- So now it's time to hear
from Adrienne Skinner
who in 2005 took a genetic test
that showed that she was at risk
for developing certain forms of cancer
which she eventually did develop.
That same gene testing
though also revealed
that she was eligible for a clinical trial
here at Johns Hopkins
that helped save her life.
So, I met Adrienne a
little over a year ago
at the New York City
Immunotherapy Patient Summit
where I got to hear some of her story.
And even though success stories like hers
are becoming more and more common
it still never tires me.
I never tire of seeing how
science is helping to save lives.
So, let's let Adrienne tell
her that in her own words
by way of this video and then Adrienne
why don't you come on up and
we'll hear directly from you?
Thank you.
- Having a genetic mutation,
it's not if, it's when.
You just get so caught up in this
and you don't want it
to be your whole life
you want to have life in other ways.
I have a very full life.
I have a full time job.
I have four daughters.
I have a new grandson.
I play tennis, I do yoga.
I have Joe in my life,
we do lots of fun things.
Joe and I met two months
before I was diagnosed.
He lost his wife of 26 years to cancer.
He's a remarkable man.
I'm very lucky to meet
somebody like-minded
who enjoys so much of the
same things that I do.
I have something called Lynch syndrome
which is a family genetic mutation.
Lynch syndrome is 80 to 90% lifetime risk
of digestive tract cancers.
I had been losing weight, I was jaundice.
When I went in for the annual colonoscopy
I got a call within two hours
saying something's wrong.
It was a pretty fast diagnosis
that turned serious extremely quick.
On February 26, 2013 I went into surgery
came to several hours later and he said
"We couldn't do it because it's spread.
"You have spots on your liver.
"It's ampullary cancer stage IV."
We went through three
different kinds of chemo.
I've never been sicker in my life.
It was horrible.
I did it for a year.
Because my cancer was MSI-High
I was eligible for a clinical
trial at Johns Hopkins.
I get a call saying
"If you can get down here tomorrow
"we'll treat you in the clinical trial."
I received Pembrolizumab.
I would go down every two weeks.
I would take the train, I would go up
I would get the infusion, I
would get back on the train.
Immunotherapy is really about
enhancing your body's own
ability to fight cancer.
There was no side effects.
I got all my hair back, no neuropathy.
I felt great.
I would have a biopsy three months
following the first treatment.
The surgeon who did it
came over to me, he said
"If somebody hadn't told me
you had ampullary cancer
"I wouldn't have known, there's
nothing there, it's gone."
My last treatment was April, 2016
and here I am, almost three
years later and I'm doing fine.
I'm so glad I'm going to be around
to watch my grandson grow up.
I'm grateful that my
daughters live close by.
The Cancer Research Institute
is the reason that
cancer is being addressed
with immunotherapy.
Their research not only saved my life
but will potentially save
members of my family.
I'm alive.
Life is great.
I don't have anything that
gets in the way of me living.
I don't have to worry about this
purely and simply because
I got cured of this cancer
in a way that did not
compromise the rest of my body.
Immunotherapy is absolutely
the way of the future
and the present.
(audience clapping)
Still makes me teary. (laughs)
I was... And you've seen this story
but I'm going to go
over a few of the items
and then give a little
bit more color to this.
I was diagnosed with this
stage IV ampullary cancer
in February of 2013.
And when the surgery to remove the tumor
in my ampulla revealed
that the cancer had spread
to my liver...
I was going in for the
Whipple, the famous Whipple
if any of you have had to deal with this
and so I was prepared
for this massive surgery
of seven hours.
And so when I came to and they said
"Sorry, you got to go right into chemo
"it's not going to be
treatable through surgery."
That was the first hit.
So yes, I have Lynch syndrome.
It's a familial genetic
trait through my mother.
I share it with one of my sisters.
I also have three of my four
daughters who have Lynch.
So this is a big deal
and it's what caused the cancer.
So
I had years
I knew for 10 years,
almost, that I had this.
I had colonoscopies, endoscopies
I did all the things I was
supposed to do to make sure
that what was expected to be
colon cancer were caught early
because that can genuinely
be treated, right
if you catch it early.
But actually when they
discovered the ampullary cancer
they figured out that it had
actually been in the system
for two years.
So it was a long time
and they didn't get it.
So it was pretty grim.
The chemotherapy that began
after the surgery was...
I had just been cut open
for this massive Whipple
assignment, which didn't happen
and I get started on this chemo
and I've never been sicker in my life.
It was awful.
I mean, I couldn't even sip water.
That's how bad it was.
And it didn't work.
I went through three
different kinds of chemo
over the course of the following year
and it would work for a little while
and then it stopped.
And so every time I'd go in
and we'd go through this process...
You just have to keep
going, that's what I did.
My oncologist, Dr. Eileen O'Reilly
at Memorial Sloan Kettering
had done the genetic test
when they had gone in for the surgery
which they had hoped to do.
They had taken the biopsy of the tumor
and she'd had it tested at
my... you know, I agreed.
