Latest / The Eye Believe Podcast / Exploring the TIL Trial: Sophie's Story | The Eye Believe Podcast

Transcript

Exploring the TIL Trial: Sophie's Story | The Eye Believe Podcast · The Eye Believe Podcast

• 0:03
  I'm so glad guys
• 0:04
  to be joined by Sophie Cantu from Texas
• 0:07
  and she is joining us um
• 0:09
  after quite the journey the last few years
• 0:12
  since her initial diagnosis
• 0:13
  so um
• 0:14
  Sophie just kind of opening question
• 0:15
  when you look back on the last couple of years
• 0:17
  what's one word you feel like captures your journey
• 0:21
  yeah I think there's a handful of words I can think of
• 0:23
  like resilience perseverance whiplash
• 0:26
  um folks
• 0:28
  one word I think of really
• 0:29
  is initiative um
• 0:31
  you know
• 0:32
  refusing to sit back and let this disease take over
• 0:34
  initiative for my treatments
• 0:36
  to find people to connect with
• 0:37
  to find the doctors I wanna go to the treatments I want
• 0:41
  and just continuing to you know
• 0:43
  live live my life to the fullest
• 0:44
  I think that that's
• 0:45
  that's one that I think of for the last few years
• 0:47
  a positive word at least
• 0:49
  no I love it
• 0:50
  um and I think whiplash absolutely applies
• 0:53
  and we don't only get to have positive words
• 0:55
  it's really okay for us to have the good and
• 0:57
  and the challenging I think right
• 1:00
  um okay
• 1:00
  so then what do you want uveal melanoma patients
• 1:02
  who are listening today
• 1:03
  especially those in the metastatic world um
• 1:06
  particularly the younger metastatic community
• 1:09
  to feel after hearing your story today
• 1:12
  I mean I hope that they can feel empowered to
• 1:15
  you know take their own initiative
• 1:16
  and then also know that
• 1:17
  you don't have to settle for any certain treatment
• 1:19
  and you can ask all the questions
• 1:21
  and get all the opinions that you need um
• 1:24
  and just that you know
• 1:26
  life isn't over and that there is hope for a
• 1:28
  a cure and for a there's not this timeline that
• 1:31
  you know
• 1:32
  you might see on Google when you look up the disease
• 1:35
  yeah absolutely
• 1:36
  okay so
• 1:37
  you guys
• 1:37
  today we are sharing Sophie's story with uveal melanoma
• 1:40
  focusing a little bit not a little bit
• 1:42
  focusing mostly on her experience with the tumor
• 1:45
  infiltrating lymphocyte therapy which um
• 1:47
  is actually a clinical trial
• 1:49
  I know it's a little confusing
• 1:50
  because we do have a cutaneous til therapy
• 1:53
  that is FDA approved however
• 1:55
  this is different it's similar
• 1:57
  you know mechanisms
• 1:58
  similar ideas but this is the trial um
• 2:01
  and take notes if you guys are listening
• 2:03
  jot this down this is the trial number
• 2:05
  NCT 03467516
• 2:11
  and it's led by Doctor Udai
• 2:14
  how do you say it Udai
• 2:15
  Kammula
• 2:17
  and we're gonna be talking about
• 2:20
  obviously
• 2:20
  why Sophie is hopeful about what's coming next and
• 2:23
  and just kind of
• 2:23
  get a feel for what led her to where she is today
• 2:26
  so Sophie
• 2:26
  let's just like
• 2:27
  take this back um
• 2:28
  let's fast fast forward backwards
• 2:31
  I suppose rewind to November of 2022
• 2:34
  when you were initially diagnosed
• 2:35
  you were seeing flashes
• 2:37
  what happened from that first appointment
• 2:38
  um from getting the uveal melanoma diagnosis
• 2:42
  yeah so
• 2:42
  I had been seeing flashes for only like
• 2:45
  a few weeks and
• 2:46
  you know I worked um
• 2:47
  in a really stressful job
• 2:48
  I worked in in child abuse
• 2:49
  being a child therapist so I thought
• 2:51
  maybe I'm just getting some migraines
• 2:52
  or I'm stressed out um
• 2:54
  but I went to the eye doctor one day after work
• 2:56
  and they you know
• 2:57
  looked at my eye and they said oh
• 2:59
  your retina's detached
• 3:00
  you need to go see a retina specialist right away
• 3:02
  I was like do I need to call my boyfriend at the time
• 3:05
  um do I need a ride or whatever
• 3:06
  they're like no
• 3:07
  you're good you need to go right away
• 3:08
  so I was like whatever
• 3:10
  um so I went to a retina specialist
• 3:12
  and the doctor looked at my eye for maybe 10 seconds
• 3:17
  and then just said it's cancer
• 3:20
  um and I was like
• 3:22
  what 10 seconds
• 3:24
  you got it okay yeah
• 3:26
  so then you just
• 3:26
  kind of explained that this is a very rare
• 3:28
  very aggressive cancer and if it's anywhere else
• 3:31
  um it's really bad essentially
• 3:32
  and so um
• 3:35
  after that I got connected with Doctor Harbour in Dallas
• 3:38
  through a friend of mine
• 3:40
  who was a resident at UT Southwestern
• 3:41
  and I went to him for my care
• 3:44
  after that quick diagnosis
• 3:46
  okay
• 3:47
  so you had treatment in January 2023 with Doctor Harbour
• 3:51
  and
• 3:51
  what did that treatment and recovery look like for you
• 3:54
  yeah I had the plaque brachytherapy and
• 3:57
  you know I tried to have my mindset of
• 3:59
  you know I'm really grateful that I get to keep my eye
• 4:01
  because I know that that's not the case for everyone
• 4:04
  um and so the treatment was
• 4:07
  you know it wasn't painless
• 4:08
  it wasn't as painful as I anticipated
• 4:10
  I had never had a surgery before so um
• 4:13
  I kind of had a lot of fear going in
• 4:15
  but it was the recovery was better than I
• 4:17
  than I expected I also am not someone who slows down
• 4:20
  so I probably push things a little bit but um
• 4:25
  but it you know
• 4:26
  there was pain and it was discomfort
• 4:27
  and my vision was kind of fuzzy getting back but um
• 4:31
  it wasn't it wasn't too bad
• 4:32
  you had the plaque brachytherapy
• 4:34
  and then you had the castle test
• 4:37
  it sounds like so what did your castle test show
• 4:40
  my Castle test was class 2 Prame Negative
• 4:44
  um
• 4:44
  and then I can't remember if BAP1 was in that testing
• 4:47
  or or a different one
• 4:48
  but that was not what I was hoping for
• 4:51
  um so
• 4:52
  that was pretty disappointing whenever I got that news
• 4:55
  and just for reference for those of you guys listening
• 4:59
  Sophie
• 4:59
  how old were you when you were initially diagnosed
• 5:02
  when I was initially diagnosed
• 5:03
  I think I was 29 I'm 32 now
• 5:06
  so I think I was 29 oh
• 5:08
  my gosh okay
• 5:09
  that's about the same age that I was
• 5:11
  I was 28 yeah
• 5:12
  I was 28 and I'm 34 now
• 5:14
  so I get it it's a lot
• 5:16
  yeah definitely a lot
• 5:18
  okay so with that um
• 5:20
  with that risk factor you had a scan schedule um
• 5:23
  based on your class 2 diagnosis which um
• 5:26
  we're so grateful
• 5:26
  that we have the information to use for informing scans
• 5:30
  but it is challenging to have scans every three months
• 5:33
  um so what did normal life look like during that point
• 5:36
  when you were scanning every three months
• 5:39
  you know it felt like I was living life kind of
• 5:41
  three months at a time and really
• 5:43
  I would you know
• 5:44
  get scans things would be clear
• 5:46
  I would feel good pretty much
• 5:48
  until
• 5:48
  whenever I knew the scans were coming up a week before
• 5:50
  I was so so
• 5:52
  so anxious and really just trying to
• 5:55
  let's stay in the moment stay positive
• 5:57
  all of the things and then I would get scans
• 5:59
  whenever I'd get results I would be calm
• 6:02
  thankful great
• 6:03
  let's kind of keep keep going
• 6:04
  it was kind of just that that cycle
• 6:06
  so living my normal life
• 6:07
  but also with this impending
• 6:10
  when is this gonna happen to me
