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Choosing To Be A Voice For Ocular Melanoma with Allie Dashow | The Eye Believe Podcast · The Eye Believe Podcast

0:03
okay everybody
0:03
welcome back to the Eye Believe Podcast
0:05
today I'm here with Alllie
0:06
and she is actually a repeat guest
0:08
and we've had her as a presenter
0:10
in the eye on mental health seminars
0:12
she was diagnosed with ocular melanoma in 2022
0:15
if you want to check out her full story
0:16
episode from the beginning of her journey
0:18
go to episode 45 on our podcast
0:21
but she is back again
0:23
and we're gonna be talking a little more
0:25
about being a patient advocate
0:27
in the world of ocular melanoma
0:29
and specifically in the world of cutaneous and like
0:31
just the larger melanoma world
0:33
like what can you do
0:34
as a patient advocate for our rare cancer
0:37
Allie's a perfect example of this
0:38
so Allie
0:39
thanks for being here thank you for having me
0:41
okay so just quick context for anybody listening
0:43
ocular melanoma is super rare right
0:45
and so people like Allie are really
0:48
really rare because
0:50
ocular melanoma
0:50
tends to affect an older generation of patients
0:53
most of the people demographically
0:55
who are diagnosed with ocular melanoma
0:56
are going to be patients in that kind of
0:58
older category above the age of
1:00
and I say this lovingly but like
1:02
just above the age of I think 50
1:03
60 and we don't fit that
1:06
you know that cookie cutter diagnosis
1:08
we don't fit that mold so to speak
1:10
Allie how old were you when you were actually diagnosed
1:13
I was 26 years old okay
1:17
and I know like
1:18
I was 28 so like yeah
1:19
again we don't fit the cookie cutter like
1:21
this is what OM looks like
1:22
so Allie
1:23
let's just kind of give everybody a brief recap
1:26
talk about um
1:27
you know the beginning of your diagnosis
1:28
and then just fill us in on where you are today
1:31
over three years later right
1:32
yeah sure
1:34
um so
1:34
like you said I was diagnosed in June of 2022
1:39
just a couple weeks after I graduated
1:41
from my doctoral program in clinical psychology
1:44
so that was the last thing I expected
1:46
I thought I was gonna graduate and go into the field
1:49
and really start living my life
1:52
so the diagnosis was certainly a shock
1:55
um I did have symptoms
1:56
I know most people don't
1:57
I had intermittent shooting pain in my left eye
2:00
I was treated by Doctor Paul Finger
2:04
just a few weeks later with plaque radiation therapy
2:07
since then these past three years
2:10
on one hand have felt really long
2:11
and on the other hand sometimes I'm like
2:13
how has it already been three years
2:15
since I was diagnosed in some ways
2:16
it feels like just yesterday
2:19
kinda crazy yeah
2:21
it it goes by so
2:22
so quick but also time moves slow
2:24
it's it's weird thing with time and thinking about
2:27
I guess updates and how things have shifted since
2:31
so I undergo my surveillance scans
2:34
my MRI for my liver um
2:37
cat scan of lungs to make sure it hasn't spread
2:40
so I have those every couple months
2:41
and about a little over a year after I was diagnosed
2:46
I developed radiation retinopathy in my eye
2:50
um and when I was first diagnosed
2:51
Doctor Finger said I had I think
2:54
slightly less than a 50%
2:56
chance of developing radiation retinopathy
2:58
based on the dosing
3:00
and where the tumor was located in my eye
3:02
and he said typically people develop it about
3:05
on average two years after diagnosis
3:08
so I was actually
3:08
kind of surprised to have developed it so early on
3:12
so since then
3:12
I've been getting Anti-VEGF injections in my eye
3:17
I currently go every five weeks
3:19
I always say even though the injections are not fun
3:23
my retina specialist office
3:24
they have a snack cart with a bunch of snacks
3:27
so that's the one thing that makes it
3:29
I don't want to say worth it
3:30
but doable
3:32
doable yeah doable
3:33
bring the snacks we
3:34
we definitely need more snacks
3:35
everybody who's a doctor listening
3:37
please take this into consideration
3:38
more snacks please
3:40
yes please
3:41
haha
3:42
makes such a difference
3:43
so thankfully my vision is still pretty good
3:46
the injections definitely seem
3:48
