Cancer.Net Podcast

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

Monika Sharda: Hi, I'm Monica Sharda, an editor on the Cancer.Net team and your host for today's podcast. In this episode, we're going to discuss 2 studies on patient experiences with clinical trials that will be presented at ASCO's 2019 Quality Care Symposium. This annual meeting brings together health care experts to share strategies for cancer care issues and integrate these methods into patient care. I have with me 2 oncology experts who will help us understand these studies and why they're important. Our first guest, Dr. Merry-Jennifer Markham is a hematologist at the University of Florida in Gainesville. Welcome, Dr. Markham.

Dr. Markham: Hi, hi. Thanks for having me.

Monika Sharda: And we also have with us Dr. Neeraj Agarwal, who is a medical oncologist at the University of Utah's Huntsman Cancer Institute. Thanks for being with us, Dr. Agarwal.

Dr. Agarwal: A pleasure. Thank you.

Monika Sharda: So before we delve into the studies, I want to make sure we explain what clinical trials mean for any listeners who may not be familiar with the term. Can you provide a brief explanation of what a clinical trial is and how they're used in cancer care?

Dr. Agarwal: Yeah, of course. So if we look at the definition of National Cancer Institute, how the clinical trial is defined that is a type of research study that test how well new medical approaches work in our patients. And these studies test new methods of screening, prevention, diagnosis, or treatment of a disease. These are often called as prospective clinical studies, but I make it simple for my patients. I tell them that to me the definition of a clinical trial is how to get cutting edge technology, which can be a treatment or a device, to my patients 5 years before FDA approval of that drug or a device. How to expedite availability of those cutting-edge technology to my patients is the definition I use for clinical trials.

Monika Sharda: Thanks. That's a great way to put it. So let's start by discussing the study that comes out of Seattle, Washington where researchers looked at whether participating in a clinical trial helped people with metastatic non-small cell lung cancer live longer. Can you tell us a little bit about how the study was conducted, Dr. Agarwal?

Dr. Agarwal: Yes, and this study, as you mentioned, was conducted in Seattle Cancer Alliance consisting of University of Washington and Fred Hutchinson Cancer Research Center, both based in Seattle, Washington. What the researchers did, they looked back at the records of patients with non-small cell lung cancer or simply advanced lung cancer who were treated in their institutions between January 2007 and December 2015. And they included 371 patients. One-third of those patients, almost 30% of patients were enrolled on 1 or more clinical trials. And other patients were not enrolled in the clinical trials. And they compared, basically, those patients. They looked at the survival of patients who were able to get on a clinical trial versus who did not. And very interestingly, patients who were enrolled on a clinical trial, their median survival was twice as much as those who did not get to enroll on a clinical trial. The overall survival in patients who were on clinical triasl who got to get treated on a clinical trial—at least one clinical trial—was 838 days compared to patients who did not go on a clinical trial who only lived for 454 days. This is even more interesting is because the researchers compared the patient's disease characteristics, demographic characteristics, and they made sure that patients were evenly distributed from those characteristics. It's not that patients who had more aggressive disease or who had a higher history or longer history of smoking, they got to be under control arm, which is that they did not get on the clinical trial. So patients in both groups were evenly matched for demographic and disease characteristics. So this basically tells me that if you get to enroll on a clinical trial, the overall survival is higher than if you do not.

Monika Sharda: And do we know why that might be? Why patients that were enrolled in clinical trials tended to live longer?

Dr. Agarwal: As I said, clinical trial allows me and my patients to have those technology or those drugs available to the clinic 5 years before FDA approval. And that's the ballpark. It can be 7 years. It can be 10 years. It can be 3 years. But in general, 5 years is the mark I use with my patients. So if a patient is getting to be treated with a drug 5 years before that drug would be available by prescription, there is an advantage of time, because if we look at the median survival of this patient population, there is no way they could have just waited for that drug to get approved and be available by prescription in the clinic. So I think that's a huge advantage, that they had access to a drug for their cancers which was not available to those patients who did not get to go on a clinical trial. I think that's the number one, or the main advantage, why the survival is so much better in the patients who got to go on a clinical trial.

Monika Sharda: Right. And the other study focuses on clinical trial enrollment. So statistics show that less than 10% of people with cancer participate in clinical trials. For this study, researchers surveyed 120 doctors and clinical trial research staff and also 150 cancer patients to try and find out why participation is so low. So Dr. Markham, can you tell us briefly what the researchers found?

Dr. Markham: Sure. I think 1 of the things that is striking is that the number of patients who enroll on trials is so low, the percentage. And we know the barriers to clinical trial enrollments do exist. What this study showed actually was that the perceptions of what these barriers are, really differed between the physicians and research staff and the patients. So clearly we didn't have a great understanding of the barriers on each side.

I'll give you just a couple of examples. In this study, patients more often than physicians or research staff believed that trials are only available and only for people whose cancer is considered hopeless. We know that's not reality, but that's a perception that panned out in the study. Also more patients, more so than physicians or staff, believe that clinical trials don't help an individual patient. And we know that not to be true. And I think that former study is a really good example of that where in the prior study participating in a clinical trial actually did improve survival. And then a third example is physicians and research staff in the study, more so than patients, were more likely to believe that patients decline a clinical trial due to either language or cultural barriers or due to a lack of understanding about clinical trials.

Monika Sharda: Where do you think these perceptions arise from that people have about clinical trials, just going back to the couple of examples that you gave? For example, people thinking that clinical trials are only used when their disease is hopeless or that they don't actually help the patients themselves. Where do you think those perceptions stem from?

Dr. Markham: It's hard to know, but I think communication or lack of communication about trials, or lack of enough communication about clinical trials is really a large part of the problem. I think that clearly this is evidence that we oncologists and cancer researchers maybe haven't done a great job or as good a job as we should be doing when it comes to educating our patients. I think this study demonstrates that we do have a lot of room to improve on the patient education piece.

Monika Sharda: Do you have any thoughts on some specific ways that people with cancer and their family can work together with doctors to communicate better about clinical trials?

Dr. Markham: I think the more education on the cancer or various topics that patients want to bring up in the exam room, the more sort of preparation work a patient and a caregiver can do in advance of the visit the better. Coming to an appointment with a list of questions about trials for example can really help to guide a conversation. I think that it's also a good idea to bring somebody with you to an appointment and this holds true for other reasons, including listening in and having some extra set of ears there to hear important parts of a discussion about a cancer diagnosis or prognosis or treatment. But really helping to sort of prompt questions about clinical trials may be useful.

I think for doctors, a good way to open up this conversation is just with open-ended questions. Some of the things I like to ask my patients are, "What do you know about clinical trials?" or, "What would you like to know about clinical trials?" And this is really a good way for me as a physician to gauge the level of understanding of a trial at the outset. And I can gauge whether there's any perceptions or misperceptions that I can help to clarify. And it's a great launching pad for a discussion about clinical trials.

Monika Sharda: Dr. Agarwal, did you have anything to add about this study?

Dr. Agarwal: I think I agree with everything Dr. Markham just said. In my practice, I spend a significant amount of time when I see a patient for the first time who has come to establish care in my clinic, on just orienting them on clinical trials regardless of whether they are currently eligible for the trial or we have a trial for them or not. I just talk to them about the clinical trials. And that is a theme in my practice. Even a nurse practitioner and nurses, the more our patients hear about clinical trials, I think more amenable they will be or they are, in our experience, to accept enrollment on a clinical trial down the line. But as Dr. Markham said, it's not only 1 doctor or 1 nurse or 1 nurse practitioner. I think it has to be a more holistic approach educating at different levels. All the websites as we discussed as we know of from Cancer.Net, NCI, ClinicalTrials.gov. All those websites have great information on clinical trial availability of a clinical trial for a given disease condition or given stage of a disease. By doing all of those our patients can be made aware of all those websites other than the orientation in the clinic. So I think this has to be a global approach and which ultimately will lead to increased awareness and increased participation of our patients on clinical trials.

Monika Sharda: Thanks. And I appreciate you sharing some resources with our listeners of where they can learn more about clinical trials so they can be prepared to have these conversations with their health care team. And just a quick note for our listeners, you can learn more about clinical trials on Cancer.Net by visiting cancer.net/clinicaltrials. And there's also a couple of other resources that Dr. Agarwal mentioned. Dr. Markham, did you want to add any other resources?

Dr. Markham: Sure. So Cancer.Net is definitely a great resource. And it's written in a way that is easily understandable. The other 2 that I would mention are the American Cancer Society's website and the National Comprehensive Cancer Network or NCCN. And both of those have very good information about clinical trials in general. ClinicalTrials.gov, as Dr. Agarwal mentioned, also does and can be a very useful tool at finding a specific clinical trial for a specific condition.

Monika Sharda: Great. Well, thank you both for taking the time to distill these studies and the takeaways for people with cancer and their loved ones. Is there anything else that you would like to note about either of these studies or about clinical trials in general that we haven't already touched on?

Dr. Markham: Yeah, I was going to say I think I would just add that I commend the researchers who did these studies and are getting their work published. I think it's important that we improve access to clinical trials as much as possible. And these two studies help to work in that direction.

Dr. Agarwal: I agree, 100%.

Monika Sharda: Great. Well, thank you both again for your time.

ASCO: Thank you Dr. Agarwal and Dr. Markham.

You can find more research from recent scientific meetings at www.cancer.net. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

This Cancer.Net podcast is part of the ASCO Podcast Network, a collection of 9 programs covering a range of educational and scientific content offering insight into the world of cancer care. You can find all 9 shows, including this one, at podcast.asco.org.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

In this podcast, registered dietitians Julie Lanford and Debra Benfield will discuss food anxiety before, during, and after cancer treatment, including potential causes and healthy ways to address food anxiety at any stage of treatment. Julie Lanford is a registered dietitian with Cancer Services in Winston-Salem, North Carolina. Debra Benfield is a Master's Level Nutritionist as well as a Registered Dietitian Nutritionist and Licensed Dietitian Nutritionist in Winston-Salem, North Carolina.

ASCO would like to thank Ms. Lanford and Ms. Benfield for discussing this topic.

Julie Lanford: Hello. I'm Julie, and I have been a registered dietitian for 13 years, and almost all of that time has been spent helping people facing cancer. Currently, I work for Cancer Services, a community non-profit in Winston-Salem, North Carolina. I have a master's degree in Public Health. And I'm a board-certified specialist in oncology nutrition, as well as being a registered dietitian. And I write cancerdietician.com. And today, I am here with my friend and colleague, Debra Benfield.

Debra Benfield: Hello. Thank you for having me. So just a few sentences about me, my name is Debra Benfield. And I am also a registered dietitian. I have been in practice about 30 years. And most of my time has been working with folks who have a complicated relationship with food and their bodies, all sorts of disordered eating, as well as actual eating disorders. And I'm also a yoga teacher, so I bring in somatic practices or practices that include the body and breath, along with helping people normalize their relationship with food. So that's what we'll be talking about today, I think.

Julie Lanford: That's right. So our topic today is food anxiety, which is an interesting topic, I think. Having worked in oncology, it's sort of something that, I guess, maybe I refer to on occasion. But the interesting thing is that we don't really have a definition for it in a clinical kind of environment. And so having Debra here, with so many years of experience working with this sort of complicated thing, I wanted to get her thoughts, in terms of, how do you define food anxiety? Or what does that mean?

Debra Benfield: So when you first asked me about this, we did talk about the fact that it is a term that doesn't exist in the world. So I think we've created a lot of anxiety around food. I think our current cultural conversation around food is full of fear and anxiety and very dogmatic belief systems that create more emotion. So the actual definition of anxiety, as I looked it up, is "distress or uneasiness of mind caused by fear." And I think if you apply that to food, it makes perfect sense. That is what I think I work with a lot in my practice, is a sense of distress or uneasiness of the mind, that is actually caused by fear around food choice, which is a very uncomfortable reality. Because we all know we need to eat many times, every day. We can talk about what that feels like. But that's a pretty hard place to be in the world. Because food, in my opinion, is something that brings pleasure into our lives and gives us a sense of energy. And we're going to talk a little bit more about the mental health aspect of how we feed ourselves to nourish ourselves. So that's what I think now exists, as far as food anxiety.

Julie Lanford: Great. So in an oncology setting, there are sort of 2 areas that I see, maybe 2 groups—I don't know what you would call it—regarding food anxiety around time of diagnosis or during treatment or after treatment. So the 2 types, for lack of a better term—1 is when cancer and its treatments cause difficulty with eating or digestion, and therefore that makes mealtime or post mealtime stressful. So some examples on that would be, if somebody has had part of their GI tract removed—so part of their colon—or when they have an ostomy bag, or they just have a change in their bowel habits, where whenever they eat, they have to be located close to a bathroom. Or they have side effects from certain foods that cause them to not want to be in public or that make them afraid that the food they're eating is going to cause a problem. Or if they're having nausea from their cancer treatment, they're afraid to eat because they don't want to have an adverse effect that makes them feel bad.

And so that's 1 challenge that I think people have, especially around having to be located proximate to a bathroom. I know that that keeps people—either they have to time their meals a certain way, based on what kind of activities they want to do for the day, or they cannot choose their favorite activities because of their digestive issues. So that's 1 area.

And then the other sort of group of cancer survivors that I work with, who have, I think, challenges with food anxiety, is around the idea that they're afraid that something they've eaten has maybe influenced the growth of their cancer. So that there are certain foods that are toxic that caused cancer to grow, or that there are certain foods that they absolutely must include enough of in order to "fight off the cancer." And so those are 2 areas. And Deborah has also worked with several of our clients here at Cancer Services, and I think, if you want to give some examples of people that you've worked with in the cancer groups and some of their anxieties.

Debra Benfield: Sure. One of the things that I think about is a very striking kind of guilt that people start to associate—in my opinion, it's much more focused around sugar, right now, as far as what people are hearing from sources I'm not so sure about, on the Internet, that actually tell our folks that sugar is causing or contributing to their cancer. And many people start to, maybe without conscious awareness, start to feel guilty because they know that they've enjoyed sugar in their lives. And they feel like they have actually caused their cancer. So I try to help people realize that that's probably not a rational thought pattern, that that's probably a fear-based irrational thought, and does give folks something to focus on, something to feel like they might be able to control, knowing that they don't have as much control over their diagnosis.

But they do kind of have a false fear-based belief that they can actually have a sense of control of their lives if they just eat a certain way. And, again, it may not be a conscious thought. It could be just something that you start to feel, that you need to white knuckle and control this aspect of your life, when other things feel like they're swirling out of control. So I try to help people realize that they did not cause their cancer, that the guilt that they feel with food may be even more unhealthy than the actual food itself, that the actual guilt and anxiety that arises is, in my opinion, more unhealthy. Because I look at the whole person. I think mental health is a very important aspect of a person's life. So to try to help people feel less guilty and more a sense of knowing that they can create ease with a more moderate way of thinking about how they make food choices and nourish themselves. So I try to ease up on the rules and the dogmatic rigidity that people start to have, which the rigidity itself can create its own disorder.

Julie Lanford: Right. And I think for a lot of the people that I work with, both online and in real life, sometimes, their fear around food pushes them to the point of restriction in a way that is not healthy, nutritionally. So their intake of certain nutrients is inadequate because their food restrictions are so many. So someone who thinks that sugar is a problem, that it causes cancer, and somehow they start limiting all types of sugar, including healthy carbohydrates. If they completely eliminate all grains and all fruits, which I've had some people come into me having done that, I am very concerned about their ability to adequately nourish their bodies, especially during treatment, recovering from treatment, those types of things. So sometimes, it really does come to that point where their concern and their food anxiety is so strong, that it changes their behaviors in a way that is detrimental to their health, which is exactly the opposite of what they're trying to go for.

Debra Benfield: Right. Right. It presents its own problem.

Julie Lanford: Yes. And we can't help them nourish themselves if they can't get past some of these emotional fears around certain foods. So interestingly, I think that there are several things that come into play, so like you were mentioning, wanting control, especially earlier on in diagnosis. I've had people call me on the phone, and basically, they've been diagnosed, but their treatment regimen isn't figured out yet. And that seems to be a time of sort of crisis, where they want to do whatever they can. And so they're grasping on to the food thing because they don't have any other answers at that point. And it seems to be a time that they're very anxious and they drastically change some of their eating habits, and also have incorporated a lot of guilt.