And so she had found that there
was a genetic characteristic
MSI-High, which in her studies also
she had found out there was a
clinical trial occurring here
at Johns Hopkins studying the effect of
Keytruda, in this case
and how it was potentially effective
for people like me who have
MSI-High induced cancers.
And so she said to me...
She came to me
and I trusted her with everything.
She was the person that was
going to help me the most.
I really had great faith.
She said, "Look, I have other
chemo solutions we can try.
"What do you want to do?"
And I said, "What do
you think I should do?"
And she said, "I think you should try
"and see if they'll let you in.
"Get into that clinical trial, if you can
"because they think
that's your best option."
I was relatively healthy at that point
except for this terrible disease
that was likely going to kill me.
But I was still working full time.
I played tennis and had wigs for work
and wigs for tennis.
And I was like... I didn't
let it stop my life
but I was obviously dealing
with a very serious situation.
But I went in with an expectation
that I would get admitted.
The problem was that chemo
had been stopped for
I guess, about a month and a half
two months before I went
in to see if they'd take me
and the markers, they always
look for certain parameters
like clinical trials.
This is the deal
you want these people who
have these characteristics
and my genetic markers
were off the charts.
It was up and down
and I was not necessarily a
good candidate in their eyes.
But here's the thing
I've been in advertising
sales for over 40 years
and there's a purpose in
telling you this. (laughs)
It's been a wonderful career
especially because I
transitioned from magazines
to digital media 25 years ago.
I kind of saw the light coming here and...
So I've always been interested
in new opportunities
and I had lots of friends in
media sales over the years
and those who'd stayed in print
who thought I was out of my mind
were laid off long ago.
So here I am, I'm still working.
And point I'm making is
that this is something
that allows me to
understand how to put myself
in the position of the
person making the decision
that's going to be really important.
So in terms of my
livelihood that's what I do.
But I also understood it in
terms of this clinical trial.
When I went to meet
with them my pitch was
I respected their guidelines.
However, here I was, I
was strong and healthy
except for this admittedly terrible cancer
that would likely kill me.
Most people come into clinical trials
when nothing else has worked
and they are literally at the end.
Treatments can leave
you sicker in many ways
than even you were when you started.
It's tough.
Chemo does that to you a lot.
So it's a hard fact that
being weakened by chemotherapy
is not perceived as positive
for success in clinical trials.
It's true.
So being able to say I
was willing to come now
before I was in a weakened
state from other treatments
was a plus.
In addition, I was calm and reasonable.
And the truth is that the people
who manage clinical trials
and administer them are amazing
dedicated medical professionals
who care deeply about the
people in the clinical trials.
They really do.
I mean this is a calling, in my view.
They know that patient
attitude is really important
and they look for that in participants.
I showed I was prepared
to accept the risks
and trust the process
because it was the best
option for me at hand
and it was based on the
recommendation by the doctor
I trusted above any other, Dr. O'Reilly.
So initially they turned me down.
I was gracious in accepting this
but I never take no for an answer.
That's my sitch.
But I also said I was
willing to keep trying
I would keep trying and talking to them
and seeing if they would reconsider
and they did.
Holly Kimberling, who is a saint
head nurse on this trial
she advocated for me with Dr. Luis Diaz
who was the lead doctor
who was not in that day
when I came to visit.
He asked her what she
thought and she said
"I think we should give her a chance."
She called me next day and she said
"If you can come back right
away we'll treat you."
I was on that early train again.
I began treatment on April 15th, 2014
after suffering all the side effects
I had the hair loss, I had the neuropathy
I had the foggy brain.
I had it all.
It was tough.
I had zero side effects with Keytruda.
I know none of these are
going to work for everybody
but for me it worked like a charm
and it worked without side effects.
I was able to go every two weeks.
I would take the 6:00 AM
train out of Larchmont
where I live.
I would go into the city
I would catch the Amtrak 7:17
I had it memorized, down to Baltimore
made friends on all the
people on the train
the conductors and the
people in the cafe car.
I still have them as
friends, some of them.
I would get my treatment and
I would turn right around
and I would come back home on the 3:47
and come back home, in one day.
That was my life for two years.
I worked full time.
I would take my computer
I would work on their train going down.
By the time I was back on
that train coming home
I was a little exhausted
so it was pretty much sleeping
in the seat at that point.
It was a pleasure to be treated.
I have to tell you, for me
the blood work to be
in this clinical trial
was harder than the infusions
for the Keytruda that helped me.
Really, it was amazing.
When I started the treatment
my cancer antigens were over 170
and within two months
they had dropped to 40
and by late July, four months later
when the biopsy they required
as part of the trial was done
the surgeon said, once I
awoke from the surgery
that there was no evidence of the tumor.
It was literally gone, nothing.
And it's amazing.
I continued to go for treatments
for the rest of the two years
which is what the
clinical trial period is
because there was no reason
not to other than the travel
of course, I'd made all these
friends so that was fun.
But it was an insurance policy
I have Lynch syndrome,
that's a given, and I have...
