- When I first learned
about immunotherapy
the concept seemed so strange to me.
I was just used to this idea
that you're on treatment.
You will feel terrible.
I started to feel not
well spring of that year.
Started to develop this very gnarly cough
didn't really occur to me
that it could be cancer
or anything like that.
I had a giant tumor outside
of, out of my right lung.
And when I was first diagnosed
with Hodgkin's lymphoma
it was kind of pitched to me as like
the most treatable cancer.
So typically, people are done with it
once they do some
chemotherapy and radiation
and then they're out.
They get to walk off into the sun.
I was not in the cohort unfortunately.
I was in the refractory group.
After going through a
couple different treatments
that didn't work as well
as we would of liked
was coming up senior year
and it had metastasized from the chest
over to liver and abdomen.
I had reached a point where
it became this cycle of
we'll just get enough
time to get to the next
drug release that could potentially work.
- Meanwhile, like everyone
who had graduated with her
they were moving out of their homes
and they were working
and when was that going to be my turn?
- I was starting to get
more sick at this point
was in a lot of pain.
I had lost so much wight
from not being able to
like really keep down food,
or liquids, or anything.
I was just so exhausted
after all of the treatments.
I wasn't particularly optimistic.
- So this was a 23 year old
girl with a refractory cancer
that for which she had
gotten 14 prior treatments.
And when she came into the clinic
I never, I didn't actually
ever see her really stand.
She was pretty much gray.
And I really felt at the time
that this was a real long shot.
She received a dose.
I saw her the following week.
She was just as sick but a smidgen less.
Over time, maybe in about
three or four weeks
I actually realized how tall she was.
- The only thing I experienced
was maybe like some mild fatigue.
Otherwise, there was like really no nausea
or anything else to get in the
way from me getting better.
I was really able to start
thinking about working again
and just building up my
energy, and feeling well
and hanging out with friends and things.
There wasn't my entire life anymore.
- Now she comes in, she's got her laptop
she's hanging out, she's going to work
she's got her life back.
This is about a year and a half later.
It was, wow.
- Even with the treatment not
being in my body right now
it still continues to
fight off the cancer cells
and keep the lymphoma at bay.
The idea that there could be a treatment
that just harnesses the
body's own defenses
it's like now we had much
better detectives on the case.
They have immunotherapies that could be
adapted across multiple cancers.
It just opened up the toolbox
and there are so many more
options for so many more people.
Learn as much as you can
and you connect with other
folks that really care about it.
They're all out there
and they're all actively
sharing, and tweeting
and talking about it.
I'm so grateful for all the
folks that are fundraising
and actively raising awareness
with the Cancer Research Institute
and everyone associated with that
that gets it from their
initial stages of research
to the clinical trials all
the way over to folks like me
who after failing a couple other trials
are looking for the next option.
(applauding)
- Hi everyone.
(laughs)
So that was me.
(laughing)
I feel so grateful to be
here today with all of you.
Yeah, that was filmed
almost four years ago
in October 2015, released in 2016
when Opdivo, nivolumab that I
was treated with was approved
for Hodgkin's lymphoma
which was really wild to be
able to participate that
see that, and then have this be documented
as part of that approval.
It's also crazy to see how far I've come
since that was filmed
how much has changed, how
much has stayed the same.
For me, as we mentioned in the
film, I'm a cancer patient.
I have or had, I'm still not
really sure the proper tenses
Hodgkin's lymphoma.
People ask me if I'm like in
remission, if I'm still sick
and while I don't honestly
feel super comfortable
using the R word, remission
technically we have NED,
no evidence of disease
which is really cool.
I'm comfortable with that one.
Stable is good.
That one I'm also super comfortable with.
It's been almost five years
now since my last treatment
which is super crazy.
(applauding)
Nuts.
Thank you.
Two weeks ago I was
sitting in a patient room
at Memorial Sloan Kettering Cancer Center
where I've been treated
since the beginning.
A fellow came in, and before
I spoke to my oncologist
and she was talking about
asking me some questions
seeing how I was feeling
and talking about some of the
scan results for a little bit
and then she showed me my chart
and on it was a Post-It that
said, survivorship eligible
which just crazy to think
about from where I was
to where I am today.