I think that well-intentioned advice-givers, which we all have those in our lives, but it seems like upon diagnosis of cancer, the advice-givers come out of the woodwork. And they're sending you emails and telling you all kinds of, who knows, legitimate and not-legitimate information that they've heard or read, that oftentimes layers on this guilt, foods to eat or not eat.

They seek out information on the internet, from documentaries, from other cancer survivors, who maybe are giving not so evidence-based nutrition advice.

I think those are some examples, but also caregivers really want to help out, and especially in the case of people who don't feel like eating, caregivers can, I think, add more anxiety to the table, when they want their loved one to eat so badly that they almost guilt them into eating when they just don't feel like it. And that's a whole 'nother level of, "Well if you don't eat what I made for you, what does that say about our relationship," and all of that. So those are a couple of other things that I don't know what your thoughts are about that.

Debra Benfield: I agree 100%. And as you were talking, I was thinking about relationship to body, in general. I mean, in my opinion, a cancer diagnosis can many times feel like a traumatic interruption to a person's life, as well as if there is a surgery process, or maybe even going through some of the actual treatment protocols, in the experience itself, there can be a sense of anxiety-provoking trauma.

And that, in itself, affects the body's ability to digest. I mean, their digestion is affected by stress and anxiety. So things start to take on their own dynamic. And I think we're going to talk a little bit more, in just a minute, about what to do about that. But I think, considering that your fear can affect your ability to digest your food, your belief about the food itself can create anxiety that can make you even have symptoms, that we've talked a little bit about, about having to be close to a restroom. So trying to drop away from all of the fear and anxiety is not such an easy thing to do. There are layers of complication and also just body itself.

I work, in my practice, and when I come over and work with clients who have a cancer diagnosis here, there's a complicated relationship with body itself, so body shape, body form, thinking that there needs to be weight management at this particular time is a whole 'nother dynamic. So that the people can feel more comfortable in their bodies, or maybe have the body that they used to have, a relationship with their body that they had before diagnosis. So you can see how this just starts to become more and more complicated through our folks.

Julie Lanford: You know, as healthcare providers, and during treatment, a lot of times, we're pushing people to get enough nutrients in, to keep their weight up, and to not lose too much weight. Because that can adversely affect outcomes. And then sometimes, those same people then create behaviors, I guess, around like, "You've got to eat enough." And then, at some point, you can stop doing that. It's like you're constantly having to learn and adjust to what your body's needs are at whatever that time is. And then, there's other people who are told during treatment, "Well, we're concerned that you have too much weight." And maybe a physician has told them they need to lose weight. And that, after facing a cancer diagnosis, having your doctor push you around losing weight, it just can add so many other things on top. And so I think that's another area where somebody takes on some of these thoughts and behaviors that pushes them towards anxiety.

Debra Benfield: And I'm sitting here also remembering so many stories around taste changes. And the more I talk about this, the more I feel great empathy for somebody going through this. Because there's so much going on at one time around what could be, and I would like for it to be, a much less complicated, more simple part of life, when life already feels complicated enough.

Julie Lanford: It should be less complicated.

Debra Benfield: It would be nice.

Julie Lanford: And any way we can lower the anxiety. So I think that actually is a good transition to some of our practical recommendations around this. Because our listeners could be from all kinds of different places. But I'm certain that for pretty much everyone, there is something that we've talked about that's resonated.

So some of the practical tips that we've thought through, for the people who are dealing with those physical side effects of treatment, whether they need to be near a bathroom, whether they are having bowel movements multiple times a day, or maybe on the opposite side, they're having constipation that's causing them debilitating pain, I think the first thing for those people is to maintain a constant conversation with their medical team about how they can manage it, so that they can do the things that they really want to do in life. So it may be keeping a food log and figuring out trigger foods and avoiding those around times that they have activities. It might be using medical management, so for people who have multiple bowel movements a day, they might need to use Imodium. And their medical team can help them come up with some kind of regimen.The same thing if someone's on pain medication, and constipation is causing them issues. They need to constantly be in contact with their medical team to figure out what is the solution to deal with this.

And then, for the people who have caregivers, early on in my career working with cancer patients, I came up with sort of this guideline for caregivers who are feeding loved ones. And I encouraged caregivers to know that you are loving your person by preparing them food and offering it to them. And whether that person eats the food or not, you need to tell yourself you're doing a good job. So the caregiver's job is basically to, maybe remind the person it's been a couple of hours and maybe they want a snack, and is there something they can give them. They can prepare the foods that they think will be well received. But it is the person facing cancer's job to decide what and how much they're actually going to be able to put in their mouth and swallow, and to try to separate that behavior of actually eating from impacting their love relationship.

Debra Benfield: I think there is an anxiety, a feeling of pressure around eating or not, is its own anxiety. I mean, choosing to eat and what you're going to eat and how much you're going to eat is a personal choice. So when somebody intrudes into that, however well-intended, there tends to be an emotional reaction. And that's uncomfortable. And I think it's unnecessary.

Julie Lanford: Yeah. And we don't want to ruin marriage relationship while we're at it, or a friend--

Debra Benfield: Right. Any other time-- right.

Julie Lanford: --Friends who are trying to help feed you. So that's my caregiver and care receiver tip.

Tips on how to deal with unwanted advice. So I actually have several talking points that I give my patients around how to deal with it. But I think the most important one that you can always remember is to have 1 easy statement that says, "Oh. Thanks for your concern. I'm working really closely with my medical team. I'll bring this by them." And then change the subject. So that's kind of—you can receive their intention to give you assistance without internalizing their advice. So kind of let it come 1 ear and out the other and send it on its way.

Debra Benfield: Nice.

Julie Lanford: Tips on how to evaluate nutrition information. So I started writing cancerdietitian.com in 2007 because I had so many clients coming in asking questions and not knowing where to turn to get legitimate information. I will say, most information that you read on the internet is not true. And just because someone said it or wrote it or put it on Facebook or Instagram or wherever, does not make it true. And sometimes, you need to control the flow of information. So be very cautious about where you're going, and also know kind of who you trust. So, hopefully, a lot of people are trusting their care providers. And I usually say, if you stick to things like university or legitimate treatment websites, then you're probably going to be good. But I would stay away from celebrity advice, Netflix documentary advice, and then people who don't have any credentials whatsoever. Health coaches, nutrition coaches don't count as legitimate credentials for giving nutrition advice.

Debra Benfield: And I trust you, Julie, completely.

Julie Lanford: So do you have other, for your clients with eating disorders or disordered eating—how do you help them with their seeking out of nutrition information?

Debra Benfield: Yes. It's loaded. There are just thousands, literally thousands, of books, and not to mention internet accounts and Facebook accounts and Instagram accounts that are focused on weight management. So I highly recommend not following accounts that are about that. My favorite resource is a book called Intuitive Eating. And I don't know if that would be of interest. But I think it's very helpful, when it comes to trying not to fall for actual belief systems around food that lend themselves to feeling like there's a list of foods that are good and a list of foods that are bad. Because those kinds of lists will create a dynamic within you, as the reader, where you feel like you are being bad and being good when you eat those foods. And then maybe even that you are good or you are bad, which is where shame lives. And I don't think you want any additional shame or guilt.

So if you see an "Eat This, Not That" list, I would see that as a red flag. And I'm all about finding a way to listen to your own instincts around what helps you feel good. How do you feel when you eat certain foods and tune into what your body is letting you know about what feels supportive and nourishing versus making me feel sluggish or if you pay attention—and Julie mentioned keeping a log—you'll notice that certain foods really do help you feel your best, and certain foods don't contribute to that. So I would trust that you listen to your body way more than the food list. Yeah.

Julie Lanford: Yeah. It's funny because I developed an email program. And what people wanted was, what to avoid, what to eat. And so I was like, "All right. I should call it that because that's what people want." And then I realized, "Okay. I'm going to call it that, but that's not really—I don't have a food list." So what we went with was, "what things to eat most of the time," because I don't believe you have to avoid any particular foods. It's kind of more about how you're feeling, and what your body kind of needs at that time. So it's funny to balance that, what you think you want and actually what you really need.

Debra Benfield: The way I think about that is like, head down and gut up. You kind of have to listen to your body, and there is just this information that you know that is more helpful for you. And it can't be true all the time. I mean, you get to have treats just because there are certain foods that actually just help you feel happy, like maybe childhood favorites. Yeah.

Julie Lanford: Yeah. Your soul foods.

Debra Benfield: It's a good way to put it. Yeah.

Julie Lanford: Okay. I think the last thing kind of on our to-do list is how to know when you need professional help. Because, at least what I see with my patients coming in, is that sometimes they've actually had a kind of a significant amount of disordered eating behaviors prior to a cancer diagnosis. And possibly, the cancer diagnosis has just exacerbated the problem. Or it could be somebody who had a perfectly healthy relationship with food, they get a cancer diagnosis. They have treatment. Their body is reacting very differently to the foods that they historically had really enjoyed before. And now, all of a sudden, everything's turned upside down. And I think, in those cases, there is some pretty clear times when you will want to seek out a dietitian or a therapist, who can help you work through those things. So what kinds of kind of red flags or things do you notice would be something you'd suggest somebody to seek out help.

Debra Benfield: So disordered eating and eating disorders is based in thought patterns that can contribute to behaviors. And if you find that your thoughts are highly rigid, that, in my opinion, is something you may want to seek help with. If you can't just be social. I mean, I know we've talked about how complicated that can be. But if you feel like you have to take your own food to social occasions—and I'm sure there are events where that's necessary, at some point. But if that's the way you always, literally always feel, like you can't just trust food that other people prepare, then you may have crossed over into a lot more rigidity than is healthy for you.

Julie Lanford: And not because you're allergic to the food, but because you think that it's toxic to your body.

Debra Benfield: Right. Yeah. So I would consider rigidity of thought and behavior to be one major area that you want. I would encourage flexibility as an antidote, to try to let yourself relax and try things that you may feel are on some sort of list that is bad, just to see if you can be flexible and encourage more comfort. If you remember that the definition of anxiety is distress in your mind, what brings you more ease? So anything that creates rigidity of behavior and thought pattern. And then the other piece, I think is guilt. If guilt becomes debilitating to the point that you just feel like you're being bad way too often, so that you feel sad and maybe even depressed, I think that if you've noticed that your anxiety and depression is higher, then I think you need some support.

Julie Lanford: And probably a large majority of people who've faced a cancer diagnosis, I think would benefit from counseling and helping to cope with everything that's going on. I think something else that comes to mind is, if you're in a situation where, when it's time to eat, if you can't identify something that you can nourish your body with, and so then you sort of go without or have something that's not really a complete full meal, that would be another red flag. Because there's always a good choice. There is always a best choice. No matter what situation you're in, you shouldn't feel like you have to go without.

Debra Benfield: Right. If you've worked yourself into a true corner, where your list of foods that you can eat is so short that you feel like you eat the same thing over and over and over and over again. That's problematic.

I wanted to say a couple of things about the fact that not eating enough, and not eating enough for your body's needs, or eating frequently enough, can in itself cause anxiety. If the human body is under-nourished, the brain is the organ that's affected first, and anxiety goes up. So just the process of not eating frequently enough and enough for you, can in itself cause anxiety and some sadness.

Julie Lanford: So I think, in summary, we both want to feel like we leave our listeners with less anxiety and more hope and positive feelings. So my take home for all of my clients is to remember that staying well-nourished does improve your body's ability to tolerate and respond to treatment. And food is neither toxic or magical. And so, if you feel like your stress regarding food and nutrition is overwhelming, then I wouldn't be shy to seek out for help. But I'd also like to just remind you that there is no toxic food. There's no magical food. And I want you to have less anxiety around food choices.

So Deborah, it's been really awesome sharing this time--

Debra Benfield: Thank you. Me too.

Julie Lanford: --and your expertise. But if you had one take-home message that you would share with listeners, what would it be?

Debra Benfield: Mine is very short and sweet. And it's kind of a summary of what Julie just said, and that is, you can't mess this up. You can't mess this up. It's just one meal, one snack at a time. Continue to try to listen to your body. You can't mess it up.

Julie Lanford: So there you go. That's awesome. Thank you so much for being here.

Debra Benfield: Yeah. Thank you. Thanks for inviting me.

Julie Lanford: Yeah.

Debra Benfield: Obviously, we could keep talking.

Julie Lanford: Forever.

Debra Benfield: Yes. Lots to say.

Julie Lanford: All right. Take care.

Debra Benfield: Bye.

ASCO: Thank you, Ms. Lanford and Ms. Benfield. Find more podcasts about nutrition and cancer at www.cancer.net. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

This Cancer.Net podcast is part of the ASCO Podcast Network, a collection of 9 programs covering a range of educational and scientific content offering insight into the world of cancer care. You can find all 9 shows, including this one, at podcast.asco.org.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

The 2019 ASCO Annual Meeting, held May 31 to June 4, brought together physicians, researchers, patient advocates, and other health care professionals from around the world to present and discuss the latest research in cancer treatment and patient care. In the annual Research Round Up podcast series, Cancer.Net Associate Editors share their thoughts on the most exciting scientific research to come out of this year's ASCO Annual Meeting and what it means for patients.

First, Dr. Jeffrey Meyerhardt will discuss 4 studies in gastrointestinal cancers, including 1 on colorectal cancer, 1 on gastric cancer, and two studies related to pancreatic cancer.

Dr. Meyerhardt is the Douglas Gray Woodruff Chair in Colorectal Cancer Research, Clinical Director and Senior Physician at the Gastrointestinal Cancer Center at the Dana-Farber Cancer Institute, Deputy Clinical Research Officer at the Dana-Farber Cancer Institute, and Professor of Medicine at Harvard Medical School. He is also the Cancer.Net Associate Editor for gastrointestinal cancers.

Dr. Meyerhardt: My name's Jeff Meyerhardt. I'm a gastrointestinal medical oncologist at the Dana-Farber Cancer Institute in Boston, Massachusetts. Today I'm going to discuss research on gastrointestinal cancers that were presented at the 2019 ASCO Annual Meeting. And let's talk about four studies: 1 in colon cancer, 1 in gastric cancer, and 2 studies related to pancreatic cancer, all of which are going to affect how patients are treated in the upcoming years.

Starting with the studies on colon cancer, there were 2 additional studies looking at the duration of adjuvant therapy for colon cancer. Adjuvant therapy is the chemotherapy that's given after surgery for people who had a resection of their colon cancer that didn't have evidence of metastases. We give adjuvant therapy to try to prevent and reduce the risk of recurrent disease. The standard of care up till a few years ago was to give 6 months of adjuvant therapy. And for most patients who had stage III or lymph node positive disease, that was 6 months of a fluoropyrimidine, either 5-FU, or an oral form capecitabine with oxaliplatin. This was also given to some patients who have higher-risk stage II disease. Two years ago at ASCO, we learned that giving 3 months of therapy was sufficient, or what we'd describe as non-inferior, for some patients who have stage III colon cancer, particularly those who had what would be considered a better-risk stage II colon cancer, and actually particularly if they got a particular regimen of combining capecitabine and oxaliplatin.

At this year's ASCO, there was a study looking at patients with stage II disease. Most of them had higher-risk stage II disease, something where they didn't have positive lymph nodes, but some other feature that made you a little bit more worried that there was a relatively higher-risk of recurrent disease. And the findings were essentially very similar to what we saw for stage III disease; that for some patients, 3 months of treatment was adequate, particularly if you gave capecitabine/oxaliplatin, and had less toxicity than 6 months of therapy. But if you gave 5-FU/leucovorin/oxaliplatin, a regimen called FOLFOX, 6 months of treatment was necessary. These studies add to the conclusion that first, we can't treat all colon cancers in the adjuvant setting the same, that we should think of them as risk adjustment, and we also have to make decisions regarding what type of treatment, which will help determine the duration of therapy.

The next study I'm going to focus on is looking at gastric cancer and looking specifically at the role of immunotherapy. So what we've already known is that patients who have gastric cancer and esophageal cancer can benefit from immunotherapy in later-line therapy, so after an initial first-line or second-line chemotherapy is no longer helping a patient or is too toxic to continue. The study that was presented at ASCO this year, what is called the KEYNOTE-062 study, was actually looking at 3 different arms of therapy. One was giving a drug pembrolizumab, one of the immunotherapies alone. The second arm was giving chemotherapy alone. And the third arm was giving pembrolizumab with chemotherapy. In looking at what would be the best strategy for patients who are initially being treated for metastatic gastric cancer.