• 6:12
  kind of in the back of my mind
• 6:14
  yeah and it's
• 6:15
  it's a lot to juggle and living that kind of
• 6:18
  I guess it's kind of like
• 6:19
  living in the space of those three months
• 6:21
  because you're you're almost waiting to see
• 6:24
  you know waiting for what
• 6:25
  what the doctors have told you is kind of
• 6:27
  statistically inevitable um
• 6:29
  or very likely right
• 6:30
  and of course now we have I
• 6:32
  I don't know
• 6:32
  like when you and I were diagnosed back in that
• 6:34
  you know 2020
• 6:35
  2022 range the castle test
• 6:38
  was helpful for informing the scan schedule
• 6:40
  but it was pretty terrifying honestly
• 6:42
  if you were a class 2 diagnosis
• 6:44
  because
• 6:44
  it said you had over a 50% chance of metastasizing
• 6:48
  and over 50% chance doesn't seem great no
• 6:52
  now for those of you guys listening
• 6:54
  the castle testing has been updated
• 6:55
  so the the
• 6:56
  the statistics which I mean Sophie
• 6:59
  you know like
• 6:59
  I like to live by the phrase be your own statistic um
• 7:02
  but for the purpose of information
• 7:05
  the statistics do look better now
• 7:07
  um I think it's technically a little bit less than 50%
• 7:10
  but don't quote me on that
• 7:11
  just go check for the
• 7:12
  the most up to date uveal melanoma risk reports
• 7:15
  and um
• 7:16
  check out our webinar that we did on that
• 7:18
  just this last December um
• 7:20
  and I think there's also a few things from Eye On uh
• 7:23
  the Eye Believe meetings that we've done uh
• 7:26
  where we've got people like Doctor Harbour
• 7:27
  and other people in the COOG uh
• 7:29
  researching community
• 7:30
  who have explained how that all works
• 7:32
  so anyway I digress
• 7:34
  um so I wanna ask you
• 7:35
  in the middle of all of this
• 7:37
  you planned a wedding
• 7:39
  so how how did that go
• 7:41
  let's talk about your wedding real quick
• 7:42
  cause that's such a fun that's such a fun time
• 7:45
  yeah so the weekend I got diagnosed
• 7:48
  my now husband was actually gonna propose
• 7:51
  that next weekend he had had it planned out already
• 7:53
  and I think he I know he called two of my best friends
• 7:56
  was like should I just do it now
• 7:57
  I want her to know I'm here for her through
• 8:00
  you know sickness and health and everything
• 8:01
  and thankfully he waited a little bit
• 8:03
  just for me to get that original MRI
• 8:05
  and kind of feel a little bit
• 8:07
  have a plan cause I'm a big planner um
• 8:09
  and so you know
• 8:11
  planning the wedding throughout was
• 8:13
  you know fun and hopeful
• 8:14
  and all of my friends had pretty much
• 8:16
  gotten married that year before and um
• 8:20
  it was stressful but it was also kind of
• 8:22
  like a really nice distraction
• 8:24
  to have something else to kind of
• 8:26
  put a lot of my energy to
• 8:27
  and then I'd have scans and we'd feel better like okay
• 8:31
  we can look to the future a little bit more
• 8:33
  we might get stuck a little bit
• 8:34
  but then we can look to the future
• 8:36
  um but my
• 8:37
  my wedding was great and my husband is incredible
• 8:40
  his family is incredible I'm
• 8:41
  I'm so thankful that I have their support
• 8:44
  and had their support through this crazy
• 8:47
  crazy crazy time that's continued
• 8:49
  yeah absolutely
• 8:51
  well I'm so glad
• 8:52
  I loved seeing your pictures
• 8:53
  I remember there was one um
• 8:55
  one of the pictures
• 8:55
  that you posted on your social media that
• 8:57
  I think it was by like
• 8:58
  a giant eyeball
• 8:59
  and it was kind of crazy that it happened
• 9:01
  yeah it was actually funny because I didn't the
• 9:04
  there's a big eyeball in downtown Dallas
• 9:06
  I honestly I don't know what it is but um
• 9:08
  we were supposed to have our pictures somewhere else
• 9:10
  they had double planned it
• 9:11
  double booked it and so there was this green field
• 9:14
  and I was like
• 9:15
  this is so ironic and a little bit annoying
• 9:18
  but also just feels right because why it is also
• 9:21
  why would the eyeball be here for me today right
• 9:24
  it just feels a little indicative of my life
• 9:26
  where it's always kind of in the back of my mind
• 9:28
  this thing but we made the best of it
• 9:30
  and took some funny pictures in front of it
• 9:33
  no I thought they were so funny
• 9:34
  um okay
• 9:35
  well let's fast forward a little bit
• 9:37
  um to July 2024
• 9:39
  and I remember you and I were in touch at this point
• 9:42
  we were texting there was a lot going on
• 9:44
  can you take us back to that July 2024 scan
• 9:46
  and kind of why it was happening the way that it did
• 9:49
  and um
• 9:50
  how you're feeling at that moment
• 9:52
  yeah so thinking back to that July is
• 9:56
  I mean I just
• 9:57
  I wanna go back to that me and give her a hug but
• 10:01
  so I was actually pregnant
• 10:02
  at the time um
• 10:04
  I thought or my understanding
• 10:06
  I was about 12 weeks um
• 10:08
  and so we did an MRI
• 10:10
  we still did my regular schedule of
• 10:12
  you know three month scans
• 10:13
  but we did it without contrast um
• 10:16
  and so I honestly at that point
• 10:19
  that day I remember
• 10:20
  normally scan day
• 10:21
  I'm not feeling very great
• 10:22
  very hopeful but that day I was
• 10:24
  you know okay
• 10:25
  we're good we're gonna get through this scan
• 10:26
  we're gonna keep going we get to announce our pregnancy
• 10:29
  Yay like future um
• 10:31
  and scans can the results can take
• 10:34
  you know sometimes I get them right after
• 10:36
  sometimes I get them a week after um
• 10:38
  but that day I got my scan in the morning
• 10:41
  I went to work I was extremely nauseous
• 10:43
  I had been so sick and um
• 10:46
  you know I was about to see a client
• 10:48
  I'm a therapist and my scan results came up
• 10:50
  and I had that I don't know
• 10:52
  if you have the same visceral body response um
• 10:55
  and I looked at the scan and it said something
• 10:58
  I can't remember the words exactly
• 10:59
  um like something along lines of non viable pregnancy
• 11:04
  or something about something about the pregnancy
• 11:06
  and then um
• 11:08
  suspicious lesions in the liver
• 11:11
  um
• 11:13
  and I called my husband
• 11:14
  we both left work and we went home
• 11:17
  and we're just like what is happening
• 11:20
  I messaged all the doctors
• 11:22
  my OB Doctor C
• 11:24
  Doctor Harbour um
• 11:26
  yeah and then it went
• 11:27
  we waited for a little bit
• 11:29
  until we could get any kind of answers from anyone
• 11:32
  yeah I remember
• 11:33
  that waiting period was horribly sucky for you
• 11:36
  yeah um yeah
• 11:37
  and I think any of you guys listening
• 11:38
  if you've ever been in that waiting space
• 11:40
  you know
• 11:40
  whether you're waiting for clarification on scans
• 11:43
  or you've gotten some difficult news
• 11:45
  I mean you guys know like
• 11:46
  it's hard um
• 11:47
  it's really hard to stay present with life
• 11:49
  and to kind of find your foot forward um
• 11:54
  because you just get so
• 11:57
  I mean your life gets so interrupted in that moment
• 12:00
  and I feel like you had um
• 12:02
  and I'm gonna like
• 12:04
  I'm gonna try not to get emotional
• 12:05
  but you had two things
• 12:06
  two really critically hard things yeah
• 12:09
  that you found out about in the same day
• 12:11
  yeah and I don't know many people who have that happen
• 12:16
  I just know that it I think it sucks
• 12:18
  and I'm really sorry that that happened to you
• 12:20
  thank you it sucks
• 12:22