I think to be slowing things down
3:50
because in the beginning
3:51
when I was diagnosed with the radiation retinopathy
3:53
I believe I had swelling in my macula
3:56
I had some cotton wool spots
3:57
some other symptoms
3:58
but right now all is looking good
4:00
um so
4:01
I'll definitely continue with those injections
4:03
every couple weeks and the other
4:06
I guess big part
4:07
of I feel like this journey over the past three years
4:10
was that a little less than a year ago
4:14
there was a spot that was on my liver
4:16
and they informed me
4:19
that they didn't think it was metastatic cancer
4:23
but rather just like a benign spot on my liver
4:26
but then on the next two scans
4:28
it grew
4:30
and so they were still pretty confident
4:31
that it wasn't anything to be concerned about
4:33
but especially because it was growing
4:36
um we wanted to
4:37
that was scary yeah absolutely
4:40
um so they wanted to dot their Is
4:41
cross their Ts which I certainly appreciated
4:43
and so
4:44
I went in to get a biopsy of that spot in my liver
4:49
however they weren't able to do it
4:50
because it's an ultrasound guided biopsy
4:53
and they weren't able to find the spot
4:55
which I think sometimes happens
4:57
and so basically after going back and forth
5:00
I was possibly gonna go to a different doctor um
5:03
to see if they could do the biopsy
5:05
but essentially
5:07
my team ended up deciding
5:08
that they could do some sort of
5:10
nuclear scan I'm forgetting the name of it
5:12
on my liver it's a scan that
5:15
from what they told me they don't typically do anymore
5:17
in general I think
5:18
it's usually used to be used
5:19
for other liver related diseases
5:21
but they thought it'd be helpful to use
5:23
to see if the spot lit up
5:25
in the same way it typically would
5:27
if it was metastatic and thankfully
5:29
it didn't um
5:30
so little bit of a jump scare there for a couple months
5:34
I think that that whole process was like
5:36
2 ish months
5:37
long time to be in limbo
5:39
and very grateful that it wasn't metastatic cancer
5:44
yeah no absolutely okay
5:46
so during that jump scare
5:48
as you called it
5:49
what were like
5:49
some of your big thoughts and emotions
5:51
cause I mean
5:52
three years into this not even three years right
5:54
because this was last year
5:55
so you were closer to two years into this
5:56
you were yeah
5:57
what 28 maybe yeah
5:59
and you're experiencing
6:00
the possibility of metastatic disease
6:02
like I mean
6:03
I know we've talked a lot about
6:05
your background as a psychologist
6:06
and your ability to kind of like
6:08
use the skills that you have as a psychologist to like
6:11
think about your diagnosis
6:12
but I also know that even when we have the skills
6:15
sometimes in the moment it's really hard to use them
6:17
so what I mean
6:19
what were some of the things that helped you in the
6:21
the first kind of moments when you thought okay
6:23
like we don't know what this is
6:24
and we've got to figure it out
6:26
and we also don't have definitive answers
6:28
for this period of time
6:29
initially I remember being in my oncologist office
6:32
and when he said
6:33
that we should get a biopsy done of my liver
6:37
in my mind I was like
6:38
oh crap
6:39
like this is a big deal
6:40
this is serious
6:42
and I remember having a pit in my stomach
6:44
and to be honest in some ways
6:47
like that month and a half
6:49
two months feels like a blur
6:51
in a way
6:51
it's hard to remember
6:52
everything that I felt and experienced
6:55
I think
6:55
the first couple days were the most anxiety provoking
6:59
I think once we had a plan to do the biopsy
7:04
that really put my mind at ease
7:06
I think for me it's like
7:08
as long as I know I'm doing something
7:10
or in the process of doing something
7:13
I think that makes me feel more in control
7:15
um which makes sense
7:16
and so I think for those first two weeks
7:20
little bit of up and downs
7:21
like moments of oh
7:22
my god is this real life
7:24
this has sort of of course
7:25
been my biggest fear it's everyone's biggest fear
7:27
when they're diagnosed with ocular melanoma
7:30
part of me though
7:31
I think felt a little bit at ease
7:33
because my oncologist wasn't all that concerned
7:36
he was pretty confident that it was benign
7:38