They specifically looked at patients where we think there may be a higher chance of activity. So there are certain ways to look at the tumor and score what's the potential in immunotherapy would be helpful. And this is what's called the CPS score. Patients who had had a CPS score of at least 1, and they also broke it down for people that had even a higher score, greater than 10, in the analysis. And what they found is compared to doing standard chemotherapy, in this case, of fluoropyrimidine, 5-FU, or capecitabine with a platinum, cisplatin, giving pembrolizumab could be non-inferior in terms of overall survival for patients as initial therapy for metastatic gastric cancer; that they saw that in patients who had a CPS score greater than 1. They showed actually that it was superior to give pembrolizumab in terms of overall survival if the CPS score was greater than 10.

What is a little curious in this study is that progression-free survival, which is how long it takes until you have to switch to therapy, wasn't actually better with pembrolizumab compared to chemotherapy for the people who had relatively lower CPS scores. But it was non-inferior for those who had a greater than 10.

The second part of the study was looking at should we give chemotherapy and pembrolizumab at the same time, like the whole kitchen sink, at the same time of both giving chemotherapy and an immunotherapy. And that actually didn't add any benefit to chemotherapy alone. So it was not improvement in overall or progression-free survival.

So what do we conclude from KEYNOTE-062? Well first is that there are some patients where giving an immunotherapy upfront by itself can be just as good as starting chemotherapy, particularly those who have a score that's a relatively higher likelihood of benefiting from immunotherapy. But we also learned that combining them together does not add extra bang for the buck as initial treatment. There should still be a therapy considered later, whether you start with pembrolizumab and then later get chemotherapy or vice versa. But doing them all at the beginning does not seem to add additional benefits.

There were then 2 studies of note for pancreatic cancer. One of them was an adjuvant study, which again, adjuvant therapy is giving chemotherapy after surgery to try to reduce the risk of recurrent disease. What we know for pancreas cancer, there are several options to consider in terms of adjuvant therapy after surgery. For quite a few years now, the standard was giving a drug called gemcitabine. There was then a study looking at gemcitabine with an oral drug called capecitabine, again, the oral form of 5-FU, and that looked to be a little better than gemcitabine alone. And then several years, a study from the Canadian Cancer Treatment Group and then a Unicancer GI PRODIGE Group looked at a combination of folfirinox, a 4-drug regimen that's now very standard for some patients with metastatic pancreas cancer. In looking at that regimen as adjuvant therapy, compared to gemcitabine alone, that study showed a real significant improvement in terms of recurrence rate and disease-free survival for patients who got this 4-drug regimen compared to gemcitabine alone, and has really become a standard for patients who have a good performance status after their surgery.

The current study that was presented at the 2019 ASCO Meeting was looking at a different combination, looking at gemcitabine plus another drug called nab-paclitaxel. It's a combination also used in metastatic pancreatic cancer. It was shown to be better than gemcitabine by itself in metastatic pancreatic cancer. And the hope would be another option for patients in the adjuvant setting. Unfortunately, the study fell a little short in terms of the primary endpoint as initially determined when the protocol was being developed, what was called an independent assessment of disease-free survival. So sending the scans and sending all the data to independent reviewers, and that again just fell a little short statistically. If you look at investigator-assessed disease-free survival, it actually was statistically significant, as well as overall survival. The conclusion for the study is even though it didn't quite meet the mark in terms of what was predefined, it does give suggestion that it is better than giving gemcitabine alone. And there are patients in the adjuvant setting for pancreas cancer where folfirinox is probably not as good of an option: it's a fairly toxic regimen. People who have a performance status having a little more difficulty recovering from the surgery or have more comorbidities, gemcitabine plus nab-paclitaxel probably still should be considered an option for these patients, compared to gemcitabine alone.

The final study, which led to a plenary session, which is basically one of the 4 most attractive abstracts in the 2019 ASCO Annual Meeting this year, was looking at maintenance therapy for people with metastatic pancreatic cancer using what's called a PARP inhibitor olaparib. It was specifically for patients who had received a platinum-based chemotherapy and they had a germline mutation of BRCA. So BRCA mutations are commonly known to affect the risk of developing breast and ovarian cancer. There are 2: BRCA 1 and BRCA 2. Those also have association with increased risk of pancreatic cancer. And what we know is the PARP inhibitor, through what are called DNA repair mechanism, do seem to have activity in these various type of cancers, including for patients with metastatic pancreatic cancer.

This was specifically looking at people who had metastatic pancreatic cancer. Could you get them off the more cytotoxic chemotherapy for a period of time to do something more of what would be considered a maintenance therapy. So having them for period time off toxic therapy and not impacting their overall outcome. It ends up about 4 to 7 percent of metastatic pancreatic cancer patients harbor a BRCA mutation. What we know about BRCA-mutated pancreatic cancers, they have an increased benefit from a platinum-based chemotherapy, cisplatin or oxaliplatin, so patients had to have had a platinum-based therapy to go on the study. They were on chemotherapy for at least 16 weeks and then they were randomized to stop their chemotherapy and receive elaborate versus placebo until there was disease-free, disease progression, or increased toxicity.

And what we saw is that the progression-free survival, the time till they had to restart chemotherapy, actually was doubled with the group receiving the maintenance therapy with olaparib. So that was really an exciting finding and a really important finding where you can get people off of chemotherapy for a period of time until you have to restart chemotherapy. Now there is not a survival benefit that was noted yet on the study. It is still very early to look at overall survival. There are also patients who are able to crossover in terms they got olaparib, another part in their cancer treatment, because of the known benefit in metastatic disease. So overall survival may be a little harder to fully interpret, but I do think that this will become a standard for patients with BRCA-mutated colorectal cancers, to receive chemotherapy for some period of time, several months, and then if they're doing well, then to switch them to a maintenance therapy.

So that is our summary of the GI cancer research from the 2019 ASCO Annual Meeting. Again, my name is Jeffrey Meyerhardt, and thank you for listening.

ASCO: Thank you, Dr. Meyerhardt.

Next, Dr. Guillermo Garcia-Manero will discuss a study on a new immunotherapy drug that offers promising results in patients with acute myeloid leukemia or myelodysplastic syndromes, as well as 2 additional studies that looked at t-cell therapies.

Dr. Garcia-Manero is the Deputy Chair of Translational Research and Professor, Department of Leukemia, at The University of Texas MD Anderson Cancer Center in Houston, Texas, and the Chief of the Section of Myelodysplastic Syndromes at MD Anderson Cancer Center. He is also the Cancer.Net Associate Editor for Leukemia.

Dr. Garcia-Manero: Hello. I am Guillermo Garcia-Manero. I am a professor in the Department of Leukemia at the University of Texas MD Anderson Cancer Center. I'm very happy to summarize some of the key presentations at this year's ASCO meeting in Chicago. Of course, ASCO is big on solid tumor malignancies, but there is more and more information regarding leukemia treatment for our patients, also, at the meeting. This year, there were a number of very interesting presentations. First, I want to start briefly saying that there was a very interesting educational symposium where Drs. Al-Kali, Sekeres, Craddock, and myself discussed how to use these hypomethylating agents, drugs like azacitidine or decitabine in patients with leukemia. This meeting was very well attended by multiple community physicians that attend ASCO, and it contained, I think, very useful information in terms of the use of these compounds for our patients.

In terms of research presentations, there were multiple. The one that I actually felt was perhaps more interesting was a presentation by Dr. Sallman from the Moffitt Cancer Center in Tampa where he was describing the first results of a new therapy for patients with MDS and AML and potentially other hematological malignancies and cancers known as Hu5F9-G4. This agent is an antibody that targets a molecule called CD47. This was discovered by Dr. Maute and Dr. Weissman at Stanford. It is known to be a "don't eat me" signal in a way kind of an alternative immune checkpoint inhibitor type of process. But this is interesting because it's focusing more around macrophages more than lymphocytes and it could have a broad use, again, not only in leukemia and hematological malignancies but potentially many other cancers.

I think that this data is very striking because the results of Dr. Sallman indicate a very high level of activity with the combination of the hypomethylating agent azacitidine, in this case, both in MDS and AML. This was agnostic of molecular and cytogenetic alterations. It was well tolerated, although there was a little bit of anemia early on with administration of this therapy. But I think this was one of the most innovative and promising new potential therapies for our patients with leukemia. This drug has been shown to be active in lymphoma and now, we expect that the studies initially done in the UK and in Tampa are going to be expanded to other centers in North America, and they may actually provide with a very interesting innovative and very active new form of therapy for our patients. So I thought that was the most innovative presentation at the ASCO meeting.

Of course, there were multiple other presentations. There was additional data on new FLT3 inhibitor known as gilteritinib. This drug recently approved for patients with AML. There was also further information on a new compound known as CX-01 for patients with acute myelogenous leukemia. Again, this is an interesting compound that seems to be a heparin analog, and the early studies are showing significant activity as well for our patients. There was also very interesting data in terms of the phase I results of the ZUMA-3 trial. This is a CAR T-cell type of approach for refractory patients with acute lymphocytic leukemia. And finally, this interesting presentation from the MD Anderson group with an off-the-shelf viral-specific T-cell therapy against patients with adenovirus disease that are immunosuppressed. It's actually very important in a way-- kind of similar therapies for patients that have viral complications, this group have shown, actually, significant activity of similar type of approaches for patients with BK virus and other conditions.

So in summary, I think that the meeting was very important like it is every year. I think that we're starting to see presentations at ASCO for new agents of high relevance. I think that the community, at least in MDS and AML, it is very interested on the follow-up with the Hu5F9-G4 agent in combination with AZA for MDS and AML. And we're looking forward to be part and see the results of expanded phase II and potential phase III studies with this compound. And with that, I want to thank you for your attention.

ASCO: Thank you Dr. Garcia-Manero.

Learn more about these topics and other research presented at the 2019 ASCO Annual Meeting at www.cancer.net, including additional Research Round Up podcasts. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

This Cancer.Net podcast is part of the ASCO Podcast Network, a collection of 9 programs covering a range of educational and scientific content offering insight into the world of cancer care. You can find all 9 shows, including this one, at podcast.asco.org.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

ASCO: Usted está escuchando un pódcast de Cancer.Net en español. Este sitio web de información sobre el cáncer es producido por la Sociedad Estadounidense de Oncología Clínica, o la American Society of Clinical Oncology en inglés, la organización profesional líder en el mundo para médicos que atienden a personas con cáncer.

El propósito de este pódcast es instruir y brindar información. Esto no es un sustituto de la atención médica profesional y no está previsto que sea utilizado para el diagnóstico o el tratamiento de afecciones individuales. Los invitados de este pódcast expresan sus opiniones, experiencias y conclusiones. La mención de cualquier producto, servicio, organización, actividad o terapia no debe considerarse como aval por parte de la American Society of Clinical Oncology. La investigación sobre el cáncer que se analiza en este pódcast está en curso; por lo tanto, los datos descritos aquí pueden variar a medida que la investigación avanza.

El verano es una época en que las personas suelen hacer comidas, parrilladas y pícnics al aire libre. En este pódcast, las integrantes del personal del Departamento de Agricultura de los Estadios Unidos, Janice López‑Muñoz y Clara Yuvienco, explican por qué la seguridad de los alimentos es particularmente importante para las personas diagnosticadas con cáncer y comparten consejos para evitar enfermedades transmitidas por los alimentos cuando se come al aire libre. Janice López-Muñoz es especialista en relaciones públicas del Servicio de Inocuidad e Inspección de los Alimentos del Departamento de Agricultura de los Estadios Unidos, y Clara Yuvienco es especialista bilingüe en tecnología de la información del Departamento de Agricultura de los Estadios Unidos.

La American Society of Clinical Oncology quiere agradecerles a la señorita López y la señorita Yuvienco por conversar sobre este tema.

Janice López-Muñoz: Hola, bienvenidos a este podcast de Cancer.Net. Les habla Janice López, especialista en asuntos públicos del Departamento de Agricultura de los Estados Unidos. Y hoy me acompaña Clara Yuvienco, especialista en información técnica bilingüe del Departamento de Agricultura de los Estados Unidos. Clara nos estará proporcionando información acerca de la manipulación segura de los alimentos. Bienvenida Clara.

Clara Yuvienco: Muchas gracias Janice, muchas gracias por escucharnos.

Janice López-Muñoz: Vamos a entrar entonces esta mañana al tema, que nos va a estar proveyendo muchísimas recomendaciones, te agradecemos estos datos. Mi primera pregunta hoy sería: ¿por qué las personas con cáncer tienen mayor riesgo de sufrir enfermedades trasmitidas por los alimentos?

Clara Yuvienco: Sí, las personas con cáncer tienen un mayor riesgo de sufrir una enfermedad trasmitida por los alimentos, debido a que su sistema inmunológico está debilitado. Los tratamientos para el cáncer, como la radiación y la quimioterapia, debilitan el sistema inmunológico del cuerpo, al afectar las células sanguíneas que protegen contra de las enfermedades y los gérmenes. Y como resultado, tu cuerpo no puede combatir infecciones, sustancias extrañas, enfermedades, al igual que el cuerpo de una persona que está sana. Debido a este riesgo, las personas con cáncer o quienes preparan los alimentos para ellas, deben practicar técnicas adecuadas de manejo de alimentos para matar los gérmenes, las bacterias, y evitar la contaminación cruzada. Debemos tener en cuenta que las enfermedades trasmitidas por los alimentos, o causadas por el consumo de los alimentos que contienen bacterias o parásitos, pueden ser muy graves y en ocasiones letales, mortales para este tipo de pacientes.

Janice López-Muñoz: Nos mencionas que debemos tener cuidado, tanto las personas que tienen cáncer como aquellos que los cuidan. ¿Cuáles son esos pasos fundamentales que debemos practicar para protegernos de estas enfermedades trasmitidas por los alimentos?

Clara Yuvienco: Gracias por esa pregunta, muy importante. Bueno, el Departamento de Agricultura recomienda cuatro pasos que son fundamentales para evitar enfermarnos por los alimentos. El primero es limpiar, y en este debemos tener en cuenta que antes de empezar a preparar nuestros alimentos o a manipular nuestros alimentos, debemos lavarnos las manos. Debemos asegurarnos de que las superficies y todos los utensilios que vamos a utilizar para preparar los alimentos estén limpios. El segundo, es que debemos separar los alimentos crudos de los que ya están cocidos o listos para comer, y también que debemos separar los vegetales y las frutas de las carnes. El tercero, cocinar: que debemos tener en cuenta que los alimentos, especialmente las carnes, las aves, se deben cocinar, preparar a la temperatura mínima interna recomendada. Y muy importante también, que esta temperatura debe ser medida por un termómetro para alimentos, que es la única forma de garantizar que nuestras carnes, nuestros alimentos, han sido preparados a la temperatura adecuada y que han sido cocidos completamente. El tercero, enfriar: que debemos refrigerar nuestros alimentos dentro de un período de dos horas, si la temperatura es menor de 90 grados, o una hora si es mayor a los 90 grados.

Janice López-Muñoz: Qué interesante. O sea, que son cuatro pasos: limpiar, separar, cocinar y enfriar. Muy fáciles, es cuestión de ponerlos en práctica con toda esta información que nos ha dado en la mañana de hoy. Por ejemplo, estamos en el tiempo de verano, hay muchas actividades de temporada, estamos al aire libre, que podemos por ejemplo tener un pícnic o compartir en algún parque, una barbacoa. ¿Qué suministros o consideraciones, las personas deben seguir a la hora de hacer este tipo de actividad al aire libre?