So when you think about like
my status, like NED, whatever
I'm at least survivorship eligible
which is pretty cool.
My oncologist then came in
and it was largely a social
visit as they are today.
Like we tend to just kind
of chat a little bit
get some hugs in there, and
we talk about scan results.
So as of two weeks,
things are still great
which is awesome.
What we did talk about
was this idea of like
what happens next.
I've been going there for
like almost nine years now.
He's like, what am I going to do with you?
(laughing)
Like do I keep scanning you?
And I'm just kind of like, I don't know.
Like, you can't ask me
to make this decision.
Like, we're just kind of
going down this path here
like trying to figure this out.
It's a very, it's exciting
and trying, at the same time
to figure out the right more here.
He said he's going to talk to some people
see what the right follow
up is for someone who's
four and a half almost five
years out of treatment.
So we might continue doing scans.
We might just have me come in,
say hi, see what's going on.
And while that does sound really nice
like potentially like not getting scanned
and having be like Crystal Light
raspberry flavored jungle
juice kind of thing
every six months
which again, I had been getting used to
especially when they make it ice cold.
It could be a nice little summer drink.
I'm also at the same time
like wondering what it would be like
to have like a scanless future
like not going through this thing
(laughs) every few months or so.
I'd almost looked at this
like a safety net of sorts.
This idea that like no
matter what I was feeling
if I had a little bit of
a cold, some allergies
I got the flu in March
I always knew that like
a scan was coming up.
We're going to get stuff checked out.
We're going to get the
lay of the land here.
I always had that to look forward to
and then I cold relax
after that status update.
In thinking about that,
thinking about this future
where imaging might play
less of a role in my life
I then started starting to
think about the beginning
when I was first diagnosed.
So, it's wild.
So I was diagnosed in 2010.
I was 20 years old.
Now, 29 reflecting on it
almost a third of my life has been spent
in some kind of like cancer
treatment or follow up.
Like we used to joke about this
that my relationship with Sloan
is the longest lasting
relationship I've ever been in.
But they've been really good to me
so it's all good.
(laughs)
I would say my 20 year old self
there's a lot of similarities.
We're both as equally
bouncy and enthusiastic.
But I think one thing
that differentiates me
from my younger self
I was like not good at
taking care of my health.
I would be up at all hours studying
drinking coffee, going out.
I was not good at prioritizing my health.
I had a very specific view
about what success looked like
largely differing by attending
a pre-professional university.
I just knew very little about the world
and everything in it.
I started to notice my
symptoms in the spring of 2010.
I had a roommate at the time
and would find myself waking
up in the middle of the night
with this hacking cough.
Bless her, she didn't
kick me out of our room.
(laughs)
She's even, she's still
friends with me today.
We actually went to Machu Picchu together
to go hiking last year,
which was really wonderful.
At any rate, this cough continued
from the spring into the summer.
I was going to the beach,
I was running around
I was interning, and all the
while I still had this cough.
At my internship, I would spend
the day making spreadsheets
writing press releases, and just coughing.
I went to see my pediatrician
about like five times or so
and was told it could be attributed to
a variety of ailments.
It could be my asthma.
That would be weird given
that like I had asthma
and was like a county metal hurdler
and high jumper in high school.
It could of been allergies
then I had a touch of
pneumonia for a little while.
Cancer is never brought up
and they never did any screening
beyond like a physical exam.
Meanwhile, I was unable to
sleep through the night
and I was embarrassed that
I might be known at work
as like the coughing girl.
Not something that someone wants
when trying to get a full-time job.
I went from doing long runs
around the Schuylkill River
down in Philly to being unable
to go 50 feet without wheezing.
So I complained to my mom.
She was there listening to
me complaining for years.
Thanks for that.
So I was really frustrated and
saying, like something's up.
Like I'm doing everything
they're telling me to do
and nothing is working.
This was a key point when I
had to advocate for myself.
I knew something was off.