and so I one of the things that I think
7:40
helped me was reminding myself
7:42
like based on the information I had
7:45
just based on the facts like
7:48
the odds were in my favor
7:49
right if my oncologist is saying like
7:50
I'm not too concerned
7:52
then I'm gonna do my best not to catastrophize um
7:56
and assume the worst
7:58
so I think one of the things that helped me
7:59
was just reminding myself okay
8:01
I'm gonna take my doctor's lead
8:03
Doctor Carvajal my medical oncologist
8:05
is someone who I really trust
8:07
um and I know he had shown my scan to the tumor board
8:41
I think
8:42
whenever my mind started to go to worst case scenario
8:46
I think reminding myself that like
8:48
we're not there yet like if
8:50
god forbid
8:51
we get to doomsday prep exactly
8:54
exactly right
8:55
so like
8:55
if we get to that place I will like
8:57
once I need to worry I will worry
8:59
and for now I will still worry at times
9:02
but I'll try and just like
9:03
ground myself in I guess
9:05
reality of just like
9:06
right now like
9:08
as far as I know I am okay
9:10
um yeah
9:11
for sure like
9:12
the facts these are the facts
9:13
and when we have the facts
9:14
and we confront fear with the facts that
9:17
that makes a big difference
9:18
I think and just our
9:19
probably in
9:20
just our mental capacity to handle
9:21
whatever uncertainty has been placed before us
9:24
because uncertainty comes up a lot with ocular melanoma
9:27
yes most definitely
9:30
and so once I went in for the biopsy
9:32
and then they weren't able to do it
9:34
the worry came back and I was like
9:35
oh my gosh
9:36
what are we gonna do next
9:37
and I remember considering
9:41
like I mentioned
9:42
going to another doctor in Philadelphia um
9:45
I believe Doctor Orloff
9:47
to try and do the liver biopsy
9:50
but I was going back and forth with my oncologist
9:53
and the surgeon and all of these people
9:55
I remember getting different phone calls
9:56
speaking to doctors on the phone
9:58
and ultimately they said
9:59
it's up to you what you wanna do
10:01
but we think doing this nuclear scan
10:03
could really rule out um
10:05
metastatic spread
10:07
so that's ultimately what I decided to do
10:09
but I remember
10:11
when the doctors put the decision in your hand
10:13
which technically
10:14
as a patient right
10:15
we always have the agency to choose what we want to do
10:18
but when you're told like
10:19
you get to make this decision
10:21
and there's multiple
10:23
lots of pressure yes yes
10:25
so much pressure I remember thinking like okay
10:28
I don't know what decision I'm gonna make
10:30
and then
10:30
once I made the decision to do the nuclear testing
10:33
of course there's that part of your mind that's like
10:34
well what if
10:35
what if I shouldn't do this
10:37
and I should go for the biopsy
10:39
what if this somehow misdiagnoses me
10:42
so I think I really had to learn to just like
10:44
sit with that uncertainty
10:45
I think like
10:46
one of the biggest things I've Learned
10:47
since being diagnosed is that like
10:50
medical diseases cancer
10:52
things are not so black and white right
10:54
it's like
10:55
even you could take 100 people with ocular melanoma and
10:58
like their symptoms might be different if it spreads
11:01
what that looks like
11:02
the treatments that you are eligible for
11:04
all of these things um
11:07
differ so vastly based on the person
11:09
and so recognizing that like there
11:11
there isn't always one right way to do it
11:13
oh absolutely okay
11:14
so obviously younger population of ocular melanoma
11:19
what are some of the misconceptions that people
11:21
you come across in advocacy
11:23
just in online spaces in your personal life even
11:26
what are some of the misconceptions that people have
11:28
about ocular melanoma
11:30
and just you having ocular melanoma
11:33
like kind of
11:33
some of the myths that you have to bust about it
11:36
yeah I
11:36
I guess the first myth is that it's not a big deal
11:41
right I think because you can't see it
11:44
or we might not go through chemo and
11:47
you know you might still have your hair
11:49
whatever it might be
11:50
the fact that you can't necessarily see
11:52
those physical changes
11:53
I think people can often minimize um
11:57
what it means to have ocular melanoma from other people
