Conversations About Cancer Immunotherapy: Speaking With Your Oncologist

Conversations About Cancer Immunotherapy: Speaking With Your Oncologist

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 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 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 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: 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: 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: 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: 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:
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: 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: 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: 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: 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: 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: Thank
you for the cookies in a very official way. CAROLINE OFFIT:
That’s so nice that– MICHAEL POSTOW: 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: 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: 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: 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: 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: 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: 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 B-Raf. 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 B-Raf, 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: 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 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: Thank you.

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About the Author: Oren Garnes

1 Comment

  1. Immunotherapy only works for people with melanoma and lung cancer. What about the majority of people who have kras mutation who need an effective therapy? I am glad for ppl with melanoma and lung cancer as they have a plethora of EFFECTIVE treatments that are known to put the cancer in complete remission. But what about all the other cancers?

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