Clara Yuvienco: Sí, muy importante esta pregunta también. Debemos, primero que todo, tener en cuenta que necesitamos tener agua limpia disponible para lavarnos las manos. Si estamos en el parque, o si estamos en un sitio donde no hay una llave o un grifo disponible para obtener esta agua limpia, que la podemos llevar de nuestras casas para el parque, porque estos pacientes deben tener esta recomendación muy en cuenta. Entonces, el lavado de las manos es la forma más económica, pero algunas veces nos olvidamos; pero es la mejor forma de prevenir la contaminación cruzada, la transferencia de bacterias dañinas de unos alimentos a otros. Y también, por ejemplo, lavar las tablas de cortar y los utensilios que vamos a utilizar. Además, si nosotros tocamos los alimentos con las manos sucias, los gérmenes, las bacterias pueden propagarse, crecer y causar una intoxicación alimentaria. Por eso debemos lavarnos las manos antes de comenzar la preparación de los alimentos, después de manipular las carnes crudas o las aves, los mariscos. O también después de tocar los animales, después de usar el baño, de cambiar los pañales de nuestros bebés, o también después de limpiarnos la nariz, después de toser o de estornudar.

Janice López-Muñoz: O sea, que todas esas son consideraciones donde cobra muchísima importancia mantener nuestras manos limpias, es lo que entendemos. ¿Hay algunos pasos también que sean correctos, o que ustedes recomienden a la hora de lavarnos las manos? ¿Cuáles podrían ser esas recomendaciones que ustedes tienen a la hora de hacer este lavado de mano de manera correcta?

Clara Yuvienco: Sí, tenemos cinco pasos que son muy importantes de seguir a la hora de lavarnos las manos. El primero es mojarnos la manos, luego utilizar jabón y asegurarnos de que ese jabón hace espuma. Luego nos frotamos las manos con este jabón durante más o menos 20 segundos. Nos enjuagamos con agua limpia, y luego nos secamos con una toalla que esté limpia; bien sea una toalla de tela o de papel, pero asegurarnos de que esa toalla está limpia.

Janice López-Muñoz: Qué interesante Clara, excelente información, muchas gracias. Estamos en esta actividad, estamos fuera, al aire libre, estamos lejos de las comodidades de nuestras cocinas. ¿Hay alguna recomendación que ustedes puedan decirnos acerca de, por ejemplo, cómo almacenar de manera correcta estos alimentos que estamos disfrutando en esta actividad?

Clara Yuvienco: Sí, claro. Lo primero que todo es que debemos planear, decidir qué vamos a comer, cómo lo vamos a cocinar y qué utensilios, qué equipo de cocina vamos a necesitar. Debemos tratar de planificar la cantidad de los alimentos perecederos, como, por ejemplo, la carne, el pollo, los huevos, los mariscos, las ensaladas, para que no tengamos demasiados sobrantes. Para que no nos tengamos que preocupar luego de la comida que nos sobra, porque como ya había dicho antes, esta la debemos refrigerar dentro de un período de una a dos horas. También, al calcular la cantidad de alimentos, debemos calcular la cantidad de alimentos que debemos mantener fríos, debemos empacar los alimentos perecederos directamente al refrigerador o congelador en una nevera portátil, con suficiente hielo o paquetes de gel, para asegurarnos de que van a mantener una temperatura de 40 grados Fahrenheit, o sea, 4.4 grados centígrados.

Janice López-Muñoz: Okay. Y entonces, ¿por qué es que eso se requiere de esa manera?

Clara Yuvienco: Bueno, se requiere mantener refrigerados y a estas temperaturas en la nevera portátil, porque las bacterias crecen y se multiplican muy rápidamente en lo que nosotros llamamos "la zona de peligro", que está entre los 40 grados Fahrenheit, o sea, los 4.4 grados centígrados y los 140 grados Fahrenheit, o sea, 60 grados centígrados. Los alimentos que han sido transportados sin una fuente de hielo o han sido dejados al sol, no van a permanecer seguros por mucho tiempo, por eso es muy importante tener esta recomendación muy en cuenta.

Janice López-Muñoz: Qué interesantísimo está este tema. Te pregunto, ¿hay algunas recomendaciones, por ejemplo, cuando estamos transportando esa nevera portátil? ¿La debemos mantener en ciertos lugares específicos? ¿Qué nos puedes comentar sobre eso?

Clara Yuvienco: Sí, debemos tener en cuenta que no deberíamos meter esta nevera portátil en el baúl o en la cajuela del carro, recomendamos que lo llevemos dentro del auto, el cual va a estar en aire acondicionado. Y mientras estamos en el pícnic o en la reunión al aire libre, o en el asado, o mientras caminamos, debemos mantener esta nevera portátil a la sombra. Y debemos también mantener la tapa cerrada y evitar estarla abriendo y cerrando continuamente. Y también muy importante, si el hielo se derrite debemos reemplazarlo.

Janice López-Muñoz: O sea, que tenemos que tener cantidades de hielo suficientes para mantener siempre eso frío, es lo que queremos decir.

Clara Yuvienco: Y también algo muy importante que olvidé mencionar antes, que podemos colocar un termómetro adentro de la nevera portátil, para asegurarnos de que vamos a mantener esa temperatura, por lo menos a los 40 grados Farenheit, o sea los 4.4 centígrados.

Janice López-Muñoz: O sea, que siempre podemos tener esta información a la mano y asegurarnos que sea así.

Clara Yuvienco: Exacto.

Janice López-Muñoz: Excelente, es un buen consejito, un buen tip, gracias. ¿Hay algunos alimentos que sean más riesgosos o que puedan causar una intoxicación alimentaria si no los manipulamos adecuadamente, por ejemplo?

Clara Yuvienco: Sí, debemos, por ejemplo, tener en cuenta que debemos evitar las carnes, las aves y los mariscos que estén crudos o que no estén bien cocidos. También, no consumir leche que no sea pasteurizada. Otra cosa, los huevos que no están bien cocidos o que están crudos. Debemos también lavar muy bien las frutas y las verduras. Los quesos que sean suaves, que están hechos o elaborados con leches que no son pasteurizadas, eso también lo deberíamos evitar. Por ejemplo, las salchichas y las carnes frías, que no las deberíamos comer frías, sino calentarlas. Y también, por ejemplo, los gérmenes, como por ejemplo, los gérmenes de frijol, o de alfalfa, estos deberíamos evitarlos al máximo.

Janice López-Muñoz: Durante en este tiempo en que estamos. Interesantísimo por demás, de verdad que ha sido una tremenda información. Sabemos que toda esta información que tenemos aquí disponible en este podcast, la van a estar escuchando. Sin embargo queremos saber dónde las personas, si, digamos, quieren más información, si necesitan hablar con un experto en este tema, ¿dónde podemos encontrar esa información, ya sea en línea, a nivel de llamada? ¿Cómo nos puedes orientar respecto a estas otras fuentes de información?

Clara Yuvienco: Sí, el Departamento de Agricultura cuenta con la línea de información para carnes y aves, la cual está disponible tanto en inglés como en español, de las 10:00 de la mañana a las 6:00 de la tarde, hora del este, lunes a viernes, y allí pueden llamar ustedes al 1-888-674-6854. También tenemos disponible nuestra representante virtual Pregúntale a Karen, que esta está disponible las 24 horas al día, los siete días a la semana. Ustedes nos pueden enviar sus preguntas allí, nosotros se las contestaremos en español, y este está disponible en pregunteleakaren.gov.

Janice López-Muñoz: Perfecto, qué interesante. O sea, que tenemos un servicio en línea, repasando la dirección: pregunteleakaren.gov, y también tenemos entonces el teléfono del Hotline, que si nos lo puedes repetir, por favor.

Clara Yuvienco: Es el 1-888-674-6854, o MPHotline.

Janice López-Muñoz: Perfecto, MPHotline y este teléfono, ustedes contestan las preguntas en español también, ¿correcto?

Clara Yuvienco: Exacto. También el Departamento de Agricultura tiene un sitio web en español, que está disponible en www.usda.gov.

Janice López-Muñoz: Gracias por esta información tan valiosa, Clara, esperamos que sea de muchísimo provecho. Repetimos nuevamente: 1-888-MPHotline, es el número de teléfono para hablar con los expertos. También puede ser de 10:00 de la mañana hasta las 6:00 de la tarde, hora del este. Tenemos también la información sobre el web, que es: www.fsis.usda.gov, y pregunteleakaren.gov, que es donde usted puede charlar en vivo también con los expertos, todo esto en español. Agradecemos su atención a este tema, le agradecemos por escucharnos y estamos siempre a sus órdenes, muchas gracias.

Clara Yuvienco: Muchas gracias. Gracias.

ASCO: Gracias, señorita López y señorita Yuvienco. Encuentre más información de confianza para personas con cáncer en www.cancer.net/es. Y si este pódcast fue útil, tómese un minuto para suscribirse, dar una calificación y escribir una reseña del programa en Apple Podcasts o Google Play.

Cancer.Net está respaldado por Conquer Cancer, la fundación de la American Society of Clinical Oncology que financia la investigación de vanguardia sobre todos los tipos de cáncer para ayudar a pacientes de todo el mundo. Para ayudar con la financiación de Cancer.Net y programas similares, haga su donación en conquer.org/support.

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

The 2019 ASCO Annual Meeting, held May 31 to June 4, brought together physicians, researchers, patient advocates, and other health care professionals from around the world to present and discuss the latest research in cancer treatment and patient care. In the annual Research Round Up podcast series, Cancer.Net Associate Editors share their thoughts on the most exciting scientific research to come out of this year's ASCO Annual Meeting and what it means for patients.

First, Dr. Vicki Keedy will discuss 2 different studies in soft-tissue sarcoma, and explain how the results of these studies have lead to important conversations in the field of sarcoma.

Dr. Keedy is an Assistant Professor of Medicine in the Division of Hematology/Oncology and the Clinical Director of the Sarcoma Program at the Vanderbilt-Ingram Cancer Center at Vanderbilt University Medical Center. She is also the Cancer.Net Associate Editor for Sarcoma.

Dr. Keedy: Hello. My name is Vicky Keedy, and I am a medical oncologist who specializes in the treatment of sarcomas at Vanderbilt University Medical Center. Today, I'm going to talk about 2 important studies discussed at the 2019 ASCO Annual Meeting.

The first study I would like to discuss is called the ANNOUNCE trial. This study looked at whether adding a targeted therapy called olaratumab to the standard treatment, doxorubicin, was better than doxorubicin alone for patients with adult soft tissue sarcomas. In 2016, this combination was approved by the U.S. Food and Drug Administration, or the FDA, based on the results of a smaller phase II trial. This was approved in what is called an Accelerated Approval Program, which requires a larger study to confirm the findings.

The final results presented unfortunately showed the larger phase III trial did not confirm that the combination of olaratumab and doxorubicin was better than doxorubicin alone, meaning there is no benefit to adding olaratumab to doxorubicin. The reasons for the different outcomes between the 2 studies are not completely known and is likely due to a combination of factors. An important finding, however, was that survival in patients with adult sarcomas continues to improve over time. And for patients receiving doxorubicin alone, overall survival was an average of approximately 20 months, showing that doxorubicin is an effective treatment for patients with adult soft tissue sarcomas.

Based on these results, olaratumab will be withdrawn, and no new patients should start on this treatment. For patients already receiving olaratumab for the treatment of their sarcoma, they should have an open discussion with their oncologist about stopping the drug. For patients who their doctors feel they are receiving benefit from olaratumab, there is a program to allow continued access to this drug.

What I think is most important about this trial is the focus it has drawn to clinical research and sarcoma. Because sarcoma is made up of a large number of very different and very rare cancers, advancements in treatments has been relatively slow. The results of this study have led to a larger discussion about how we think about and design trials for patients with sarcomas. It also highlights how important it is for patients to be seen at centers that have trials for their specific type of sarcoma.

Several trials reported at the meeting exemplify how the sarcoma community can successfully complete trials in rare sarcoma and make potentially substantial advancements. One example is the phase II trial of tazemetostat in patients with epithelioid sarcoma. Epithelioid sarcoma is a rare sarcoma sub-type with disappointing results from standard sarcoma treatments. One of the hallmarks of epithelioid sarcoma is the loss of a tumor-suppressor gene called INI1. When INI1 function is lost in a cell, a tumor-enhancer molecule called EZH2 becomes too active. Tazemetostat blocks the action of EZH2. The trial included patients with several types of cancer that have lost some INI1. This trial reported the results of the cohort of patients with epithelioid sarcoma. The results showed 15% of patients had a partial response, meaning their tumors decreased by about a third, with an additional 56% of patients having a minor response or stable disease. Importantly, in many of the patients whose tumors decreased in size, the response lasted for a relatively long time compared to what we typically see with sarcoma-based chemotherapies. The drug was relatively well-tolerated, with the most common side effects of low-grade tiredness, nausea, loss of appetite, and tumor pain. The company who developed tazemetostat has submitted an application to the FDA for consideration of an accelerated approval for patients with epithelioid sarcoma. If approved, this will be the first drug approved specifically for this type of sarcoma.

Again, the study is just 1 example of how we can make substantial improvements for patients with a rare cancer by collaboration amongst the sarcoma community, both nationally and internationally. Although it will not be possible to have a trial for every sarcoma sub-type, when available, it is important for patients with a metastatic sarcoma to go to centers that have trials for their specific disease. With this approach, I believe we will see even more advancements in the future for patients with sarcoma. Thank you very much for your time, and I hope I have more exciting findings to discuss in the future.

ASCO: Thank you, Dr. Keedy.

Next, Dr. Ryan Sullivan will discuss 2 studies in melanoma, including 1 that looked at treatment for melanoma that has spread to the brain, and 1 that is a long-term follow-up on targeted therapy for melanoma with a BRAF mutation. Dr. Sullivan is a medical oncologist and Attending Physician in the Division of Hematology/Oncology at Massachusetts General Hospital. He is also the Cancer.Net Associate Editor for Melanoma and Skin Cancer.

Dr. Sullivan: Hello. My name is Ryan Sullivan. I'm the Associate Director of the Melanoma Program at the Mass General Hospital Cancer Center in Boston, Massachusetts. Today I'm going to discuss research that was presented at the 2019 ASCO Annual Meeting in the Melanoma Program. There are 2 presentations that I'm going to highlight.

The first is a presentation by Dr. Hussein Tawbi from MD Anderson in Houston, Texas, who presented a follow-up of the safety and effectiveness of a combination of 2 treatments called nivolumab and ipilimumab given together in patients with melanoma who had brain metastases. This trial is also known as the CheckMate 204 study and initially, was presented in 2017 at the ASCO Annual Meeting and was subsequently published in 2018 in 1 of our prestigious journals called the New England Journal of Medicine.

This is an important study because it truly is the largest and most relevant clinical data that we have in how to most effectively treat patients with melanoma who have brain metastases. Brain metastases, unfortunately, are very common scenario for patients with metastatic melanoma. While the majority of patients probably do not develop brain metastases a significant minority do, and brain metastases can certainly complicate the treatment of patients with melanoma. Furthermore, they are also commonly and traditionally very commonly then a cause of death for patients with metastatic melanoma.

The CheckMate 204 trial built upon a number of emerging clinical trials that were showing that some of the newer treatments for melanoma, specifically drugs called immune checkpoint inhibitors which are therapies that alter the way that the immune system interacts with the cancer, have been increasingly effective in patients with metastatic melanoma, and furthermore have actually been moved forward into earlier stages, for example, stage 3 melanoma. And a logical question was whether or not these treatments would be effective in patients with brain metastases.

A common problem with therapies in patients with brain metastases is they may not get into the brain or the tumor to effectively treat that tumor and that was specifically a concern with these types of therapies. However approximately, it was almost 10 years ago when the trial was run and probably 8 years ago when it was published was the trial of ipilimumab in patients with brain metastases. Which the summary of it was that that drug worked about as well in patients who had disease in the brain particularly if that disease was asymptomatic and didn't require treatment for symptoms—it worked about as well in patients who were in that situation whereas patients who didn't have brain metastases but were treated with that medicine and about 20% of patients had long-term control of disease.

Moving forward, the last few years there's been clinical trials that have been published and presented about PD-1 blocking drugs called pembrolizumab and nivolumab which seemed to work a little less well in patients who have disease in the brain, and specifically these drugs probably, in patients who present with metastatic melanoma and are treated and don't have brain metastases, probably about 40 to 45 percent of patients have disease control in response and maybe a third of patients have control that's long-standing. In patients who have disease in the brain, it appears that that number is about 20 or 25 percent with response and durable control of disease, so effective, but not as effective in patients who do not have brain metastases.