Dr. O'Reilly and I talked
about it and she said
"Look, if you can do it, just keep going
"because there's no reason not to.
"You have a reason, with Lynch syndrome
"to try to stay involved with
this drug as best you can."
So I did.
But I will tell you
I feel I was cured of this
cancer by September, 2014
as did Dr. Diaz.
Right?
So I still go in for CT
scans every six months
in fact, my next one is this Monday
and I'll do that for the rest of my life
which is okay with me.
I know that I need to make sure
that I stay on top of whatever's happening
and there are no guarantees
but I can live with that.
I'm alive.
That's key.
And,
(audience claps)
thank you.
The professionals at Johns
Hopkins have become friends
and I look forward to seeing
them every time I go down.
I am not the only one
who had great results
from Keytruda in this trial.
Patients with melanoma and
colon cancer, MSI-High
were also given Keytruda
with excellent results.
That contributed to the
approval by the FDA of Keytruda
for use for MSI-High patients
and it's the first time
that a drug was approved
for really nonspecific
for where the cancer is
it's for the genetic characteristics.
So yours truly got a article
in the New York Times
with my picture, it was
really kind of funny.
But the point is that
we're living as the doctors have said
we're living in an amazing
time where things have happened
and are continuing to happen so quickly.
It's incredible.
In planning my talk today
I reacquainted myself with
a history of immunotherapy.
Dr. Coley and Dr. Old started
a process that continues today
in many different labs
and with many different
doctors and patients.
I do marvel at my good fortune
to be in the right place
at the right time, with the right people
and to show that anything's possible.
It really is.
You think you know what's going to happen
but you really don't, you don't.
There was literally no hope
for me when I was diagnosed
just a very determined doctor
who searched to find a clinical
trial that might help me.
And needless to say
Doctors O'Reilly, Diaz
and Lee, Dr. Young Lee
who was the other lead doctor
on the trial, are my heroes.
So in summary, these
past six and half years
have taught me an important lesson.
You think you know what will happen
but you really don't.
Assumptions can be dangerous.
Thankfully we live in a time
where the possibilities of
treating cancer successfully
have become greatly
enhanced, more will come.
I will continue to support
the work of medical research
especially with
immunotherapy as best I can
I hope you will too.
Here are my guidelines
should you find yourself
in a similar situation.
So clinical trial success depends on
specific characteristics.
If you're looking at
those, know what they are
and know what yours are, so
you can match, it's important.
Be educated.
It's a journey, explore all roads.
You never know when
there's going to be a road
that opens up.
It's true.
Become educated, but trust
and verify your sources
the internet is not your friend sometimes.
My friends made me swear not to be on it.
And my business is being on the
internet, so how about that?
It was like, "Don't you
dare go and look at that
"because there's a lot of
misinformation, so be careful."
Remember there are thousands
of people who are working
to help you.
Your experience is important
in ways you may never know.
I know that there are people
who I will never meet
never know, who have benefited as a result
of what happened to me.
That's great.
Persistence and positivity
does make a difference
and take control where you can.
I chose when I wanted to get my hair off
that was important to me.
It was some measure of control
because with cancer you feel
like you're out of control
everything's out of control.
I really had a wig for every
occasion, I really did.
I made a joke of everything but it helped.
So these are the amazing doctors.
I just want them to get call out here
because they are incredible.
Actually, Dr. Diaz is now
at MSK, which is my hospital
obviously, with my oncologist
leading some additional research
and I'm really excited about that.
I do a lot of fundraising
with cancer research
rare cancer research
through Cycle for Survival.
These are all places and ways
in which we can support this process.
Another great picture of my fabulous kids
but they know now that there's something
that could help them
because chances are
three of the four of them
are going to be facing this
at some point in their lives.
Think of this, because
of their Lynch syndrome
my 22-year-old daughter now
has to have colonoscopies
and endoscopies every year.
That's how it works.
Not that it'll necessarily catch it
as it didn't for me
but that's what we're up against.
And Joe, well, here's a
man who lived it already
and actually chose to stay
with a woman who he just met
who was then diagnosed
with this terrible cancer.
And I have to tell you, my friends
my own friends went to him and said
"We will take care of her.
"Nobody's going to fault you
if you want to back away."
Really, and he said, "No,
she's my friend. I'm staying."
That's a keeper.
(audience clapping)
And just because I got
to wrap with my grandson
because I'm that kind of grandma.
He's got his first tooth coming in
and I'm so glad I'm here to see it.
Thank you.
(audience clapping)
- Thank you Adrienne.
I am just tearing up over here.
That's... Whew.
Anyway, thanks for sharing
your story with us.
Also, just on a personal note
it was really nice to
hear you mention Dr. Old
who was the founding
Scientific and Medical Director
of the Cancer Research
Institute for many years
who unfortunately died from
prostate cancer a year before
or months before
the first checkpoint
blockade was approved.
It's such a cruel irony
but it is such a
wonderful legacy, I think.
so that’s also part of why I’m a little choked up right now.
so let's get some food, alright?
we're going to have lunch...
