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Finding Hope Abroad: Navigating Clinical Trials Internationally | The Eye Believe Podcast · The Eye Believe Podcast

0:03
hey everybody
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welcome back to the Eye Believe Podcast
0:06
I'm your host Danet
0:07
and I'm here with Shana who is from Canada
0:09
and guys
0:10
she is one of my absolute favorite people on the planet
0:12
so I'm so freaking happy you're here Shana
0:15
how are you doing today thank you for having me Danet
0:17
I'm really happy to be here
0:19
I'm doing great today I had good news and yeah
0:22
things are things are good right now
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okay so
0:26
to give you guys
0:26
a little bit of a background about Shana
0:29
Shana is currently a metastatic patient
0:31
living with stage 4 cancer
0:33
right she's also from Canada
0:35
and we're gonna talk about how that kind of
0:37
plays into her story
0:38
she's also been part of a couple of clinical trials
0:41
that if I'm remembering correctly
0:42
they both have been in the States
0:44
right you've traveled to come to the USA
0:47
for these clinical trials
0:49
so for those of you guys who are international patients
0:51
or if you're listening
0:52
and you know somebody who's an international patient
0:55
please please
0:55
please hit the share button
0:57
hit the like button
0:58
comment below which country you're from
1:00
because it's so important that
1:01
especially
1:02
the people that are running these clinical trials
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but they know there are international patients
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who want to come to the States
1:08
or vice versa right
1:09
if there was a clinical trial somewhere else
1:11
like in Germany and I wanted to go to it
1:13
I would want the people in Germany
1:14
to know hey
1:15
you need to make this as as simple as possible
1:18
for those of us who are trying to get to you
1:20
in whatever direction you're going
1:21
Shana
1:23
let's talk about your story
1:24
let's like
1:25
go back not to the crazy beginning
1:27
like not all the way
1:28
not I say crazy but
1:29
but not to like
1:30
all the way when your eye was diagnosed
1:31
because I know that there's just a lot to cover
1:34
but let's cover from metastatic journey on
1:36
so walk us through that summer that I'm gonna say was
1:39
like a summer from
1:41
from oh
1:42
it was not a pretty place
1:43
yeah um
1:45
that was a tough summer
1:46
so I actually had my MRI on June 5th
1:49
and any other Canadian listening
1:51
uh might know
1:52
public healthcare it sometimes takes a while
1:54
it took 15 days for me to get my report in my portal
1:59
and I happened to have an appointment with my doctor
2:02
that day of course
2:03
I open my I always open them ahead of time
2:07
I think some people do some people don't
2:09
but I want to know what I'm going walking into
2:11
so I opened it and then fell to the floor
2:14
that was I had one 0.8 centimeter lesion on my liver
2:20
so called my husband
2:22
and then we went into the appointment together
2:23
I've been handling these on my own
2:25
and then that one
2:27
we decided we needed to go in together
2:29
uh we talked about lots of things that day uh
2:33
of course
2:34
I needed a biopsy to make sure it was metastatic
2:36
but we knew
2:39
we knew it was well
2:40
and you you had a class 2
2:42
I mean did you have the castle test
2:44
or the biopsy showing that your
2:45
your eye was at the highest risk of metastases
2:48
or like
2:48
how did that work in from
2:49
from Canada so I was never offered the castle um
2:55
that genetic profiling
2:57
but because my eye was enucleated
2:58
they took it and did many
3:00
many things to it so I knew that I was BAP 1
3:04
and I knew that I'm GNA 11 and
3:07
uh
3:08
lots of the high risk factors
3:10
yeah and my tumor was big
3:12
I didn't I was never offered brachytherapy
3:15
I was only offered enucleation
3:17
so um
3:18
it wasn't great to begin with
3:21
but yeah
3:23
so so you guys knew that this was metastatic disease
3:26
you were pretty pretty solidly confident
3:28
going into that doctor's appointment
3:29
after seeing the scan results
3:31
yeah and we were even without the biopsy
3:34
yes and we walked in cause it's
3:37
the Canadian system can be very slow
3:39
I don't know how I managed to get a biopsy
3:42
later that week that's unheard of
3:44
uh yeah
3:45
so um
3:47
I think I got a cancellation
3:48
I was very active
3:50
and I've been very active in my journey
3:52
and pushing things forward
3:53
but we went in and said like
3:55
what are our options what am I looking at
3:58
I didn't even know my HLA status yet that
4:01
I think that took two to three weeks
4:03
for me to know what my HLA status was
4:06
um Tebentafusp is approved in Canada
4:08
so that was the one that they were pushing
4:10
if I was HLA positive if I was HLA negative
4:14
it was
4:16
we don't have immunoembolization
4:19
so it would have been
4:20
either ablation or surgical resection
4:23
was what we were looking at
4:25
um so we kind of continued
4:29
uh we went in and said
4:31
you know like
4:31
give us the options
4:32
we heard about some other trials that were starting
4:35
the TriSalus trial so this is 2023
4:38
July of 2023 so
4:41
there was the TriSalus trial
4:42
that was supposed to come to Canada
4:44
there was the uh
4:46
a TIL trial that was supposed to come to Canada
4:48
and then they also mentioned the F1O6C
4:52
which is now brenetafusp and tebby trial
4:57
um and that one kind of caught our ear
5:01
we heard uh
5:03
from my team that it would cost a lot of money
5:06
to come to the States to do something like that
5:09
so we kind of put it on the back burner um
5:12
because I wasn't I'm not
5:13
I wasn't willing to bankrupt my family to
5:16
for something that's not 100% or 90% or 80
5:20
yeah like
5:21
something that didn't have like
5:21
some solid numbers behind it
5:23
for sure yeah
5:24
you need
5:24
you need to be pretty sure that this is gonna work
5:27
before you're gonna spend the kind
5:29
of money they were talking about
5:31
so we kind of continued on uh
5:33
through the summer getting scans
5:35
biopsy uh
5:37
found out I was HLA positive
5:39
and then um
5:41
and then we were waiting
5:43
we were told that the trial was coming to Canada
5:47
I hate waiting
5:48
it was a lot of waiting that summer
5:51
so we we kept going through
5:54
through July and then I hit August
5:56
and I just remember being like
5:58
nothing's happened nothing's happened
6:01
I remember you messaging me
6:02
like you messaged me on Facebook
6:03
and you're like what is happening
6:06
is this normal like
6:07
did you have to wait this long
6:09
like you were beside yourself
6:12
well and so
6:13
and I I feel like I had a lot
6:15
I could go back and look but
6:17
I had a lot of scans in that six to eight week period
6:20
to the end of the summer and okay
6:23
yeah just
6:23
things were growing and they were growing fast uh
6:28
so I was panicking so I reached out and I had a
6:33
I reached out to Doctor Sato's office in Philadelphia
6:36
and he they took me to their like
6:40
round table and talked about it
6:41
and came back and presented
6:44
they thought that I should be eligible for like
6:46
immunoembolization direct to the liver
6:49
of course we don't have that in Canada
6:51
they also recommended
6:52
one of the doctors that they've worked with before
6:54
that is actually on my team here
6:56