  and it just felt too you know
• 12:24
  unreal to to happen
• 12:26
  and so you know
• 12:27
  I ended up um
• 12:28
  my OB was incredible
• 12:30
  and I ended up getting an ultrasound
• 12:32
  cause we had you know
• 12:33
  seen the heartbeat and done all of this stuff and
• 12:35
  and she ended up diagnosing me
• 12:37
  with a partial molar pregnancy
• 12:38
  which is another extremely
• 12:40
  extremely rare thing um
• 12:42
  with that your hcg levels can be higher
• 12:45
  so that was one of the reasons I was more sick
• 12:48
  but also we were you know
• 12:50
  thinking that you know
• 12:52
  maybe because of these high hcg levels
• 12:54
  that led you can get like
• 12:56
  liver lesions somehow with that
• 12:57
  yeah like six
• 12:58
  some different things yeah
• 12:59
  and we had attempted to you know
• 13:01
  do some fertility preservation early on
• 13:03
  and of course
• 13:04
  I had bad luck with that and things didn't go my way
• 13:07
  and so we were like there's a lot of hormones
• 13:08
  there's a lot going on
• 13:09
  maybe this is just a really uncomfortable
• 13:12
  um coincidence
• 13:13
  and so that in between period
• 13:16
  a lot of people were you know
• 13:17
  being hopeful like
• 13:18
  there's no way it's both of those things
• 13:19
  it's no way so I had to get the DNC
• 13:22
  and then we had to wait a little bit to get the
• 13:24
  um biopsy
• 13:26
  and the interventional radiologist pretty much said
• 13:29
  like when I do the biopsy
• 13:30
  if it's black I know that it's the metastasis
• 13:35
  and so um
• 13:37
  we got he did the biopsy
• 13:38
  and he was like it's black
• 13:40
  and I just went back to the room
• 13:43
  my husband was there and he
• 13:45
  I think was a lot more hopeful than me
• 13:47
  um just again
• 13:48
  because he was like there's no way that
• 13:50
  that these both things are happening
• 13:51
  and so then we found out and we knew
• 13:55
  and I don't want to use the word peace 'cause
• 13:57
  that wasn't the that wasn't the word
• 13:59
  but more of like a just okay
• 14:03
  this is it I have the answer
• 14:05
  I know what it is there's not this questioning
• 14:07
  and what do we do next yeah absolutely
• 14:11
  um so just in this period
• 14:13
  like this initial period of uveal melanoma
• 14:15
  metastatic diagnosis
• 14:17
  who and what helped you to feel supported and grounded
• 14:20
  just in that kind of initial phases
• 14:22
  cause I know
• 14:22
  like the initial part of uveal or of metastatic um
• 14:26
  your metastatic journey can be really
• 14:28
  it can be really challenging
• 14:29
  so yeah yeah
• 14:31
  I mean my husband 100% just
• 14:34
  I mean a
• 14:35
  a lifesaver my rock really
• 14:37
  I know that's kind of cheesy to say
• 14:39
  but you know him um
• 14:41
  my family my friends
• 14:42
  I have I honestly have the best support system
• 14:45
  I've got a huge group of friends
• 14:47
  um my family
• 14:48
  a lot of my family's local
• 14:50
  and then my husband's family
• 14:51
  they actually think it's
• 14:52
  whole family drove in that week
• 14:54
  just to kind of spend some time with us
• 14:56
  and then um
• 14:58
  I mean all my friends
• 14:59
  I have family friends
• 15:00
  one of my mom's good friends and my friend
• 15:03
  she was like I'm coming over now
• 15:05
  I don't know what I'm gonna do
• 15:06
  but I'm coming over coming over
• 15:08
  yup and so all of
• 15:10
  all of my people were incredibly great to have and
• 15:14
  and within that it still felt really
• 15:17
  really isolating and it still does sometimes
• 15:20
  I have great support and um
• 15:22
  I'm so thankful and I can always go to them
• 15:25
  they're always praying for me
• 15:26
  thinking of me encouraging me
• 15:28
  and sometimes it still does just feel really isolating
• 15:30
  as as
• 15:31
  you know yeah
• 15:33
  I absolutely understand that
• 16:06
  all right so
• 16:07
  let's fast forward to your treatments
• 16:08
  for metastatic uveal melanoma
• 16:10
  so your metastatic treatments
• 16:12
  you have tried quite a few different things
• 16:14
  before you made it to TIL
• 16:16
  so let's just kind of briefly cover
• 16:18
  what are the areas that you are
• 16:19
  the trials the treatments that you did before TIL um
• 16:22
  I think starting with the Ideaya trial
• 16:24
  and you did that for about four months
• 16:25
  um so what were you hoping that it would do
• 16:28
  and why and then what
• 16:29
  what signaled the time to like
• 16:31
  kind of change change direction
• 16:34
  yeah so I
• 16:35
  you know originally
• 16:35
  whenever I heard about it
• 16:37
  I don't know why I just was like
• 16:39
  I don't really love the idea of it
• 16:40
  I don't know what it was but I was like whatever
• 16:42
  this is what you know
• 16:43
  they're recommending Doctor C in Dallas
• 16:46
  I talked to Doctor McKean in Nashville
• 16:48
  Doctor Lutzky in Miami um
• 16:50
  you know they were all like
• 16:51
  let's start with this so um
• 16:54
  started with that
• 16:55
  got randomized to the highest dose of the drugs
• 16:58
  which I was thankful for that felt like a big win um
• 17:02
  and had some pretty gnarly side effects
• 17:05
  a lot of you know
• 17:07
  GI nausea
• 17:08
  a lot of that going on um
• 17:10
  a lot of swelling the edema
• 17:11
  my legs were like huge
• 17:13
  it was really bizarre um
• 17:15
  but I was on that for about four months
• 17:17
  and I think my first scan
• 17:18
  there was like a little bit of progression
• 17:20
  but it wasn't enough to kick me off of the trial
• 17:23
  and then the next one was kind of borderline
• 17:25
  I think two um
• 17:27
  was like we're kind of stable
• 17:28
  but we're seeing like a little bit of progression
• 17:31
  and then the third one it was over that 20% um
• 17:35
  progression and so we knew it was time to get off um
• 17:39
  it felt
• 17:41
  it was disappointing cause
• 17:42
  you know I was like well
• 17:43
  overall everything's fairly stable
• 17:45
  there's not a ton of growth um
• 17:48
  and you know whenever we signed up for that
• 17:50
  the data at the time
• 17:52
  people were on it for a good amount of time
• 17:54
  and so then we were like oh
• 17:55
  four months okay
• 17:57
  that's all we get um
• 17:59
  so that was really disappointing
• 18:00
  and that's when we went to the next trial
• 18:03
  yeah absolutely well
• 18:04
  and for those of you guys listening
• 18:05
  the Ideaya trial does have really good data
• 18:07
  and the data is continuing to improve and
• 18:10
  you know since this time
• 18:12
  this was 2024 they are continuing to improve
• 18:15
  you know
• 18:15
  doctors across the country are continuing to improve
• 18:18
  in how well they can manage side effects
• 18:20
  but that's part of being on a trial
• 18:22
  right is you're
• 18:23
  you're kind of like
• 18:24
  some of the Guinea pigs of figuring those out
• 18:26
  figuring those things out
• 18:27
  and like
• 18:28
  every trial like
• 18:29
  every treatment sometimes it works for you
• 18:30
  sometimes it works for somebody else
• 18:32
  and there's really not a whole lot of rhyme or reason
• 18:34
  as to why right now
• 18:36
  and that can be really frustrating
• 18:37
  um but I just admire that you guys went through
• 18:41
  you know the pivoting process so quickly
• 18:44
  I felt like you were really efficient in like
• 18:45
  seeking out you know
• 18:46
  seeking out good doctor's opinions
• 18:48
  and then moving forward
• 18:49
  and not getting kind of bogged down in the
• 18:52
  in the defeat I guess
• 18:53
  in that and I think that
• 18:54
  you know
• 18:55
