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Conversations About Cancer Immunotherapy: Speaking With Your Oncologist

What are the benefits and risks of immunotherapy? What are the known side effects of immunotherapy? How soon after treatment will I experience the side effects? What is it like to participate in a clinical trial?

In this webinar for patients and caregivers, Brendan Connors, a cancer veteran, and his oncologist, Dr. Michael Postow of Memorial Sloan Kettering Cancer Center, discuss the importance of communication between patient and doctor throughout immunotherapy treatment. They address questions that are important to ask your doctor before, during, and after treatment as well as answer viewer questions.

Brendan Connors hikingBrendan Connors is an adventurer and metastatic melanoma veteran. In May 2010, he had a precancerous mole biopsied. In June, he had surgery which included two minor lymph node dissections. Later that summer, his PET scans were clear, but then around November, his scans showed metastatic melanoma. There was a tumor in his left shoulder and armpit, as well as in his right femur. After surgery, Brendan underwent two separate immunotherapy clinical trials. The first trial, which took place at the National Institutes of Health (NIH), involved infusions of his own immune cells, grown to billions of copies in the lab. The second trial, which took place at Memorial Sloan Kettering Cancer Center, was a combination of two immunotherapy drugs, ipilimumab (Yervoy®) and nivolumab (Opdivo®). These two drugs belong to a class of immunotherapies called checkpoint inhibitors that "take the brakes off" the immune system to enable a stronger attack against cancer. Among Brendan’s doctors at Memorial Sloan Kettering were Jedd D. Wolchok, M.D., Ph.D., Margaret Callahan, M.D., Ph.D., and Michael Postow, M.D. Having adventures to look forward to was crucial in Brendan cope with the emotional and physical taxes of cancer treatment. Upon turning 30 in 2013, he jumped out of a plane, ice climbed, and hiked the Grand Canyon. 

Michael Postow, M.D.Michael Postow, M.D., is a board-certified medical oncologist and part of the Melanoma and Immunotherapeutics Service at Memorial Sloan Kettering Cancer Center. He has an interest in developing clinical trials for patients with melanoma involving immunotherapeutic strategies. His specific areas of interest include studying the immunologic effects of radiotherapy and characterizing pharmacodynamic biomarkers associated with ipilimumab outcomes. Dr. Postow received his M.D. from New York University School of Medicine and completed his residency at Brigham and Women’s Hospital/Harvard Medical School and his fellowship in medical oncology at Memorial Sloan Kettering Cancer Center, where he served as Chief Fellow. He is the author of Pocket Oncology, a handbook on all aspects of oncology care.

The "Cancer Immunotherapy and You" webinar series is produced by the Cancer Research Institute. This episode is hosted by our associate director of patient engagement, Caroline Offit. The 2019 series is made possible with generous support from Bristol-Myers Squibb and Cellectis.
 
Browse our Cancer Immunotherapy and You Webinar Series playlist on YouTube or visit the Webinars page on our website to see other webinars in this series.

2019 Webinar Sponsors Bristol-Myers Squibb and Cellectis

Webinar Transcript

Caroline Offit:

Welcome to Cancer Research Institute's "Cancer, Immunotherapy and You" Patient Webinar Series. Today is Wednesday, June 19, and the title of today's webinar is "Conversations about cancer immunotherapy, speaking with your oncologist."

Before we begin, I'd like to take a moment to thank our generous sponsors who have made this webinar series possible. Bristol-Myers Squibb, with additional support from Cellectis.

My name is Caroline Offit. I'm the Associate Director of Patient Engagement here at the Cancer Research Institute, a nonprofit organization established over 65 years ago, with the mission to save more lives by funding research that aims to harness the immune system's power to conquer all cancers. This work has contributed to the development of lifesaving immunotherapies for a variety of cancer types.

We present this webinar series to patients and caregivers to help them understand what immunotherapy is and how it differs from other treatments, to provide information on the latest developments in research and treatment, as well as to connect patients to immunotherapy clinical trials. Our website at cancerresearch.org features other resources for patients and caregivers as part of CRI's Answer to Cancer educational programs.

So June is a very busy month for us here at Cancer Research Institute. June is Cancer Immunotherapy Month. We planned 30 days of educational content, including immunotherapy patient story videos, our Wear White Day social media campaign, and much, much more. And we encourage you to check it out at cancerresearch.org/June.

Before I introduce our speakers, I wanted to tell you a little bit about the Immunotherapy Patient Summit Series. Next Saturday, June 29, we'll be kicking off the summit series in San Diego. This is a free half day event where we connect patients and caregivers with immunotherapy experts to discuss the latest advances in research and treatment. Other summits are scheduled for Boston, New York City, Baltimore, and Houston. And we encourage you to go to cancerresearch.org/summit to learn more and to register.

