Cancer Patient Perspectives Panel at 2019 CRI Immunotherapy Patient Summit in NYC


– We’re going to start with you, Tara. Why don’t you first introduce yourself and let folks here know who you are and what type of cancer
you have experienced. – Well, before cancer I
thought I was a normal person. I have had advanced metastatic melanoma. I’ve had 13 tumors 12 metastasized in my neck and brain. I had cancer for 18 months
before a treatment existed for me other than surgery. (sighs) I have been through a lot. Wow, I don’t even know
where to go from there. – Well, let’s go to Oswald then. – I’m very excited to
be here for you today. – We’ll come back, we’re going to get to hear so much about it. Oswald, tell us who you are and what type of cancer you were diagnosed with. – Hi, good afternoon. My name is Oswald Peterson. In 2017, I was diagnosed
with a very advanced form of stage four lung cancer. I was at Columbia Presbyterian and the doctors introduced me to the immunotherapy that
quickly turned me around. It was a lifesaver, because at that time having been a caregiver to my mother who also passed of cancer I knew at stage four advanced lung that my time was kind of limited. The cancer had spread to my spine. I had cancerous nodules in my
chest, blood clots in my back fluid on my lungs, fluid in my heart. My whole left lung was basically a cancer. When they did the x-rays it
looked like I had one lung. – That’s crazy. Dorothy.
(audience clapping) – First, I should say that the reason why I’m lame has nothing
to do with the cancer. I was struck by a car a year ago June and I’ve had two and a
half operations since then. I’ve had a knee replacement. So had nothing to do with my treatment. In March of this year, only March I was diagnosed with esophageal cancer. My first symptom was difficulty
swallowing a big pill a capsule, high-strength fish oil which I had been taking for 20 years. And it suddenly lodged in
my throat, or my gullet. And it was terrifying. I thought I was having a heart attack. This was only in mid-March. I was treated with immunotherapy
here at Perlmutter. This treatment was concurrent
with chemo and radiation. – In August, just a five-month span I was deemed by endoscopy
and also by way of biopsy to be free of cancer. It was serious enough
when it was diagnosed. The esophagus has layers
four of them I understand and my tumor had progressed
to the fourth layer. What I had going for me from the beginning was that it hadn’t pierced through into the surrounding areas so it didn’t infect, for
example, the lymph system. But it seems remarkable to me that it was a five-month span. It’s astonishing. I still find it astonishing
to look back over it. – So the two of you got this diagnosis got this weird thing called immunotherapy maybe you never heard of before
and then within months… – Yeah. – Well, for me, my
turnaround was really quick. I was in the hospital
for about three months. I left the hospital in March. When I left the hospital I had lost somewhere like about 45, almost 50 pounds. I left the hospital. They gave me an oxygen tank. They delivered the oxygen
machine to my house and I was like, “Okay, wow.
This is my new normal.” But I got back into the gym, and literally within a month I gained back 40 pounds. I went from not being able to walk across the room without losing my breath to doing an hour on the
elliptical and the step machine. So my turnaround was
really, really dramatic and really quick. – Yeah, let’s give that… I mean, that’s fantastic. Now, Tara, that’s
completely different from… Your journey was a lot longer there. Should be on. – Can you hear me? – Hold it up to your mouth. – Can you hear me? – Yeah. – Yeah, I’ve had four massive surgeries including brain surgery. And in 2016, I actually had brain surgery and another seven-hour surgery six weeks apart, not having any idea I was going to have that second surgery. I also had seizures for eight months. It’s really funny because
we have so much fear. I always try to look at everything from okay, what’s positive about today? When cancer metastasized to my brain I then became eligible for
the treatment that I wanted. And I was actually saying
“Thank you brain cancer” because it was the first time I was actually able to have treatment and that’s actually how I
started on immunotherapy. And I want to share with you that today this month, September
is different than theirs. This month is my 35th
month on immunotherapy. (audience clapping) As of July, after all of that
whole incredible experience as of July, my scan’s
showing up no tumors. – That’s amazing.
