for these aberrant cells?

Dr. Morgan:       
We’ve spent 25 years waiting for a vaccination for cancer, and because of some of the reasons you’ve said, it was never going to happen. And then, technology caught up with the issue, so there’s a marker on the myeloma surface called BCMA, so now you can have an antibody that recognizes it, goes straight to it, one that recognizes it, has a tail that brings a T cell to it, causes it to die. 

Or, you can take a T cell and engineer it to recognize that antigen, and we heard the presentation today where people with an average outcome of six months—all of them went into a complete response following exposure to a CAR-T cell recognizing BCMA. That’s the kind of revolutionary treatment that’s going to replace transplantation in the next years.

Dr. Scherber:  
We see that in the MPNs, too, where our main colleagues in Houston have new immunotherapies that they’re trying. There’s new CALR—calreticulin—vaccines that some of our colleagues, both in the Hutchinson Seattle and Dr. Hasselbalch and his team in Denmark are looking at. It’s exciting times. It’s something that I think even five or 10 years ago, when we first started, we probably thought it was not feasible.

Dr. Mesa:             
It’s truly a revolution. It’s certainly thinking about a cancer broadly, and there’s multiple different approaches, but there’s clearly some diseases where this works really well, and others that have really been much more resistant. So, there’s part that’s a nonspecific overstimulation of the immune system. That’s actually made a big difference in many of the solid tumors, where these PD-1 and PD-L1 inhibitors—they’re just revving up the immune system and let it go to town, but in a nonspecific way.

What Gareth is saying are very specific targeted things that were using technology, or vaccines, or cellular-based therapies, or CAR-T to go after specific antigens, and maybe we’re smart enough to predict what those are, but maybe the other approach has a bit of it as well, where we’re not as smart as the immune system, but let the immune system do it. I think all of these approaches are ongoing. The future includes the immune system and other things that we’re just now dabbling our feet in.

So now, this past year, the first gene editing-type therapies have begun in sickle cell disease, where again, there’s an aberrant gene, and using CRISPR, they’re trying to correct that. Now, many technological barriers for malignant disease, but again, are we finally going to make some headway in terms of you have a bad gene and we fix it? 

Andrew Schorr:          
It’s like a word processor for cancer. 

Dr. Mesa:             
Exactly. 

Esther Schorr:
I was just thinking listening to this—all of these treatments right now are reactive. You identify something that’s already happening because of that defective gene or something, but I guess “Star Trek” would say maybe in the future, if you detect that before something goes wrong, to fix it. So, is that…

Andrew Schorr:          
…really, the way we think of vaccine—get the flu shot before you get the flu—will we ever get—we have preventive behaviors in many cancers, or screening tests, or things like that. Boy, wouldn’t it be great if we could orient our families—if you see a familial connection? Angela, your friend, is studying that where we say, “Here are some activities we can do to limit the risk of this developing for you.”

Dr. Scherber:  
Well, tying into aging, which was something you had mentioned before, is this idea that although, certainly, we’re still figuring out as a science where to put this, we realize that there can be—just with aging—what are called epigenetic changes, where we actually have changes in how the DNA is wound. That’s another theme of ASH, is the idea that over time, there can be changes in our blood system that might predispose us, not only to blood clots, but potentially even to different types of cancers. What if, down the road, there’s something we could do about that and that prevention aspect? 

Andrew Schorr:          
Okay, you’re going to figure it out in your career, okay? 

Dr. Morgan:       
What are you saying about me and Ruben? 

Andrew Schorr:          
I want to give her plenty of time.

Esther Schorr:
She’s the one that’s under pressure now. 

Andrew Schorr:          
So, what I think the folks in TV land are looking for in these different conditions—and generally in these blood conditions—is are you hopeful for them and for us? So, myeloma, you’ve seen tremendous changes in the last few years, and we can talk about some of these technologies, and next year, we’ll have more data. Are you hopeful that people can live a longer—not everybody, certainly, but more people live a longer and better life?

Dr. Morgan:    
Absolutely. So, cure is really a realistic endpoint now in myeloma, and the other exciting new endpoint is interception of people with premalignant diseases. So, we have a good marker in myeloma, and I was going to ask these guys about CHIP mutations and where you go with CHIP mutations in myeloproliferative disorders. 

Andrew Schorr:          
There are other mutations you’re spotting. So, are you hopeful?