12:00
but then also when I was initially diagnosed I
12:01
I at first didn't really understand the gravity of it
12:04
so I think that's definitely the biggest one
12:06
I think the next piece is people thinking that like
12:11
once the tumor is treated
12:13
you're good to go um
12:15
again I think that was a myth that I also had
12:17
when I was first diagnosed
12:18
and so I try to not judge other people
12:21
who don't know these things
12:22
because
12:22
there was so much I didn't know before I was diagnosed
12:25
and it's definitely frustrating when people assume that
12:28
you're fine everything's fine now
12:30
and in fact like
12:31
for me I think
12:33
the harder piece of this journey
12:34
is not the first month or two
12:36
where you're getting a diagnosis
12:38
and you're doing treatment to kill the tumor
12:40
but it's the aftermath of
12:42
is it gonna spread is it not for
12:45
you know
12:45
a type of cancer that has a high rate of spreading
12:47
right that
12:48
that thought always or I don't want to say always
12:51
but often crosses your minds or even as time goes on
12:55
right correct me if I'm wrong
12:56
years two to five or three to five tends to spread
13:01
yeah it's
13:02
I mean yeah
13:02
for sure that kind of two to five range
13:04
or two to five year range
13:05
after the initial diagnosis is the most common
13:08
like segment of time that
13:10
that I think the
13:11
I mean we
13:11
we actually you know
13:12
stay tuned we might have some updates to that
13:14
from the COOG2 study soon that should be coming
13:17
coming soon so stay tuned for that
13:20
because we
13:21
may have a little bit more hopeful data around that
13:23
but yeah
13:24
the I mean
13:24
the statistic I was given
13:26
or the the years that I was given
13:27
was within two to five years of diagnosis
13:29
with a high risk diagnosis
13:31
which is what I had
13:32
and I know like with you
13:33
you didn't have the biopsy right
13:34
because of the location yeah
13:36
I wanted to get the genetic testing
13:38
but unfortunately wasn't able to
13:39
yeah
13:40
and so they're treating you because they don't have
13:42
they have to treat you
13:43
as though you're as high risk as they can
13:45
treat you just to be on the safe side
13:47
which is why you have scans more frequently than
13:49
than some people with a tumor the size that you had
13:53
tend to have
13:53
I mean I think it's incredible
13:55
like seeing and and just witnessing
13:57
you balancing life with managing your diagnosis
13:59
you mentioned having those injections every five weeks
14:03
how much of a disruption to your daily life is that
14:05
at the moment
14:06
in a way I think the nuisance of having it so often
14:10
and having to take time off of work
14:11
is worse than the actual injection itself
14:13
because yeah
14:14
every five weeks I'm moving my schedule around
14:16
taking time off of work
14:18
as most people know
14:19
if you go to a retina specialist office
14:21
you better plan to be there for at least two hours
14:24
on a good day
14:25
so you're also there for quite a bit of time
14:28
hence the snacks yes
14:30
hence the snacks hence the snacks
14:32
and then also just like
14:33
the discomfort afterwards
14:34
I have certain injections that go pretty smoothly
14:36
and I feel good
14:37
and others where I don't feel so good after
14:40
or the next day
14:41
so yeah
14:42
I think every time I see on my calendar a reminder like
14:45
oh I have my injection in a week
14:47
I'm always like wow
14:48
it's already been five weeks
14:50
and then there's the other part of me that's like
14:51
oh my gosh
14:52
I have to do this indefinitely
14:55
and I actually
14:55
recently had a conversation with my retina specialist
14:59
just around the fact that like
15:00
one day when I do wanna become pregnant
15:02
I'll have to stop the injections
15:04
because they're not safe to do while
15:06
you're pregnant
15:06
and so more recently I've just thought about
15:08
you know what's that gonna be like
15:10
and how much might the retinopathy progress
15:13
during that time
15:14
yeah no
15:15
I mean that's gotta be a
15:16
I mean that's a lot
15:16
that's a lot to think about
15:17
as a patient living with ocular melanoma
15:20
who is in that kind of younger community
15:22