(audience clapping) – It’s actually been so huge for me that I was afraid to even tell anybody because it’s been just as shocking for me in the last six weeks as
it was when I was diagnosed stage three and stage four. – Wow, you know, I’ve
heard from other patients who are receiving immunotherapy that their co-workers and
friends may not even know that they’re facing cancer
or undergoing treatment. In fact, friends will say
to them when they find out “You don’t look like you have cancer.” It’s a completely different experience. When did you first hear
about immunotherapy and how was it explained to you? – Well, I first heard about
immunotherapy the first year in 2015, when they first
found the initial site which my hairdresser found
on the top of my head. And I had no symptoms. I had surgery. And all the margins came back clear so I was considered cancer free. But my doctors did tell me at that time because they have to tell you the facts and the information, they did tell me first of all, that if it did return that I would have a 25% chance of survival and probably five years to live. And they did tell me that there
was very progressive success happening in short-term trials for melanoma with immunotherapy. So they were giving me something
hopeful to look forward to. My margins did come back clear. I was considered cancer free. And then exactly a year
later it metastasized. And that really, in my brain
is when my journey began. – How did they explain
immunotherapy to you? Did it make sense to you right away? Did you care? Some people are like, “Whatever. “Just give me what you think
is going to work, doc.” – Well, I was initially told
that chemo and radiation was not an option for melanoma that it was really at this
point used as a last resort. I will be honest, I’m really happy I didn’t have to make that decision. I have become a cancer patient advocate and I’m very clear with anybody who is or has been on chemo that that is not a decision that I had to make. That’s not an experience I have had. But I knew that it would
boost my immune system. I knew that it would help my immune system help itself and help to fight the cancer. Not knowing I was going to have as many surgeries as I did. I don’t know. I wanted to be cancer free. – Oswald, when you first heard
that word “immunotherapy” what did you think? Did you have any questions or how was it described to you? – The strange thing about it I think that when you receive so much information like that so many words are being thrown
at you, few of them stick. So I was kind of looking for the buzzwords every time they came in. I was waiting to hear about chemo or waiting to hear about radiation. So when they said “immunotherapy” it was something so new to me that I don’t think it really stuck until they started to explain
that this was something new that was specifically made
for my type of cancer. So for me, it was totally something that I had never heard of before and especially just the prior year I was a caregiver to my mother who had to go through the chemo and the radiation for her form of cancer. So I was expecting that was going to be the next course of action
that would be taken with me. So when they announced that
they were going to be using something new on me, the immunotherapy I was just like she was. “You know what? “At this point in time
what do I have to lose? “Let’s just try it and see what happens.” But it was definitely something I had never heard about before never even seen anything
about it online or anything. So it was definitely something new. But I’m so grateful that
I had the opportunity to be introduced to it because
it really did change my life. – Of course, now lung
cancer is one of the cancers that’s seen one of the most
success, along with melanoma in treatment with immunotherapy. Dorothy, when you heard
the word “immunotherapy” what went through your mind? – Well, I didn’t exercise any
judgment at all in advance. – Can you hold the mic to your mouth? – Oh, I didn’t judge it at all
in advance or have any views. I just thought I will give myself my best chance and take what’s on offer. So it wasn’t a very educated approach but I didn’t have any difficulty with it. When I was diagnosed
my nephew who’s a doctor at Kings County, not in
this specialty at all; he’s an epidemiologist, he
asked advice of a colleague and that colleague
recommended Perlmutter here and in fact, a very
specific oncologist here. I just followed orders. (audience laughing) And immediately, I think on
my first interview with her she did accept me as a patient and I suppose my nephew
smoothed the way, I’m not sure. But she also asked me if I
wanted to be in a study of… I’m not even sure if I heard immunology. I was a bit shocked, because
there had never been cancer in my family, not at all. I feel like this is one
thing I’m not going to have. My family is given to heart
disease and eye diseases never a hint of cancer anywhere. Although, I’m 86 years old so I’m in that cohort where cancer… (audience clapping) Any mention of cancer
is kind of tamped down. But also in that age group cancer to me was a death
sentence, you know? So I had no difficulty in
accepting what was offered. It was begun immediately. In fact, it was begun before… Oh, I should say that my oncologist recommended chemo and radiation together. And this experimental