Dr. Scherber:  
I am very hopeful. The trick is that we have to find the right setting and the—in terms of—with mutations in the DNA that might happen when we get older, the reality is that’s a large percentage of the population, so we’re going to need to find therapies that are really nontoxic, that can be used in a large percentage of the population, that won’t interfere with other medical illnesses that might be going on, other medications people might be on. So, I am extremely hopeful. I think now, we know more than ever, but it’s really going to be the art of medicine in figuring out what do we do about it?

Andrew Schorr:          
And, you’re hopeful for the MPNs?

Dr. Scherber:  
Definitely. We’re not as far along in terms of a cure, but we have more therapies than ever, and I think therapies that are getting close.

Andrew Schorr:          
Ruben, your center treats all cancers, rare and not. How are you feeling about things? Some, we have a ways to go. Pancreatic cancer, we’re fighting about, others I’m sure you can name, but a lot of the ones here in hematology—tremendous progress.

Dr. Mesa:             
I think there’s a tremendous to be incredibly hopeful for MPN patients, for myeloma patients, but really for cancer patients overall. I think for active disease, we clearly are developing much better therapies almost irrespective. We all know people that are very much in the news who really have diseases that are so active who otherwise would have had a very different experience a few years ago—Alex Trebek, Ruth Bader Ginsburg, on and on…

Andrew Schorr:          
…Jimmy Carter.

Dr. Mesa:             
Right, that have had metastatic melanoma to the brain, multiple diseases that would have been rapidly fatal before. And, MPN is incredibly hopeful from what we saw today. We saw, really, a thriving set of interest, a deep global community of investigators, exciting advances with multiple new therapies, but maybe the things that we’re learning with other diseases—things that Gareth and his colleagues are learning—might well apply to us, and vice versa.

But, the other part you raised is key because health does not begin only with the therapy of active disease. It’s prevention, it’s screening, it’s risk-based screening, but it’s, again, how do we identify illnesses and how do we separate the deviation of the normal aging process from illness, and how do we nip that in the bud?

The small clone of plasma cells, the isolated increase in these what—Gareth had mentioned CHIP, where again, we identify that there are all sorts of perhaps small, premalignant conditions that may or may not progress. How do we identify them? How do we keep them at bay? So, an incredible reason to be hopeful from both ends of the spectrum: Aggressive disease to how do we enjoy the best health that we can throughout our walk?

Esther Schorr:
You heard it here.

Andrew Schorr:          
Again, a few talking points. One is if you have one of these conditions, do your best to weigh in with an expert in what you’ve got so that these leading science—people who are sensitive to the whole person—their knowledge can be brought to bear for you, and speak up: How you’re doing, what you’re worried about, the symptoms you’re facing, the side effects you’re having on a treatment that’s being tried. Go with somebody who loves you, listen carefully, ask questions…

Esther Schorr:
Take notes.

Andrew Schorr:          
…be prepared for your visits, make sure that you’re getting the state-of-the-art testing that now exists so you and your family members and your doctor have a clear picture of not just where you are at diagnosis—with an accurate diagnosis—but also on your journey because this wily cancer changes. How’s the treatment doing? Those are some things that I think about, and now we’re seeing—with disease that’s spread—people living longer, living better. So, that’s our hope for you, for me, our loved ones.

Esther Schorr:
I like that.

Andrew Schorr:          
We’ve been married 34 years. Let’s make it another 34. 

Esther Schorr:
Oh, we’ll be really old, Andrew.

Andrew Schorr:          
Ruben Mesa from San Antonio, and our dear friend—thank you for being with us, Ruben. 

Esther Schorr:
Yes, thank you. 

Dr. Mesa:        
Thank you. 

Andrew Schorr:          
Your dedication—you have a busy week coming up, too, in San Antonio. Maybe you’ll help out, too, there in San Antonio, Robyn, and thanks for being a dynamic duo there for MPNs. I really appreciate it. Gareth, thank you for being with us…

Dr. Morgan:    
Thank you.

Andrew Schorr:          
…and your wife, Faith, and your devotion to multiple myeloma patients.

Dr. Morgan:       
Thank you, Andrew.

Andrew Schorr:                
I’m Andrew Schorr. 

Esther Schorr: 
I’m Esther Schorr, and don’t—you knew that I was Esther Schorr—and don’t forget that knowledge can be the best medicine of all.

Andrew Schorr:          
We’ll see 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.

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