So without further ado, I'd like to introduce today's guests. Brendan Connors and Dr. Michael Postow. A brief introduction, Brendan Connors is an adventurer and a melanoma veteran. Brendan met Dr. Postow at Memorial Sloan Kettering, located in New York City, over the summer of 2011, which was about one year after his diagnosis. At the time, Dr. Postow was actually just beginning his fellowship at Memorial Sloan Kettering. Dr. Postow cared for Brendan as he started his second immunotherapy clinical trial, combining ipilimumab, also known as Yervoy, and nivolumab, Opdivo. These two drugs belong to a class of immunotherapies called checkpoint inhibitors that take the brakes off the immune system to enable a stronger attack against cancer.

So before we begin, just a side note to all attendees. You can actually leave your questions for Brendan and Dr. Postow throughout, using our live Q&A chat feature, which is actually located to the right of your screen on a panel.You can click Q&A and leave your questions there. So without further ado, thank you Brendan and Dr. Postow for your patience during the introduction, and I'd like to begin the webinar.

So just to begin, Brendan, I'd like to invite you, just tell me a little bit about what was going on in your life at the time when you met Dr. Postow?

Brendan Connors:

Sure. So as you said, I had just finished a treatment down at NIH and NCI. And when that clinical trial was over, I had the opportunity to come up to Sloan and start the second clinical trial. So I was working with Dr. Jedd Wolchok, and he had introduced me to Dr. Postow, who was going to be taking over as the primary care while I was here at Sloan.

Caroline Offit:

So Dr. Postow, I know you've referred to Brendan as, you said a pioneer, since he was one of the first people to participate in any human study of immunotherapy to treat melanoma. So in that sense, I just want to hear a little bit about what it was like not having a rulebook, and what it was like learning about this for the first time, really, together?

Michael Postow, M.D.:

And once we get to know Brendan, we can see he's quite an adventurer, and I really use the word 'pioneer,' and I really mean that because it takes a lot of courage for Brendan, and then for any of our patients, to participate in clinical trials, because clinical trials are often the first time we're doing something for our patients.

There's a lot of strong science that supports the decisions that go into why we do certain clinical trials, and what makes sense for patients. Yet, sometimes we really don't know how successful something will be when we start, and it really is the volunteerism of patients to participate in these trials where we can really make the strides that we want to do and learn about our new treatments and how we can move the field forward.

So at the time in 2011 that I met Brendan for the first time, it was a very exciting time in melanoma treatment because there were stories emerging of how the immune system could really be helpful for patients with melanoma. And the drug that had gotten approved that year was a drug called ipilimumab. And the study that we were doing for the first time ever in patients was combining ipilimumab with another immunotherapy drug, now called nivolumab.

And Brendan was one of the first patients in that trial testing this combination of two drugs for the very first time. And that's a big responsibility for us to make sure that patients are really the right kind of patients for these types of trials, and Brendan was perfect.

We're so fortunate that he participated in that, not only number one, to help him as much as we can, which is what we always want to do for patients in trials. But also, to really learn about these treatments for all the hundreds, thousands, tens of thousands or hundreds of thousands of additional patients that benefit from these kinds of approaches moving forward.

So Brendan was quite the pioneer. And as you'll hear more about him and all of his adventures in the world, this was quite a medical adventure, I would imagine, at the time. And it takes a lot of courage, and we take that very seriously, and it means a lot to us that patients entrust their lives to us with some of these decisions.

Caroline Offit:

So before we were starting this webinar, Brendan, you were talking a little bit about your latest travels. Can you tell us a little bit more about what helped you cope, or get through treatment initially, as well as, similar to what Dr. Postow was talking about, what helped you in making this decision to join this clinical trial?

Brendan Connors:

Sure. So in terms of coping mechanisms and things like that, I made a list of 30 things to do in 30. So I wanted to do things that I normally wouldn't have done or that I would have been putting off. So I figured now is a great time to do it. So anything from ice climbing, to hiking and camping down at the bottom of the Grand Canyon, driving down the California coast, jumping out of an airplane. So a lot of things that I was just kind of like, I would do, maybe I wouldn't do, but it was a way of kind of living in the moment.

And as you're going through a lot of the different therapies and trials, you want to also just make sure that you're staying kind of normal. And that life part of just being normal and that normalcy piece was really big for me, so I wanted to continue to just live as if everything was normal.

Caroline Offit:

And I'm wondering, did you have any fears going into this clinical trial? And if so, how did you address those with Dr. Postow?