drug is called Opdivo. So I was given that alone
Opdivo alone for a month. This would be the month of April. And in fact, this tumor
shrank during that month. Whereas I believe Opdivo is intended to be taken in concert
with chemo and radiation as a supportive drug. But it helped me right off the bat and then it was continued
through the next month. – It sometimes is given alone but as I mentioned earlier
sometimes it’s combined. So you are the only one up here actually who participated
in a clinical trial I believe, right, for a immunotherapy? And your trial was specifically designed to have the immunotherapy then plus the chemo and the radiation. Now, you told me something
really funny on the phone. There was a member of your family who was upset about something. Why don’t you share that story? – Oh, yes, well, it was
he, it was my nephew. He’s sort of the family medical advisor and he’s never steered us wrong so I was going to listen to him. But he wanted the chemo and
radiation done immediately. He’s kind of achtung type of person. He didn’t like the idea of a month going by with the immunotherapy. But when it had such a good effect he had no crank coming in here. (audience laughing) – He wondered, I thought you said “Why aren’t you getting the
real treatment first”, right? – Yeah, He’s wanted that to
be really convinced instantly. He, himself, was being
guided by his colleague who is an oncologist. It still astounds me looking back how brief this interval was from March through the ninth of August. – Right, the thing is, everyone responds or doesn’t respond
differently to immunotherapy and in a different time table. So it’s really amazing
that the both of you had quick responses like that. As Tara said, she’s been
receiving it for a while now. – 35 months, almost three years. – Did you have any fears
about going into the trial? It sounds like you were just “I’m just going to do it”, right? – No, no, I didn’t. I was a bit pessimistic. I thought, as I said, I thought I’ll get my affairs in order which for me meant shredding some old income taxes or something. (audience laughing) I just had to brace myself for the worst and I’m sort of surprised
that I got the best. – So Tara, you had a lot of experience unfortunately, with the cancer really never going away or coming back. When did you know that
immunotherapy was doing the trick? – I do want to share that I am
actually in a clinical trial but it is not immunotherapy. In the trial that I am in that was actually my first option I was chosen actually for
surgery instead of treatment. But I am in that trial. So I had two surgeries back to back September and October of 2016. And then I started in
November, immunotherapy. And in January, I actually
had three more tumors grow. And we did know from the very beginning of my journey that all of my
tumors were very aggressive. Every single one of
them grew very quickly. So, believe it or not, we
were all very calm about it. My surgeon had been very
successful in my surgery. I actually had six tumors
removed out of my neck. Again, these tumors appeared in my neck so I knew he could go in
there again if he had to. But we also knew that Keytruda will present itself in
three to four months whether it’s probably going to work for you or whether it’s
going to be helpful and help to decrease the tumors. So we were only two months in. So I went to see my surgeon. I went to see my oncologist. We all talked about it. We decided to be calm. And two months later in March, my tumors had shrunk. So that was a huge, huge, huge celebration for me and a turning point for me. That’s when I really felt like “Oh my god, I am going to beat this.” Because up until that point nothing had worked except for surgery. – Did your other symptoms, the seizures did those start to go away also? Had those already disappeared? – No, I was still having seizures. For one, a seizure is how
they found the brain tumors. I had three small brain tumors. Then I had emergency surgery. I had seizures again
a couple months later and then again a few months after that. At that point I learned that
when you have brain surgery you can also continue to have
seizures, they do not know. So it took us time to acclimate come up with a good
dosage that worked for me. That took eight months. May of 2017, I had four seizures and ended up in a coma
and on life support. My poor son, who is in the audience today with his girlfriend, and
are my rocks, were there. I feel sorry for them
because they’re the ones who saw me when I was in this state. I don’t have any memory
of having seizures. They were told that I
probably wouldn’t make it and that if I did I probably would have serious brain damage. So I call myself a cancer hope coach and my mission is to give hope to as many cancer patients as I can. I have people call me
from all over the country now who hear about my story and I hope I give you as much hope today because I have been through a lot. And I am tumor-free, and
I am becoming healthy and I am overcoming this. And I also want to say that I am offended by the word “survivor” and I don’t want anyone else
to be offended by that word but I am offended by that word. I don’t want to be a