that's actually something I was gonna ask you about is
15:24
like what
15:24
you know what kinds of questions have come up for you
15:27
with future fertility or
15:28
just the ability to feel like you're safe
15:30
to have a baby like
15:31
if that is is something that you're looking forward to
15:33
in your future yeah
15:35
I definitely want to have kids in the future
15:37
and I do think about that as well
15:40
not being able to do the same types of scans I do now
15:43
when you're pregnant because it's not safe
15:45
and worries about you know
15:48
the the retinopathy progressing
15:50
sometimes even thinking about okay
15:51
like if my vision significantly worsens
15:55
by the time I have a baby
15:56
I have this this vision or this image
15:59
I should say a lot in my head of like
16:01
you know I'm
16:01
let's say in the kitchen
16:02
and my toddler is crawling to the left of me
16:06
and I can't see them right
16:07
and there's a step
16:08
or they're doing something that could harm them
16:11
of just you know
16:12
I think natural worries of what will that be like
16:15
and hopefully maybe my vision
16:17
you know won't progress that quickly
16:19
but I think
16:20
I guess more specific questions that come up for me
16:23
that no one really is able to answer is right
16:25
like
16:25
how much will it progress when I stop the injections
16:28
for those nine months right
16:30
and then also wondering you know
16:32
you know there
16:33
there isn't so much research
16:34
as to what ocular melanoma looks like
16:38
in a patient who's diagnosed so young
16:40
right because if
16:41
if you take the the average age of
16:44
let's say 60 years old right
16:46
unfortunately for most people
16:47
but most people aren't here
16:49
by the time they hit 100- 40 years later right
16:51
and I hope to be here in 40 years
16:52
and just like wanting to know what the research is
16:56
but I don't think there is any of
16:57
like in terms of eye health
16:59
in terms of also risk of metastatic spread
17:04
there is some research
17:06
but because it's such a rare cancer
17:08
and there's so few younger people
17:10
um right
17:10
there's just there just isn't as much information
17:12
as to what could potentially happen 20 30
17:15
40 50
17:15
60 years down the line no absolutely
17:19
okay so let's switch gears a little bit um
17:21
and let's talk a little more about
17:22
what drove you to participate in
17:25
more kind of a
17:26
an advocacy role
17:27
was this something that came up
17:28
because of talking to your doctor
17:29
Doctor Carvajal
17:30
was it just because somebody approached you online
17:32
like how did you get involved
17:34
with the larger melanoma community
17:36
as a voice for ocular melanoma
17:38
yeah good question
17:39
so when I was first diagnosed
17:40
I think literally 12 hours after being diagnosed
17:44
I joined all all the Facebook groups
17:47
for patients with ocular melanoma
17:49
um and at that time
17:50
I was just I probably connected with you at some point
17:52
I don't remember when I connected with Clay Butler
17:55
who had sadly passed away
17:57
um I connected with a few others
17:59
who gave me a lot of support and guidance
18:01
about a year later
18:04
I went on a retreat wilderness trek
18:09
through a non profit called True North Trek
18:12
and they provide wilderness treks for young
18:15
adult survivors of all cancers
18:17
fully paid for
18:18
and so when I went
18:19
it was specifically a weekend for people with melanoma
18:23
um so everyone else had cutaneous melanoma
18:25
who went on the trip I had ocular
18:27
and that trip was actually being co sponsored
18:29
by the Melanoma Research Foundation
18:32
so a woman named Miriam Kadosh was there
18:34
representing the MRF the Melanoma Research Foundation
18:37
and from there I realized
18:40
how much I wanted to get involved in the community
18:42
to spread awareness
18:43
find other people to feel less alone in this journey
18:46
and I ended up going to their gala a couple weeks later
18:51
alongside someone else who I met on the retreat
18:54
so every year
18:54
the Melanoma Research Foundation has their annual gala
18:57
they have one in Denver and New York City
18:59
to raise awareness and money for research
19:02
education etcetera
19:04
so I went to that gala um
19:05