Brendan Connors:

Yeah, I mean there's definitely fears when you're going into a clinical trial because it's a clinical trial, so there isn't a lot of information on how it will come out, especially when, as Dr. Postow said, being a pioneer and being one of the first to go through the trial. You're definitely looking at what the side effects are and you're kind of talking with the doctors and the teams and figuring out what could happen, what may happen? And then what do we know? What will we learn? And just kind of being open about the entire process was really helpful, too.

Caroline Offit:

So for any patients or caregivers, advocates who might be watching this webinar, what advice would either of you give people as they're approaching these conversations with their doctors and their care teams about clinical trials? What do you think are important questions that people should be thinking about, as they consider immunotherapy?

Brendan Connors:

For me, I think it's just continue to ask questions, and also ask the questions that you don't want to know the answers to. But ask the questions that you do want to know the answers to. Because really, there's no bad question, whether it's what are the side effects? But then also, do I have to eat certain things on it? Can I exercise? Can I still work? What are just those day-to-day operational questions that you want to know. And then also understanding, like I said, what are the side effects and what are you really getting yourself into?

But then continue to ask questions kind of along the way during the process. So are there new things that are coming out? What have we learned? And where do you sit within the current process as you're going through it?

Michael Postow, M.D.:

I think those are great questions. And I think also, it's really important to understand that most clinical trials do not involve a placebo. So a lot of patients will have the thought of, well, am I really going to be getting an active drug in this, or is this going to be something where I might be randomized to something that's not an active drug to see if this is giving any kind of effect at all? There are some trials that do involve a placebo, but I think it's important that patients ask their doctor, what is the treatment that I'm going to be receiving? And why do you feel that this is the right type of treatment for me? And there are all kinds of different trials that are out there. Almost all do not involve a placebo, and most have a strong scientific rationale for being launched in the first place.

So trying to understand the scientific rationale, what actual treatment people will be getting, what is the time commitment of treatment, because some trials require a lot of visits, blood draws, sometimes biopsies, things like that. So talking with the doctor about what are you trying to learn from my experience? What am I going to have to do to participate? And why is this trial right for me?

I think those are the most important questions. And also understanding, of course, the side effects, but also what the alternative to clinical trial participation may be, because clinical trials are not the only appropriate treatment for cancer. They are often outstanding opportunities to get drugs or promising approaches that are not otherwise available. But it needs to really be incorporated in a really rigorous decision-making process about all of the available options and would a clinical trial be right for me, or maybe some standard approach is more right for me at the moment.

Caroline Offit:

And what was the conversation like between both of you before--I guess before joining the clinical trial and then actually joining it? And then also, going into the treatment itself, how did you communicate with each other throughout? I guess Dr. Postow--Brendan, you can.

Michael Postow, M.D.:

Sure.

[INTERPOSING VOICES]

Brendan Connors:

So there was a lot of pre-meetings with Dr. Postow and his team, and then also Dr. Wolchok. Just understanding kind of like, as Dr. Postow was saying, what is that process and what's next? And it was always a very open dialogue. And knowing when was the start of the trial going to be? And then what is the process along the way? So what are we looking for? What are the next steps as you go through it? And then just really continuing that open dialogue. Any time I would get tests or scans or results, Dr. Postow would always give me a call, as opposed to just kind of waiting for the upcoming appointment just to make sure, to ease any of that kind of tension of not knowing for that 24 to 48 hours after you take

[INAUDIBLE]

So it was more of that kind of that bedside manner that you get from doctors, and just understanding that they're in it as much as you're in it, because they want to make sure that you feel comfortable during the process.

Caroline Offit:

And then going into now--Dr. Postow, did you have anything else to add to the [INAUDIBLE]—

Michael Postow, M.D.:

I think Brendan captured it very, very well. Just to be very specific with Brendan's particular trial, in 2011, that's when the first immune checkpoint blocking antibody called ipilimumab was approved by the FDA. And it was approved by the FDA that spring. And that summer is when Brendan was really getting involved with our group. There was another immune checkpoint blocking antibody now called nivolumab, and it blocks something called PD-1, which there are many drugs now that are approved to block PD-1. Pembrolizumab is another one, and there are many others in that category.

And Brendan's trial was the first time patients were getting a combination of both drugs, ipilimumab and PD-1. And we knew about the proven efficacy of ipilimumab at the time, and we had been hearing how promising PD-1 was as a strategy. And so we were very excited to see how well this combination of both of these drugs worked. And so in the summer of 2011, and even a couple of years before, we had been recruiting some patients for this study. But it's really an amazing thing how well that combination ultimately worked, and we can talk probably later in the webinar what the ultimate outcomes from that trial and others have been with that type of an approach.