  that speaks loads to what you said at the beginning
• 18:58
  like you said you know
• 18:59
  you took a lot of initiative
• 19:00
  um but I think
• 19:01
  you know on top of that
• 19:02
  you also had a lot of resilience because
• 19:04
  I mean what choice do we have right
• 19:06
  right yeah
• 19:07
  and you know
• 19:07
  um Doctor Harbour and Doctor C
• 19:09
  at UT Southwestern were both so great and um
• 19:13
  they're so collaborative with other doctors
• 19:14
  and so that was really
• 19:15
  really helpful just to have their support too
• 19:17
  to like yeah
• 19:17
  let's get some second opinions
• 19:18
  let's make sure we're not missing anything else
• 19:20
  and that we're we all feel that this is like
• 19:22
  the best choice for you yeah
• 19:24
  it sounds like you've got a really solid team
• 19:25
  and I think that makes a really big difference um
• 19:28
  in your just
• 19:28
  in your confidence in approaching what you're doing um
• 19:31
  even when you have curveballs kind of thrown your way
• 19:34
  right um
• 19:35
  okay so after this point
• 19:37
  you joined the Replimune trial
• 19:38
  and you were randomized to Ipi Nivo
• 19:40
  which I know I got when you told me that
• 19:42
  I was so disappointed because the RP2 trial
• 19:45
  the RP2 injection like
• 19:47
  all of it is just so the science is so cool to me right
• 19:50
  I've I've known about this trial personally
• 19:52
  and so like
• 19:53
  just on a on a personal level
• 19:54
  I was just really rooting for like
• 19:56
  you and anyone else that I know
• 19:58
  who's been trying to get into the RP2 trial
• 20:00
  to get injected instead of
• 20:02
  to get the randomization 'cause we've all heard
• 20:05
  I mean
• 20:06
  we've all heard all the gnarly things about Ipi Nivo
• 20:08
  and it can be challenging
• 20:10
  um
• 20:10
  but what was it like physically and emotionally for you
• 20:13
  yeah so
• 20:13
  I mean that's when like
• 20:14
  the whiplash kind of comes in
• 20:15
  you know yeah
• 20:16
  hopeful with Ideaya and then it goes
• 20:18
  down and then okay Replimune
• 20:19
  we're super excited about it
• 20:21
  I was um
• 20:22
  with Doctor Moser in in Arizona
• 20:24
  and I know we met whenever
• 20:25
  I think I was getting my scans um
• 20:26
  which is so great to meet you in person
• 20:28
  and um
• 20:30
  so yeah
• 20:30
  we were I'm in Dallas
• 20:31
  so we were about we're gonna fly out
• 20:33
  just cause the way randomizations happen
• 20:35
  and you have to have this time period
• 20:36
  and all of those logistics
• 20:37
  um the trial coordinator who
• 20:39
  she was great she called me and just said
• 20:42
  you got randomized to Ipi Nivo
• 20:43
  and I was just I mean
• 20:46
  again I'm gonna say this word 15 times
• 20:47
  but just devastated and gutted and just was like
• 20:51
  why this sucks
• 20:52
  why why
• 20:54
  bad news after bad news this feels so hard exactly
• 20:57
  you know and it's
• 20:58
  you know you get hope and then you get knocked down
• 21:00
  and so I think a lot of the doctors were at the MRA
• 21:04
  I think it was the MRA conference that weekend
• 21:05
  or they were all somewhere and um
• 21:08
  so they're all busy and I was trying to get a hold of
• 21:11
  um the doctors
• 21:12
  and Doctor Moser you know
• 21:13
  ended up calling me and saying
• 21:14
  you know
• 21:16
  of I don't know what his words were
• 21:17
  but like this sucks
• 21:18
  and also let's try the Ipi Nivo
• 21:21
  like why not try it
• 21:22
  here we are um
• 21:23
  go ahead and you know
• 21:24
  still come if that's what you wanna do
• 21:26
  and so
• 21:27
  um and some of the other doctors reiterated that too
• 21:29
  so you know
• 21:30
  I was like all right
• 21:31
  let's do that
• 21:32
  maybe I'll be in the small statistic of people that
• 21:34
  Ipi Nivo
• 21:35
  works for and so
• 21:37
  you know just try to reframe my mindset
• 21:40
  you know we're helping science
• 21:42
  maybe I will be maybe I'll respond to this
• 21:45
  you know whatever
• 21:46
  so
• 21:46
  we went to Arizona for a couple rounds of the Ipi Nivo
• 21:50
  and like
• 21:51
  when I said I don't
• 21:51
  I don't stop my first round of Ipi Nivo
• 21:55
  um I went to Arizona for Ipi Nivo
• 21:57
  and then we had a ski trip
• 21:58
  my first time skiing planned that next weekend
• 22:00
  so got Ipi Nivo and then went to Aspen
• 22:03
  and didn't feel great but didn't feel horrible yet
• 22:06
  but you know
• 22:07
  kind of that dichotomy of
• 22:10
  I'm gonna do this treatment
• 22:11
  but I'm not gonna let it slow me down
• 22:12
  and I'm gonna spend time with my friends
• 22:14
  and appreciate what you know life
• 22:18
  yeah absolutely
• 22:19
  OK so you ended up experiencing severe colitis
• 22:22
  which is one of the more challenging side effects
• 22:24
  with Ipi Nivo
• 22:26
  what do you wish people understood better about
• 22:28
  immune related side effects
• 22:30
  and the recovery from that
• 22:31
  because I mean
• 22:32
  I know that was just really rough for you
• 22:34
  yeah I guess um
• 22:36
  you know and Doctor Moser's team was very on it
• 22:39
  you know
• 22:40
  wanting me to tell them every side effect I had
• 22:42
  all of that it was
• 22:43
  a little difficult when the side effects kind of hit
• 22:45
  when I was back in Dallas and not in Arizona
• 22:48
  um I think just that
• 22:52
  you know you never really know
• 22:53
  what side effects are gonna look like
• 22:55
  but that they look really different
• 22:57
  you know with colitis
• 22:58
  I had the typical GI extreme GI upset
• 23:01
  but I also was having some really
• 23:03
  really high fevers
• 23:04
  I had a fever of like 105 and went to the hospital
• 23:07
  and you know I
• 23:10
  I think what I would encourage others is
• 23:13
  you know I was in a great hospital
• 23:14
  in the er but really just wanting maybe some extra test
• 23:18
  and kind of checking for that colitis
• 23:20
  cause I went to the er a couple times
• 23:21
  they did blood test you know
• 23:23
  all of that stuff and then I went again
• 23:25
  and then they did a CT and they were like
• 23:27
  oh my gosh
• 23:28
  you have insane colitis um
• 23:31
  the treatment for me you know
• 23:33
  once like
• 23:33
  starting the steroids
• 23:34
  I know this isn't everyone's experience
• 23:36
  but I felt great on the steroids
• 23:38
  I had a lot of energy you're great
• 23:41
  yeah it was great
• 23:41
  and so I was on the steroids
• 23:43
  but then we tapered off really quickly
• 23:45
  just when we were trying to pivot treatments
• 23:46
  and that's when things got worse before they got better
• 23:49
  um
• 23:50
  but and so you think
• 23:52
  you think you tapered too fast right
• 23:54
  yeah yeah
• 23:55
  um I was trying to remember the order of everything
• 23:57
  so there was maybe a little bit of colitis
• 23:59
  we were trying to taper off um
• 24:01
  and then we were trying to taper off
• 24:03
  cause
• 24:03
  then we were looking at my next treatment for TIL
• 24:05
  cause there was um
• 24:08
  there was growth on the Ipi Nivo
• 24:09
  and so steroids with your lymphocytes are not good
• 24:14
  so we're trying to get off of it ASAP
• 24:15
  just to make our next moves
• 24:17
  and I think we just went a little bit too quickly
• 24:19
  and my body wasn't ready for it
• 24:20
  but once the treat once we knew what it was
• 24:23
  we got that treated on the right dosage um
• 24:27
  things started to look better and feel better a lot
• 24:29
  a lot more quickly so that was
• 24:31
  that was good
• 24:33
  yeah for sure
• 24:34
  okay so we are finally to talking about TIL
• 24:38