survivor; I want to thrive. (audience clapping) – I think you also don’t want to get hit by a bus like (murmurs). Let’s just be clear about that. Now, what about the two of you? Oswald, start with you. Did you have any
immunotherapy side effects or side effects that your doctors told you were a result
of the immunotherapy? – Well, I remember
initially, they were saying that one of the things
about an immunotherapy is that you can become allergic to things that you might not have
been allergic to before. So my only side effect in that regard was I had a skincare
product that I used to use. I used it one time after immunotherapy and my face blew up the size of a football and my skin peeled, but afterwards my skin looked really good. (audience laughing) I mean, for months, my
people were asking me “What are you using on your skin?” And, I’m like, “Immunotherapy.” (audience laughing) That was really the only
side effect that I saw. Besides that, there was a
little dip in my neutrophils. – A type of immune cell. – Right, there was a little dip in that but not enough to where
the doctors were concerned. And being that it was something they had never looked at before they think it might have
been low to begin with that the immunotherapy itself might not have been the cause it was just something noticed
because of the immunotherapy. But besides that my side
effects were literally nothing. And the same result happened. When they initially told me about it it wasn’t something that… Because it was so new at the time that I initially received it that was supposed to
make the cancer shrink. It wasn’t supposed to make it go away. So when the first scan came back my doctor didn’t even want
to tell me the results because she wanted something
else to benchmark it by. So when the first results came back she saw the shrinkage, the
next scan she then told me “You know what, it’s shrinking.” She said, “I don’t know how.” And then finally when she said “You know what? “I don’t know what else to say
but cancer free,” she said “But you have no sign of it.” So the only side effect I had was the side effect with the
skincare item, and that was it. – Dorothy, before I get your answer you bring up a good point. I’m not sure if the experts
earlier today brought this up but there’s this thing
called pseudoprogression. So you’re talking about
scans where your tumor is shrinking and that’s
how you know it’s working. But there’s this thing
where as your immune cells infiltrate the tumor
in killing the tumor it can still appear on scans
as if there’s some mass there. It’s only with a biopsy
that your doctor will know if it’s really a tumor or
if it’s just the remnant at the battleground. So I just wanted to
put that out there to– – With that being said
just a quick regression when they initially had
drained the fluid from my lungs and my heart due to the cancer they had said that most likely
those fluids will come back. So they did set up appointments for it to be drained at a later date. But the immunotherapy
started working so quickly that I got the first
dose of immunotherapy and the drainage was tentatively scheduled for like two weeks after that. When they went to check for the fluid they realized the fluid hadn’t come back. And that was the first time the immunotherapy had started to work. – Wow, and Dorothy, now
the side effect question. – The side effects. I was mercifully free of
side effects for a long time. I told you that the month of May was my month for immunotherapy solely. And I had no side effects. Then the month of June commenced and for the first half I was wonderful. I just live down the road
here in Stuyvesant Town so I’d walk back and forth to Perlmutter every day to get some exercises. Of course, the physical therapy for my knee had to cease
when the cancer struck so I was glad to have the exercise. But mid-month, that would
be halfway through the month of getting all three, I was struck by I guess you’d call it anorexia
complete loss of appetite. Not only loss of appetite. That doesn’t begin to describe it. Food and drink, even
water, became repugnant. We blame it I think on the radiation not on the immunotherapy but it was a serious enough symptom. I never had nausea. I never had pain. But this other was terrific because I resisted taking
anything in at all. The dietician who was part of the team the Perlmutter team, told me
“You’re in starvation mode. “You simply have to take
in some food and drink.” I was, in fact, hospitalized
for a couple of days for blood transfusions
and I had to come daily to Perlmutter for hydration, to get water. And my daughter, who she’s
a teacher up in Syracuse she came down to be with me. For six weeks, she essentially functioned as a private duty nurse. She was wonderful. She was at her wit’s end. The dietician was at her wit’s end. They treated me the way you treat a child. You maybe sneak some egg
with spinach or something. But I wasn’t being difficult it was impossible to take anything in. So, that lasted for a good month. It was explained that
radiation zaps the taste buds. They revive over time. But in the meantime apparently there’s nothing
to be done about it except fight it. It was touch and go, it really was. It was odd symptom. I had appetite but I couldn’t tolerate
food or drink of any kind. – Yeah, and it’s not one that you commonly hear associated
with immunotherapy, so– – It was probably radiation.