So one logical question with emerging data about the combination of ipilimumab plus nivolumab, so ipilimumab plus a PD-1 blocking drug, was whether or not there would be a higher effectiveness. In patients without brain metastases, there's a clear improvement in response rate and maybe a delay in progression of disease and maybe even a slightly better overall outcome in terms of living longer for that combination, but that combination has side effects and those side effects can limit the effectiveness of the treatment.

So it wasn't clear whether or not combining these drugs would be the best scenario for patients with brain metastases. However, this clinical trial, the CheckMate 204 study, looked to study just that. The initial data that had been presented and published was based on 101 patients who were treated. These patients did not have any symptoms of brain metastases but were identified to have these brain metastases on imaging that was done probably just prior to starting therapy for recurrent and/or newly diagnosed metastatic disease. And amazingly over 50% of patients had responses to this combination on this trial, so of the 101 patients, 55 had a response and 59 had control of disease. And perhaps more amazingly, over time, the control of disease rate, which we call progression-free survival which basically just measures whether or not patients are alive and that their disease hasn't progressed, remained pretty stable at about 60%. So 60% of patients at 6 and 12 months had disease that hadn't progressed in the population of patients that previously had very bad outcomes. And that was really better than anything we've ever seen in these patients.

More importantly, the great majority of patients were alive. So almost over 90% of patients at 6 months, over 80% at 12 months, about 75% of patients at 18 months, and it seemed like that was pretty stable thereafter. And so a therapy that had shown effectiveness in patients with melanoma who don't have brain metastases seem to be even more effective in patients who did have brain metastases, at least when you compare that to outcomes that had previously been presented or published with just a single drug of nivolumab or the similar drug called pembrolizumab. So that data that was previously presented and published really set the new standard of care for patients who were diagnosed with metastatic melanoma who were unfortunate enough to have brain metastases, for us as providers who are treating these patients to say, "You need to be on this combination."

At the ASCO meeting, in addition to sort of the update that I just provided, they also presented the data from the cohort B. The second part of this study was in patients who actually had symptoms, and in those patients with symptoms they could be on medicines called steroids. Steroids often will reduce swelling in the brain around a metastasis and can make the symptoms better, however, the challenge with that is these medicines tend to be suppressive of the immune system and so they theoretically could counteract immune therapy like ipilimumab and nivolumab.

In any event, there were 18 patients that were treated on this part of the study. 4 of those 18 patients had responses, so that was over 20%. And importantly, of those patients who responded, 3 of the 4 were not on steroids. That baseline, again, suggesting that potentially patients who are on steroids may have worse outcomes than patients who aren't on steroids, may do a bit better. There's certainly going to be a bit longer follow-up needed to truly understand how effective this approach is in patients who have symptoms and who may be on some steroids. But the bottom line is it's clear that patients who are having symptoms, this is still the best regimen for patients with metastatic melanoma with disease in the brain and that it's possible to have responses even in the situation where those symptoms require patients to be on steroids. And so this is really important information for the field. And again, though it doesn't change the standard of care—our standard of care changed a year-and-a-half or two years ago with the initial presentation of this data, but it solidifies the standard of care and expands it a bit out to patients who also may have some symptoms and/or who may be on steroids and that this is an approach that's possible.

The second study that I wanted to talk about was a presentation. It was the first presentation of very long-term follow-up on BRAF-targeted therapy. So BRAF-targeted therapy for patients with melanoma is only appropriate for about the 40 or 50 percent of patients who have a BRAF mutation that's identified in their tumor. BRAF is a gene that leads to a protein that ends up being a very important part of the signaling pathway that leads to tumor growth and metastasis and evasion of the immune system. And as I stated, about 40 or 50 percent of patients who have melanoma will have an identifiable mutation in BRAF and that BRAF mutation drives tumor growth in those patients.

There are now three combinations of inhibitors that block BRAF and its subsequent signaling to a protein called MEK. And so our standard BRAF-targeted therapy is a BRAF inhibitor and a MEK inhibitor. There are three combinations: dabrafenib plus trametinib, vemurafenib plus cobimetinib, encorafenib plus binimetinib. So there are 3 regimens that are FDA approved for patients with BRAF mutant melanoma that's metastatic or unresectable.

Now, we know that these drugs are very effective. About 70% of patients have significant regression of tumors, and we know that when we compare these to single BRAF inhibitor treatment that combination is better, that patients live longer, have more responses, are less likely to have their disease progress. We know that BRAF inhibition versus chemotherapy is better on all those same parameters. And so what we don't know, however, is whether BRAF-targeted therapy's better than immune therapy, and the purpose of the study I'm going to describe doesn't address that. There are a couple of trials that are still being enrolled to across the world that are answering that question, but we don't have that data to make any definitive statements about what's the best first therapy for a patient with BRAF mutated melanoma. However, we haven't had very long-term data with these combinations.

So this presentation by Dr. Paul Nathan was a combination of patients that were enrolled to either the COMBI-d study which compared dabrafenib, trametinib versus dabrafenib and the COMBI-v study which is dabrafenib, trametinib versus dabrafenib. And the data that was generated was looking at the 211 patients who got dabrafenib and trametinib in the COMBI-d and the 352 patients that got dabrafenib, trametinib in the COMBI-v study, and they just pooled all of that data together and followed to see how well those patients did.

The 3-year data was presented and published a few years back. This was the 5-year data, and I think the most important points are that about 20% of patients are still alive and without progression at 5 years. BRAF-targeted therapy was thought to be something that would be a temporary help and that wouldn't lead to durable benefit, but in fact, it seems like we're seeing durable benefit in these patients and more importantly, over 30% of patients were alive at 5 years. That number being 34%.

When the investigators broke that down, we know that a protein that we can measure in the blood called LDH is associated with poor outcomes, and we know that patients who have a normal LDH tend to do better with these types of therapies. And in fact, over 30% of patients who had a normal LDH and limited number of metastatic sites were alive and progression-free at 5 years. And when you looked at that same bit of data with regards to whether people were alive or not, the great majority, 55%, were still alive at 5 years. So this is proof that some patients can have long-term benefit and disease control with BRAF-targeted therapy who are started on BRAF-targeted therapy as their first treatment for metastatic melanoma, and that if you select patients just by very easily and readily available criteria, like this blood LDH measure and how many sites the melanoma has traveled to, that you can identify a population of patients where the majority will be alive at five years.

Now, we have more work to do. We still need to learn a little bit more about who those 30% of patients are that may have long term disease control in addition to the LDH measure, in addition to the number of metastatic sites. And we and others are working on trying to develop better tests to identify who those people are so that when we have a patient with metastatic BRAF mutated melanoma in front of us we can best offer them the option of BRAF-targeted therapy or immunotherapy and be smarter about making that decision. But I think that this is really an important piece of information because it does prove the concept that long-term control with disease is possible with a therapy that 10 years ago we didn't think long-term disease control was going to be possible. And so it's really exciting data to finally see it. We obviously have a lot more work to do. It's not acceptable to only have 30% of patients alive five years later. We need to get that number to 100% and along the way get it to 50 and then 60, and 70, and 80 percent, etc. But the fact that this data demonstrates that long-term control is possible with these therapies really does make us feel better about offering this to some patients in the front-line setting, and more importantly, inspires us to do additional research to truly figure out who those patients will be.

And with that, I'd like to thank you for your attention today, and it's been a pleasure discussing these 2 presentations at the 2019 ASCO Annual Meeting. Thanks.

ASCO: Thank you Dr. Sullivan.

Learn more about these topics and other research presented at the 2019 ASCO Annual Meeting at www.cancer.net.

If this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play. And stay tuned for additional Research Round Up podcasts coming later this summer.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

The 2019 ASCO Annual Meeting, held May 31 to June 4, brought together physicians, researchers, patient advocates, and other health care professionals from around the world to present and discuss the latest research in cancer treatment and patient care. In the annual Research Round Up podcast series, Cancer.Net Associate Editors share their thoughts on the most exciting scientific research to come out of this year's ASCO Annual Meeting and what it means for patients.

First, Dr. Lynn Henry will discuss 3 studies that explored new treatment options for women with breast cancer, including a study on immunotherapy for triple-negative breast cancer and 2 studies on treatment for hormone receptor positive, HER2-negative breast cancer. She also discusses research on the effects of a low-fat diet in women diagnosed with breast cancer, and a study on whether pregnancy after breast cancer increased the risk of recurrence.

Dr. Henry is an Associate Professor and Interim Division Chief of Oncology in the Department of Medicine at the University of Utah and Director of Breast Medical Oncology at the Huntsman Cancer Institute. She is also the Cancer.Net Associate Editor for Breast Cancer.

Dr. Henry: Hi. My name is Dr. Lynn Henry. I'm a medical oncologist who specializes in treating breast cancer at the University of Utah. Today, I'm going to discuss research on breast cancer that was presented at the 2019 ASCO Annual Meeting in Chicago. In particular, I'm going to focus on the results of some clinical trials that directly impact how oncologists treat patients with breast cancer. First, I'm going to give just a very brief overview of the types of breast cancer and then talk about some research that was presented on triple-negative and hormone-receptor-positive breast cancer. Then I'm going to briefly review findings related to diet and breast cancer as well as pregnancy after breast cancer in women with BRCA mutations.

As a quick reminder, there are multiple kinds of breast cancer. Some breast cancers are called hormone-receptor positive or estrogen-receptor positive, and those are stimulated to grow by estrogen. We treat those cancers with anti-estrogen treatments or anti-hormone treatments to block estrogen or lower the estrogen level in the body. Other breast cancers are called HER2-positive. These are often more aggressive cancers. But because they have extra copies of HER2, they often respond to treatments that block HER2. And finally, there are breast cancers that don't have hormone receptors or HER2, and these are called triple-negative breast cancer.

So first, I'm going to focus on this type, triple-negative breast cancer. Until recently, most of the time, we treated triple-negative breast cancer with chemotherapy because we hadn't found other drugs that worked very well. There's a new type of drug, however, called immunotherapy that tries to use a patient's immune system to help fight the breast cancer. Early in 2019, the FDA approved a new treatment for triple-negative breast cancer that is a combination of a chemotherapy called Abraxane and a new immune drug called atezolizumab or Tecentriq. The combination increased the length of time until cancer progressed or grew. Overall, the treatment was fairly well tolerated. But we did learn that in order for the treatment to work, the cells surrounding the cancer have to have at least a small amount of a very specific protein called PD-L1.

So at this recent ASCO meeting, we heard an update about this treatment. In the trial, the patients whose cancers had the PD-L1 protein and who got the combination treatment lived 7 months longer than those who got just the chemotherapy, which was an increase from 18 months to just over 2 years. This is an important first step towards finding a better treatment for this difficult type of triple-negative breast cancer. And this treatment is currently available to patients. Additional clinical trials are going on now to try to find even better combinations of chemotherapy and immune therapies to treat this type of cancer.

So next, I'm going to talk about hormone-receptor-positive breast cancer. There were two trials of this type of cancer that had important results presented at the ASCO meeting. First, I'll focus on the treatment of early-stage node-negative breast cancer that is hormone-receptor positive and HER2 negative. The Oncotype DX test is a test we commonly run on tumors of this type to help determine whether treatment with chemotherapy is likely to be helpful. For this test, if your tumor has a score over 25, then chemotherapy is generally recommended in addition to anti-hormone therapy. If you have a score under 11, then chemotherapy is not recommended and a patient should receive only anti-hormone therapy. But for those with scores between 11 and 25, it was unclear how beneficial it was to receive chemotherapy. Last year, the results of the TAILORx trial were reported. And that showed that for women over the age of 50, if their tumor had a score between 11 and 25, they were not likely to get benefit from chemotherapy. However, it turned out it was a bit more complicated for women aged 50 and under. For those with scores between 11 and 15, chemotherapy was not likely to be beneficial. However, for those who score 16 to 25, chemotherapy might be beneficial. So we got some answers but not everything.

At this recent ASCO meeting, additional information was reported to help guide treatment decision making for this middle group of women aged 50 and under. So for women whose scores were at the higher end, 21 to 25, chemotherapy was found to be likely to be beneficial. However, in that middle group, the 16 to 20 group, chemotherapy might be beneficial but generally only for women with higher risk cancers, meaning larger cancers or higher grade. This information is helpful because it provides more information for oncologists and for patients when they are discussing whether or not chemotherapy should be included as part of their treatment.

So switching gears a little, still staying with premenopausal women and hormone-receptor-positive HER2-negative cancer, but now thinking about metastatic breast cancer, so cancer that has spread. We now have additional information about treatment with an anti-hormone therapy plus an additional drug called the CDK4/6 inhibitor. We've routinely been recommending this treatment combination because it leads to a longer time before the cancer progresses. But until now, we didn't know if it actually allows women with this type of cancer to live longer. The results of the MONALEESA-7 trial, which looked at the combination of an anti-hormone therapy plus the drug called ribociclib, showed that women who received the combination instead of anti-hormone therapy alone live almost 30% longer. So looking at women 3 and a half years after they started treatment, just over 70% of the women who were treated with ribociclib plus anti-hormone therapy were alive compared to just under half of women treated with anti-hormone therapy alone. So these results reinforce that this is an excellent first approach to treatment of premenopausal women who have newly diagnosed, hormone-receptor-positive HER2-negative metastatic breast cancer.

So in addition to studies looking at these specific types of breast cancer, there were 2 other interesting studies that were applicable to breast cancer more generally. So there was a large study that was reported that looked at whether having a low-fat diet reduced the likelihood of developing triple-negative breast cancer. So in this study, postmenopausal without cancer were randomized to either a low-fat diet or their usual diet and followed for many, many years. Over time, some of these women developed breast cancer with no difference between those who followed the low-fat diet or the regular diet. However, in this new report, they looked specifically at the women who developed breast cancer who were enrolled in this trial. Fewer women died from their breast cancer if they ate the low-fat diet, especially if they had preexisting high cholesterol, diabetes, and obesity. These findings suggest that having a low-fat diet may actually reduce the risk of dying overall and also specifically from breast cancer. Now, these need to be validated, and we don't quite understand why this would be the case. But in general, it seems like having a low-fat diet, avoiding high cholesterol, diabetes, and obesity is a good thing.

And then finally, 1 question that comes up often is whether it is safe to have a baby after the diagnosis of breast cancer. This is especially concerning for patients who have a mutation in genes called BRCA1 or BRCA2 since those mutations greatly increase their risk of developing both breast and ovarian cancer and also leads to the diagnosis of breast cancer at an early age. In addition, patients with these mutations are often recommended to have their ovaries removed at a young age. So in this study, patients who became pregnant did so about 4 and a half years after they were diagnosed with breast cancer. There was no apparent increase in miscarriage, preterm birth, or birth defects compared to what would be expected in women without cancer. And in the patients, there was no increase in the risk of breast cancer recurrence compared to those who did not become pregnant. And in fact, those who became pregnant were slightly less likely to have their cancer return, especially those who had mutations in BRCA1. So while there are some limitations to the study, the findings are reassuring that there does not appear to be an increase in risk of breast cancer returning in these patients with BRCA mutations who become pregnant after breast cancer diagnosis.

So overall, as you can see, there's a lot of exciting research going on across all the different subsets of breast cancer. The results of many important clinical trials were reported at the recent ASCO meeting, and there are many more trials ongoing that will hopefully result in the approval of multiple new effective treatments for breast cancer. In addition, there's research going on examining the impact of treatment on patients with breast cancer and trying to improve the lives of those living with breast cancer. Clinical trials are critical for the development of these new treatments.

Well, that's it for this quick summary of this important research from ASCO 2019. Overall, we continue on a fast track in breast cancer, with many new and exciting therapies being actively studied and research helping support our patients do better than ever before. Stay tuned to Cancer.Net for future updates from upcoming breast cancer conferences. Thank you very much.

ASCO: Thank you, Dr. Henry.

Next, Dr. Ezra Cohen will discuss several studies that looked at using immunotherapy and targeted therapy to treat different types of head and neck cancer. Dr. Cohen is Associate Director of Translational Science and leads the Solid Tumor Therapeutics research program at Moores Cancer Center at UC San Diego Health. He is the Cancer.Net Associate Editor for Head and Neck Cancer.