  um so you guys listening
• 24:40
  make sure to just stick with us for this part
• 24:42
  because Sophie's story is so cool um
• 24:44
  so inspiring and
• 24:45
  I feel like it just speaks volumes
• 24:47
  to just how much science can advance
• 24:50
  in just a short period of time
• 24:51
  um those of you guys who have heard of TIL therapy
• 24:54
  you might have heard of Katie Doble's story
• 24:56
  I know that Sophie and I have connected with Katie
• 24:58
  she's a huge advocate for uveal melanoma
• 25:01
  um so just kind of keep that in mind
• 25:03
  we'll link a couple of those like
• 25:04
  news articles and things that we have from
• 25:06
  you know the
• 25:07
  the most latest or the latest stories
• 25:10
  and kind of news articles around the TIL therapy
• 25:11
  in the trial itself and again
• 25:14
  the NCT number is NCT03467516
• 25:20
  so Sophie
• 25:21
  you said that TIL was something that was kind of
• 25:23
  always on your brain um
• 25:26
  you because it just made a lot of sense to you
• 25:28
  um what do you feel like
• 25:28
  clicked about like
• 25:29
  how it worked and what you had Learned
• 25:32
  you know the first time we heard about it
• 25:33
  was whenever we met with um
• 25:35
  Dr. Lutzky
• 25:35
  in Miami and he was just
• 25:36
  kind of
• 25:36
  talking about all the different things out there
• 25:39
  and there was just something about the idea of um
• 25:43
  you know pretty much
• 25:45
  reprogramming your immune system to fight the cancer
• 25:48
  and the full body effect
• 25:50
  that it just sounded right to me
• 25:53
  and that's kind of what you ideally want
• 25:55
  um and so yeah I
• 25:56
  I just think that idea from the beginning
• 25:59
  really clicked with me
• 26:00
  but it was a little bit more in the back of my mind
• 26:02
  because I knew it was a more lengthy process
• 26:04
  and a little bit I had heard it was really
• 26:07
  really extreme yeah
• 26:09
  very it it
• 26:09
  it has a lot of um
• 26:11
  a reputation in the uveal melanoma community
• 26:14
  at least from what I have heard
• 26:16
  you know the last five or so years since my diagnosis
• 26:18
  TIL has a reputation for being considered extreme um
• 26:22
  and and also really intense
• 26:25
  I think is a good word for it yeah
• 26:27
  um and a lot of patients
• 26:29
  you know it's it's
• 26:30
  it was an intensity that
• 26:31
  it was kind of rumored to be this
• 26:33
  this intense treatment that didn't have very good
• 26:37
  with
• 26:37
  kind of ways to guarantee if it would or wouldn't work
• 26:40
  um and so
• 26:41
  that's kind of
• 26:41
  what we're gonna talk a little more about later
• 26:43
  so stay tuned um
• 26:44
  is how Doctor Kammula has improved his process
• 26:48
  over the last I don't even know
• 26:49
  probably the last decade or more
• 26:51
  like of all of his studying of this
• 26:53
  um so let's just backtrack though
• 26:55
  how would you explain TIL to your family or
• 26:58
  you know just to anybody else who's listening
• 26:59
  in very plain language okay
• 27:03
  um this is hard 'cause it is so scientific
• 27:05
  so really
• 27:06
  the idea is in the tumors
• 27:09
  you have these lymphocytes
• 27:10
  um and so Doctor Kammula extracts the tumors
• 27:15
  gets these lymphocytes
• 27:16
  test them to see if they're potent
• 27:18
  basically if they have this tumor infiltrating quality
• 27:23
  if they are he grows them
• 27:24
  expands them and then um
• 27:28
  you get chemo wipe your immune system
• 27:29
  essentially like a blank slate
• 27:31
  they put the TIL in
• 27:32
  which is kind of like your new immune system
• 27:34
  and then you get some immunotherapy
• 27:36
  to really boost that up and bolster that
• 27:38
  to really give it that power to um
• 27:42
  fight off the cancer and so
• 27:44
  you know they test one thing that's
• 27:47
  I mean there's so many things
• 27:48
  really cool about Doctor Kammula's trial
• 27:49
  but they test my
• 27:51
  the tumor infiltrating lymphocytes on my exact tumor
• 27:54
  so we know that in theory
• 27:57
  the tumor it's fighting the tumor
• 27:59
  it's potent against the tumor
• 28:00
  um so that really gives you some
• 28:02
  some hope for that and another thing with Doctor Kammula
• 28:05
  is that he is not gonna put anyone through this
• 28:08
  if he doesn't even have like
• 28:10
  think that it could possibly be beneficial
• 28:12
  he's not going to put someone through this if um
• 28:15
  the chances are really low
• 28:17
  which I I do appreciate
• 28:18
  and I was really thankful
• 28:19
  that I got the opportunity to go through the treatment
• 28:22
  yeah so
• 28:23
  it sounds like he has kind of
• 28:24
  revamped the process of joining the trial
• 28:26
  so that you have to
• 28:27
  kind of have this evaluation period first
• 28:29
  with the biopsy and where he like
• 28:31
  grows the tumor cells and determines
• 28:33
  is it really you know
• 28:35
  how how
• 28:35
  how good of a chance does it have of working
• 28:38
  and I think
• 28:38
  in one of the news reports that I read recently
• 28:41
  or the study reports like he
• 28:42
  he has kind of a list of the things he looks for
• 28:46
  basically um
• 28:47
  in your labs and how the
• 28:48
  how the tumor looks under the microscope
• 28:50
  like there's a lot to the biology of it
• 28:52
  and
• 28:52
  I really hope that we get to talk to Doctor Kammula
• 28:54
  directly um
• 28:55
  I'm super excited to hopefully
• 28:56
  line up chatting with him in the next few months
• 28:58
  so yeah
• 28:59
  um he's incredible
• 29:00
  if you're listening Doctor Kammula
• 29:01
  I would like to talk to you
• 29:03
  we're gonna send Sophie's story to you so that
• 29:05
  you know we wanna chat
• 29:07
  um but then once you get to that point
• 29:09
  you have the biopsy then what happens you
• 29:11
  I think it's it's like a pretty
• 29:13
  and I was a little worried for you
• 29:14
  because I heard that the liver resection part
• 29:16
  where they like
• 29:17
  actually remove more than just a core biopsy was
• 29:20
  was like oh
• 29:21
  that sounds I mean
• 29:22
  I know my liver surgery was rough
• 29:24
  um but yeah
• 29:25
  how did that go for you for the
• 29:26
  the next steps yeah
• 29:28
  so I had the biopsy um
• 29:30
  and my they actually did two biopsies
• 29:33
  so the first one they have this
• 29:35
  the scoring system
• 29:36
  and mine was a little bit inconclusive
• 29:38
  it sounded like
• 29:39
  kind of on the line and then they did another biopsy
• 29:42
  which it had a higher score
• 29:43
  um and at that point
• 29:44
  my cortisol was actually really low
• 29:46
  which was surprising 'cause
• 29:47
  you would think your cortisol is like
• 29:49
  out of the roof having stage 4 cancer
• 29:51
  but also the steroids I think that that also can be
• 29:54
  it can look
• 29:55
  I don't know I could be wrong
• 29:56
  but anyway
• 29:57
  I don't I digress
• 29:57
  I think everyone is a little bit confused
• 29:59
  but eventually we got that all settled
• 30:01
  and then I went in for the liver resection
• 30:03
  and he took out I think he said
• 30:04
  five lesions um
• 30:07
  and I have you know
• 30:09
  a big one kind of just called the big boy
• 30:11
  that we really want to get rid of
• 30:12
  and then we have a lot of
• 30:13
  a handful of little ones and so he took those out and
• 30:16
  you know
• 30:17
  it was painful and uncomfortable after
• 30:20
  but it wasn't horrible um
• 30:23
  I I think for me
• 30:24
  just the not I'm really active person
• 30:26
  and so not being active was more difficult for me
• 30:30
  um and so I did that