But to give you a little bit of a historical context, 2011 was a very exciting time because that was the time when we were really starting to see this immune checkpoint blocking antibody strategy moving forward, and we were very excited about combining them together and seeing how well they would work together.

Caroline Offit:

Before we dive into talking about treatment and side effects and everything, I'm just wondering, Brendan, what it felt like for you to be part of that team? And going back to initially talking about, did you necessarily feel like you were a pioneer at the time, joining the clinical trial? Were you aware of everything else that was going on at the time?

Brendan Connors:

Yeah. I was definitely aware of kind of knowing that I was the first. Because as you mentioned before, the rulebook. We didn't really have a rulebook with me, so we didn't really know exactly what was going to happen next. And Dr. Postow and the team was very open about that. So there was no, like, OK, well after this we know what's going to happen next. And not knowing also made it--it was interesting, and also was kind of heavy at the same time, because you knew that what you were doing was good for you, because that was the best option for me, but also knowing that the additional blood draws and everything else that I was doing was going back to research so that they could then learn more.

So Dr. Postow a few times showed me a chart, and he's, like, hey, well this, all the way down here, this is you. We're not really sure what goes next. As one of the first ones to be going through this interesting trial, we're learning great information about what happens and how these two drugs interact with each other.

Caroline Offit:

Yeah. That's so great that Dr. Postow was showing that to you. So you were able to really have a sense of where you were in the clinical trial. So I do want to talk a little bit about treatment, and especially about when you knew that immunotherapy was working, that the combination of these two drugs was working for you. And what that initial conversation looked like when you found out that it was working.

Brendan Connors:

So all of my parts of the trial were actually outpatients. So I would come in, I would do the actual process, and then I would go either back to work, I'd go play in a volleyball game. I kind of kept up that normalcy as much as I could. And then the first time we knew that it was working was really, actually after the first scans. We saw that the areas that the team was watching, they weren't increasing. They were decreasing or they were staying the same. So they knew that it was actually working then. So really, it was after the first set, I guess it would be.

Caroline Offit:

And you said that you were working throughout treatment. And I think I remember you had mentioned this before, but that was something that was important to you was being able to, as you said, continue to live your life as you normally did throughout treatment. How did you communicate that with Dr. Postow? And how did you manage any side effects, if any, throughout your treatment to allow you to continue to live your life?

Brendan Connors:

My main goal was just to continue a normal life and that reason of normalcy. Because you didn't want people to kind of worry about you. You didn't want people to do extra things that they wouldn't normally do. So I worked through all the outpatient stuff. Like I said, I was playing on a volleyball team. And I had part of my treatment and then I left, and an hour later I was playing in a volleyball game. So I wanted to stay as active as possible and just keep up with that sense of normalcy.

Caroline Offit:

And Dr. Postow, those questions that often do come up in conversations with patients about treatment, those questions of what's important to them when they're entering any type of treatment, and understanding what the side effects might be, and what the impact will be on their lives?

Michael Postow, M.D.:

Right, absolutely. Of course any diagnosis of melanoma or any other cancer is a very major life-changing event, and starting treatment also certainly is a very life-changing experience to have to now have some special treatments for that condition. So what I try to encourage patients to do is live like you don't have this problem. Now, I know that's always difficult because there's more to consider. But like Brendan was saying, as much as you can maintain a normal life and what you love to do, whether that's going to work, whether that's playing volleyball, hiking, jumping out of planes.

Whatever your hobbies are, I encourage patients to continue to do absolutely everything. And I always think that we should first plant down what we want to do in life, in terms of if we had a trip planned, or if we had some fun thing to do, or college graduation, or whatever life is all about, let's get that down first. And then we can fit in the medical stuff and the treatment around that as best as we can. So trying to be as flexible as we can with the imposition of treatment and care on top of what really is the default and the foundation, which is life as we know it, as best as we can.

So I recognize that these diagnoses and these treatments do change life completely from how it was prior to a diagnosis. But as much as patients can maintain what they love in life and continue to move forward, that's what I really love to encourage. Because that's what this is all about is living your life like this problem isn't going on. And as much as we can get into that mindset I think is a really productive thing.

Brendan Connors:

Yeah. I think it's keeping in mind that it's changing for the positive. A lot of people, when they hear cancer they think negative. But in terms of keeping that attitude positive and then thinking about, I'm not going to change anything. I'm going to continue to-- if anything I'm going to change is going to be changed in a positive way.