looked at surgical resection
6:58
once we found out I had more than one tumor
7:00
I was like
7:01
no longer a candidate for surgery
7:02
I booked an ablation
7:04
and I was still waiting for the trial to come
7:07
so I waited about another week after that
7:10
and then I just started
7:11
then I reached out direct to the trial in Pittsburgh
7:16
at UPMC Hillman and I reached like
7:20
you know you go on the clinical trial dot gov uh
7:22
website and you find your trial
7:24
and then you find what location you wanna go to
7:26
and then you call or you email
7:28
and that's what I did so I heard from Doctor Luke
7:32
actually called me the next day
7:35
and that's unheard of in in my world
7:38
in Canada amazing
7:40
we don't we don't get that
7:42
so we talked briefly about it at the time
7:45
he mentioned the F1O6C trial
7:48
and also this Immatics trial
7:50
that he was more interested in putting me on
7:54
but I didn't qualify for that one yet
7:57
things were growing rapidly though
7:59
and September 20th
8:01
I had my ablation on the two largest spots
8:05
and they were now so from .8 in June uh
8:09
I believe
8:10
I was close to not being able to get an ablation
8:13
I was about 2.8 cm they were
8:16
they were pretty large compared to in June
8:19
they they were growing and yes
8:22
they ballooned I had
8:23
at that point I had uh
8:25
two and a third that was popping up
8:29
that was too small to ablate
8:30
at the time or the locate
8:32
I think it was the location by the
8:33
my gallbladder
8:34
that they wouldn't have been able to ablate
8:36
and I also had multiple focal lesions
8:40
so now we're in a space where that three month period
8:43
for me it yeah I'm
8:45
I'm full of it now you
8:47
you went from like you went from like
8:49
I have the one tiny lesion that
8:51
I remember you messaging me and I was like
8:53
okay Shana
8:54
don't panic like
8:55
it's gonna be okay you have one tiny lesion
8:57
and then the next couple weeks
8:58
you're like it's more
9:00
it's growing and I'm like
9:01
oh crap
9:02
like this is like
9:03
everybody's worst nightmare
9:04
in uveal melanoma to be honest
9:05
this is what the doctors talk about
9:07
like you know
9:08
you were you were
9:10
at least what I've heard from multiple doctors
9:13
you were kind of a classic case of metastatic
9:15
uveal melanoma where you had one lesion
9:18
and then very shortly later
9:19
it had grown and also had friends
9:21
and then all of a sudden
9:22
it set up camp and it was making babies
9:24
yep there was a lot
9:26
there was like
9:27
and it was doubling every time I had a scan
9:29
minimum it was like
9:31
and then each one that's so scary
9:33
especially when you're stuck in that spot of like
9:35
I'm just waiting nothing has happened
9:38
yep
9:40
so so you had the ablation though
9:41
and that didn't disqualify you from the F1O6C
9:45
F1O6C trial yeah
9:47
the F1O6C trial I was able to have an ablation
9:50
and still continue on that
9:52
so we hadn't gone down to Pittsburgh yet
9:55
because I have four kids and there was a lot going on
9:59
it was the start of school
10:00
so we um
10:02
we actually had booked to go October 9th
10:05
to go and sign and meet them
10:07
if I could talk to if I could
10:11
if I could give anyone any advice is don't wait
10:14
I
10:16
I shouldn't have waited
10:17
I should have gone down at the beginning of September
10:19
and signed I uh
10:22
I am so lucky and fortunate
10:24
and grateful that it worked the way it did
10:27
but I could have lost my spot
10:29
if there's a spot for you
10:31
and you're eligible for that trial
10:32
do not wait get there if you yeah
10:36
that would be my message on that one
10:39
OK so I
10:39
so that's super important
10:41
oh OK
10:43
uh so I uh
10:45
we signed for two trials that day
10:47
thinking
10:49
whatever I signed for the F1O6C tebby trial
10:52
uh the nice part was Tebentafusp was in Canada
10:55
F1O6C was not in Canada at the time
10:58
I knew I was in there for weekly infusions
11:01
we figured all that out and then I also
11:04
at the time so October 9th, 2023
11:08
I signed for uh
11:10
the Immatics trial that's it
11:13
put that in a little box pretend that that so uh
11:16
and then I started so wait
11:17
you hold on
11:19
you signed for the trial but you weren't on it yet so
11:23
right
11:24
that I must be the luckiest unlucky person in the world
11:28
because doing that signing October 9th
11:31
somehow of 2023 of 2023 is the
11:37
is the reason I'm on
11:39
is the reason I had Immatics at this point
11:41
from what I understand now
11:43
maybe that they had a slot in 2024
11:47
but I had also I had signed so
11:51
and that is 100% the team at UPMC
11:54
they want they wanted me to sign both
11:57
and I was like okay
11:58
I don't know what I'm I don't
11:59
I don't know what I'm doing
12:00
but if someone offers you to sign up for two trials
12:03
you just say yes that's my other advice
12:05
just sign up so we had uh
12:09
so then I started F1O6C and tebby in Pittsburgh and uh
12:15
we were traveling so the drive is 4
12:20
it says four and a half
12:21
but it's usually between five and six hours
12:24
and we were going uh
12:25
weekly so we have
12:26
I would leave on a Monday
12:28
have my treatment Tuesday
12:30
and then we would come home Tuesday night
12:33
so um
12:34
it was a lot and was this
12:37
so the the F
12:39
I'm saying it wrong F106C
12:41
F106C
12:43
they call it F106C as in the letter C
12:46
yep yep okay
12:48
I just want to make sure that I'm hearing it correctly
12:50
and also so that for our subtitles
12:52
it picks it up correctly so F106C
12:56
letter C yeah
12:58
okay
12:59
so you were going and were you going every week
13:02
yeah it's
13:03
it was weekly treatment same as tebby
13:05
OK yeah
13:05
cause I know tebby is weekly
13:07
yeah so it was every week we went uh
13:12
my kids and I ate uh
13:15
Christmas dinner at the get go
13:17
I don't know if anyone's in Pennsylvania
13:18
but uh
13:19
our favorite gas station
13:20
that was where we had Christmas dinner that year
13:22
because I had treatment on the 26th
13:25
so we got in the car after Christmas morning
13:27
and drove to Pittsburgh
13:29
so we I continued
13:31
and all along I'd still been told
13:33
that this trial was coming to Canada
13:36
there were going to be uveal melanoma spots in Canada
13:39
and that I would be able to just transfer back
13:42
I was told it wasn't like
13:44
it wasn't my responsibility to figure that out
13:47
it was Toronto team to figure out how to do that
13:51
it ended up being that Pittsburgh
13:54
they are magical
13:56
they started the process with immunocure
13:59
immunocure is amazing
14:00
and they ended up moving me up to Canada
14:04
in the beginning of February so I had
14:08
November December
14:09
January 4 4 ish
14:11
three and a half
14:12
4 months of travel every week to Pittsburgh
14:17
I feel like
14:17
we just know to let that sit and absorb for a minute
14:20
weekly travel like
14:21
driving for five to six hours with someone
14:26
and or your whole family
14:29
that's a lot it was a lot
14:31
I mean um
14:32
I I remember you were very
14:34
I mean you were
14:35
you were very committed to doing this
14:36
but I also remember you were like
14:38
I don't have time for anything else
14:41
yeah like
14:42
this is my life yeah
14:44
I would come home and it would be catching up my
14:48
I like we couldn't have done it my
14:50
without my in laws they were here
14:52
we celebrated birthdays in the hospital
14:54
like there was stuff
14:56
there was lots but um
14:59