Dr. Cohen: Hi. I'm Dr. Ezra Cohen from UC San Diego Moores Cancer Center. Today, I'm going to talk about research on head and neck cancer that was presented at the 2019 ASCO Annual Meeting. I think the most impactful presentation at the meeting was a follow-up on the KEYNOTE-048 study, which implemented the drug pembrolizumab, an anti-PD-1 antibody in first-line recurrent metastatic head and neck cancer. These were patients who were treated with curative intent or presented with metastatic disease, and either way, either had recurrence or eventually developed metastases.

The first-line standard of care for these patients used to be the so-called extreme regimen, which involved platinum, 5-FU, and cetuximab. This was validated in an earlier phase III study that was conducted about 10 years ago and was the approved first-line regimen for these patients. In KEYNOTE-048, this extreme regimen was tested against either pembrolizumab alone or pembrolizumab, platinum, and 5-FU, in other words, substituting cetuximab for pembrolizumab in one of the experimental arms.

We'd initially seen the interim analysis data at last year's ESMO meeting, but this year, we have the final analysis presented at ASCO. And what we saw was that both experimental arms actually achieved an improvement in overall survival compared to the extreme regimen. Interestingly, for pembrolizumab alone, this occurred in patients whose tumors expressed some level of PD-L1. That was evaluated by something called the composite score and takes into account both stromal and tumor cell staining of PD-L1. In fact, even at a very low level—that is CPS greater than or equal to 1—pembrolizumab monotherapy was superior to the extreme regimen with respect to overall survival. For all patients, the regimen of pembrolizumab plus chemotherapy was superior to the extreme regimen irrespective of PD-L1 staining.

What we saw at this year's ASCO meeting was that, in fact, first, the higher the expression of PD-L1, the greater the benefit one derived from pembrolizumab either as monotherapy or in combination with chemotherapy. And in patients who had higher levels of PD-L1 and received both pembrolizumab and chemotherapy, the overall survival was quite remarkable with a hazard ratio of just higher than 0.6. In fact, we now have FDA approval in the United States for pembrolizumab monotherapy with tumors that have some expression level of PD-L1—that is CPS greater than or equal to one—or for all comers in patients who either the CPS status is unknown or patients whose tumors don't express PD-L1.

Beyond KEYNOTE-048, we saw interesting data in first-line recurrent metastatic using a regimen of taxane, platinum, and 5-FU compared to the same extreme regimen that we just mentioned. That regimen turned out to be much better tolerated with fewer adverse events but with no improvement in overall survival, giving us a regimen that we could substitute for the extreme regimen if one wanted to, realizing that it does not involve immunotherapy, and for some patients, this may still be an appropriate treatment.

Beyond the first-line recurrent metastatic studies, we saw a few interesting trials looking at targeted therapy in head and neck cancer but specific subsets. The first was in patients whose tumors expressed HER2 at very high levels—that is HER2 amplified—and had salivary ductal carcinoma. We've known that a proportion of salivary ductal carcinoma patients' tumors amplify this gene, HER2, similar to breast cancer and some other malignancies and that trastuzumab may, in fact, be effective. Well, in this study conducted by the Memorial Sloan Kettering Group, an antibody-drug conjugate trastuzumab emtansine was employed as a single agent in these patients whose, again, tumors amplified HER2. And what they saw was a remarkable 90% response rate. Now, this was only in 10 patients, so the study is small, but I think it's safe to say that this drug appears to be quite effective in patients with HER2-amplified salivary ductal carcinoma.

Along those lines, in the subset of thyroid cancer patients whose tumors either mutate or have a RET fusion, the gene RET, there appeared to be very high efficacy for a novel agent that targets the RET oncogene. This was in both patients with medullary thyroid cancers that often have a RET mutation or in papillary thyroid cancers whose tumors often have a fusion of the same RET gene. Again, underscoring the idea that if we can target a driver even in a relatively small subset of patients, the benefit may be quite large. Along those lines, we had seen prior data for track inhibitors in patients who have in track fusions. And again, this applies to subsets of head and neck cancer patients that have either salivary gland cancers or thyroid cancers.

Lastly, we continue to see emerging promising data of combinations with immunotherapy, and 2 highlights from ASCO were pembrolizumab with cetuximab showing a response rate of over 40% in a small group of patients and pembrolizumab with a TLR9 agonist called SD-101 showing about a 30% response rate. Of course, these data are very early and uncontrolled, and so we have to follow these stories further along to see if, indeed, these early signs of efficacy turn out to validate. But the idea that further combinations of immunotherapies eventually making their way to larger studies and hopefully approval is now well enforced in head and neck cancer. Thank you very much for your attention and hope you enjoyed the ASCO 2019 Annual Meeting.

ASCO: Thank you Dr. Cohen.

Next, Dr. Charles Loprinzi will discuss new research on ways to prevent or treat nausea and vomiting caused by cancer treatment. Dr. Loprinzi is a medical oncologist and the Regis Professor of Breast Cancer Research at the Mayo Clinic. He is also the Cancer.Net Associate Editor for Psychosocial Oncology.

Dr. Loprinzi: Hello, I'm Charles Loprinzi, Regis Professor of Breast Cancer Research at Mayo Clinic. I'm going to be talking today about chemotherapy-induced nausea and vomiting. Now, chemotherapy can cause a lot of nausea and vomiting. That's well known, for years and years, by many people. It's not all types of chemotherapy, but some chemotherapy drugs cause a lot of nausea and vomiting, and others cause little to none. It's not as big a problem now as it was decades ago when we didn't have good drugs to try to prevent nausea and vomiting. Many drugs over the time have been developed for trying to prevent this nausea and vomiting problem. Examples of the drugs that cause a lot of nausea and vomiting are Cisplatinum, and Adriamycin and cyclophosphamide is a combination that is oftentimes used for patients with breast cancer.

So in the past, we have developed many, many drugs for this. Three of the drugs that have commonly been used for the last many, many years for treatment or prevention of nausea and vomiting associated with chemotherapy are corticosteroid medications like Dexamethasone. It's quite cheap. It's got some side effects, but relatively cheap. Then there's a group called 5-HT3 receptor antagonists. I didn't make up that name, but that's the long name for it. They're relatively expensive, some more expensive than other ones. And then there's another group called NK1 receptor antagonists, and they can be quite expensive, sometimes being hundreds of dollars for each dose that's given to try to prevent nausea and vomiting related to chemotherapy.

So a couple years ago, 2016, there was a report in the New England Journal of Medicine, which is a prominent journal for us in the business, that looked at a drug called olanzapine. It's a relatively cheap drug. It's a drug that was developed for psychosis-type problems, given for long term in those patients. But it had been noted that if it's given for just a few days, it seems to markedly improve or decrease the instance of nausea and vomiting, or if people were having nausea and vomiting, it appears actually to help and reverse that particular problem.

So this trial looked at 10 milligrams of this drug for 4 days, given before chemotherapy, and then for 3 more days after that. Patients who were on this study got the 3 drugs that I talked about before with the olanzapine or with the placebo. And it noted that it improved things by quite a bit. The patients who had what we call a complete response, which means no vomiting and no need to take extra medications because of nausea and vomiting, improved from 41% of the patients who were on the placebo, to 64% who were on the olanzapine, a 23% improvement.

And if we looked at a different endpoint there, the number of patients who had no nausea during the five days after chemotherapy, it was 22% in the group that got the placebo and improved to 37% in the group that didn't. So it was a good result in that area. One of the problems with this drug is that it can cause some sedation, cause some drowsiness for some patients. Most patients, not much, but some patients, it's a problem.

So most trials that have been done in the past use this 10-milligram dose. And what we learned at ASCO in 2019, our main meeting that we have once a year, was that people looked at a 5-milligram dose and had looked at 5 milligrams instead of the 10 milligrams. And what it showed is that the results seemed to be quite similar to what was seen with 10 milligrams. They did the study quite the same as what had been reported in the previous trial and the results looks similar. They didn't compare 5 milligrams versus 10 milligrams, which would've been nice because then we would have better information along that line. They did note that there was drowsiness that some patients had, and it looks similar to what was seen with the 10-milligram dose. But these data support, but don't prove, that giving 5 milligrams does look like it's good in this particular setting.

So data from this year also supported that instead of giving the drug during the day when getting the chemotherapy, sometimes, people take it at bedtime, and there, the drowsiness is not as big a problem because you want to be drowsy at bedtime. So it's not proven that it works as well at bedtime, but it suggests that that actually is the case.

Data from this year also supported that if you looked at those 3 drugs I mentioned before and just took out that 1 really, really expensive one, the NK1 receptor antagonist, and put the olanzapine in there instead, that very cheap medication, that that looked like that one with the olanzapine did better than the very expensive one. Not a whole lot better; they looked similar, but a little bit better in that setting, and it was a whole lot cheaper. This was also seen in a publication that came out a couple of years ago which showed the same sort of result. Again, not proof that it's beneficial, that it's okay to do that, but it looked better.

So the next obvious question that comes up then is when you have these 4 drugs that you give, the 3 drugs I mentioned before and this fourth one, what about if you take away that more expensive one and see how they do there? So there was a trial at the ASCO meeting that suggested that the addition of that expensive medications didn't provide a whole lot more benefit. Right now, there is a trial going on across the United States, with about 800 patients who are scheduled to go on this trial, and it's approving about 30 patients a month, which is a pretty good accrual rate, which is looking at this particular question where people would get the 4-drug regimen versus 3 drugs where they take away the expensive intravenous medication.

So, in summary, 35 to 40 years ago, when I started my cancer career, when I was about 10 years old, most patients had a lot a trouble with nausea and vomiting with drugs like Cisplatinum. Now, this a minority of patients who have a lot of problems, and we're continuing to find new things that will make things better along this line. Thank you for your attention.

ASCO: Thank you Dr. Loprinzi.

Learn more about these topics and other research presented at the 2019 ASCO Annual Meeting at www.cancer.net.

If this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play. And stay tuned for additional Research Round Up podcasts coming later this summer.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

In this podcast, we'll discuss lymphedema, or swelling, in the legs after cancer treatment, including what can cause lymphedema, and how to prevent and manage it. This podcast will be led by Dr. Andrea Cheville, the Director of Cancer Rehabilitation and Lymphedema Services in the Department of Physical Medicine and Rehabilitation at Mayo Clinic in Rochester, Minnesota, and Jenny Bradt, a LANA-Certified Lymphedema Therapist and Clinical Lead Physical Therapist in the Department of Physical Medicine and Rehabilitation at Mayo Clinic.

ASCO would like to thank Dr. Cheville and Ms. Bradt for discussing this topic.

Dr. Cheville: Hi, I am Dr. Andrea Cheville, the director of Cancer Rehabilitation and Lymphedema Services at the Mayo Clinic in Rochester, Minnesota. And I am joined today by our lead lymphedema therapist, Jenny Bradt. Jenny, do you want to tell our listeners a little bit about your background?

Jenny Bradt: My name is Jenny Bradt, and I am the Clinical Lead Physical Therapist at the Lymphedema Clinic here at Mayo Clinic. I am a LANA certified therapist. We'll be talking about that a little bit later, and what I do in and out, every day, are treat patients with lymphedema.

Dr. Cheville: And I think it's worth noting that Jenny and I have been in this business for quite a while. I've been directing Lymphedema Services, largely for cancer patients, since 1999. I initially started my work at the University of Pennsylvania in Philadelphia. And, Jenny, has it been 30 years yet for you?

Jenny Bradt: Since 1995. That's a long time.

Dr. Cheville: No, not so long. Okay. Well, to start out with, we thought it might be useful to talk about what is lymphedema? And how does lymphedema differ from other kinds of swelling? And why does it happen frequently among patients with cancer? And it really comes down to a matter of plumbing. The cells of your body need oxygen and nutrients in order to survive. In fact, they don't last very long without both of those. And so the body transports very large volumes of oxygenated blood throughout the body. But once the blood has reached the tissue, it has to get back to the heart, which is not a mean feat. And in addition, all of the debris, the garbage that cells make—just like we make garbage, our cells make garbage—that also has to get out of the tissue.

And so, we have 2 sets of pipes to accomplish this task. We have our veins and the lymphatic vessels. And the veins principally carry fluid. Roughly 90 to 95 percent of the fluid that your heart pumps into any tissue is returned by the veins. And veins also will remove smaller molecules, and these proteins, fatty acids. But the big ones, and again, these are tiny by our perspective. Those are returned to the general circulation by the lymphatic system. So these are bits and pieces of dead cells, cells that die in our tissue, what we call long-chain fatty acids, large proteins, and bacteria.

And all of that solid waste material can build up outside of our cells, and it's the tiny, little lymphatic, what we call capillaries, that absorb those, and then through larger and larger lymphatic vessels, they eventually transport those. And actually, the lymphatic system pumps. It has muscle in the walls of the vessel, and it's remarkably efficient at moving this proteinaceous and other debris out of our tissue and to the lymph nodes. And the lymph nodes do 3 things. They regulate the viscosity of lymph, how thick it is. They remove debris that the body doesn't feel a need to recycle. And they identify harmful pathogens, and those are principally bacteria, because our skin is not a perfect barrier and bacteria get in through our skin all the time. And at the level of the lymph node that the immune system learns, "Hey, there's a problem." And that's assuming that there aren't just a few bacteria, but when we really have an infection. And it's a lymph node that the body mounts a response, which is why you may have palpated enlarged, tender lymph nodes in your neck, or in your armpit because those lymph nodes are busy fighting off an infection.

So for cancer, both for staging, to accurately stage our cancers, and to achieve local control, we remove or irradiate lymph nodes. There's also increasing evidence to suggest that some chemotherapeutic regimens can compromise our lymphatic system. But it's principally radiation and surgery have been implicated in causing lymphedema. Which brings us to, well, what kinds of cancer treatments are associated with lymphedema? And in truth, any cancer treatment that involves the removal or irradiation of lymph nodes can cause lymphedema.

And one aspects of lymphedema that continues to puzzle us is why it's delayed. And so large data sets have accumulated over time that guide us in understanding when lymphedema starts. And what we've learned, for the most part, it starts by the third year out, the third year following treatment. With most patients presenting in the first 2 years. But not immediately, and we think this is because that solid debris, that the lymphatics are responsible for removing, that builds up slowly in the tissue. It's not an immediate phenomenon. Although, for some patients who have severe damage or compromise of the lymphatics in the course of their cancer treatment, they may have swelling immediately. But often, it's a more gradual onset, and the protein builds up, the other debris, it's irritating to the body. The body is doing its best to handle the problem, which it knows isn't normal. And eventually, it causes low-grade inflammation, which many times, is the first indicator that a patient is developing lymphedema. They may have heaviness in their arm, their leg, or the affected body part.

Jenny, what are some other symptoms that patients often describe when they're—what we call Stage 0 or subclinical lymphedema—before we can appreciate swelling?

Jenny Bradt: Sometimes, those changes are sort of subtle. Obviously, they might notice that their ankles are bigger are at the end of the day, but by morning, they're back to normal. But some patients, especially lower extremities, say, "Well, my jeans fit tighter on one leg, or in one buttock, more than the other side." Or they just don't feel the muscles underneath their skin as much, where the skin just doesn't wrinkle as easily as it does with a less affected leg. The skin might feel thicker. It doesn't necessarily have to make a thumbprint, it's just this overall thickness. They might have veins on the top of their foot that are kind of disappearing. They don't notice them as much as the other side, and those would be early signs of lymphedema.

Dr. Cheville: So first, we have—not in everybody, but often—just the symptoms. Heaviness, maybe some aching, and a really important point is that this is a general diffuse feeling. Lymphedema, for the most part, does not cause focal pain. So cancer survivors who have pain in a knee or a wrist or a specific part of their affected limbs, that should not be blamed on lymphedema, and it should not delay a workup for an alternate explanation. But that heaviness, aching, particularly after activity, or if it's the leg standing for a long time, those can be the first signs followed by the subtle changes in volume that Jenny had described. But over time, the debris, the solid material builds up in the tissue, causes inflammation, and will cause scarring or what we call fibrosis. And it's simply collagen, loose disorganized connective tissue that over time, can accumulate and lead to an enlarged—sometimes, very enlarged—extremity. The arms and legs are most frequently affected. But because every tissue on our body, that's face, trunk, breast, genitals, create lymph, lymphedema can, essentially, affect any of our somatic tissues.