So she set me up with
her adults person doctor
and from there I was sent
to get a chest x-ray.
And I still remember the phone call
when this doctor called me to come in
to talk about the results.
I imagined that something must be serious
if she's asking me to come in.
I just didn't know what it would be.
So I came in, and she
said there was a mass
the size of my fist
outside of my right lung.
I remember making a fist with my hand
just looking at it
and I was just perplexed
that something this large
could fit under my skin
and I wouldn't notice it.
And then I was thinking
back to the difficulty
my lungs were having at taking in air
and I was just amazed at how my body
was able to adapt to that so I could keep
keep on keeping on.
Some days later I had the
first of three biopsies
that would diagnose me.
The local hospital had some difficulty
getting sufficient tissue the first time.
There apparently a lot of necrotic
or as they're known they're dead tissue
floating around up in my chest.
We did a needle biopsy later that day.
We were able to figure
out it was lymphoma
but we weren't sure what type.
So, not off to the best start.
But fortunately through a family friend
I got connected to the folks at
Memorial Sloan Kettering Cancer Center
where I met my oncologist
for the first time.
I was totally freaking out.
My dad was there with
this big yellow legal pad
just like furiously drawing down notes.
My mom was there with this
giant binder of like stuff
records, and like CDs of scans,
asking a million questions.
But one thing that immediately like
put me at ease with my doctor
and made me think that we
would get along through this
was I was really frustrated that
I was going to have to get a third biopsy
and that I was worried that like
we had wasted a bunch of time
and like just was worried that
I didn't have time to like.
I really wanted to get
this treatment started.
And he was like, listen
like you're not a ticking time bomb.
He leans into me, listens to my chest.
He's like, I don't hear any ticking.
(laughing)
So I was like, we're going
to be able to hang out.
This is going to be good.
I needed that dry sense of
humor to get trough this.
And then it went from running around
to becoming also, by the way
if you guys don't follow the
cancer patient on Instagram
I highly recommend.
So, (laughs) I went from
this idea like, okay
so this is what I have to
do to be a model patient.
And then I just started like
shoving down a bunch of cake
and I got to tell you, it really works.
(laughs)
I was really lucky that I was able to
continue going to school
during my first treatment.
My oncologist supported me in
continuing to go to school.
He thought that assemblance and normalcy
would be really helpful.
So we worked out having
like a reduced workload.
I was able to have my friends close by.
They even came with me
when I got my wig fitted
and we made it into like a social visit
went to the Turtle Back Zoo afterward
went saw some cool snakes.
It was good.
It was a good day.
I remember it for the
day we went to the zoo
rather than the day I got my wig.
I was still going out.
This was at a frat party in
my in my Greek squad t-shirt.
I was not going to let me hold
me back from living my life.
(laughs)
And honestly, with the treatment
I was mostly worried
again, being at this
hyper-competitive school
I was mostly worried about taking time off
and like it impacting my plans
to like work at a big fancy company
and like make buckets of money.
And I wanted to make sure I
was able to manage all of that.
So again, we thought it was
just going to take place
over the course of the semester.
Minor interruption to my
plans, my grand plans.
But as we completed that
first course of chemo
it was supposed to be
just a two step process
frontline chemo and radiation
and then I was supposed to be done.
Like 90% of Hodgkin's
lymphoma patients are.
But when we finished chemo
and I was getting mapped
for the radiation
that was when we discovered that
the frontline chemo hadn't
worked as we thought it would.
I was literally like on the table.
They were mapping out,
getting my little tattoos.
Anyone that's had radiation
had those little dots.
And I was really frustrated.
I remember, I had like a final exam essay
that I was supposed to write that night
and I just couldn't do it.
I just like cried myself to sleep
and started again the next day.
That was the first in a
string of failed treatments
that came my way from Ice to GND
starting to go down the path
of more targeted treatments
and clinical trials.
It was after radiation when I
and this was during a
summer internship in 2011.
At time we were just doing
radiation to that ber mantle .
I also had that wig.
It got a little worse for wear.
I was like really wearing it out.
I had my nice like radiation magic marker
that they used to put
some stickers over it.