• 30:32
  and then I went back I meant to look this up before we
• 30:35
  before we met I went back up to Pittsburgh again um
• 30:38
  to do
• 30:39
  I don't know if you know this off the top of your head
• 30:41
  I did something where they had a central line in
• 30:44
  got my white blood cells um
• 30:46
  I don't know what that's called
• 30:48
  I know I should know that's okay if you guys know
• 30:51
  drop it in the comments right
• 30:53
  I'll think about it once we get off this call
• 30:55
  but I did that like
• 30:56
  you know the idea is to get my white blood cells
• 30:58
  to help grow the TIL and so then after that um
• 31:04
  Dr Kammula
• 31:05
  let me know hey
• 31:05
  your TIL is really potent
• 31:07
  it's looking really good you know
• 31:08
  we're gonna we can move forward with treatment
• 31:10
  and so then I was admitted to the hospital again
• 31:15
  I got another central line
• 31:17
  which I ended up getting an infection
• 31:18
  and so that was fun but everything was OK
• 31:22
  um and I had seven days of chemo
• 31:24
  they did the TIL infusion day
• 31:26
  and then they did the um
• 31:28
  immunotherapy which
• 31:29
  we can kind of get into
• 31:30
  what those three different kind of sections look like
• 31:32
  if if that's helpful
• 31:33
  yeah for sure
• 31:34
  well before we get into that
• 31:35
  when you were told that you had really potent TIL
• 31:37
  what did that mean for you in the moment
• 31:39
  oh my gosh
• 31:40
  I was elated it was just
• 31:41
  I mean hope again that's
• 31:43
  I was also a little bit hesitant
• 31:44
  because
• 31:45
  I think I'd kind of been knocked down a little bit
• 31:46
  but I was really hopeful and like you said
• 31:49
  I'd connected with Katie um
• 31:51
  and so we had been talking a lot
• 31:53
  and she was really encouraging
• 31:54
  and I know that was some of her original um
• 31:57
  feedback that she had gotten
• 31:58
  was that she had really potent TIL
• 31:59
  and so at least to know okay
• 32:02
  this worked outside my body
• 32:03
  so there's a
• 32:04
  decent possibility that it'll work inside my body
• 32:07
  so it was really really encouraging and hopeful for me
• 32:10
  yeah absolutely
• 32:11
  um well
• 32:12
  and like
• 32:13
  I feel like
• 32:15
  I'm just trying to make sure
• 32:16
  that I'm understanding a couple things
• 32:17
  so you had five tumors that were resected
• 32:20
  and do you know roughly how much like
• 32:21
  tumor volume that was cause I think for the trial
• 32:24
  they need a certain volume of tumor tissue
• 32:26
  to be able to work with
• 32:27
  to grow the TIL yeah
• 32:29
  I know my
• 32:29
  I think they have to have like
• 32:30
  at least 2 centimeters which um
• 32:32
  which isn't very much if you actually look at that
• 32:35
  right I had plenty to go off of apparently
• 32:38
  um and so
• 32:39
  I don't know exactly what the volume was
• 32:41
  of what he took out but he didn't take the large one
• 32:43
  he said the
• 32:45
  that one was already looking a little bit necrotic
• 32:47
  and so he took some that
• 32:49
  from what he knows
• 32:49
  from doing this for all of these years
• 32:51
  they looked like the best ones
• 32:53
  and so he took those out
• 32:55
  um so did that make you feel a little bit better
• 32:57
  like that
• 32:58
  he had removed some of the tumors
• 32:59
  while you were in this waiting period
• 33:01
  before you could start the official therapy
• 33:03
  yeah it was nice to know that okay
• 33:04
  we got rid of some at least we're not just waiting
• 33:06
  at least these ones can't come back right
• 33:08
  yeah no
• 33:09
  that did that felt really good to say okay
• 33:11
  at least some of it's fully out
• 33:12
  and we're gonna use it for something
• 33:14
  they're not just sitting there anymore exactly
• 33:16
  okay well
• 33:17
  let's get in to a little bit more of
• 33:19
  like what the chemo infusion and the IL-2
• 33:21
  is it the IL-2 infusion was like um
• 33:24
  so you had seven days of chemo
• 33:26
  what was the hardest part
• 33:28
  um maybe the hardest side effects that you felt
• 33:30
  like you had to deal with in that first week
• 33:32
  the I think after the second dose um
• 33:36
  of chemo the next morning
• 33:37
  I woke up and I was so nauseous
• 33:40
  and we went through every single drug
• 33:42
  I think they could allow until we could calm that down
• 33:45
  so it was pretty intense the nausea
• 33:47
  um but
• 33:48
  once we kind of figured out
• 33:50
  which medications worked best for me
• 33:52
  you know the
• 33:53
  the staff was incredible they've
• 33:55
  you know worked with this
• 33:56
  this treatment for a while
• 33:57
  and so they kind of know what to try
• 33:59
  so once we figured out you know OK
• 34:01
  we need to do this medication
• 34:03
  before the chemo it was a little bit
• 34:06
  it was a lot better I will not a little bit but
• 34:08
  and I was just I was just tired and fatigued after that
• 34:11
  but that first day was probably the worst
• 34:12
  with the chemo yeah
• 34:14
  for sure and just for
• 34:16
  let's just kind of clock a timeline here
• 34:18
  when you traveled to
• 34:19
  to Pittsburgh at this point to go to UPMC
• 34:22
  you were slated to be there for roughly how long
• 34:25
  including the chemo and the I
• 34:26
  the infusion and the IL-2 um
• 34:29
  I think originally they had said
• 34:31
  like three
• 34:31
  three and a half weeks that's kind of the idea
• 34:33
  so I went the first day I got admitted
• 34:36
  got the um
• 34:37
  the central line put in was the 29th
• 34:40
  which was actually a full year since that original scan
• 34:43
  that I had gotten um
• 34:44
  so that was kind of cool and also I was like
• 34:46
  you know this feels like a good
• 34:49
  a good coincidence
• 34:49
  so let's kind of lean on that a little bit
• 34:52
  okay so then you get to TIL infusion day
• 34:56
  what do you remember the most about that day
• 34:57
  was it like I don't know
• 34:59
  was it was it crazy
• 35:00
  was it did you feel anything
• 35:02
  you know they kind of warned me
• 35:03
  that it was gonna be a little anticlimactic
• 35:05
  you know
• 35:07
  which it was I didn't really have side effects from it
• 35:09
  but it was it was just exciting because
• 35:12
  you know you're part of science
• 35:14
  these are these TILs that they had manufactured
• 35:17
  and grown and done all of that
• 35:19
  and there's so much hope in that
• 35:21
  and you know
• 35:22
  the nursing staff they were all really excited
• 35:24
  um there's a lot of people in the room um
• 35:26
  and they treated everything so carefully and
• 35:30
  you know Doctor Kammula and his
• 35:32
  his team were there and everything was just
• 35:34
  it was really exciting and so we get this infusion
• 35:36
  then we're like okay
• 35:38
  then we just kind of hung out the rest of the day
• 35:40
  so um
• 35:41
  I just really remember the excitement from everyone
• 35:44
  that day and my dad and husband were there
• 35:46
  and so it was it was just really cool
• 35:48
  to feel like
• 35:50
  we were really starting on something
• 35:51
  that could really help me
• 35:53
  yeah absolutely
• 35:54
  Castle Biosciences is a proud sponsor of this
• 35:57
  Eye Believe Podcast Castle's innovative
• 35:59
  uveal melanoma tests provide valuable information
• 36:02
  about the risk of your eye cancer spreading
• 36:04
  to help you and your healthcare team
• 36:06
  individualize the management of your disease
• 36:09
  to learn more visit Castlebiosciences.com
• 36:12
  um okay
• 36:13
  so then after that you had six rounds of IL-2
• 36:16