So, Jenny, could you share some strategies that patients can use to reduce their risk of lymphedema?

Jenny Bradt: Yeah. I think it's important to emphasize that the most important thing to do is to observe your leg and if you note any swelling to treat it right away. Because it is easier to treat in early stages. And never feel that you have too little swelling to report. There's never going to be a time where there's too little swelling to report.

An important symptom to watch for is infection of the skin. The risk of developing a skin infection in the leg or legs that are at risk for lymphedema is greater because there's a delayed lymphatic flow in that leg. A skin infection, also called cellulitis, is relatively easy to diagnose and treat. However, if an infection is not treated quickly it can lead to much more swelling in the limb and make it more difficult for the lymphatic system to work well after the infection has resolved.

So any changes in color or temperature of the leg should be reported the same day you see them if they are there. So observe your leg. Become familiar with its normal color and appearance so that you can recognize changes if they occur. So for example, if your leg's usually a little pink when your feet are on the floor but not as much when they're elevated, and then you see that your feet stay red or pink when they're elevated, and they're red and warm, well, that's something that should be checked. Because it wasn't what's normal for your leg.

There's usually an identifiable cause to most cases of cellulitis, like an open area that allows microorganisms to invade the normal barrier of the skin. And for this reason, it's important to avoid situations that can cause cuts or scrapes in the skin. So if you do have a cut or a scrape on the affected leg, watch and make sure it is healing without any increase in redness to the area. And if you have an open area in the skin, avoid situations where bacteria can invade the wound, such as swimming in a lake.

Cellulitis in the leg can be related to fungal infections between the toes, and that's why it's absolutely important to treat and avoid athlete's foot. Athlete's foot causes cracks and web spaces between the toes. This allows microorganisms to invade the foot, so take care of your feet. Avoid walking with bare feet in public shower areas and locker rooms, and if you do have an athlete's foot infection, treat it with over-the-counter anti-fungal medications. There's powders and there's ointments, and if cracking of the skin is a problem, maybe an ointment might work better. But if you're always having sweaty, damp feet, well, a powder anti-fungal medication might work better. But the goal is to make your feet unwelcome for fungus. And it's important to keep your toes clean and dry.

Most lymphedema prevention is aimed at preventing excess inflammation, in general, that can occur in the leg at risk. And there's obvious sources of increased inflammation or swelling. For example, a broken bone would cause more swelling. And, of course, everyone tries to avoid traumatic injury, but the other more subtle types of injuries are like the overuse type of injury. So if you want to do something new that you haven't done, start by doing it gradually. What we do know about exercise is that it's beneficial, and eventually, your exercise will make your body stronger and less likely to be injured.

But the fact that injuries can cause a greater demand on your lymphatic system is the reason why it is important to be strong but to do that in a slow and measured way. So, for example, if there's an activity that you enjoyed doing before you had cancer treatment, it's very likely that you can continue to do that activity. But be mindful of the time off that you had to take for your cancer treatment and work slowly back to your prior level of fitness. Physical therapists can be very helpful in guiding you back to your fitness goals and can help you treat and avoid injury.

If you're interested in starting a new strengthening program for your legs, it's important to start at a very low level and a manageable level increasing in intensity much slower than you normally would if your leg was not at risk for lymphedema. But I cannot emphasize enough it is important to stay active, lean, healthy, strong muscles, good joint motion. That all helps to circulate the blood and return the lymph fluid to your heart, and of course, if you smoke, you need to take active steps to stop smoking.

So how do we treat lymphedema if it happens? We've talked about the different stages of lymphedema, and it is not inevitable that lymphedema will gradually become worse and worse. It getting worse can be avoided by treatment. And the goal of treatment is to reduce the swelling in the leg, but then to take steps constantly to keep that swelling from returning. So treatment of lymphedema is not a curative treatment. It is management. We have not found a cure for lymphedema yet. So it's important to understand that there are 2 parts to lymphedema treatment, and they can be referred to as phase 1 and phase 2. Phase 1 treatment involves reducing the limb, getting it smaller, while phase 2 involves maintaining it.

In order to reduce the leg initially, it is necessary to apply compression, but you have to apply compression that can shrink with the leg. And that's the reason why we use compression bandages, or sometimes, I'll also call them compression wraps. Most people think of a compression wrap as an ace or elastic wrap when they think of a compression bandage. But in lymphedema treatment, we use something called a short stretch bandage, and it has no elastic in it. The short stretch wraps are used because they create a containment of a leg so that the bandage itself does not expand when the muscles contract and expand.

So what happens is when the leg muscles contract, they push up against the bandages, which don't expand, and the muscle pump squeezes the vein's lymphatic vessels more effectively. What this does is it helps moves the excess fluid up and out of the leg, and as a therapist, I can customize a short stretch wrap by including foam pieces inside that short stretch wrap that helps to mold and contour out the leg if it's gotten very swollen and help soften the tissue that might've gotten more brawny or more hard. When we add foam under a wrap, it also gives something for the leg muscles to work against. And when you move in a leg where there's foam inside it, it also kind of massages and softens the skin. And so it does help improve the skin quality, and it improves skin mobility.

Legs should move through a series of exercises after every wrap. And these exercises are called remedial. Their purpose is simple. They are done to encourage the muscles to contract against the bandage. And they're not difficult. They can be made up of simple range of motion exercises or muscle contractions.

There are other tools we use to reduce swelling along with the compression bandaging. Sometimes, we'll do a massage, which is also called manual lymphatic drainage, or MLD, and that helps mobilize swelling and soften tissue. But MLD needs to be used in conjunction with compression to be effective. Pneumatic pumps are used similarly in phase 1, but they also should involve compression between pumping. All phase 1 therapy should include education on how to take care of your skin, how to observe for those skin changes, keep the legs moisturized yet dry, keep the skin intact, and treat any wounds right away.

Now, phase 2, which is the maintenance phase, is often more difficult than phase 1 because it involves a bit of trial and error.

Compression socks or stockings are used in phase 2 to maintain the size of a limb, but they are not necessarily superior to bandages in terms of compression. They simply allow you to go about your life without bulky compression bandages on the leg. We think of compression socks, like compression stockings, as defense, where the bandages are offense. So the bandages work to actively reduce the leg, but the compression socks maintain the smaller size. A well-fitting compression sock should be tolerable all day long. It should keep your leg the same size from morning to evening. And that takes a bit of work to find the right sock for you. And so it's important to work with a knowledgeable fitter and therapist together to figure out what works best for you. So in less severe cases of lymphedema, when you're in that stage 1 where it still reduces at night, a compression stocking during the day might be all that is needed as part of the maintenance program to keep the legs the same size. But for more stubborn cases, additional means of maintaining the reduced size might be needed. And you would know this is necessary if, in your compression sock during the day, your leg swells up and kind of creeps up by the end of the day. Sometimes, we'll add compression wrapping again at night because that will reduce the limb while you sleep with the added benefit of softening a leg that has developed some of those skin changes and thickening.

Some days are simply more demanding on a leg, and an occasional wrap at night for some people might be necessary. Wrapping at night is what we use simply because it doesn't interfere with your daytime movement. And for those patients who find that they need to wrap their leg at night fairly regularly, they do have compression devices on the market that mimic these compression bandages. It's important to work with a lymphedema therapist to help you decide what device might be best for you. And we don't wear compression socks at night simply because they are fit really tightly, and they have that more elastic compression that presses against the skin. And when your leg isn't moving, that can start to become uncomfortable. A well-wrapped leg—a good bandage should be more padded and more comfortable when somebody's asleep at night. And remember, every compression wrap is a custom fit to your leg, so it works to reduce the size of a leg better than a compression sock. And there are other tools that can be used in a phase 2 program, such as self-manual lymphatic drainage, maybe a pneumatic pump, but exercise is essential in all of your maintenance programs. So exercise is the key. Dr. Cheville, would you like to talk about how patients could find an appropriate provider to help them manage their lymphedema?

Dr. Cheville: I was just going to ask that question [laughter] because it's hard. First, Jenny did a beautiful job of kind of giving a remarkably comprehensive overview of lymphedema, and I just wanted to call out a few things that I think are key take homes and, Jenny, correct me if you disagree. But one, as Jenny said the importance of exercise. And we want to create better pump, and to do that, we use resistive exercises. So both to help the venous blood get back to the heart but also the lymphatics. Having strong muscles, and not atrophied or not collapsed muscles in your leg is important. So that's one type of exercise we would prescribe. The other is the remedial exercises that Jenny mentioned, and that's just creating a pumping action. The idea of becoming intimately aware of your leg, and if you're starting to change your activity profile either in intensity or type, just exactly as Jenny said, keeping an eye on your leg for changes, particularly after prolonged standing or activity.

I really liked what you said about the garments being the defense and the wrapping the offense. I'm going to use that because I think that encapsulates the role of the different compression devices that we use very nicely.

And I wanted to just touch, again, on cellulitis because this is a skin infection categorized by patchy redness. Usually, it's a very discreetly demarcated area of redness, also warmth. There can be associated pain and worsening swelling. Typically, it presents after a patient has developed lymphedema but not always. At times, it's the first indicator that a patient has lymphedema. It should trigger an immediate, as Jenny said, communication to your care team, your primary provider, going to an ER because the infections can be dangerous. But also, they can cause permanent worsening of the lymphedema that can be challenging for us to reverse as practitioners. So if you have established lymphedema, this is something that should be on your radar, and I would encourage you to talk to your care team about it. And even if you don't have athlete's foot, because even minuscule amounts of fungus on your toes can create a larger portal for bacteria that normally lives on your skin to enter. So these days, I tell all my patients to use an anti-fungal powder or spray on their feet, roughly 3 times a week. I like the sprays because they get in the little crevices, and they can be less cakey and chalky than the powder.

Any other key take-homes Jenny? Do you agree with those?

Jenny Bradt: I definitely do. And I think that it is important to have—if it's possible—for you to find a therapist who's a lymphedema specialist in your area, because over the course of the time when you will be managing your leg, if there is something that is a setback, it's important to get back in touch with a therapist. They'll know you. They know your leg, and they know what works well for you. There is a designation of CLT-LANA Certified Therapist. That's the Lymphatic Association of North America. If a therapist has received an additional 135 hours of training beyond their normal physical therapy or occupational therapy degree, they can sit for that exam and get a designation of CLT-LANA. They can be occupational or physical therapists, but they would--

Dr. Cheville: Massage therapists?

Jenny Bradt: Massage therapists? I kind of prefer a medical model. We do very well having therapists who are LANA certified, but work carefully, closely, with the actual medical team of that person, so we can take care of the entire person.

Dr. Cheville: Yeah, I would agree. I think a key feature though is connecting with a good therapist. And the LANA Lymphology Association of North America website has an interactive search function that will help you identify individuals in your area. And even if you don't find somebody who's in your immediate proximity, often reaching out and contacting that person—lymphedema, it's a small community. We tend to know each other, and they very likely will be able to direct you to appropriately trained individuals, that are convenient for you.

And as a physician, hopefully, medical school has changed, but we received almost no training when I went through. This was longer ago than I'd like to think, but in lymphedema, or the lymphatic system, and what I have discovered amongst my patients over the years is they've had to become self-advocates and often educating their own care teams about their unique needs as lymphedema patients. There aren't a tremendous number of physicians specialized in lymphedema. But if you're really struggling with a condition, and feel that you're not getting appropriate local support, I would encourage you to reach out and identify a physician specialist. Which may require some travel, but it may be well worth the effort. So thank you for your attention.

Jenny Bradt: Well, thank you very much for listening, and we hope that you have many healthy and enjoyable years of exercise with your legs.

ASCO: Thank you, Dr. Cheville and Ms. Bradt. Learn more about how to prevent and manage leg lymphedema at www.cancer.net/lymphedema. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

The 2019 ASCO Annual Meeting brings together physicians, researchers, patient advocates, and other health care professionals from around the world to present and discuss the latest research in cancer treatment and patient care. In the annual Research Round Up podcast series from ASCO's patient education website, Cancer.Net Associate Editors share their thoughts on the most exciting research in their areas of expertise and explain what it means for people living with cancer.

Look for the first Research Round Up podcast this June, and subscribe to Cancer.Net Podcasts on Apple Podcasts or Google Play for more expert podcasts for people with cancer.

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

Monika Sharda: Hi, I'm Monika Sharda, an editor at Cancer.Net, and your host for today's podcast. In this episode, we will discuss genetic testing for hereditary cancers. Our guest is Dr. Allison Kurian, a medical oncologist at Stanford University. She is also the Director of the Stanford Women's Cancer Genetics Clinic and serves as a Specialty Editor for Cancer.Net. Welcome, Dr. Kurian.

Dr. Kurian: Thank you so much for having me.

Monika Sharda: Dr. Kurian co-authored a recent study in the Journal of Clinical Oncology about genetic testing among breast cancer and ovarian cancer patients. Before we get into talking about the study, tell us about genetics and the role they play in cancer risk. What does it mean to have an inherited risk for cancer?

Dr. Kurian: Yes, that's a great question. And we've learned so much about it in recent decades really picking up the pace the last five years or so. What it typically means is that a person has inherited a genetic change from one of her parents. And I'm going to say "her" because it's mostly women we'll be talking about today, though it is the same in men when they inherit a change. And so she would have inherited a change in a gene that normally works to keep cancer cells from accumulating, to keep cancerous changes from growing in cells. And so when that happens, she often would be at higher risk than other people of ultimately developing a cancer. It doesn't mean that she definitely will, but it means that her risk is higher. Often two to five times higher.

Monika Sharda: So what does genetic testing for breast and ovarian cancers tell us?

Dr. Kurian: So what we do when we do genetic testing is it's generally first we would need to counsel a patient about her options and if she chooses to do genetic testing it would be a blood or a saliva test where we would sequence genes that are known to be implicated in maintaining a normal cell that doesn't turn into a cancer cell. And so we know from studies over the last few decades, that in patients who are born with an abnormality in one of these genes that their cancer rate is much higher than others. And so over the last 20 years, 25 years now, starting in 1994 and 1995 we've been testing primarily for two genes: BRCA 1 and BRCA 2. But over the last 5 to 6 years we've had the ability to test for many more genes and find many more patients who have an increased risk.

Monika Sharda: Based on existing guidelines who should receive genetic testing for these cancers?

Dr. Kurian: So that's a very timely question and I'll keep it simple, but I will just say that we're in the throes of a bit of a controversy in terms of what different guidelines are saying. I'm going to give you sort of the standard set of guidelines, which is to say that for breast cancer, it tends to be based on criteria like being diagnosed at a young age which usually means being diagnosed under age 50 or under age 45. It will be based on characteristics like having an unusual type of breast cancer: triple negative, or hormone-negative breast cancer is such a kind. Or having a strong family history, relatives with breast or ovarian cancer. That's the standard most would say for who should receive breast cancer testing. For ovarian cancer, it's actually a lot simpler. For more than a decade now guidelines have said if you have the most common type of ovarian cancer—which most people if they're going to get it, do get the serous kind—you should be tested, regardless of age, regardless of family history. So it's a pretty simple message with ovarian.

Monika Sharda: Thanks for providing us with that background on genetic testing. Now let's talk about your study. What were you hoping to learn from it?

Dr. Kurian: Yeah, so this study is the first time we've been able to look across a broad population. So prior studies have looked primarily in more restricted groups of people. So maybe people who were seen at one academic center or seen maybe in one health care system or perhaps getting testing from one laboratory. And so what we were able to do in this study, with the help of many wonderful collaborators, was actually to look at every breast cancer and every ovarian cancer patient diagnosed in the state of California and the state of Georgia. So leaving nobody out, which was really important, and looking at all the genetic testing results we could get on these people from the major labs that provide such testing and so we were really interested in what I would describe as a real-world view, taking everybody into account. What do we see in terms of who gets testing and what the results show?

Monika Sharda: Did you find that there are certain age groups or races and ethnicities that are less likely to get genetic testing for these cancers?