It looks really cool when
you go out to the club.
People thought I was in a cult.
It's fine.
The best cult really.
But it was after this radiation that we
noticed that my cancer had metastasized.
So it had spread from my
chest to my abdomen and liver.
So I was kind of like, well, all right.
Let's go find some other options.
We started with SGN-35,
some other clinical trials.
Fortunately, a lot of those
I was able to do through Sloan as well.
One such treatment, CAL-101
did end up buying me a ton of time.
So I was able to join my
senior year of spring.
I went to Italy with my
mom for spring break
run around like fools.
I was able to graduate on time
while managing this treatment.
And it really just gave
me this like glimmer
of like a future without
cancer life would be like.
Unfortunately, the
response was short lived.
And after graduation, instead
of taking the full-time job
that I would have gotten
from the internship
where I was getting radiation.
I became a clinical trial
consultant of sorts for myself.
So this involved becoming more
actively involved in deciding
what treatments I was going to get
since Sloan didn't have
anything for me at that time.
So, true to form, as someone
who studied behavior economics
I made a decision matrix
to help me figure out
what trial or what
treatment to sign up for.
So I picked a bunch of attributes
that I thought were important to me
like convenance was a
factor, like the safety
the phases, the treatment
frequency, where it was located
the drug delivery.
I always hated needles so
I was like oral medication
would be much nicer if
I could make that work.
And I plotted them out.
And in consultation with my oncologist
I prioritized which ones
we'd reach out to first.
And that's when I got
involved in this whole process
of trying to get on a trial
not at the site I was
being currently treated.
It involved calling different
clinical coordinators
trying to schedule consultations
trying to get all my paperwork together
so I could get some appointments in place
so they could look at
me before I could even
proceed with going through
some qualified test
to get onto get a spot in
a clinical trial cohort.
It reminded me of just
kind of going through
like an interview process
with trying to get like a first job.
You apply to a bunch of places
you hope they like your resume
and then maybe they'll
come in and see you
and if you qualify you could get
something that would
make your life better.
And through that I was able to participate
in some clinical trials.
That got me through to the end of 2012.
With clinical trials generally
and you'll notice
and this was also mentioned
on the panel here today
with newer particularly
experimental treatments
like every symptom that you notice
even the most subtle, is
really important to share.
This was something, this kind of training
I honed on, was it okay?
That thing I was just feeling,
was that like normal tired
not normal tired?
Like I should probably write it down.
Like that was a weird little cough.
Write this down.
And I'd have like a laundry
list of stuff to share
with the clinical trial
people every time I came back.
I was like, but what about
this oddly specific thing
where I felt like a little bit tired
at 10 a.m. and not at nine.
And that is very helpful,
but keep writing it down.
And they were like, I don't
know if it's as relevant
but they humored me, which was good.
There are also things that again like
you got to be really
comfortable with your physician.
At one time I was waiting in
the waiting room to be seen
and there was this like really cute guy
who was also a cancer patient
sitting across the way from me
and I was distracted, and pooped my pants
right there in the waiting room.
So had to go hide out in the bathroom.
My mom came and got some
scrubs from the nurses
and that was an important
note that in my trial log.
So, everything matters, even
the most embarrassing things.
Share it all.
Another piece that we had just learned
through going through this
clinical trial process
was the importance of asking for help
which sometimes involves
literally asking for new pants.
Whatever it is, like
there are people there
that are down to help you.
And it's important that
we ask all the questions
no matter how silly they
may seem at the time.
It's important that you as
the patient have clarity
and feel comfortable, and feel empowered
with the knowledge that you can
help progress thing forward.
It was at that time that we
reached sort of the lowest point
in my cancer journey, which was
winter 2012 going into 2013.
So, by the numbers, that
involved one stay in the ICU
about 30 pounds of fluid and tumor
and stuff in my stomach I carried around.
And I was on about 60
milligrams Oxycontin twice a day
with, still with breakthrough pain.
It was a really difficult part of my life.
ICU, I would be watched 24 hours a day
by the angels of our health
system, these nurses.