– That could well be. Now, among the three of you you received two different
types of immunotherapy both targeting basically
the same receptor, PD-1. Dr. Velcheti showed us earlier that that’s that breaking mechanism that the immune system uses to know “Okay, I don’t need to
eat you or destroy you.” And now sometimes being tested for these prior to receiving these treatments has become part of the practice I think maybe just for
lung cancer right now. Did they have to screen you first to see if your tumors express
something called PDL-1 which is the corresponding– – I did hear that phrase. That was one of those lots of numbers and things that were
coming at me at one time. I did hear that phrase but I think they made that
determination after the biopsy. – Yes, they would need to actually look at your tumor and see is
your tumor expressing this. – I believe what they
said was after the biopsy that they’ve realized I
was the perfect candidate for it because I did have the PDL-1 and I had a count of something
else that was over 30 or something like that that made me a perfect candidate for it. – I see, okay. – I don’t even know know
how to say that properly. PD and PDL-1? – PDL-1. – I also have the BRAF mutation. – And was that a requirement for you to receive the immunotherapy? – I believe it was, yes. That’s why I was eligible.
– So these are those eligibility, whether it’s a clinical trial or even standard of care– – Actually, I have the BRAF mutation. And the fact that it
metastasized to my brain and was melanoma, I think
those were the three factors that made me eligible. – Trifecta, right? (Oswald laughing) – I also do want to share
that I do have side effect but nothing major. It makes me tired. In the beginning, when I first
started the immunotherapy the first several times
that I had treatment from the moment I started the
drip to the end of the drip which is a half hour, I
literally was a normal person and at the end of the drip
could barely speak words. I was so tired. I actually do drive myself to treatment. I drive, I live in upstate New York. I would just go get a cup of coffee and sit in the cafeteria until I could gather myself together. I only lived a few miles away. But as time has gone on and because I have been in
treatment for 35 months my body has acclimated to it
and that actually went away. There reached a point where I was I think about five months
later or six months later and I was receiving my treatment and I looked at my nurse and I said “Did you put water in that today? “Because I’m not feeling anything.” I no longer have that same experience but I do usually have to nap
afterwards when I get home. – All right, well, let’s switch gears. We’re almost out of time. So, let’s talk about some
of the practical things of receiving treatment. Were there any financial any things you might want to
advise others in the audience “You might not think of this
when you’re about to do this “but actually you might
want to keep this in mind.” Tara, why don’t you start with that. – Well, I had serious financial issues. My dad had just died of
lung cancer actually and I took off nine weeks to
go and take care of my dad. I actually had tumors up
here on the back of my neck while I was taking care of my dad. So I came back home and
literally had biopsies and found out I had stage three cancer. It was very shocking. I didn’t have money. I was broke. I knew I had to really act
very wisely and very quickly. My boyfriend just broke up with me. I lost my house. My symptoms progressed so quickly. I lost my income. I was in a really bad place. So I think for me it was an advantage that I had had cancer the year
before and knew the facts. So it gave me some preparation. I went online, I created a GoFundMe. I posted it, and I kept posting it. I do have a very large friend base. I’m very involved in the
community for a long time. But I actually raised
$8,000 in the first month and I raised $26,000 total which actually helped me pay my rent for a year and a half. Social media is my friend. (audience clapping) – So would you say, in
addition to your A-team which sounds like your son Rigel was that A-team rock for
you, if you have that as Mary Elizabeth said “think creatively about
your broader circles “of people and don’t be
afraid to ask for help” and that’s what you did basically, right? Yeah, don’t be afraid
because this is your life and only you can really save it. And also tap into your
local cancer support center because there are lots of
programs that you can apply for. And only they really
know what those programs are that exist. And you can sit with them
based on your situation and they can really guide you. My local cancer support
center has just been yay. Thank you, they’re amazing. – Oswald, if there’s one
thing you could tell yourself then that you know now, what
do you think it would be? – I would have to say