I think you know
15:02
it was the best shot I had at that time
15:05
that was you know
15:06
it wasn't just tebby it was another chance
15:10
and
15:10
the numbers that were coming back from the trial were
15:12
like 50%
15:13
and I was like I gotta take it
15:15
that's a that's a pretty good efficacy
15:17
and so the 50% efficacy means it has a
15:21
you know
15:21
roughly a 50% chance of being solidly effective
15:25
um yeah right
15:26
like that's
15:27
I mean I know we could
15:28
we could get into the nitty
15:30
the nitty gritty
15:30
of breaking down some of the words around trials
15:33
um but
15:34
but that's kind of the layman's terms around efficacy
15:36
is how well does it work yeah
15:39
um and that's a
15:40
that's a hopeful number especially in uveal melanoma
15:43
I mean it'd be great if it was like 90%
15:45
but I don't know that we have very many options
15:47
that say that yet
15:49
we're getting there I think
15:50
I think we're coming but I think it's time
15:53
it's coming right
15:54
it's coming absolutely
15:55
it's so time oh
15:56
my god so time
15:57
OK so
15:58
I wanna just pause for a minute
15:59
before we move on past this point
16:01
so you've been on the trial for four months
16:03
it finally moved from the US
16:05
where you were required to travel
16:07
to come and have the medication
16:09
every week by the way
16:10
um which is not the case for every trial
16:12
some trials it's
16:13
it's different but for this unique trial
16:15
it was every week coming from Canada to the States yep
16:20
oh my god
16:21
um and then on
16:24
then on top of that then it was the waiting period
16:28
and the expectation
16:29
that this would eventually move to Canada
16:31
in Toronto
16:32
where you would have the chance to stay close to home
16:35
and how close like
16:36
to you how close is Toronto
16:38
even just going to that center
16:39
uh I refuse to drive in Toronto with one eye
16:42
so I take the train
16:44
it's about an hour and a half each way
16:46
for me to get there so
16:47
so I mean it's
16:48
that's still more travel than
16:50
than most people
16:52
if you live near a center of excellence
16:54
like close
16:55
you know we say close like
16:56
I live 40 minutes from my doctor
16:58
okay and I'm super lucky
17:00
I recognize that most people are not that lucky
17:03
but if you live close to a center of excellence in the
17:06
in the United States it
17:08
I feel like it's usually less than an hour at least
17:11
if you're like
17:11
actually so close it would be if I drove
17:14
but the traffic and when I
17:16
the train is so I refuse
17:17
OK that makes sense
17:19
yeah okay
17:19
so well so it eventually moved
17:23
yeah that's true
17:25
and so it eventually moved
17:26
the trial itself moved to Canada
17:28
which
17:29
did that actually make your life easier at that point
17:31
like how did
17:32
how did that feel when you were actually staying home
17:35
um so the trial didn't move to Canada
17:38
the drug moved to Canada with me
17:40
is what I understand oh gotcha
17:42
the drug moved but
17:43
the trial didn't
17:44
officially have other spots for other people
17:45
so they they opened the trial
17:49
but they opened it for ovarian cancer
17:51
so I think they were no long
17:53
I don't know what the status of that trial is
17:55
I haven't looked back to see where it's at now
17:58
but um
17:59
they had moved to
18:02
uh like
18:03
they had they had moved to ovarian cancer we um
18:07
in uveal
18:08
unfortunately didn't have access to it in anymore um
18:14
but I don't know how effective it is in uveal anyway
18:17
I think
18:17
they were seeing better results in other cancers
18:20
uh my travel time was almost the same
18:22
to be honest it funny
18:24
like my days were almost as long uh
18:28
every third so like
18:30
depending on the trial in Pittsburgh
18:32
they were amazing I would show up in the morning
18:34
I would get my blood work
18:36
I'd go for a walk I'd come back and I'd get treated
18:38
and you but
18:40
you know uh
18:42
depending on the time there was
18:43
you know
18:43
different wait times between different IV infusions
18:46
and all those things but eventually they were so fast
18:49
I would get you know
18:50
I'd be started and be out by noon
18:53
you know I started at 7:00am and I'm done by noon
18:56
and then we're on our way home
18:57
so um
18:59
Toronto we wait a lot
19:01
I they have a system where you wait with this pager
19:06
and the pager goes off sometimes after 15 minutes
19:11
come yeah
19:11
come when your table's ready
19:13
that it's exactly that
19:15
this is when your chair's ready
19:17
um it would be sometimes three
19:20
4 hours I would be waiting
19:22
and that's just a function of public healthcare
19:24
sometimes yeah
19:26
uh sometimes
19:27
I think it was because I needed a certain nurse
19:29
if they hadn't dealt with a trial before
19:32
like I needed a clinical trial nurse
19:33
cause I was in a chemo daycare is what they call it
19:36
so I was getting treatment
19:37
with all the other cancer patients
19:39
whether they're on regular chemo or trial or yeah
19:43
so it did get better for sure
19:45
we had from February until kind of my scans in July
19:49
and then things started going south again
19:52
so yeah
19:53
I remember that summer you were like
19:54
summer freaking sucks like why
19:57
why it's always summer why is it always summer
20:01
yeah my eye was removed in summer
20:02
my fat graft was in summer
20:05
my mets diagnosis we've had it
20:06
yeah it was all in summer yeah
20:09
ugh okay
20:10
so eventually this I mean
20:11
it did it did move
20:12
at least medication wise
20:13
you were able to have the treatment in Canada
20:15
for a time yeah
20:17
and that is a plus but it came
20:20
it sounds like it came more because of the US team
20:23
than it did because of the Canada team
20:25
or do you think there I mean
20:27
do you just not know for sure what the logistics were
20:29
behind the scenes I don't know the logistics
20:32
I do know that uh
20:34
the Canadian system is data driven
20:36
that's what my team has told me in Toronto
20:39
and so if there isn't a lot of data around something
20:43
which is anyone with a rare cancer
20:45
they aren't necessarily gonna push to get it to Canada
20:50
'cause if they only have five people on it
20:54
that's not gonna be where their focus or their goal is
20:57
so
20:59
uh unfortunately
21:00
I think that's where we stand in Canada uh
21:04
is a bit of an issue around uh
21:07
like we have Health Canada
21:09
and then there's another regulatory agency
21:11
and then each of the provinces has their own
21:14
like your states right
21:16
has their own healthcare
21:19
and because we're publicly funded
21:21
our healthcare is like Ontario
21:24
not Canada wide so yeah
21:27
I don't know how we fix so that
21:29
I mean I don't know how we fix it either
21:30
but it's it's like
21:33
it's like you're you're doomed if you do
21:35
and you're doomed if you don't
21:36
like because we
21:38
we as patients with a rare cancer
21:40
in the States or in any other country
21:43
we already don't have very much data
21:45
right and we're in the process of doing clinical trials
21:48
and there's you know
21:50
the few treatments that are FDA approved now
21:52
in the states
21:53
that are providing some extra data to drive
21:55
you know Kimmtrak and to drive Hepzato
21:57
like
21:57
those are the two main approved treatments that we have
22:00
that's it like
22:01
aside from you know
22:02
a microwave ablation
22:03