And knowing that I had
this care team behind me
in my lowest of points
is what made it possible
for me to navigate that
and still feel hopeful.
My ankles and feet had swollen.
It made it difficult to wear
most of my closed toed shoes.
It was winter time.
I was miserable.
I would wake up wondering
when I could go back to sleep.
I didn't want to eat, talk
to friends, go outside.
I barely had energy to go on the computer
which was wild.
Now, like I literally like do web design.
(laughs)
But I remember I had
a visiting nurse come
and she was like flushing my catheter.
And I was sitting there and
I had this giant stomach
from everything being backed up
and I remember she asked when I was due
'cause she thought I was pregnant.
And for someone who had
stopped getting my periods
and now I was having hot flashes
that was not an easy conversation to have.
As a last ditch effort,
my oncologist put on CNOB
which is for those that have
read Emperor of Maladies
which I would highly recommend
is one of the first
protocols that was developed
for lymphoma back in like the 60s or so.
That was like mustard gas derivative
so literally the last missile
and arsenal that we had
to fire at this thing.
And it did work for a time.
It cleared out my stomach.
I was feeling a little bit better.
I could start wearing my normal shoes
which was very exciting,
but it wasn't done.
So, I was starting to get better again.
I got my stomach
With the cancer involved
in my abdomen and my liver
I was starting to develop some blockages.
So in the spring of 2013
it was trying to figure
out how to keep food down
going to the hospital occasionally.
One point I had a more severe blockage
where I was like hiding out
in the Port Authority bathroom
in a ton of pain
and my friend and some EMS
people had to come get me
put me in an ambulance,
and bring me to Sloan
to get checked out.
But one of the major blockages I had
ended up being a really good thing
and I say that because it brought
me back into the hospital
and I had to go to
surgery to fix my bowel.
My intestine wasn't doing
like the squeezy pushy thing
it's supposed to be doing.
So when they scanned me for the surgery
they uncovered some
weird stuff in my liver.
And mind you, I just finished CNOB
so we thought we were good, we were done.
And but they're like, well
maybe it's an infection.
Like we'll just, let's vet it out.
Let's not assume it's lymphoma right away.
So they did some cultures.
They checked it for bacterial
and fungal infections.
No dice.
So, the most plausible explanation
was that it was lymphoma.
So, and it was the fastest.
It would have grown and
come back in that time
which was very alarming.
We proceeded with the surgery
got put on liquid diet, just hanging out.
And my oncologist came to
visit me at my bedside
and we are talking through
like what we were going to do
because as far as I was concerned
like I had exhausted all my options.
But he was like, you know there's
this other clinical trial
and it's very early here at Sloan.
This thing called PD-1
checkpoint inhibitor
called nivolumab.
And he's explaining to me
some of the science behind it
similar to what Dr. Reardon
was talking about earlier
giving us our PhDs.
That was a lot of what
he was explaining to me
and how it was going to help
stimulate the immune system
which was intriguing to me
as a lot of the past treatment I had had
were these like broad-based
chemotherapies, or radiation
more tumor targeting things,
and they didn't work.
So trying this completely
different approach was appealing
and knowing that it would
have different kinds
of side effects than what I
experienced with chemotherapy
was definitely something I
was down for at that point.
So the hospital stay, the highlights.
So I got a fancy new scar.
They discovered the lymphoma had come back
and I learned about nivolumab.
So all in all, not a bad
way to go for two weeks
hanging out at Sloan.
So, as Dr. Reardon explained
and what my oncologist explained to me
it prevents this interaction that
shuts down the immune system
and stops it from doing its job.
So, again, having had failed
so many other treatments
I was having difficulty keeping down food
I was frustrated, and I was beat down
but I was still ready to go.
Like let's try this new thing.
So the day after I left the hospital
went back to Sloan, met up with
the new clinical trial team
Dr. Lesokhin who's on the video.
Met him.
And as he had mentioned in the video
I was just this heeble little thing
green and shriveled up.
But still fighting.
(laughing)
So, we hung out.
I got qualified for the trial
and we started the infusions.