that I realize the power of a positive attitude. I had been through some trials before prior to getting the cancer which I kind of believe
those things that happen. I went through a depression phase that might’ve kind of fed the cancer. My mother had passed from cancer. My partner of 26 years had also died within a four-month period. And that was after two years
of taking care of them. So that one year before being diagnosed I feel that my state of mind was in such a place that it
may have fed off the cancer. But being in the hospital I had such a strong group of support. My friends were really
really, really supportive. And I believe that I had
kind of resigned myself to “Okay, well, this is the
plan, this is my time.” And it was my friends who
really gave me the support and said, “No, it’s not your
time, you’re not going to do…” So I really would say have
a great support system. Have people who are going
to be there with you encourage you. And most importantly, do your research. I live in Brooklyn near two hospitals but I went to Columbia. I’m a firm believer that your zip code can sometimes hurt you depending on which hospital you go to. – It’s true, I mean, it’s true. There’s health disparities
and income disparities. – Yeah, there is. I personally feel if I
had went some place else I wouldn’t be having this
conversation with you right now because I don’t think they
would have had the capacity or the knowledge to introduce me to something like immunotherapy. So definitely do your research and know that you’re going to the place that’s going to give
you the best treatment. And also, I believe just the
way that certain hospitals treat you have a lot to do with how you react to the therapy. At Columbia there’s such a positive vibe moving through the hospital
from janitor, to doctor to security guard, that
is kind of infectious. And they make you feel
and want to get better. So two things. I would say definitely
have a support system. Do your research, and choose
the right place to go. – Very good. Dorothy, what would you tell yourself then that you know now? – Well, I endorse what Oswald said– – Hold the microphone up. – The microphone. – Oh, yeah. I endorse what Oswald said
about the support system. The team, and they call themselves that at Perlmutter, were amazing. The care I got there was amazing. Every single time I came
I was put through the… Blood pressure, everything was checked. I was weighed. They fussed over the loss
of another ounce (murmurs). I felt very well cared for there. But if I hadn’t had my daughter at home I don’t know what I would’ve done because I had to go back
and forth with taxis. It was an everyday thing; it was five days a week
with this hydration system. Before that, if I hadn’t
marshaled her virtually if she hadn’t come down, I
couldn’t have done it by myself. I don’t have much of a support system. I don’t have a wide circle of friends. And I didn’t say much to
anybody about my situation. But it was having this
type of close-in people what Ms. Williams spoke of
this morning, the A-team. My A-team was a team of one my sister who lives in Brooklyn. But if it weren’t for
someone in the home with me I don’t think that I
could’ve done what I do. I would’ve had to be hospitalized
really, for that stretch when this anorexia struck
because I was helpless before it. – Wow, so support, and try not to do it alone if you don’t have to, right? Okay, so we have some questions now I’m sure from the audience. I think we’re going to start with do we have any live stream questions? Not right now, okay. So if you are watching on live stream and you have a question
for the patient panel feel free to ask. We’ll be looking for that. Anyone in the audience have a question for any of our three panelists
about their experience? We have one here. And please wait until
they give you the mic before you ask. Thank you. – [Female Audience Member]
Hi, so this is for Oswald because I know you mentioned
doing your research I’m sure you all did. Where did you get that? Where did you find it? Was there one place or a couple
sites you kept returning to? – Well, initially, the first place I had looked was Sloan-Kettering because that’s where my mother was. I had, it was literally like
about a three-day stretch from feeling really, really bad going to a urgent care, them telling me it was pneumonia and then realizing something else was wrong. So I started looking at
research and looking up online. I did the home doctor thing
of going through my symptoms and I came up with all kind
of things besides cancer. (audience laughing) So I wouldn’t recommend doing that. But once I did know that it was cancer and I was at Columbia I did the research on
what they were doing. It might’ve said immunotherapy but it definitely said that they were working towards other cancer things. So when I simply did the search for best place to go for
cancer, two places came up Columbia and Sloan-Kettering. So I knew those were the two places to go. And since I was at Columbia