which is not unique to uveal melanoma
22:05
and arguably
22:06
some doctors don't even like doing ablations
22:09
or things like that because they're like
22:10
we can't prove that it works in uveal melanoma
22:13
and it's like well
22:14
you can't prove that much works in uveal melanoma
22:16
at this point so what do you have to lose here
22:19
other than to help a patient and give them hope
22:22
and isn't that such an important thing
22:24
being a patient and having hope
22:26
and I just I just want to illustrate or
22:29
or draw attention to the fact that
22:32
despite all of these things that kept happening and
22:35
you know stacking up against Shanna and her family
22:38
and for her care like you guys
22:40
she has had the most tenacious view of what she
22:44
and I like to call rebellious hope
22:46
like that I have ever seen
23:19
yes I know we gotta show our tattoos
23:20
let's show them so hers is all on her arm
23:23
and you can actually read hers
23:25
mine is backwards
23:25
but it says rebellious hope on my collarbone
23:28
um and
23:30
and that has been I mean
23:32
if we if we have you guys walk away from this episode
23:34
taking anything it's just this idea I
23:37
I think it's just this idea that it is possible
23:39
in the face of a lot of adversity
23:42
to have that kind of hope
23:44
so can Shana before we continue on your story
23:47
why don't you just tell us
23:48
what does rebellious hope mean to you
23:50
because I feel like
23:50
it's kind of a little bit of an abstract concept
23:53
it is and sometimes I have to like
23:55
Google to like
23:56
put it into perspective but like
23:59
I would call it just like
24:02
not giving up like
24:04
not sit in your hole I sit in a hole sometimes
24:09
but coming out fighting and like
24:12
not giving up we didn't
24:13
we didn't give up I
24:14
I am blessed and grateful
24:17
we have family who are so helpful and cause
24:21
I mean we could
24:21
we could not have done it without my in laws
24:24
and my sister
24:26
and my aunt is helping out financially a bit like
24:29
we couldn't have done it so it's a
24:33
yeah um
24:35
but it's that I don't
24:36
that rebellious hope of just not giving up
24:39
they my husband and I we
24:41
these were our first tattoos
24:42
my husband actually has a matching one
24:44
and uh we got them
24:47
we were in Toronto on a day where uh
24:50
when I met with a surgeon who said he would no longer
24:53
because of my MRI came back the sir
24:56
I was no longer eligible for surgery on my liver
25:01
and we walked out of Princess Margaret
25:03
and walked down Queen Street
25:05
and found this like
25:06
dive tattoo shop and went in
25:08
and we both got our first tattoos there
25:11
so yeah
25:12
I mean of that
25:13
well that
25:14
I mean
25:14
we had a horrible meeting and we walked out and it was
25:17
it ended up being such a good memory like yeah yeah
25:21
and to me that's I mean
25:23
that's the epitome of
25:25
that's the epitome of rebellious hope
25:27
I think that in that moment
25:29
your choice to go and and get this tattoo
25:31
was a literal middle finger to cancer
25:34
and to the situation
25:35
and to everything that was up against you
25:37
um and
25:38
and to your to
25:39
your point you said that
25:41
you know that it's
25:41
it's a lot about for you
25:44
it's a lot about not giving up
25:45
I think it's about not giving up even when you want to
25:50
like even when
25:51
like deep down
25:52
you're so defeated
25:54
and you're so frustrated by everything
25:56
that you're coming up against all of the obstacles
25:58
right because those obstacles don't just stop existing
26:01
because you choose to have this kind of
26:03
rebellious hope it's
26:04
it's literally that you decide okay
26:07
I'm climbing out of the hole
26:08
I'm throwing up the middle finger
26:09
and I'm moving on like
26:11
that is that is what I feel like
26:13
I've watched you do time and time again
26:15
and I wish that you had not had to do it so often
26:18
I know that we've talked a lot about the frustration
26:20
of just
26:22
how much more complicated and difficult this has been
26:24
because of your international status
26:27
and because of the lack of available options to you
26:30
in Canada like
26:33
and it's frankly like
26:35
numbers wise as far as I'm aware I'm
26:37
I'm pretty sure if we were to do a quick Google search
26:39
of how many people get diagnosed with UV melanoma
26:41
in the States versus in Canada
26:44
per year
26:45
I feel like we're about 250 to 300 a year
26:49
so yeah
26:49
like you guys are
26:50
you're right you're like a pin in the bucket
26:52
like a drop in the bucket
26:54
and that makes the aspects of public health
26:57
care that are already challenging
26:59
even more challenging
27:00
I hope we're not sounding like we're slamming
27:02
public health care
27:03
I'm sure that there are some unique benefits
27:05
to public health care but in the case of a rare disease
27:08
there's a lot there's a lot to come up against
27:10
in terms of trying to get care
27:12
and trying to get care
27:13
that's actually got a chance at helping you
27:15
especially for a disease that doesn't have many options
27:19
I mean it
27:19
we don't have anything curative at this point
27:21
at least not concretely across the board
27:23
um and so
27:24
you know we need these options
27:26
we need those trials and I um
27:28
I just I have
27:29
I have long admired your persistence in pursuing
27:33
finding what you felt the best about
27:35
but also choosing to participate in a clinical trial
27:38
because it's it's not an easy choice
27:41
call myself the lab rat for a long time
27:44
I don't feel like a lab rat anymore though
27:46
that's good okay
27:47
so we've paused we've
27:49
we've reflected but now let's resume
27:52
because the rest of the story is honestly
27:55
you guys it's probably one of the reasons
27:57
I felt like I could get up today
27:58
and be excited to talk to Shana
28:00
um especially in light of what happened for me
28:03
and in my community and in the local area that I live
28:06
yesterday and this week
28:07
so Shanna
28:09
you get to the the summer
28:10
you have scans and summer of 2024
28:13
these scans are not great
28:16
they're not great
28:18
so they're fine uh
28:19
originally the one tumor that I'd had left
28:22
so I had those ablations then I had small focal lesions
28:26
and then I had one that was
28:28
I think it was .9 at the time
28:31
when I was scanned in January
28:33
it had it they
28:35
now
28:36
I was getting scans at two different places sometimes
28:39
so there was measuring issues
28:41
that's always one of my that's
28:43
you know that's probably one of the harder parts
28:45
is you're never sure
28:47
and it had come down to .6
28:49
so I was like Hooray
28:50
it's working we're good
28:52
I had some scans in March
28:53
they were fine and then we came to my June scans again
28:56
and of course I now have
28:59
I'm seeing growth and they're seeing more lesions
29:03
and I'm you know
29:05
so I would have been right around the beginning of July
29:08
and I said like
29:10
I wasn't happy I'm like
29:12
this isn't gonna be long term now
29:14
like I can't
29:15
I don't want to stay on this for sure
29:18
I mean I could have probably stayed and had growth
29:21
we don't know what my what it would have looked like
29:24
but I was like well
29:25
I know the drill it's only been a it I
29:28
I didn't even get a year on it
29:29
I started October 30th so here I am in July looking so
29:34
um
29:35
I sat in my hole for a bit