Michael Postow, M.D.:

And the other thing, sometimes people come up when they hear the word cancer, they kind of equate that with feeling or being sick. And many times patients won't feel sick at all. Maybe this is something that was just picked up on a CAT scan and that patients feel great-- or some little bump or lump or lymph node or something like this, and patients feel totally fine, but they may notice something's different about themselves. And I tell patients, you're not sick with this problem. Yes, there's a medical condition that needs some kind of treatment, and we talk about what those might look like.

But it's really important that cancer does not equate with sickness or illness in many cases. And people have all kinds of medical problems that they walk around with all the time-- high blood pressure, diabetes, all these kinds of things. And many of those patients won't feel sick or think themselves as sick. So as much as I can encourage patients that have been diagnosed with melanoma or many other conditions, that they're not sick. Yes, they have a medical condition that needs some treatment or not, depending on the situation. Live the life that you want to continue to live, and we will work in the treatment around it and to the best possible way so we have the best outcome.

Brendan Connors:

For me, I always pushed people away from me, like, oh, when you were sick, or oh, you're sick. And I'm like, I'm not sick. I have cancer, but I'm not sick. Just knowing that there is that difference. And like Dr. Postow said, I felt fine. There was a few times during the actual trials where they would-- it was like, how are you feeling? Is everything fine? And I'd be like, yeah, I'm sitting at work. Like, things are fine.

Michael Postow, M.D.:

And Brendan will probably tell you better than I know, but my experience with patients is people don't want to have everyone thinking of them as a patient or a cancer patient. Are you OK? What's going on?

Brendan Connors:

How are you feeling?

Michael Postow, M.D.:

Yeah. Most people, I feel fine. Think of me like I don't have anything going on, and be normal, right? I'm still the same person. Yes, I have to go for some treatments or something, just like someone taking a new medicine for some other medical problem. So I think there's a lot of demonization around this, and a lot of people are probably just well-meaning and trying to help out and be thoughtful and nice. But I would think the last thing someone with the diagnosis wants to hear about is feeling different with their peers, co-workers, family, anyone else.

Brendan Connors:

Yeah, agree.

Caroline Offit:

Yeah. Thinking we should do a webinar for oncologists on ways, like what you're saying. How do you speak to your patients? When did you learn that, or did you learn that skill of being able to deliver information in a way that doesn't make someone feel as if this is something that defines their life, when it maybe doesn't define their life at the moment. How do you manage that?

Michael Postow, M.D.:

I think it's hard to kind of point to one specific time when this was learned. But I would really say that the best teachers I have are really my patients and the experiences that they tell me. It's amazing how much I've learned about life listening to their individual life stories and how they've approached their diseases. So the way I often think about this is I'm like a sponge. I'm trying to absorb everything from everyone's experience that I work with, and then use that experience with the patients I see to try to help other people that I might be just getting to know that maybe recently diagnosed with some of these problems that need treatment.

So I think that patients are the best teachers, because every week in clinic when I see patients, I learn a little bit differently about how people think about their diagnosis and their treatment and I think that really helps. And of course, medical school, training, you learn a lot of different ways about interacting with people. But many times, this goes back to what you learned at the dinner table when you're seven years old with your parents and your family. So I give them a lot of credit for this, too. A lot of it is just kind of you just try to be a nice guy and a good person and try to think about this from the perspective of all the patients that you see.

The way that I approach this for each patient is very, very different because patients want to get something different out of their own experience. Who they are, and how they approach the disease, and how they think about the treatment and trials and all of it. And so trying to individualize that, I think, is the ultimate challenge for us, and every time it's different.

Caroline Offit:

And just thinking about the family dinner table, I'm just remembering, Brendan, you were sharing some stories about how your family would often come with you to some of your appointments, especially earlier-- probably earlier on, because now this would be, what, eight years ago now? I'd love to hear a little bit about that.

Brendan Connors:

Sure. My mom will tell you, it doesn't matter how old you get, you're always their little boy kind of thing. And my parents would come to Sloan, and they kind of became these local celebrities at Sloan. Everyone was, I think, sometimes more excited to see them than they were to see me.

But they would come to the appointments because they wanted to, obviously, know what was going on. They wanted to learn how the treatments were going, and they wanted to ask a ton of questions. And then my mom wanted to make sure that everyone-- that she was thanking everyone. It wasn't just the doctors and the nurses, but it was the staff, it was the receptionist. So she wouldn't lug buckets and buckets of freshly made chocolate chip cookies into the office, and she would go around like she was Santa Claus and she would hand them out to people if they knew me, if they didn't know me. So it got to this, is it every six months now that they're coming, is it every year?

But we also made it into more of kind of like a family kind of discussion. And it wasn't just me going through it, it was also my entire immediate family. But they liked coming here because they also liked understanding where is the process of immunotherapy going and what's new. But they also liked to see Dr. Postow and the team as well.