I decided to stay there. But after speaking to a few other doctors I realized that I was
definitely in the right place. So it’s not just doing
the research before but even while you’re in the process sometimes you may find out something that another institution
may be more advanced. As I said, I live in Brooklyn. If I was in Brooklyn at a hospital in Brooklyn and I did the
research and found out about Columbia I would’ve
went to Columbia still. So it’s not just about
before or in the beginning. I think you should
constantly be doing research just to see what’s new, just
to have the right questions to ask the physicians and to make sure you’re
getting the best care possible. – Can I something? – Yeah, sure, go ahead, Tara. – I actually did research
like it was my 9 to 5 job because like I said
there was no treatment for me for 18 months. And I decided I could cave but that’s not really my personality. And let me tell you as awful as anybody in
the audience may feel I felt really bad, and
I was in major shock. But I really wanted to live. So I did Google. I did everything in my power to research. And I decided that I wanted to be healthy if a treatment did become available to me. So I dove into nutrition
and getting my body healthy. And I started exercising
and doing Pilates. I am a social tango dancer so I went dancing as much as possible. And I did everything that I
could opportunity in my power to have as much joy as
I could and to laugh. And I swear that those are the things that made me healthy enough
so that when immunotherapy became available, I was
healthy enough to receive it. And I swear that it’s also why I’ve been able to
tolerate it for 35 months. – And you also mentioned–
(audience clapping) Just, so Oswald’s in Brooklyn and he found that there were
better places to get treatment. You mentioned you’re
from upstate New York and earlier we were talking maybe you want to say a
little bit about that. – Well, because I am a
cancer patient advocate now and I meet people all the time in person and I run a support group and I have a lot of people call me I’m stunned at how people are not willing to travel or drive. So I actually drive two
to two and a half hours every time I have to come to New York City to see my doctors. And now, this far in the game it’s amazing meeting people who actually get on an airplane and
fly in order to get here to New York City to get
to a research hospital. Usually, what I’m finding in
talking to cancer patients is usually it’s if they’ve had cancer return the second time. The first time around usually people are willing to do whatever; you’re an individual
the second time around you’re willing to do anything. “I will drive, I will fly, I will do “whatever I have to do. “If I’m broke I’ll find a way
to come up with the money. “I will get wherever I need
to get the best information.” And I advise everyone that I talk to to get to the
closest research hospital that you can, because that’s
where you’re going to get the most progressive information. And the quality of care, the kindness the professionalism
it’s absolutely amazing. – And Dorothy, it sounds like your family was a good resource for you. – Yes, yes. – Your mic, mic, mic, mic. – Can you hold the microphone? – But principally, my daughter
just one indispensable person, I believe, and
I was fortune to have… About money, Medicare
covered all my treatment with a supplement. My husband was an Air Force pilot so I have what they
call CHAMPVA insurance; it’s a military insurance. Whatever Medicare didn’t
cover CHAMPVA picked up. So I didn’t have to put
my hand in my pocket once for this very expensive
treatment, five days a week as I say, and hospitalization
and daily hydration and the blood transfusions, so everything. When I see the sums on
paper they’re astronomical. So that was very, very fortunate. Yeah, you certainly do need
help, you do need help. – Do we have another question from the audience in the back there? There we go. – [Female Audience
Member] A bit of a segue to what I was going to ask. I was going to ask a question about whether or not you were required to make changes to your diet or lifestyle when you started on your
immunotherapy treatment program. – That’s a good question. Yeah, go ahead. – It has never been
suggested by any doctor. – So you took it on yourself? – I took it on myself. – Well, my cancer developed
from being a smoker. I started smoking when I was 14 so at the time the cancer
came that was about 36 years. So they did kind of suggest
that I stop smoking. (audience laughing) Besides that, there was
no dietary restraints or anything like that. Oh, and they also suggested I be kind to my liver and my kidney. My family’s from Trinidad, we
like to party a little bit. So, they did mention
to be kind to my liver. But those were the only two
things that they really did say. They suggested I stopped smoking which three months in the hospital kind of makes you stop smoking. And just to be kind to your organs. They made sure I drank a lot