29:37
like I like to call it
29:38
and then I got out and got my rebellious hope
29:41
you know plastered on
29:43
and I called Doctor Luke again at UPMC Hillman
29:46
and I was like I don't know if I'm still eligible
29:51
he called me actually
29:52
I was not having a treatment day
29:54
we chatted for a bit
29:55
in the summer
29:56
there were some changes happening with the IMA203
30:00
trial from what I understand
30:03
so we were kind of in a waiting period
30:05
but they knew that I was interested again
30:07
we needed to find out my prame status of the tumor
30:10
in my liver
30:11
I needed to go down and do leukapheresis
30:14
if anyone
30:15
that's where they take out your white blood cells
30:19
package them up and send them away
30:21
so I needed to go and get that done
30:23
so that's kind of where we started working
30:25
it was slow cause I didn't get
30:28
this is beginning of July
30:29
I got down to Pittsburgh for the first time um
30:33
middle of September so I went down
30:36
had my leukapheresis and
30:38
we were still waiting for the prame status of my tumor
30:42
so um
30:44
and this was the liver tumor biopsy
30:46
this is my liver tumor yeah
30:48
okay obviously it's your liver tumor
30:49
never mind your eye was enucleated
30:52
well they can still pull up my eye
30:53
it's sitting in a jar somewhere
30:54
I think but um yeah
30:57
so it's my liver tumor but it wasn't quite big enough
31:01
we had to wait for it to grow right
31:02
we're in this like
31:03
.9 isn't enough
31:04
so we're waiting for it to grow enough to get um
31:09
and I guess things happened uh
31:12
October 18th I went down to Pittsburgh
31:15
I'd had my scans in Toronto
31:17
and they did a biopsy by now
31:20
I have three or four lesions
31:23
they were uh
31:24
one was over a centimeter
31:25
and the other couple were
31:27
you know .8
31:28
.6
31:29
they took 11 core samples that day
31:32
in three different spots and I think it was the uh
31:38
they weren't looking at their MRI
31:39
they were looking at the Toronto MRI
31:41
they couldn't get it
31:42
and I remember the radiologist was amazing
31:45
he as I'm lying on my side waiting for it to be done
31:49
and he's like I'm so sorry
31:50
I couldn't get it they
31:51
I mean I
31:53
I don't know if this is your experience
31:55
but this is not a Canadian experience
31:57
in my room there was like
31:58
10 people when I'm going to get my biopsy
32:00
it was incredible there were nurses
32:03
there was the radiologist
32:05
there was another doctor
32:06
my research coordinator was standing there
32:08
and they had a pathologist in
32:10
that was looking at the cells
32:11
to see if they could see if they got
32:13
in real time in real time
32:15
I'm watching it on the thing
32:16
and I'm seeing the pathologist go no no
32:20
yeah like no
32:21
this is this is not cancerous tissue
32:23
yeah nice try
32:24
no try again yeah
32:25
oh so 11 tissue samples
32:27
and they didn't get it so that was a drive home from
32:31
that was a that was a very low point
32:34
what uh
32:36
I reached out to my uh
32:39
Toronto team and said
32:41
do you have tissue from the original biopsy you took
32:44
back in July of 2023
32:47
remarkably they did so uh
32:50
we ended up sending that tissue to Pittsburgh
32:54
but let's be clear
32:56
what should have been a week process took six weeks
32:59
because something got lost in the shuffle
33:03
uh so we're I
33:06
you know Pittsburgh is talking to Toronto
33:08
and I'm trying to talk to Toronto and Pittsburgh
33:11
and make sure that things are getting coordinated
33:13
and something happened
33:15
and it's my request that at first
33:18
six weeks on somebody's desk
33:21
so now we're at like November 18th
33:24
I believe um 30
33:26
November 30th maybe
33:28
and they get the tissue it goes to Texas
33:31
to the Immatics headquarters in the US
33:34
and thank goodness I was prame positive
33:37
so we booked to go uh
33:41
and start the trial December 27th
33:43
that was the earliest we could do it
33:45
I finished my last infusion of tebby and F1O6C
33:49
on December 16th and then um
33:53
kinda had a week off we had
33:55
we actually had Christmas uh
33:57
morning and dinner at my house
33:58
and then we left on the 26th to go down to Pittsburgh
34:01
so yeah
34:03
and then and then we did IMA203
34:07
you had a lot of waiting
34:08
especially in this particular period
34:10
I mean I know you had a lot of waiting lots of times
34:13
but in this particular period
34:15
you had a lot of um
34:16
I just remember you talking to me about this
34:18
and I was just like flabbergasted
34:20
like how
34:20
how could they
34:22
and you were so confused too
34:23
cause it was like
34:24
how could they have prame positive on this tissue
34:27
but then like
34:28
somehow they can't get it over here
34:29
like it just
34:31
it was just mind boggling but
34:33
but also like you said
34:34
it turned out to be a little bit of a gift that somehow
34:37
Toronto still had the sample stored
34:39
and that they could use that for the trial eligibility
34:42
that all panned out
34:44
I don't think I realized that you continued doing the
34:47
the F1O6C trial like
34:51
you continued doing that basically
34:52
right up to when you started Immatics
34:54
I do want to like
34:55
give a disclaimer here
34:57
the unfortunate thing about the Immatics trial right now
34:59
is that as far as we know like
35:02
I mean Shana
35:03
do you know are they still taking uveal melanoma patients
35:05
or were you one of the last uveal patients
35:07
to get on the trial for the moment
35:09
I was the last patient on the Phase 1 b trial
35:14
from what I understand I'm okay
35:16
I'm data point No. 33 in the world
35:19
um in the world
35:21
in the world
35:23
the lab rat status No. 33
35:25
the lab rat status continues the uh
35:29
from what I understand
35:31
is they are hoping to open for 30 uveal melanoma slots
35:39
but
35:40
I mean like
35:41
fingers crossed and everybody
35:43
everybody put it out there
35:45
okay so we are
35:46
we are excited about this for a good reason
35:48
like let's just
35:49
let's just give that out there
35:52
yeah uh huh
35:52
um okay
35:55
so the I will say while we're talking about that
35:58
so the actual like
36:01
IMA203 has now moved on to a phase 3 trial
36:04
and they chose to do it in cutaneous
36:06
and I've talked about it
36:07
I haven't talked about it with Immatics
36:09
but I talked about it with a few oncologists
36:12
and the reason is that
36:14
cutaneous melanoma has better options
36:17
for standard of care
36:18
so when you're in a randomized phase 3 trial
36:21
you want to have reasonable options for your people
36:25
that you're putting into it yeah
36:27
just that we don't want to end up with like
36:30
because uveal only has tebby really in the like
36:34
HLA positive or PHP depending
36:37
but for a systemic treatment
36:39
that's they have to randomize in
36:42
and they had to push it to cutaneous
36:44
because they're trying to keep people alive is my yeah
36:48
yeah
36:49
well which is a good reason
36:51
I mean it's frustrating
36:52
it is frustrating because it's like oh
36:54
they shut down the trial or
36:55
you know they didn't continue doing it for uveal
36:57
but it's also
36:59
at the moment
37:00
probably better for them not to do a phase 3 because
37:02
like you said phase 3 requires that comparative one
37:06
people like these people get the
37:08
for sure like
37:08
the drug the new drug
37:09
and these people get the standard of care and
37:12