And I remember, Dr. Lesokhin
again, I had gone through so
many treatments at that point
and so many things had been hyped up to me
as like, it will be game-changers
and I was just really not
there for another sales pitch.
And he was perfect.
Again, similar kind of dry
humor to my other oncologist.
He didn't over promise anything.
He was like, this is
the evidence we've seen.
These are the other cancers
it's worked in before
and we think it's a viable
candidate to potentially work for
Hodgkin's lymphoma
patients such as yourself.
Let's give it a shot.
And that was exactly the type of tone
and temperament I needed
at that point in time.
And my early results were promising.
And I think the best way
when I would explain
immunotherapy to my friends
when I started to get early
results that were positive
I came up with a bunch
of different silly ideas.
And as a millennial, I felt
it was really important
to explain it through memes.
So my memes from before immunotherapy
we had Darth Vader, I'm
here to ruin your life
and then he's like, I'm
tired, like leave me alone.
But then after immunotherapy
he's like, come at me bro.
Like let's throw down.
So, that's where I'm at.
But these early results were the same time
like feeling good right away.
I was very skeptical
'cause again, I had seen this before.
I had drugs that started to work early on
and then had stopped working.
So I had a very tempered
optimism, I will say.
And so my early results came back
and like over 50% had been wiped out.
That was really exciting
but again, tempered excitement.
I was just like, is this
yeah, is this the real life?
Is this fantasy?
Don't know, but we're
going to keep trying it
and we're going to keep bringing it.
I was happy though that going
from being in the hospital
this is the hospital stay
they had pet therapy which was awesome.
And feeling super weak.
Within a mater of like six
to eight weeks I was outside.
I went to my first year reunion.
I saw some of my friends graduate.
Like this was the life that immunotherapy
was enabling for me.
So from there, I was thinking about
some of the side effects
that I come to expect from chemotherapy
and I look like Brick Tamland
quoting this one from Anchorman.
They get into this fight.
And so Brick gets a Trident
and he's just waving it wildly
and like hitting anything in its path
indiscriminately, non-specific.
And again, and it can work.
It can kill some cancer stuff.
But what you really want is Inigo Montoya
who knows exactly who he's looking for
hunts him down, and then has the skills
with this little sword to knock it out.
I have to explain everything in movies
that's the only way.
(laughing)
So, for me now looking back
and thinking about where I was
the initial successes I
saw with immunotherapy
I ended up being on it from like 2013
through the end of 2014.
There were some side
effects along the way
but pretty minor compared to
what I'd seen with chemotherapy
and I know it's different for everyone
and again, all the more
reason to pay attention
to your symptoms and report
them to your physician.
I had things like pneumonitis.
We managed that.
I had a liver enzyme spike.
We ended up deciding to stop
Nivolumab because of that
but at that point I think like almost like
well over like 96% of the
cancer cells had been wiped out.
So, and I was eligible to
receive treatment again
if I needed it.
So it felt like the right
time to make that move.
And we've just been kind of like watching
and waiting ever since.
So I've been able to like
climb on some stuff now
frolicking around in the sun
hanging out with Cancer
Research Institute people
organize UX hackathons now.
But ultimately like going
through this experience
I didn't do this alone.
And I know we talked about
that a little bit in the video
and it's mentioned here as well.
It's clinical resources.
It's transportation and logistics.
It's financial support.
It's friends and family.
All of these things make this possible.
So just to walk through
some of them really quickly.
So at a general glance,
clinicaltrials.gov
which many of you are
probably very familiar with
that's where I learned
about a lot of the trials
that I was on pre-immunotherapy
clinical trial.
It's much more user
friendly now (laughing)
since when I used it, which is great.
I recommend checking it out
to see what options are available to you
see what clinical trials
that are recruiting
and to share those with your physician
and figure out some other options.
So recommend cancerresearch.org.
They have some clinical trial navigators.
I think there's some here today as well.
Shout out.
From the transportation
and logistics standpoint
again, it's not just treatments.
It's like, how do you
get to those treatments?
How do you make sure that you are
not stressing yourself out
even more than necessarily
navigating this process.