of water, try to be healthy. But like with anything
else, any other sickness any other treatment you’re going to you want to make sure, as she said “Your body’s in the best
condition that it is.” I found going to the gym huge
help, huge, huge, huge help with any aches and pains you may have. Even though I never had pain
they gave me pain medicine but I took myself off it because I actually never felt any pain throughout the whole time that I’ve been on the immunotherapy because I’m still on it. Yeah, but there was no dietary
or anything,and no changes. My basic food stayed the same and I just stopped smoking really. – I will share that my doctors say “Tara, whatever you’re
doing, keep doin’ it.” – Dorothy, any lifestyle changes your doctors told you to take? – Not at right, but at Perlmutter there was a sort of kiosk
with a lot of offerings for programs, and amongst them was something to do with nutrition. I attended one once, and
it was really very lovely. It was conducted by a chef
a known chef downtown. The participants help
with the food preparation for the lunch, and the chef
gave the sort of line and patter which talked about, organic
vegetables and so forth and we all enjoyed it. So it was kind of implicit. I assumed that cancer of the esophagus would have something to
do with food ingestion. It seems logical to me, as
a tube that’s been pelted with food for a half century and more. But no, the marker for
that is smoking solely. So I wouldn’t say that it was emphasized and nothing in the dietary
line was emphasized but peripherally it was brought in, yeah. – Very, very interesting question. – Can I share? I do choose to eat organic at home and I also made a conscious decision… You know, cancer just changes your life it changes the way you see everything the way you think, the way you feel. It was what made me realize… It makes you appreciate life. I made a conscious decision I got all toxins out of my house. I changed how I was cleaning my house. I changed how I was cleaning my body. I changed everything that
came into my household. – So just doing what you can to– – I say to my doctors “You do what you’re great
at, and I’ll do my part.” (audience laughing) – Another question from
the audience, right here. – [Malory] Hello, I’m Malory. Thank you so much, this panel. You mentioned, Tara, about social media. And also I wondered, have you all either started forums or run forums
or considering creating forums for the information that
you have in your experience? – Why don’t you go last on that one? Have you started a forum
that will, yeah (murmurs). Let’s start over here ’cause I know you’ll have
a good answer to that. – I really don’t
haven’t started anything but I do interact. Friends who know what I’ve been through if they have a relative
that’s going through it they offer, “Well, maybe you
should speak to my friend.” So I do do a lot of that especially because even when I
say the word “immunotherapy” there’s a lot of people that
still haven’t heard about it. They have no idea what it is. So a lot of times you’re
speaking to someone who only believes their only options are chemo and radiation. So I do, do a lot of informing people who come to me and ask me. But as far as actively starting
out a forum or any platform I haven’t done that. – And Dorothy? – No, I have no social
media presence at all. I can barely operate email. (audience laughing) (murmurs) So I have to pass on that one. – All right, so now, Tara. – Well, I feel driven. I realized something in
preparing to get ready for today that I could actually list
on paper all the bad things that have happened to me but I can’t list on paper
all of the magical miracles that have happened to
me through this process. So because of those
miracles, it’s beyond me; it’s coming through me. I am driven to give back the miracles to as many cancer patients as I can. So, a year ago I started
a cancer support group of my own in upstate New York. I think outside the box so the other support
groups didn’t work for me so I created the one I wanted. I do want to publicly
continue public speaking which I started about a year ago. And I am writing a book
also on coping skills through stage four. Because with my friends and my doctors that’s what I’m known for is how well I’ve coped
through this situation. So my intention fully is to help as many cancer patients as I can. – Thanks, so it’s just been so wonderful to hear all of your experiences. And I know that there
are many in the audience who are going to want to
approach you after this and they will have an
opportunity to speak with you. Before we break for the
breakout sessions though I also just would like to
give a round of applause to the scientists, to the
organizations, to the companies that have all worked to
make immunotherapy possible so that these three people
could be on the stage here with us today. (audience clapping)