and it's not great to have one that potentially
37:15
could work really great
37:16
but then have the other people get one
37:17
that might be a crap shoot like
37:19
well for them
37:20
it just depends like
37:21
it might work really really well
37:23
there's some people who respond super
37:24
super well to some of the immunotherapies right
37:26
Ipi Nivo
37:28
opdualag
37:29
and and even Kimmtrak
37:30
there's some people who respond well
37:32
and who have great stability or response
37:36
but there's a lot of people who don't
37:38
and that is one of the challenges
37:39
that we come up against in a phase 3 trial
37:41
for sure and the other
37:43
the other piece is um
37:46
at least in the the 1B
37:48
like a phase 1 trial they uh
37:51
needed to put like
37:52
you needed to have tried something
37:54
that was standard of care
37:55
so when I went in to
37:58
I was accepted in the phase 1 trial of the F1O6C
38:01
because it was Tebby plus something
38:04
so assuming you're gonna get the benefit of Tebby
38:07
and then also which is a standard of care option
38:10
okay so you checked two boxes basically
38:13
yep yep
38:14
and then so then when I moved on to the Immatics trial
38:17
I had already had a standard of care tebby
38:19
and it wasn't working so that's where yep
38:23
okay so what was this
38:25
I mean do
38:26
are you allowed
38:27
are you allowed to talk about this treatment
38:28
let's just momentarily double check that
38:31
are you allowed to talk about the actual treatment
38:33
that you had like
38:33
and like
38:34
what it was like yeah
38:37
I mean yes
38:38
it was I mean
38:39
it was amazing but
38:39
but I mean
38:40
just give us
38:42
we don't have to go into the major nitty gritty of like
38:44
how did it work all of that
38:45
I know you had you had the lympho depleting period um
38:48
where they they did chemo right
38:50
so maybe walk us through okay
38:52
you signed well
38:52
you had already signed you signed back in 2023
38:55
but you got to actually move forward um
38:58
at the end of December beginning of January of 2025
39:01
so now we're fast forward
39:02
it's been a year and a half
39:03
almost since your original metastatic discovery yes
39:07
is that right on the timeline yes
39:09
okay so walk us through the treatment
39:10
because you had the treatment
39:11
and it was not
39:13
it was not at all the same as your previous ones
39:15
you had no tebby and the
39:17
the F106C trial was weekly infusions
39:21
and this was very different
39:23
so walk us through that uh
39:25
so this one's uh yeah
39:29
super different I checked into the hospital uh
39:31
they told me
39:32
two to three weeks was what I was gonna stay
39:35
so you have four I had
39:37
so I was over Christmas
39:38
so I had four days of leukodepleting chemo um
39:42
which was fine honestly
39:44
it was I was still getting up and walking around
39:46
and we were just waiting for my uh
39:49
counts to come like
39:51
they had to go down to zero
39:53
and then on January 2nd
39:54
so I spent a fair bit of time alone
39:57
I sent my husband home and with the kids on like
40:01
I checked in on the 27th they visited me on the 28th
40:04
and then I was like you guys need to go
40:06
like they didn't need to stay
40:08
um so I was on my own there
40:11
and then he came my husband came back on the first
40:15
to be there for when my new cells came in
40:18
on January 2nd
40:20
that was a wild day so they did the lympho
40:23
they did the leukodepleting chemo
40:25
and the goal was to to have your like how
40:29
how do they have cells to give you
40:30
like where do those cells come from
40:32
oh so back in September
40:34
when I did my um
40:36
leukapheresis they take out the cells
40:38
the cells go they go to Texas
40:41
they modify them
40:42
I don't even want to attempt to discuss
40:46
what they do to them I just call them
40:47
they're my genetically
40:48
they supercharged them that's all they did
40:50
they supercharged those cells
40:51
yeah that's
40:52
we're gonna just say that it's fine
40:53
whatever they did I'm so thankful like yeah
40:57
so uh
40:58
and then they come back to you in the billions
41:02
so they've grown them so I had five or six bags
41:08
and I because I was on the phase 1 b trial
41:11
I was getting they kept escalating the dose
41:14
of what you were getting back
41:15
I think that it the IMA203 is now called Anzu-cel
41:20
like A N Z U dash
41:22
C E L um
41:25
as the drug they call it the drug
41:27
even though it's your own cells
41:29
um and so I had 8 billion cells put in
41:33
which if anyone makes me think of
41:36
so you were on the pretty high end then
41:38
of their dose escalation of like
41:39
how many cells are they gonna give you
41:41
like were you on the highest
41:42
that they were doing at that point
41:44
at that point I was the person that had the most
41:46
I think the person who went after me um
41:50
was on the phase
41:53
I think she might be 1B but she's cutaneous
41:56
so it's different the way they and she
41:58
it's very different I think may have stepped up again
42:00
yeah but I was
42:02
I had the most so
42:03
you got bags and bags of these cells
42:06
that were then administered in the hospital
42:09
um yeah
42:09
how long did it take I mean
42:11
was it one day it was a
42:13
I was a four hours
42:15
I think it was OK yeah
42:17
I and I
42:20
and nothing kind of happened
42:22
nothing happened yeah
42:23
you're just sitting there like
42:24
thank you yay cells
42:26
yay cells
42:27
and then uh
42:29
and then in the into the evening
42:31
stuff started happening like um
42:34
I was on interleukin 2 as well
42:36
like they give that to you
42:37
a couple of days after you have your cells
42:39
so like
42:40
muscle pain uh
42:42
just like I was so tired
42:44
to be honest
42:45
I think there's like a six week period in there
42:47
I don't remember much of anything
42:48
like how I was functional
42:50
um so I ended up
42:52
my neutrophil count came back up
42:55
faster than they thought it was going to
42:56
so I got released after two weeks uh
42:59
and came home I'm
43:01
was on a number of giant drugs that they keep you on
43:06
an antibiotic and uh
43:09
anti fungal and
43:12
and antiviral so I was on those for
43:14
depending on which one it was uh
43:17
some of them were three months
43:18
some of them were like 60 days
43:21
but a long time and then yeah
43:27
okay so you had all of this stuff happen
43:29
and I know that technically there's more like
43:31
and I unfortunately
43:32
I don't want us to like
43:33
go into the nitty gritty of some of the
43:34
more like
43:35
everything else that happened
43:37
because with what you had happened
43:39
essentially they amped up your immune system
43:41
like really really
43:42
really powerfully and so
43:45
you know the fallout from that was a number of various
43:47
different immune responses that you had
43:50
and those are good signs in an immunotherapy correct
43:53
like that you wanna have an immune response
43:54
because it means your immune system is turned on
43:57
and I am summarizing what I have Learned from doctors
43:59
so please don't take this as medical advice
44:01
please talk to your own doctors and ask questions
44:04
right that's
44:04
that's a really big thing about self advocacy
44:06
is ask questions
44:08
learn how these kinds of medicines work
44:09
if you're you know
44:10
contemplating any of these trials
44:12
that Shana has mentioned or others
44:14
so that's my disclaimer
44:16
but you had all this happen and you said it was about a
44:19