When I was getting radiation
I was doing an internship
in Hartford, Connecticut
again, away from home.
But fortunately, thanks to the
Road to Recovery volunteers
through American Cancer
Society, I always had a ride
and I didn't have to worry about that.
When I was going to clinical trial sites
outside of New York
Corporate Angels was an amazing resource.
What it does is it gets cancer
patients seats on flights
so you don't have to pay
when you go from trial site to trial site.
And then from a community standpoint
a lot of Facebook groups
were really helpful to me.
There's certain other forms as well.
There's a lot of disease specific one.
The one in particular that
I, that worked for me
again, having something
for refractory disease
Hodgkin's lymphoma relapsed and refractory
share a lot of tips
and just a great place
to vent, and just talk
and communicate with other patients.
Also Leukemia and Lymphoma
society ties for young adults.
And then what I recently discovered
I wish this available
when I was getting sick
because I needed this
bright light of humor
the cancer patient on
Instagram and Twitter.
And then just some general learnings
things that I have observed.
The importance of evaluating your options.
So like I did my decision matrix
and I made my little chart
'cause that's just how my brain works.
But whatever your method is to figure out
like what your prioritize
when you're picking
what type of trial, or
what type of treatment
or what type of clinician, or
clinic you're going to go to
those are things that are personal to you.
And there are options.
Like the dry humor that
like my oncologist had
might not work for some people.
It was great for me.
That's what I needed.
But again, bedside manner
that your physician has
will influence how comfortable you are
sharing your side effects
and that's important to think through.
And you want to make sure
you find a good match.
In addition to that, you
have to own your experience.
The data points that
your provide as patients
and that I provided as patients
are your day to day experience.
Your clinicians, and your nurses
your clinical trial coordinators
aren't there with you every day.
They're not going to know like
if it was hard for you to
get out of bed that morning.
They're not going to know
if you're having like
if you shit your pants
in the waiting room.
Actually, they might know that.
These are things that you
need to document and own
and know that the insights
that you're providing
about your experience going
through these treatments
is a critical part of your recovery.
And know that and feel empowered by that.
And again, I think when
we're navigating this
and it can feel very overwhelming
and it can feel like
we don't have the
expertise to navigate this
and it can feel confusing.
You can know that at the end of the day
you at least know how you feel
and that can be a really key part in this
and that was very empowering to me.
And also that you're not alone.
As we can look around the room
when Brian had everyone raise their hands
to see who are the patients
and caregivers in the audience.
There's a lot of us that
are navigating this.
A lot of whom have gone
through clinical trials
and gone through immunotherapy
have different experiences
to share and talk through.
In addition to that, the caregivers
and the family members that are here
and the friends that we have
and the non-profits
that are solely designed
to make our lives easier
those are resources we can
tap into, places like CRI.
And finally, like you can handle this.
When I went through my
four years of treatment
and then like almost five years post now
yeah, I struggled a lot.
And in the beginning I
felt really ill-equipped
to handle this.
I was having difficulty
managing my stress
but thanks to like a lot of
different like therapies
accupuncture, holistic doctors,
my oncologist's weird jokes
and more.
Able to navigate it.
And so you guys can do that same.
And so, I just want to say how, again
how grateful I am to be here today
and I'm just feel really blessed that
there's been so many researchers
and clinicians, and
patients, and caregivers
and supporters that have come before me
that allowed me to be here today
and who were involved
in trials before I was
which enabled me to be on
the trial that I was on.
And I'm happy that I'm able
to play this small role
and making it so other patients
can have the same quality of life
that I've been able to have in the future.
And I know that a lot of
that's going to come down to
continuing to investigate
and develop new options
new drugs, so that more patients
with more kind of types
of cancers can benefit.
And it's important that
we continue to fundraise
and drive, and support,
and share our stories
so that those drugs can
continue to be developed
and so then more patients
can receive the care that they need.
But yeah, and I'm just looking
forward to the day when
again, more of us can be out
and about, climbing on stuff
frolicking around in the
sun, thanks to immunotherapy
and other innovations at CancerCare.
So, thank you.
(applauding)