which was a really really cool experience
19:08
and after that
19:09
I got involved with the Melanoma Research Foundation
19:13
in regards to ocular melanoma
19:14
so they put on an ocular melanoma symposium once a year
19:18
so I went last year and the year before
19:20
or this year and the year before
19:22
was on the planning committee as well and that was really
19:25
no pun intended an eye opening experience
19:27
to finally meet other people with this cancer
19:31
um most people were
19:32
I would say over the age of 50
19:33
I don't think there was anyone under the age of 40
19:36
if I'm remembering correctly
19:37
so on one hand a little bit frustrating cause it's like
19:40
ugh
19:40
it's so hard to find someone who can relate at this age
19:44
but at the same time
19:45
it was still really special to meet other people who
19:49
you know have gone through something similar
19:51
and so my hope
19:52
moving forward
19:53
is to continue to be involved in whatever way I can
19:56
sometimes
19:56
I feel like I don't have enough time in the day
19:58
but I I really want to continue prioritizing
20:01
being involved in the community
20:02
and with advocacy as well
20:04
yeah for sure
20:05
well and like
20:06
I mean I know we said this at the beginning as well
20:08
but Allie has also come on for our eye on research
20:10
foundations
20:11
and she's provided a patient slash expert opinion um
20:15
just in the the realm of mental health
20:17
with her role as a psychologist
20:18
so she's been able to serve our like
20:20
specific ocular melanoma community
20:22
in the A Cure In Sight Group
20:23
but it's been really neat to see you just kind of
20:25
branch out and show up to the spaces where melanoma is
20:29
not mostly ocular melanoma
20:31
and that you kind of have to be like hey hey
20:33
don't forget about us um
20:34
like don't forget about us
20:35
we're still important like
20:37
we exist
20:37
but being part of a broader community
20:39
like being part of the the panels um
20:42
they get to kind of decide how do these symposiums happen
20:45
going to these retreats going to these galas
20:46
like how has that helped
20:47
you do you feel like as a patient
20:49
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20:53
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21:07
I think in a few ways
21:09
I think the first is through the symposiums
21:13
through meeting other patients
21:15
I think just hearing about other people's journeys
21:18
their approaches that they're taking
21:19
or their doctors are recommending they take
21:22
I think it just allows me to
21:24
gather more information for myself
21:26
and make more informed decisions about my care
21:29
I think that that would be the first piece
21:31
I think secondly
21:34
again just being able to meet other people
21:36
who have gone through this
21:37
who can relate in some way
21:39
um I think there's just that like
21:41
unspoken connection that you have um
21:44
and there's something really special about that
21:46
and it definitely makes me feel less alone
21:50
in being able to talk to other people who get it
21:52
you know all
21:53
all cancers suck um
21:55
but but one sucky part about this cancer is just that
21:59
you know there's so few of us
22:01
there are so few of us
22:03
and it makes the journey more lonely and
22:06
I think just more um
22:08
overwhelming because there's less of us
22:10
there's like we said
22:11
there's less information there's less people to talk to
22:13
there's less research less awareness
22:16
I'm I'm a big people person
22:17
I love to socialize
22:19
so I think it just offers me a lot of comfort
22:21
and also it's just like
22:22
joy to be able to connect with other people
22:25
I love that okay
22:26
so
22:27
I'm kind of excited for you to get to share about this
22:29
because um
22:30
one of the things that you recently shared
22:31
on your social media was uh
22:33
what I would consider kind of a big win
22:35
for somebody in the ocular melanoma advocacy space
22:38
and I guess there were a couple of different things
22:40
do you want to tell us about the most recent things
22:41
that have happened with the article
22:43
and then the award that you're going to be receiving
22:45
sure
22:45
the Daily Mail interviewed me last month
22:48
the article went live about a week or two ago