a was it actually
44:20
the full six weeks that you were expecting or no
44:22
you said it was two to three weeks of time
44:24
that they were going to have you in the hospital
44:26
and they released you a little bit earlier than planned
44:28
because your counts came back up
44:30
you went home you had a six week blackout period
44:33
somewhere in the mix of that
44:34
like combined or together
44:37
and you had various different symptoms
44:39
you kind of were dealing with the fallout of
44:41
I mean I
44:42
the literal fallout because
44:43
I know you had to deal with hair loss after the chemo
44:46
um that's one of the downsides to
44:48
to having any of these kinds of procedures
44:51
or these kinds of treatments
44:52
is that if you have a lympho depleting period
44:55
like TIL or like this trial
44:57
that you are gonna lose your hair
44:58
which I think is
45:00
is more commonplace to happen in cancer
45:02
and so then
45:03
when uveal melanoma patients don't have treatments
45:05
that that happens with then they're like
45:06
well what are they doing for you then
45:09
I know that you went through a lot right
45:11
you went through a lot in the
45:12
the waiting period from the beginning of January to now
45:15
here we are it's October
45:17
and you had summer scans and what happened this summer
45:21
because I feel like I remember this summer being
45:24
significantly better than previously
45:27
yeah so I uh
45:28
and now I'm on a three month scan protocol
45:31
and I went down in July uh
45:34
this would be the first summer
45:36
so this is our fifth summer with uveal melanoma
45:39
and we actually had a great summer
45:41
I went down in July and I had my
45:44
I think I had at the time I had a .5
45:47
two kind of .5 centimeter tumors left
45:50
that was it um
45:52
and you had previous scans after the trial right
45:54
so they had checked in multiple times before July
45:57
yep and so now I was 61% less cancer in my liver
46:02
uh well
46:03
and no other cancer overall
46:06
I just had scans middle of September
46:09
and I'm now 84% less cancer in my liver
46:13
cause that's where it all was anyway
46:15
so yay
46:16
and so that's I mean it's a
46:20
it's huge it's so hopeful
46:23
Castle Biosciences is a proud sponsor of this
46:26
Eye Believe podcast
46:28
Castle's innovative uveal melanoma tests
46:30
provide valuable information about the
46:32
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46:34
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46:35
individualize the management of your disease
46:38
to learn more visit Castlebiosciences.com
46:41
I talk about it with my therapist a lot
46:43
there's this weird um
46:46
I kind of feel a little bit guilty like
46:50
uh cause it's so good
46:52
and I feel for everyone else in the uveal melanoma space
46:56
who's dealing with like
46:58
if you're not HLA positive
46:59
you can't have this if you're um
47:02
you know like
47:03
if you're HLA positive but not prame positive
47:05
you can't have this like yeah yeah
47:08
so it's it's just like
47:10
it's this kind of guilt
47:12
and how to deal with it and feel um
47:16
like I'm so happy and grateful and thankful and
47:20
I mean there's lots more to my story um
47:25
but it does feel sometimes like
47:27
I don't always shout it from the rooftops
47:29
cause I don't want anyone else to feel bad
47:32
but I have to remember how I felt
47:34
when I would hear good news from other people
47:37
I always think good news is uh
47:39
worth sharing especially in our space
47:42
cause it does give everybody some more rebellious hope
47:45
yeah absolutely
47:47
well
47:47
and I was just talking with one of the other patients
47:50
who I'm actually gonna have her on the podcast
47:52
in a few weeks and she is a counselor
47:56
and she specifically focuses a lot
47:58
especially
47:58
in the times that she's spoken to our community
48:00
about grief and she talks about this idea that
48:04
you know well
48:05
really she just talks a lot about
48:06
the importance of honoring grief
48:08
and the grieving process of having a cancer diagnosis
48:10
not just the grieving of somebody you lose right
48:13
or somebody who passes away and
48:15
and she's been really good at articulating some of the
48:18
the grief that happens and the
48:19
the ups and downs that we feel as patients
48:21
and uh
48:23
I wanna talk to her about the importance of collective
48:27
or community felt grief right
48:30
that we we feel
48:31
we feel it when somebody who has uveal
48:34
melanoma passes away because they ran out of options
48:37
or their body just was was done taking to those options
48:41
like who knows what
48:42
whatever the reason for their passing away
48:45
we feel that loss as a whole community
48:48
whether or not you actually know the person
48:50
personally or not it doesn't seem to matter
48:52
like I think that we do feel it
48:53
and I I shared a post about a friend
48:56
who passed away this week
48:57
and I can't tell you how many
48:58
I mean there's
48:59
there's hundreds of people interacting with
49:02
you know posts and shares and just saying like that
49:05
that we are we are grieving
49:07
as you view melanoma patients
49:08
we're grieving that loss but on the flip side
49:11
I do find it so helpful and so important
49:16
that we also share in the collective hope
49:18
and I think that when people like you
49:20
Shana are able to share the good news when it happens
49:25
um that we then
49:26
as a community
49:27
get to share in that collective rebellious hope
49:31
for sure and that's
49:33
I mean that's
49:33
that's a gift but I understand
49:35
I understand the complexity of the okay
49:38
I'm doing well and somebody that I love isn't
49:41
it's it's hard
49:43
it's um
49:44
and I'm you know yeah
49:46
it's just managing that
49:48
so I've kind of taken on a little bit
49:51
trying to help some other Canadian patients
49:55
have access to things
49:56
because we don't have immunoembolization
49:59
we don't have Histotripsy
50:01
we don't have Delcath Hepzato
50:04
yeah yeah we don't have
50:08
we have very few options um yeah
50:11
I mean I know we all have few options
50:13
but this is yeah
50:15
so it's significantly more limited
50:17
for sure
50:19
yeah so
50:20
I mean an amazing thing happened
50:23
someone in Ontario got approved to get
50:26
Hepzato in
50:29
in Florida so that like
50:31
paid for by the government
50:32
which is amazing um
50:34
and so I think it's that whole
50:36
I hope as we move forward
50:39
more people start kind of making the headway
50:43
cause I I mean
50:45
I know other cancers people
50:46
who have gone to the states
50:48
to do clinical trials and things
50:49
but I think for us as uveal
50:51
we need to start like hey we're
50:53
we're here and like
50:55
we're not gonna get things well
50:57
we're not gonna get things to Canada
50:59
if we're not pushing the government
51:01
and like no hey
51:02
like look over here
51:04
we want these things too
51:06
that's something that I know that you have wanted to do
51:09
like you've wanted to advocate in that space um
51:12
like on a larger scale level
51:14
and just to make noise in Canada for uveal melanoma
51:18
you've wanted to do that for a long time
51:19
but dealing with everything
51:21
you've been dealing with side effects
51:22
all of the ups and downs with your own treatments
51:25
kind of never having a a break um
51:28
that it I mean it's
51:29
I just I want to emphasize to anybody listening
51:31
it's so important that if you're in that space
51:33