Dr. Kurian: We certainly did and interestingly enough, it was more pronounced with ovarian cancer than breast cancer. Now the reason I thought that was surprising is that I think for more than 10 years we've had pretty simple guidelines for ovarian cancer that pretty much say anybody who has it should get tested, right. That's not a very complicated guideline. And yet we found substantial under-testing of patients with ovarian cancer. Even though all of them are supposed to be tested, fewer than one-third of them were. That's a big gap. And we found significant racial differences, with African-American women significantly less likely to get tested than white women. And a problem also with insurance, so uninsured patients were much less likely to be tested and those were gaps that we really didn't see in quite the same way for breast cancer. But very pronounced for ovarian cancer.

Monika Sharda: And why do you think these gaps exist?

Dr. Kurian: So it's a great question. I think we don't know the answer yet. If I had to speculate on that, that's what we do when we think about this, I would say that it may be that ovarian cancer patients are older on average. We know that they often are than breast cancer patients. They, unfortunately, often are sicker at diagnosis because they tend to be diagnosed at a later stage. It may be that those things are barriers to getting sort of an additional part of their care, that being genetic testing. I think it's a bit puzzling why the insurance should be such a problem because it actually traditionally has been easier to get testing covered for ovarian cancer than breast cancer again because the guidelines are simpler, but certainly for people who are underinsured or have insurance that does not work so well for them or minimal insurance, the costs certainly can be an issue even though costs have come down. So I think there are a lot of questions as to why it should be more ovarian than breast, but it's clearly a big problem.

Monika Sharda: Are there other key takeaways from your study that we haven't already discussed?

Dr. Kurian: There are, so I think a few different things. One thing that some may have considered surprising is that actually a fair amount of breast cancer patients in these states got tested. It was a quarter of patients. Some might consider that a high number because we haven't had guidelines that said the majority of breast cancer patients should be tested. That may be changing. But so I think some may say the word has gotten out reasonably well at least for genetic testing of patients with risk factors for breast cancer. And I think some other interesting facts here were the prevalence of how common genetic mutations are. We found that 8% of people tested who had breast cancer did have an important genetic finding, 15% of those with ovarian cancer. And those are significant numbers. Numbers that I think do confirm the importance of doing this. And I think those are key takeaway points.

Monika Sharda: And how can these findings from your study help us? You started to talk about this a little bit already, but what can we do to overcome these disparities that you've just mentioned?

Dr. Kurian: I think it's an excellent and really important question, and I would say like so many things sometimes shining a light on what is actually there can be powerful. So I think a study like this that looks at 77,000 patients with breast cancer and 6,000 patients with ovarian cancer, it's really a huge number, has a lot of power to show us as doctors and as patients and as a society what's actually happening. I think these numbers may be surprising to people, to see how low they are for ovarian cancer. And I think things like that tend to be motivating for those of us who have a role in this, namely oncologists and other clinicians, to redouble our efforts to get the word out in terms of ovarian cancer testing, in terms of making sure that we offer education to our patients, and we do everything possible to make it easier for our patients, particularly those with ovarian cancer or those who may be more likely to have an underserved situation either in terms of insurance or racial-ethnic discrimination or other challenges. So I think that's part of it, but I think certainly work needs to be done further to understand exactly why these gaps exist. So I've been speculating, but I think more work needs to be done really to gather data on why this is happening so that we can do something to intervene.

Monika Sharda: And is there a takeaway for patients here as well? Do you think there's something that they can be doing? You mentioned how oncologists can be more involved and aware of these disparities, but is there something that patients can be doing as well?

Dr. Kurian: Absolutely. I think certainly for anyone with ovarian cancer, ask your doctor about genetic testing. Because it really is important and it can help in terms of your treatment. And it also can help in terms of your relatives. And it's a really important thing to do. So that would be my main comment there and I think certainly breast cancer patients as well, asking your doctor about these options is an important thing to do.

Monika Sharda: Thank you for joining us today, Dr. Kurian. You've very comprehensively explained how genetic testing works, who should consider genetic testing for breast cancer and ovarian cancer and you've highlighted the key takeaways from your study. This is all really useful information for our listeners. And before I let you go can you share some resources where people can learn more about this topic?

Dr. Kurian: Absolutely. I always think Cancer.Net is a wonderful resource. I think some other great resources for genetic testing and things that patients, I think, can understand well. One of them is a group called Facing Our Risk of Cancer Empowered or FORCE. I think that can be a very good one for hereditary risk of breast and gynecologic cancers.

Monika Sharda: Thanks again, Dr. Kurian.

Dr. Kurian: Thank you so much. Really appreciate it.

ASCO: Learn more about the genetics of cancer and hereditary cancer risk at www.cancer.net/genetics. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by ASCO's Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

Monika Sharda: Hello. I'm Monika Sharda, an editor on the Cancer.Net team and your host for today's podcast. In this episode, I will be talking with two guests about how cancer patients use social media. Our first guest, Dr. Merry Jennifer Markham is a hematologist at the University of Florida in Gainesville. Welcome, Dr. Markham.

Dr. Markham: Hi. Good morning. Thanks for having me.

Monika Sharda: We also have with us Dr. Danielle Gentile, who is a researcher at Levine Cancer Institute in Charlotte, North Carolina. Hi Dr. Gentile.

Dr. Gentile: Hi Monika. Thank you for having us this morning.

Monika Sharda: My pleasure. Drs. Markham and Gentile recently published a study in the Journal of Oncology Practice that describes potential benefits and drawbacks of people with cancer using social media. Today, I'm going to discuss with them some of the findings from their study, as well as what people with cancer should know about using social media and how it can provide support.

First off, I want to know what sparked your interest in studying social media and its use for people with cancer. Dr. Markham, let's start with you.

Dr. Markham: Sure. So I have had an interest in social media for several years. And some of that stems from my own personal and professional use of social media, primarily platforms like Twitter. And one thing that I've noticed is that I've connected on Twitter with a lot of patient advocates and colleagues and sometimes people who identify themselves as patients, as well. And there's a lot of searching for information that happens, I think, on social media. So that has really stemmed my interest in exploring it further as a potential tool for patients, as well as researchers and oncologists and other health professionals, to take advantage of what's out there.

Monika Sharda: And what about you, Dr. Gentile?

Dr. Gentile: I'll echo many of the things that Dr. Markham shared. And there's ways to find so much information through social media, things that a person may not even be directly seeking. They can come across things indirectly and learn that way. So it's quite interesting to see how people are able to make connections across the country and across the world with people who are in similar situations that they are. And social media is a way to gain some social support in ways that may not be possible in person. So if a person is not feeling well from their cancer diagnosis or treatments, they can reach out online. And through Twitter or Facebook, they're able to meet others who can share in the experience with them.

Monika Sharda: So what I took away from your study is that social media can sort of be a double-edged sword. There's potential benefits for patients, but then there are also potential drawbacks. So let's start by talking about some of the pros. How can social media be helpful to patients?

Dr. Gentile: So there's a few ways that patients can use social media to their benefit. And one is that it's great for engagement and empowerment. So it provides a platform for patients to talk about their diagnoses, to search for information, digest what is happening in the world of cancer research as well. And through all of that information and connection with others, it can provide psychosocial support too. So those who are able to disclose some of their thoughts and their feelings and meet with others who share similar stories and are in the same boat, it can be helpful for them to make those connections.

Dr. Markham: I think that that source of support is really one of the invaluable pros to social media. I am a medical oncologist and see patients who have gynecologic cancers. And we live in an area where there's not a lot of in-person access to support groups. I am never offended when my patients come to me with things that they've read on the internet because, unfortunately, it really is a resource that a lot of people rely on. And I think that when my patients are able to connect on social media to other patients with similar diagnoses or similar health experiences, it really allows me to have a better conversation with that patient in the exam room. She can bring me information about what she's read or what she's heard from a friend of hers across the country. And then we can have a conversation and I can take care of her better knowing what she knows.

Dr. Gentile: So another pro coming from me from a research perspective is that social media can be a valuable recruitment tool for researchers who are looking for demographics of patients that are pretty specific. So if you imagine a rare cancer diagnosis, it can be hard to find those patients in any small geographic area. But by using social media, those groups can cluster online. So it could be a Facebook support group for a certain diagnosis and a researcher could post on that group and ask if anyone is interested in a potential research study or a trial. And so it's a way of connecting patients to opportunities to participate in research that their home oncologist and their support team may not be aware of.

Monika Sharda: Absolutely. And what are some of the cons? What should patients be cautious about when using social media?

Dr. Markham: I think one of the real risks of social media is misinformation. It's very easy for false information or altered information to spread widely on social media, either Twitter or Facebook or otherwise. And sometimes it's hard for people to distinguish what's the good information, what's a quality piece of research, or a true statement about health that can be trusted, versus what is myth and what's not to be trusted. So distinguishing between good information and reliable health information is certainly one of the risks that I do worry about with, not just patients, but with their caregivers, and, truthfully, health professionals as well.

Dr. Gentile: And another, with all of that information that patients can find online, is they're trying to decipher what's good information, what's misinformation, and what to act on. It can result in what we call information overload. And that's when a person has gathered so much information that they become overwhelmed by the amount of the information and they're not sure how to act on it. So it can lead to this feeling of paralysis or being stuck. And something that we recommend for that is always talking with the clinician. Like Dr. Markham said, she's not offended when her patients bring her information they've learned online. And that's one of the best resources to determine if information is worthy or not.

And I'll share another potential con for social media and that is privacy concerns. So pretty much anything that goes onto the internet is for public use. And folks will think about their privacy filters. Do they want only their connections to see it? Do they want it to be widely, publicly available? But one can never be sure, even with those privacy filters, that their information won't go somewhere they don't intend it to. So if a person posts on Twitter in a private group thing that they have a certain diagnosis, it can never be for certain that someone in their daily social connections might see that. So anything a person posts online, I would advise make sure that's something you feel comfortable with everyone knowing.

Monika Sharda: Going back to the idea of misinformation for a minute, you mentioned one way for it to help patients differentiate between what's worthy information and isn't is, of course, to talk with your oncologist about it. Talk with your healthcare team. Are there any other tips you can provide patients with how they can differentiate between reliable and unreliable information?

Dr. Markham: So I think looking for the source of information can be helpful. Information that's put out by American Cancer Society or by ASCO or Cancer.Net, for example, is vetted by clinicians and physicians who, I think, lend some support to that information being trustworthy. There are other sources, such as the National Cancer Institute that shares information regularly on social media. I think it's when there's an article in a non-medical journal or not one of these professional organizations that is sometimes hard to see today whether it's true or not true. And I think in those situations, it really is advisable for patients to take that information to their doctor, to ask more questions about it. I've encouraged my patients to go to certain resources online for information. And I've also encouraged them to bring me information that they want to know more about. And it's not infrequent that I have my patients come to me with things that they've seen online, whether on social media or otherwise, and it allows us to have a good conversation about what's true and what's myth.

Dr. Gentile: It can also be important to think, "What is the motivation behind whomever has posted the certain piece of information?" So if it's a reliable source, like ASCO or Dr. Markham is posting it, she is a hematologist, she is likely doing that because she wants to share the information for educational purposes and to help the lives of her patients. But there are plenty on social media who have profit motives for sharing information. So it might be some type of miracle cure where taking this product would completely take care of the cancer. And something my mom told me, is true in this situation: if it sounds too good to be true, it is. So be cautious and think about why a person might post something on social media.

Monika Sharda: Those are some really great tips. And Dr. Markham, I think it's really great how you encourage your patients to talk with you about what they've read, what they've seen on social media and really encourage that conversation instead of them trying to figure out on their own whether the information that they're seeing is worthy, is reliable. What would you say is the most effective way for patients to use social media to communicate?

Dr. Markham: So the most effective way, that's a bit of a hard question because I think there's probably multiple ways for patients to use social media. I think one reason that I like Facebook for health information, actually, is because there are a variety of groups that are closed and private that patients may discover for health information and, primarily, for support. So I think those are sometimes opportunities. The challenge of those, of course, is is there reliable information being shared. Some groups have healthcare moderators within them and some do not. So that is one of the risks of participating in a group. I think if a patient feels uncomfortable or overwhelmed, they should remove themselves from that situation.

I think on Twitter, there's an opportunity to participate around hashtags. Hashtags are terms that you can plug into Twitter using the hashtag or pound sign with a phrase behind it, such as #breastcancer. And that is a good way of sort of filtering out information that's targeted to that type of health problem. And there's a lot of communities, actually, in the Twitter space built around these hashtags for healthcare where there are routine chats that may happen. Breast cancer actually has a good advocacy group on Twitter centered around the #bcsm, which stands for breast cancer social media. And there are physicians within that community and patient advocates and patients themselves. And it's, I think, a good starting point for a patient who may be on Twitter and wants to connect with others who have similar interests or similar desires to connect.

Dr. Gentile: And I think it's also important for any patient who wants to access social media in relation to their cancer diagnosis to spend some time before they enter these platforms and ask themselves, "What are they hoping to get out of the experience?" Is their primary motivation to get social support and meet others in social support groups, or is it looking for new, reliable information? Is it a mix of the two? And then, again, checking in with oneself periodically and asking, "Am I getting what I need, what I was intending to get?" For example, Dr. Markham was saying that if a person becomes uncomfortable or they find the situation overwhelming within social media, fielding many messages, then they can just remove themselves. And one should really go at their own pace and do what makes them feel comfortable and beneficial. There's no real obligation to respond to folks if you're not finding it to be beneficial.

Monika Sharda: For someone that's not too comfortable with social media or has trouble finding relevant hashtags or Facebook groups, do you have any tips for them on how they can seek out these groups and what the relevant hashtags are for them?

Dr. Gentile: Sure. So I'd recommend that a patient get started with some platforms that they know are reliable, valid, good information sources. So, for example, Dr. Markham mentioned the #bcsm, breast cancer social media. And just starting with one hashtag or one support group on Facebook can lead a person down the line to other places to explore. So starting small and then branching out, I think, would be helpful for most cancer patients.

Dr. Markham: ASCO has some good resources, both for patients and for caregivers, I believe. There's something called Social Media 101 for Patients that ASCO has published. So that's a good starting point for people who may want to jump into social media period. Also, I think patients who are interested in finding groups may be able to reach out to their oncologist or other physicians to inquire if those physicians know of reputable groups that they could join.

What I find, though, is that a lot of the networking that my patients experience in social media has come from their online sort of word of mouth, which is a little harder to know about. Our social worker in my own clinic is sort of compiling a list of places where patients tend to congregate online so that she can point other patients in the right direction. But I think we still have a lot of work to do in this area to help really guide our patients well.

Monika Sharda: And that actually leads me to my next and final question. I was going to ask you to share some resources for patients to learn more about using social media safely and effectively. So you've already mentioned ASCO and the resources they have and also, talking to your healthcare team and your oncologist. Do you have any other resources that you can share?

Dr. Gentile: So I think those are probably two of the most important. I know that I have had patients who have reached out to organizations on social media, such as American Cancer Society and, probably, Cancer.Net may have had this experience as well, asking for information from those groups on who to recommend and how to approach things. So I think that Cancer.Net certainly has lots of good resources. But, really, I think ultimately, just conferring with a physician at the end of the day, to make sure that the space that is being found and using social media in a safe way as a patient, can be a discussion with the physician and patient together.

Monika Sharda: Right. Well, that's all of the questions I have. Is there anything that, perhaps, we didn't touch on already that you'd like to talk about?

Dr. Gentile: I'd like to say that it's going to be different for every patient or every loved one who is caring for someone with cancer, when it comes to social media. And to feel okay with taking it at your own pace. And if you find that you have a piece of information that you are unsure about, the take-home message is to share that with your healthcare team and get that checked out. And to not make big decisions on how you're going to care for yourself or your loved one solely based on a piece of information from social media.

Dr. Markham: I think that's an excellent point. And the only other thing I would add is that social media can be scary for those who are just diving in, and I don't think it necessarily has to be. It's just a matter of taking it slow, at your own pace, as Dr. Gentile said. And just testing the waters.

Monika Sharda: That's really great advice. Drs. Markham and Gentile, you've shared a lot of great tips with our listeners on using social media and provided additional resources where they can learn more about the topic. It's been a pleasure having you on this podcast. Thank you so much for joining us today.

Dr. Markham: Thank you so much for having us.

Dr. Gentile: It's been a great pleasure for me too.

ASCO: Thank you, Dr. Markham and Dr. Gentile. Find more resources on using social media at www.cancer.net. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by ASCO's Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.