22:52
and the Daily Mail did an article
22:54
asking me about my journey
22:56
and
22:57
they did this with the hope of raising more awareness
23:00
and education around this cancer
23:02
so that was really cool
23:03
never expected that to happen
23:05
never expected to see my face in the Daily Mail
23:07
but I'm really excited for that to be out there
23:10
because I think for most of us
23:12
we never heard about this cancer
23:13
before we were diagnosed
23:15
so I I hope that more people can be aware
23:17
and of course
23:18
get getting your yearly eye dilated exam
23:21
that's the only way that
23:22
that ocular melanoma can be diagnosed
23:24
so that was a really cool experience
23:26
really exciting
23:28
and then next week
23:29
The Melanoma Research Foundation
23:30
is having their annual gala
23:32
and I am being honored
23:34
and given the Courage Award this year
23:36
which is super exciting
23:38
I got the email maybe like
23:40
six months ago
23:41
and I remember opening it and being shocked
23:43
I was like oh
23:43
my gosh they are honoring me
23:45
this is quite crazy
23:47
did not expect that at all
23:48
so I'm excited to be there with my family
23:51
my medical oncologist will be there
23:53
and yeah
23:53
I'm I'm stoked
23:54
I think it'll be a really nice night
23:57
very very meaningful
23:58
and you know
23:59
it's exciting you know
24:01
even though it's not just for ocular melanoma
24:03
it's for melanoma as a whole
24:04
I'm excited to hopefully I guess
24:07
raise more awareness about ocular melanoma
24:08
even within the melanoma space
24:10
yeah absolutely
24:12
well Allie
24:12
thank you so much for everything that you do
24:14
just on a personal level
24:16
the things that you've done for our community at A Cure
24:17
In Sight and then also
24:19
just in the wider space of melanoma
24:21
and ocular melanoma
24:22
I feel like we really like
24:24
we really couldn't exist on
24:26
in an online space without voices like yours
24:28
being willing to just put yourself out there and say
24:30
yes when somebody
24:31
you know messages you on
24:33
I don't know Instagram or Facebook and says
24:34
can I interview you
24:36
put your story out there in the news
24:38
I think that you know
24:39
choosing to say yes it takes
24:41
I mean it does take some degree of courage
24:42
to be willing to put yourself out there
24:44
and know that you know
24:45
you don't actually know who's gonna see what
24:48
um what that article ends up being
24:50
and who it's gonna reach but I think
24:52
like one of the things that you mentioned
24:53
is that it helps to spread awareness
24:54
I remember one of the I mean
24:56
everybody has their choices right
24:57
like some of us choose to have a private Facebook
24:59
or private Instagram or
25:00
you know private social media versus a public
25:02
and I have long had a public social media
25:05
and that's partly because
25:06
I fully believe that the ability of people to share
25:09
anything that I share about my journey
25:11
is so impactful for somebody down the road
25:13
and I don't know how that's gonna look in 10 20
25:15
50 years when you know
25:17
things are still being shared
25:18
or somebody happens across a hashtag
25:20
and they see my story like
25:21
I don't know what the impact is gonna be for somebody
25:23
but I would rather I would rather just trust that like
25:25
somehow my story is gonna help somebody else
25:27
whether it's that they get diagnosed or that they
25:29
maybe they tell a friend
25:30
and then that friend gets diagnosed
25:31
and they um
25:32
you know have a happier story
25:34
than some of the ocular melanoma patients that we know
25:37
looking ahead and speaking of
25:39
you know newly diagnosed patients
25:40
what would be kind of a main piece of advice
25:42
that you would give to somebody who's newly diagnosed
25:45
especially in the younger community of ocular melanoma
25:47
I I think there's two pieces
25:49
one is and I always say this
25:52
doing your own research and advocating for yourself
25:55
and if you feel like you don't have the capacity to
25:57
do your own research like
25:59
seeing if there's a loved one
26:01
who can help you with that process
26:02
when you first get diagnosed
26:04
because there are different treatments you can undergo
26:07