where you're in active treatment
51:35
you're dealing with a lot of the ups and downs
51:38
and the roller coaster
51:39
that is having a metastatic diagnosis
51:41
it is okay if you don't have the capacity to advocate
51:45
on a larger space for more than just yourself
51:48
but I would I would say
51:50
you know and Shana
51:52
you can correct me if I'm saying this incorrectly
51:55
but I would say that
51:56
now that you're to a point
51:58
that you have the ability to do that
51:59
that you find a lot of purpose and you find a lot of
52:03
um
52:05
I don't want to say satisfaction
52:07
but just that that you are driven and that your
52:10
your drive stems from the desire to help other people
52:13
so that hopefully there's more use
52:15
right there's more people like you
52:16
who are able to land in the right trial for them
52:20
and who get a solid treatment option
52:22
and who then also have easier access to
52:25
what is standard of care in the United States
52:27
for uveal melanoma
52:29
and I think that's a
52:29
that's a fight worth fighting for sure
52:32
and I mean
52:33
there was a lot of
52:34
there's been a lot of times where I mute uh
52:36
Facebook groups'cause
52:37
I can't handle the ups and downs of everybody else
52:41
I I
52:43
you know and I have to
52:45
even now even though I'm here and where I am here
52:48
there's still periods of time where I just can't
52:51
I can't put myself in that space because it's too hard
52:54
there's a triggering something
52:57
there's like
52:59
it's a lot but I
53:01
I would I mean
53:02
if we had to take like
53:03
one thing in this podcast and share
53:06
would be like
53:08
try just try
53:10
cause I think I think we're told by your team
53:14
it's gonna cost so much money
53:15
they're never gonna accept you
53:17
the you know
53:18
the barriers are too much
53:19
how are you gonna pay blah
53:21
like it just
53:22
it stacks up and I will say right now that I
53:27
although I paid for my travel
53:29
my uh
53:30
like food and hotel when I've been away
53:34
um I did not pay for thousands of dollars
53:39
I have a little
53:40
tiny pot of $5,000 that sits in a reservoir at UPMC
53:46
Hillman for whatever
53:48
I don't know that wouldn't even cover anything
53:50
but um
53:52
I mean I am getting my scans in Canada
53:54
now cause the sponsors are paying for those
53:56
but like I don't
53:58
I don't know
53:58
just don't let the fear of trying something or like
54:02
all these answers cause you just don't know
54:05
you don't you don't know what you might be able to get
54:09
like yeah
54:12
maybe no
54:12
I love that I think
54:13
like you said it's
54:14
and if there's if there's any good
54:16
hopeful way to end I think it's just um
54:20
maybe that we we also tie in the fact that
54:23
that trying
54:25
I mean that
54:26
that really is the definition of rebellious hope right
54:28
that you're you're trying
54:29
you're showing up even when
54:31
even when you're scared
54:33
um and even when you're being told
54:36
oh no
54:37
like all of these whether it's because of statistics
54:39
or
54:39
because doctors are worried about the logistics of it
54:42
like if you're being told
54:43
all these reasons why you shouldn't
54:45
I mean if there's some instinct in your
54:48
in your body and your brain that's saying no
54:50
I should push for this I should try that
54:53
it sounds like it's I mean Shana
54:54
you believe it's absolutely worth it
54:56
at a minimum to just try to push for what you want
54:59
and go from there
55:00
and adjust and pivot and change course
55:02
you know as it
55:03
as it comes up
55:04
but it sounds like the pursuit of getting care
55:07
even though you had to come to the States
55:09
and all of the
55:10
it sounds like the ways that you had to try to get here
55:13
were all worth it 1,000% I mean
55:18
I would do it again in a heartbeat
55:20
I would tell anyone to do it if like
55:24
yeah um
55:26
I mean I'm
55:27
I'm super lucky
55:28
I found the thing that's working for me right now
55:31
anyway and
55:32
but it was worth it all
55:36
and I missed a lot of time with my family
55:39
we we traveled a ton
55:40
my one car is not gonna make it much longer
55:43
but that you know
55:45
like small things right
55:47
it's we yeah
55:50
like I'm here now
55:52
and I feel good and you have the hope right
55:56
you have the hope for the future right now
55:58
and that is something you can't
56:01
you can't exchange that you can't
56:03
you know you can't say
56:04
oh well
56:05
having this now somehow wasn't worth it
56:07
it wasn't worth all of the things that it took
56:09
to get to this point it
56:11
it absolutely was worth it
56:12
was it also hard absolutely
56:14
and I think that's something that is
56:17
maybe
56:17
one of the unfortunate sides of international care
56:20
is that it will be hard but I can also tell you
56:23
even if you're staying in the place where you live
56:26
it's still gonna be hard there's a
56:28
there's a phrase of like
56:29
choose your hard
56:30
right choose the hard that makes the most sense
56:33
choose the hard that feels the best to you
56:35
choose the hard that actually
56:37
you know in
56:38
in your case has
56:39
has data and has information behind these trials
56:42
that feels like okay
56:44
that actually gives me a fighting chance
56:47
um choose your heart
56:48
I think is a good way to put it
56:51
totally I think yeah
56:54
I like that okay
56:55
choose your heart well no
56:56
I love it Shana
56:58
thank you so much for being here
56:59
thanks for chatting with me and for being um
57:02
not just willing to be a guest on the Eye Believe Podcast
57:04
but also for being who you are and um
57:08
and just being being the friend that you've been to me
57:11
um I could not
57:12
I could not have done
57:14
enucleation or metastatic disease
57:16
enucleation and metastatic disease
57:18
I could not have done that without you
57:20
thank you um
57:21
I could not have
57:22
have the weekly ups and downs that I have
57:25
without being able to message you and Brianne guys
57:27
I have my Canada besties like
57:29
Brianne and Shana are my Canada besties
57:31
I'm not gonna lie and we have all kinds of fun chats
57:35
and we send each other memes and
57:36
and the support even across
57:38
you know country lines
57:40
I feel it every day
57:42
and I'm so grateful that I have these women in my life
57:44
Shana thank you for being that person
57:45
thanks for being here thank you
57:48
like thank you for everything that you do for all of us
57:51
alright you guys
57:52
Shana again
57:52
thanks for being here
57:53
thanks for being a guest on the Eye Believe Podcast
57:55
and huge thank you to our sponsors
57:57
who make this podcast possible
57:59
we would not be able to do this without the support
58:01
and the funding from Castle Biosciences
58:03
Immunocore Delcath Systems
58:05
and Aura Biosciences
58:07
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58:08
or on our podcast channels
58:10
leave us a review do the comments
58:12
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58:15
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58:16
or just you know
58:17
whoever you might know and frankly
58:19
share with your doctors right
58:20
share these kinds of things with our doctors
58:21
because I think it's so important for the doctors
58:23
to see the patient side of things
58:25
and to understand our experience
58:27
um so thanks again for being here
58:30
thanks for sponsoring and thanks for listening
58:31
we'll talk to you guys soon