  so maybe just explain
• 36:18
  what is that and how did your body handle it
• 36:21
  yeah so that's an immunotherapy that ideally
• 36:24
  kind of helps wake up the TILs
• 36:26
  once they're in your body
• 36:27
  to kind of put them to work
• 36:28
  um
• 36:30
  I believe and again
• 36:32
  look this up I believe
• 36:33
  that the TILs were kind of grown in some of the IL-2
• 36:37
  so they're familiar with it
• 36:38
  so that's why when they put it in your body
• 36:40
  it kind of wakes them up why they're
• 36:42
  why that's kind of connected
• 36:43
  um and so it's an immunotherapy
• 36:45
  and there were six rounds
• 36:47
  I think it was every eight hours
• 36:48
  and really
• 36:49
  it just kind of depends on how your body handles it
• 36:52
  if you do the full six rounds
• 36:54
  um I thankfully was able to do it
• 36:57
  the weirdest part really
• 37:00
  I mean there is fatigue
• 37:01
  but they talk about like
• 37:02
  these shakes that you get
• 37:03
  and so it really was you know
• 37:06
  they the nurses were so spot on
• 37:09
  they were like you're probably gonna get it within 30
• 37:11
  45 minutes you might get these
• 37:13
  once you get those we'll give you this medicine X y
• 37:15
  Z and they're pretty spot on
• 37:17
  um but it was
• 37:19
  you know about
• 37:20
  I think 30
• 37:20
  45 minutes in I just started uncontrollably shaking
• 37:23
  they had this warm blanket
• 37:26
  balloon type situation they put over me
• 37:29
  and then I got medicine and they
• 37:31
  they stopped after a few minutes
• 37:32
  but that happened probably four of the six rounds
• 37:36
  um it wasn't necessarily painful
• 37:38
  it was just uncomfortable and
• 37:40
  and weird um yeah
• 37:43
  and really just the biggest discomfort for me was
• 37:45
  I just had to be hooked up to all this stuff
• 37:47
  at all times um
• 37:49
  and getting a lot of fluid
• 37:50
  so getting up and down
• 37:51
  and not really being able to sleep
• 37:52
  cause having you know
• 37:53
  being checked on at all times
• 37:55
  that was probably the most uncomfortable part of that
• 37:57
  but it wasn't
• 37:58
  it definitely was not as bad as I expected
• 38:01
  um I have told my husband and friends like
• 38:05
  I would rather go through that again
• 38:06
  than do the colitis or the Ideaya again
• 38:09
  because of just the way I had side effects
• 38:11
  and I know it's different for everyone
• 38:12
  but that's one reason I really wanted
• 38:15
  you know
• 38:15
  to talk with you about this is because I do think
• 38:17
  TIL is explained to be this really big scary
• 38:21
  horrific process um
• 38:23
  I think someone had
• 38:24
  what a doctor or a nurse somewhere else had
• 38:26
  called it barbaric I was like great
• 38:28
  that's exciting um
• 38:29
  but it really was doable you know
• 38:32
  when you are wanting to fight this thing
• 38:35
  and you're wanting to have more years days
• 38:39
  whatever it is
• 38:40
  I think going through something like this
• 38:43
  which is of course
• 38:44
  uncomfortable and has pain and
• 38:46
  and everything but it's
• 38:47
  you know it's worth it
• 38:48
  a little bit of discomfort is worth a lot of hope
• 38:51
  well and it's temporary right
• 38:52
  like it's right now
• 38:54
  I mean you
• 38:54
  you had this is
• 38:55
  at this point we're seven days nine
• 38:58
  seven days eight days on
• 38:59
  you know day eight for the TIL
• 39:01
  and then six six doses
• 39:03
  which were every did you say every eight hours
• 39:05
  I think it was every eight hours yeah
• 39:06
  eight hours yeah
• 39:06
  every eight hours so
• 39:08
  I mean eight times six is crap
• 39:10
  what is that don't ask me 48
• 39:13
  48 hours that's two days
• 39:15
  um right
• 39:17
  somebody do my math my kids aren't here to correct me
• 39:20
  um but
• 39:21
  I mean that's
• 39:22
  that's 10 days and then you have the next period of
• 39:25
  time of observation
• 39:26
  and staying in the hospital to make sure that
• 39:28
  you know that you're responding okay
• 39:29
  they don't need to address anything particularly um
• 39:33
  and I mean that's
• 39:34
  I mean I'm
• 39:34
  I'm the same as you like
• 39:35
  I feel like that's how a lot of people have described
• 39:38
  the Hepzato treatment is like
• 39:39
  it's kind of barbaric sounding right
• 39:41
  like you got all this
• 39:42
  I mean they put you to sleep every time
• 39:43
  they put all of these catheters into your neck
• 39:45
  and into your groin like
• 39:46
  and it is physically you know
• 39:48
  really kind of strenuous
• 39:49
  for the 24 hours that you're dealing with it
• 39:52
  but then you go home and like
• 39:53
  for the most part most people are up and at it within
• 39:57
  you know a week
• 39:58
  and they lead pretty normal lives
• 40:00
  I mean there's obviously
• 40:02
  with everything there are exceptions
• 40:03
  and it's not to say that you know
• 40:05
  people who do TIL
• 40:06
  don't also experience a gamut of symptoms
• 40:08
  and have challenges
• 40:10
  but it's not like a 100% right
• 40:13
  like we get to be our own statistic and right
• 40:15
  who knows you could be someone who responds super well
• 40:17
  and doesn't have horrendous side effects or
• 40:20
  like you said it's temporary
• 40:22
  and you can go through something temporarily
• 40:24
  I I almost feel like
• 40:25
  uveal melanoma patients in the cancer world
• 40:27
  we get a little spoiled because we have a cancer
• 40:30
  that's so different than other cancers
• 40:32
  but it's also treated differently than other cancers
• 40:34
  and if you don't go through an intense clinical trial
• 40:37
  or something like TIL or Hepzato on a regular basis
• 40:41
  you don't really have a cancer treatment
• 40:42
  like there's not a a
• 40:44
  I mean I didn't have treatment like
• 40:45
  other than microwave ablation surgery
• 40:47
  I didn't have anything
• 40:48
  that was really invasive to my life
• 40:50
  on a consistent basis for years when
• 40:53
  and I lucked out like
• 40:54
  in that regard um right
• 40:56
  most cancers don't have that luxury of any period of
• 40:58
  time that you get to kind of just watch and wait and
• 41:01
  and the watching and waiting sucks
• 41:02
  but like
• 41:03
  I feel like it it almost trains us
• 41:05
  as patients to expect that
• 41:07
  we should never have to do anything hard
• 41:09
  but right
• 41:10
  I mean in the
• 41:11
  in the world of cancer treatment
• 41:12
  I mean and
• 41:13
  and I'm not at all saying
• 41:14
  that all cancer treatment should suck
• 41:15
  and be hard like
• 41:16
  I work with a naturopathic oncologist personally
• 41:18
  because I believe that
• 41:19
  it shouldn't completely wreck my entire way of living
• 41:23
  but we can do hard things
• 41:25
  especially when they're temporary
• 41:27
  absolutely and
• 41:28
  you know around after my diagnosis
• 41:31
  one of my best friends
• 41:32
  had gotten diagnosed with breast cancer
• 41:34
  and so she went through all of that treatment and that
• 41:36
  you know chemo every week is just exhausting
• 41:39
  and watching her go through that and surgery um
• 41:42
  I almost felt a little spoiled that I was like okay
• 41:45
  I get this little stint of time in the hospital
• 41:47
  and then I get out you know
• 41:49
  the mental toll for me
• 41:50
  has been way more difficult than the physical toll
• 41:52
  but um
• 41:54
  I mean again
• 41:55
  you know I think whenever you get this diagnosis
• 41:57
  you just get some kind of inherent resilience
• 41:59
  where you're like whatever
• 42:00
  do whatever to me
• 42:01