Michael Postow, M.D.:

And his mom makes really good cookies, too. So every time he was on the schedule, people would wonder if the cookies were coming, too, as part of the visit.

Brendan Connors:

And I'm sure she's watching right now and she's probably going to the kitchen to start making cookies, and she'll probably be mailing them in to Dr. Postow tomorrow.

Michael Postow, M.D.:

Thank you for the cookies in a very official way.

Caroline Offit:

That's so nice that--

Michael Postow, M.D.:

We really appreciate the gratitude there. And I think Brendan said it best, this is not an individual sport. This is a team sport, going through something like this. And as many people can help out is great, whether it's families, friends, whoever is part of an individual support network. A lot of patients feel that they don't want to trouble someone or bother somebody about what's going on, or I don't want to bother this or that person to give me a ride here and there. But I found that most people are really very happy to help support patients going through treatment with these diagnoses.

So I encourage patients to try to call upon people that can be helpful in your support network, whether it's parents, it's kids, it's siblings, it's other family members, other friends, other co-workers. I've had all kinds of people coming in, even police officers, for example. Other police officers, part of their group will come in and support each other. So use those people in your life, because those people that you call upon I think actually are honored when you call upon them to help out with something if you need it.

Brendan Connors:

Yeah. I think also, too, that having people in those meetings where they might ask a question that you might not have thought of, and it kind of furthers that conversation. Everyone's learning at the same time.

Caroline Offit:

And I have just a couple more questions before we'll get some questions from the audience, too. But I'm also wondering, so you met in 2011. So that was eight years ago already. And I know that your communication has obviously changed over the years. And I would just like to hear a little bit more about that, how your communication style has changed. How often you're in touch, and how often you see each other now for, I guess, once or twice a year for checkups. Where are we now.

Brendan Connors:

I started, it was once every three months. And then as I kind of passed different milestones it went to every six months. I think we skipped nine, maybe, then went to every 12 months. So that's where we're at now, which is once a year where we'll see each other. I'll do a chest, abdomen and pelvis scan with some contrast. And then I'll come in the following day. It's more as everything continues to go well, it's more of kind of just a friendly type of catch-up, where we'll catch-up on each other's lives, and we'll kind of catch-up on each other. We'll go through, obviously, what the results are, and where things currently stand. But it's more about just where we are. I mean, it happens to be right after we both-- Dr. Postow got engaged. I think I saw him right after that. Right after I got engaged, he got married, I got married. And then we ended up seeing each other right after all of those milestones. Right after Dr. Postow had a baby, we were in, I think, a month after that. So it's been more kind of lifestyle type of updates for us, outside of just what was going on medically as well. So it's kind of morphed into a combination of both.

Michael Postow, M.D.:

I think that's important for doctors to realize, that patients often don't want to only come in to a visit and talk about melanoma or whatever cancer they have 100% percent of the time. Because of course, that's a very big part of this, and I think that's important, obviously, to have that medical information transmitted, depending on the situation at hand. But I think it's really important to get to know somebody as a person, because as a physician, you can be a much better physician and you can make better medical decisions if you know someone personally better. And I think that's one of the fun things about being a doctor, really, too, is that this isn't all about textbooks and science and all the details of the medical part of this. This is about knowing people as human beings and understanding what they like and don't like, and what they want to do and what they don't want to do, and how they think about their disease. And so I think one of the most fun things for me is to get to know people as people, which is who they really are. And then as time has gone on, you get to know people incredibly well, and you see all kinds of things and life events. You get to know the families. And so Brendan and I have had that really great relationship over-- it's hard to believe, eight years.

Brendan Connors:

I know.

Michael Postow, M.D.:

And we both got married. Had a baby last year. All kinds of things have happened in our lives. So that's what most of the visit is at this point, catching up on social life. Thankfully, we haven't had much from a melanoma perspective to talk about. But even if there is a lot of melanoma to discuss, or whatever cancer patients are having, or a lot of details about a clinical trial, I would encourage patients to still try to get to know your doctor on a personal level, and I'm hoping that that goes both ways, from physicians, too. And having comfort with your doctor and who's taking care of you in the care team on a person-to-person level. It's so critical with these types of issues.

Brendan Connors:

And I think it's even great, too, because some of those conversations we'll talk about immunotherapy as a whole. So we'll talk about when the former Vice President Biden was talking about moonshot, you know, what does that mean? What Sean Parker is doing and what does that mean? Dr. Allison just won the Nobel Prize for immunotherapies. We've talked about that. So it's more just me also understanding more about immunotherapy than I did. And then also just getting first-hand knowledge from what his team is also researching and discussing, too.