there's a lot of information that
26:09
I think is thrown at you initially
26:10
but also information that you might not be aware of
26:13
that unfortunately
26:14
we sort of find out as we do our research
26:16
or talk to people so
26:17
I think doing research
26:18
and then being your own advocate
26:20
like I said no two stories are the same
26:23
and you are the patient and you have agency
26:27
and while on one hand like I mentioned before
26:29
that can be scary
26:30
at the same time it can also be empowering
26:32
so this is your life
26:34
and don't be afraid to advocate for what you want
26:36
or need or asking questions
26:38
and then the other piece
26:39
I think even if it's anxiety provoking or scary
26:43
reach out to people on social media
26:45
try and see if you can connect with younger folks
26:48
if they're older that's fine too
26:49
nothing against them
26:50
but especially if you're younger and
26:51
and you're feeling alone in this
26:52
like DM me
26:54
on Instagram reach out to me on Facebook
26:56
I'd be happy to speak with you
26:58
I know other people would as well
27:00
you know
27:00
getting a cancer diagnosis can feel so isolating
27:03
and your world is turned upside down
27:05
but if you have people you can talk to who get it
27:08
who've been through it
27:09
it can make it a little bit less lonely
27:12
absolutely well
27:13
speaking of connecting with you
27:14
if somebody wants to follow um
27:17
follow your Instagram or find you on Facebook
27:19
can we go ahead and link those in the show notes and um
27:21
I guess maybe share your Instagram handle
27:22
and then we'll make sure they're linked
27:24
absolutely
27:25
okay awesome
27:26
so
27:26
you guys check out the show notes or the description
27:27
if you're watching the YouTube channel
27:29
and just make sure to connect with Alllie or
27:31
or share um
27:32
share her profile with somebody who you connect with
27:35
who um
27:35
maybe maybe you're listening
27:36
and then you just happen to see this
27:38
because you have a friend who got diagnosed
27:39
I always love when I get a message from somebody
27:41
who says like hey
27:41
my friend was recently diagnosed
27:43
I'm just looking for resources for them and like
27:45
that is a good friend like
27:46
we all need more of those kinds of friends
27:48
thank you guys for being here and listening
27:49
Allie I guess just to end
27:51
what would be something that you feel like
27:53
gives you the most hope looking forward to tomorrow
27:55
I think
27:56
when I've been to recent ocular melanoma symposiums
28:00
or seeing things that you or other people post
28:02
knowing that there is research being done
28:05
there's a lot of research being done
28:07
and things are always in flux
28:08
things are always changing for this cancer
28:10
for other cancers for other diseases
28:12
and so even though um
28:14
certain prognoses can seem grim at times
28:17
there's always new technology
28:19
medical research medical devices being created
28:22
and so knowing that that things are always changing
28:24
and that that can offer us hope
28:27
absolutely well Allie
28:28
thank you so much for being here
28:29
thanks for coming back
28:30
and being a guest on the Eye Believe podcast
28:32
we are so excited for you
28:34
and congratulations on receiving the Courage Award
28:36
at the Melanoma Research Foundation
28:38
we are thrilled to have you as a part of our community
28:40
even though this is a club
28:41
none of us ever asked to be in
28:43
we're just grateful that you're a part of the community
28:45
and willing to connect with people
28:46
those of you guys listening
28:47
please again
28:48
check out the show notes
28:49
make sure to follow some of the links we're gonna share
28:51
we can share her article and
28:52
we'll just make sure to share some of the other
28:55
prior episodes and things that she's done
28:56
that might be of value to you
28:58
if you're listening
28:58
and then finally I just want to give a huge thanks
29:00
and shout out to our sponsors of the podcast
29:03
and our YouTube channel
29:04
and those are Castle Biosciences
29:06
Immunocore Delcath
29:07
and Aura Biosciences
29:08
thanks you guys for listening
29:09
make sure to subscribe share a couple videos
29:12
drop some comments say hi and we will see you next time