Michael Postow, M.D.:

And a lot of patients are very curious about that, and I would encourage the patients that are out there that are on trials, and even that aren't on trials, to ask their doctors what's new in the field from whatever someone's going through? What are you learning about the trial I'm in? What's the next trial that's being planned? What are you working on yourself as a physician? What's the latest? What's going on in the group here at whatever hospital, xyz, that you're getting your care? So those kinds of inquisitive questions are really great, and patients can find that those give them a lot of information that's very helpful. I don't want patients to feel obliged to have to do that. Many people don't want to know those details, and that's fine, too. If you want to say, just tell me what I need to do. That's fine, too. But I think there's this whole other dimension of that plays out over time. And I would at least encourage some comfort in patients to feel comfortable asking about that, because my experience is most doctors are very willing to talk about that.

Caroline Offit:

It's interesting to, especially just going back whole circle to the beginning of the conversation about having no rulebook. And especially hearing about people's experiences with immunotherapy, it is often a time, and especially, obviously, with clinical trials where you're learning about this together, and being able to recognize that the outcome is unknown. And that experience, it is a very human experience together, being able to talk about that and understand it together. Whereas, our standard way of thinking about a doctor might be as more authoritative figure. So it is interesting how immunotherapy treatment in and of itself might even, by necessity, break down those maybe walls or barriers that might be there for some other types of treatment.

So with that, I just want to invite you, if there's anything else that-- we just have a few minutes left in the webinar. If there's anything else that we didn't talk about, especially about communicating with each other throughout treatment, or anything that you wanted to discuss, I just wanted to invite either of you to say anything else about communicating throughout treatment.

Brendan Connors:

I mean, in terms of the communication, Dr. Postow has my cell phone number and my personal email. So if there's any time that he needs to get in touch with me or I need to get in touch with him, it's real easy. And then even just going through what Sloan has here, which is their normal system, I can email his team and they'll get back to me rather quickly, in terms of if I just have a question on something, or whether it was trial-related, or just in general, just rebooking some meetings and stuff like that. But it's always been very quick and very prompt.

Michael Postow, M.D.:

It's important, talking from a patient's perspective, about how do they like to hear from the hospital or clinic, and understanding how communication works best. Because it's really important for patients that are undergoing treatment, especially the treatment that may have side effects, to feel that the threshold for communication is very low. Meaning, communicate about anything and everything. Don't worry about bothering the doctor about something or bothering the nurse about something.

It's much better with immunotherapy trials especially, given the potential for side effects, to tell the team that's taking care of you with the immunotherapy treatment, absolutely everything that's going on, even if you might not think it's such a big deal. Because they may know that if they can help with that side effect when it's not a big deal, it can help prevent it from becoming a much bigger deal. So being forthcoming on the patient side to feel comfortable communicating and letting the doctors and nurses know what's going on with them, that's very, very encouraged. And then making sure you just feel comfortable communicating with the health care team, whatever that modality is.

And it's been interesting in our practice. In 2011 when we started, most of the communications was by telephone, which is what happened in 2011. But now in this world of text messaging, emailing, portal messages, at least at our institution at Sloan Kettering we have a patient portal. So it really, I think, is a great way to send messages in by typing, because it fits better with the way many people communicate today, by text or email, anyways. And a lot of patients find that helpful to get a portal message reply because it will outline some of the aspects in a written form, which might be easier to retain and think about than sometimes could be addressed on a phone call. Although, sometimes, of course, for urgent symptom management, it is better to speak to somebody by phone one-on-one.

I think the way that we communicate with our health care team is evolving and will continue to evolve as technology improves. Facetime, all these new kinds of applications I think are a very interesting way that communication barriers are being broken down. So hopefully, there'll be some new ways of even enhancing this as we move forward with new technology.

Brendan Connors:

We haven't Facetimed yet. Maybe that's next.

Caroline Offit:

Actually, one of the questions from the audience was about the preferred method of communication, whether it's text or email. But it sounds like you're really able to use each of those levels of communication, depending on what the question is.

Michael Postow, M.D.:

It depends on the situation. For urgent symptoms, I tell patients personally it's better for them to call the office to make sure that they know they get someone on the phone right away to help out with what's going on. So I don't like portal messages coming into the office that someone's having shortness of breath or cough or some other concerning symptom because we need to know right away about some of those. So I encourage calling in those kinds of situations. And then every doctor's office is different in terms of how they like to hear about other non-urgent issues, whether calling or portal messaging or other things that are important. That's great. There are some patient privacy issues with using personal cell phones and email to communicate with patients.

So that is something that patients need to talk about with their doctors and their care teams about whether that's a way that the doctors like to communicate or not, depending on some technological privacy issues. We all get millions of emails. Personally, I would be afraid about missing emails from patients about important issues if they were coming through my general email box, because it's overwhelming, and sometimes it's hard to go through them and make sure I'm not going to miss something. So that's why at Sloan Kettering we look at our patient portal separately. So it's a way to separate the patient information in a more protected and safe and secure way so that that's able to be ensured that it's not missed in the deluge of all the other communication. So all these kinds of things are important. There's no right or wrong way for every patient and their care team, but establishing what that is for that relationship is important.

Brendan Connors:

I think it's just a conversation with your doctor and the team to figure out what's best for you.

Caroline Offit:

So just final closing thoughts. I wanted to see what it was like for both of you-- again, especially since it's been eight years, over eight years since your diagnosis. What has it been like for both of you seeing these immunotherapy treatments move so quickly from the lab into the clinic? So Dr. Postow, if you would like to-- especially from the beginning of your fellowship at Memorial to the present, so much has happened.

Michael Postow, M.D.:

Sure. So I felt that I grew up with Brendan, actually, really. Because I started at Sloan Kettering in 2010, and I was working with Dr. Wolchok and other members of the melanoma group at the time. They were my research mentors. And that was the time when in melanoma, we were really first discovering the powers of the immune system. And also, the whole story of targeted therapy against mutations in a protein called BRAF. That's a bit of a different story, so I won't elaborate on that. But it was a very big exciting situation for both the genetically-targeted therapy for BRAF, and also for immune therapy in 2011. So as I transitioned out of my first year at Sloan in 2010 to 2011, I said, I want to be part of this melanoma explosion of all these new treatments and all this exciting stuff.

Brendan Connors:

And they said, we got a person for you.

Michael Postow, M.D.:

That's right. And they said, all right, well join the melanoma team. And so I'm very grateful that I was able to join the melanoma team in early 2011 and try to be part of this emerging story of immunotherapy. As I got to know Brendan through the course of 2011 and we were testing this drug combination for the very first time, it's amazing how well, not only have helped people like Brendan, but there were many other patients that really were being helped also. And because of the successes from the study that Brendan was in, that led to another trial, and another trial, and another trial. And now, these kinds of immunotherapy approaches are approved in many different kinds of cancers and many different kinds of situations, not only the combination that Brendan had taken, but these drugs as single drugs in many different situations.

So it's kind of cool to see that the seed that was planted so long ago has now turned into this amazing tree, and we're still kind of picking the apples off of this tree in all kinds of different ways. It's bearing a lot of fruit, and it's very cool to have been part of Brendan's care, and know, I would imagine, not only that we helped Brendan, but also so many other people with the development of this treatment. But to remember that even though there have been a lot of successes in the field of melanoma and many other cancers with immunotherapy, we can't pat ourselves on the back and clap and be happy about it. We can be happy about it, but we can't be happy enough about it until absolutely everyone had the benefit like this. And that inspires us every day to come to work just as diligently as we did in 2010, 2011 when we didn't have all these good treatments. But to know that it's not enough that a lot of people have this benefit. It's not going to be enough until everyone has this benefit.

So we're kind of trying all different types of approaches now, different trials, different combinations of immunotherapy drugs, different ways of giving the immunotherapy drugs that Brendan had gotten. And that's our current trial landscape, and we're always grateful for patients that wish to participate in some of those trials, because we can't resting until we make it better for everybody.

Caroline Offit:

Well, thank you both so much. I know you might have a few more questions from the audience, but I encourage you to continue to send those questions as I wrap-up. And we will do, CRI will do our best to address them after the webinar. Once again, thank you both so much for participating in today's webinar.

We just wanted to share a few more patient education programs here at the Cancer Research Institute. So for more information about our webinars, additional resources we have for patients and caregivers, as part of CRI's answer to cancer educational programs, we encourage you to check out cancerresearch.org/patients. Here, you can read or watch stories shared by others who have received immunotherapy treatment for cancer. You can register for one of our immunotherapy patient summits, browse our entire library of past webinars, access information and other resources, including treatment, emotional support, and financial assistance, and find help locating immunotherapy clinical trials.

And finally, I'd like to, once again, thank our generous sponsors for making this webinar possible, Bristol-Myers Squibb, with additional support from Cellectis. So once again, thank you both so much for taking the time today to speak with us at Cancer Research Institute. I hope you have a lovely rest of your week, and a good cancer immunotherapy month. Thank you.

Brendan Connors:

Thanks.

Michael Postow, M.D.:

Thank you.

*Immunotherapy results may vary from patient to patient.

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