  that can keep me here longer to be with my people and
• 42:04
  um and just give me hope to
• 42:05
  you know ideally
• 42:07
  one day be free of this you know
• 42:09
  yeah absolutely
• 42:11
  okay well
• 42:12
  let's fast forward a little bit
• 42:13
  because it's been a good number of months for you
• 42:16
  since your initial TIL treatment um
• 42:18
  and you shared recently that your
• 42:21
  is it resist uh huh
• 42:23
  or resist yeah
• 42:24
  your resist um
• 42:25
  showed 76% shrinkage
• 42:27
  so where were you when you heard that news
• 42:30
  and what did it feel like
• 42:31
  yeah so with um
• 42:33
  the resist scoring it's interesting
• 42:34
  what they do for clinical trials
• 42:36
  is they essentially choose um
• 42:38
  some target lesions
• 42:39
  they choose target lesions to measure
• 42:40
  so they're not looking at everything
• 42:42
  uh so after my first scan
• 42:44
  which was after 4 4 weeks after
• 42:48
  I don't I can't remember this
• 42:49
  four weeks after I got the actual TIL
• 42:50
  or after the full treatment
• 42:51
  but um
• 42:53
  I went to Pittsburgh I got a scan
• 42:56
  and I am very impatient and so I
• 42:59
  and Doctor Kammula is very responsive
• 43:01
  I meant to say that too
• 43:02
  the whole time he came and saw me every day
• 43:05
  asking for side effects checking in
• 43:07
  emailing me after he's just so incredible and so um
• 43:12
  compassionate and just wants the best for his
• 43:15
  his patients he's so dedicated um
• 43:17
  but after we got our scan
• 43:18
  I was like hey
• 43:19
  Doctor Kammula got my scan
• 43:20
  if you see anything cool let me know
• 43:22
  uh and he had kind of emailed me back like
• 43:24
  things look great and I was like
• 43:26
  does that mean shrinkage and he said yes
• 43:29
  and for my husband and I we had never heard shrinkage
• 43:32
  since I had gotten the metastatic diagnosis
• 43:34
  and so that was kind of hard to comprehend
• 43:37
  and originally when we saw my resist scoring was 67%
• 43:43
  and um
• 43:45
  you know it looks different
• 43:46
  on how a typical radiologist would read the MRI
• 43:50
  versus Doctor Kammula because he had explained
• 43:53
  you know I've seen your liver
• 43:55
  I've seen your lesions they have a lot of melanin
• 43:57
  and so the way that they show up on different um
• 44:01
  different types of the scans or different
• 44:03
  I don't know all of the
• 44:04
  the sciencey stuff it looks a little bit different
• 44:06
  so he takes the time to look at that himself
• 44:08
  and so um
• 44:11
  yeah that first scan
• 44:12
  we were just in shock
• 44:14
  I think I'm still in a little bit of shock
• 44:16
  um the second time
• 44:18
  he had you know
• 44:19
  said things continued or the
• 44:20
  after my third scan things continued to look good
• 44:24
  you know we're not seeing any growth
• 44:25
  which it sounds like typical
• 44:26
  typically with TIL if you have growth
• 44:28
  you see it it's not like yeah
• 44:30
  it's like pretty soon after yeah
• 44:32
  like I'm not
• 44:33
  it's not this kind of questioning
• 44:34
  and so um yeah
• 44:37
  this this
• 44:37
  whenever I saw the 76 it was actually on my note
• 44:40
  I went through and looked at the note after
• 44:41
  and I just it
• 44:44
  I mean I just doesn't feel real
• 44:47
  and I'm I'm so thankful
• 44:48
  and I hope it I hope it continues
• 44:50
  I have scans in at the end of January
• 44:53
  but it just provided real
• 44:55
  real true again hope um
• 44:59
  for kind of the first time
• 45:01
  and just a little bit of pride in myself
• 45:05
  for choosing this and doing this treatment
• 45:07
  and just thankful that I have Doctor Kammula
• 45:10
  and that there's these doctors
• 45:12
  that are giving their whole career to this rare cancer
• 45:17
  and giving patients like us
• 45:19
  especially young patients
• 45:20
  you know hope to have a life
• 45:23
  yeah absolutely
• 45:24
  um and it's
• 45:25
  I mean
• 45:27
  it's so tricky right
• 45:28
  you wanna have the hope you wanna have the um
• 45:32
  kind of look to the future
• 45:33
  you don't wanna be caught in the fear all the time
• 45:35
  but sometimes the fear is really big um
• 45:38
  and it's really hard to kind of overcome that hurdle um
• 45:42
  but I'm so glad
• 45:43
  that you've been able to have these periods of time
• 45:44
  like where you've just had okay like
• 45:46
  like cautiously optimistic for a little while and then
• 45:49
  like a little more optimistic and um
• 45:52
  and I wanna point out you know
• 45:53
  just kind of as a disclaimer
• 45:54
  like just keep in mind
• 45:55
  these are Sophie's outcomes and Katie's
• 45:57
  if you've heard of Katie's story
• 45:59
  that's Katie's outcomes
• 46:00
  and we're sharing this with the intention to be um
• 46:03
  you know hopeful
• 46:03
  and to empower you guys with some information
• 46:06
  about the TIL therapy
• 46:07
  and about somebody's real life experience recently
• 46:09
  um but
• 46:10
  you know please keep in mind
• 46:11
  like don't take this as a blanket
• 46:13
  you know
• 46:13
  we're expecting this kind of outcome for everybody
• 46:16
  um obviously
• 46:17
  we hope for this kind of outcome
• 46:18
  for more and more patients
• 46:19
  and I think that's why Doctor Kammula is so
• 46:22
  I mean just in
• 46:23
  in my observation of what he's been doing
• 46:24
  that's why he's so dedicated
• 46:26
  and why he's so intent
• 46:27
  on finding how he can help this work
• 46:29
  for more and more patients
• 46:31
  and I love seeing that
• 46:32
  he's being a little more successful
• 46:35
  time and time again I think that's
• 46:36
  that's so good
• 46:37
  I was gonna say and I am so grateful that I am kind of
• 46:40
  I you know
• 46:41
  I like your I'm be your own statistic
• 46:43
  that I'm falling into this category hopefully
• 46:46
  and you know
• 46:46
  I have a friend of mine who's an oncologist
• 46:48
  and he has been a godsend
• 46:50
  and he's pretends to be my on call oncologist
• 46:52
  I'll send him stuff and be like
• 46:53
  before I can get a hold of mine
• 46:55
  what's going on should I worry
• 46:56
  um and we've just kind of said like
• 46:58
  why not us like
• 46:59
  why should it not be us you know
• 47:01
  we've had all of this bad luck before
• 47:04
  let's really lean into the hope
• 47:05
  that we could be in this small group that
• 47:07
  that it works for and that we can help hopefully
• 47:10
  I mean I hope to my
• 47:13
  the lymphocytes the TILs that they grew
• 47:15
  are some of the highest that they've seen
• 47:17
  and so I'm hoping that somehow
• 47:19
  they can continue research through what
• 47:21
  whatever is going on with mine
• 47:22
  to help more people yeah
• 47:24
  no that's so exciting
• 47:26
  oh man
• 47:27
  okay so
• 47:28
  just to kind of close out
• 47:30
  for anybody who's listening
• 47:31
  and who's considering doing the TIL
• 47:32
  or just generally a clinical trial
• 47:34
  what is something that you feel like they should know
• 47:37
  I mean one
• 47:38
  please reach out I'm happy to talk to anyone
• 47:40
  um you know
• 47:42
  I just I think you should know
• 47:44
  of course know the risk
• 47:45
  and
• 47:45
  I think the risk are gonna be put out there for you
• 47:47
  pretty loudly but also the
• 47:49
  the benefits you know I
• 47:51
  I've met with other patients
• 47:53
  who were on clinical trials who
• 47:54
  maybe they're the the one that it worked for
• 47:56
  and so having that hope even though it's
• 47:59
  it's small but also knowing that
• 48:01
  you know
• 48:03
  whenever
• 48:04
  whenever you're part of this science it's
• 48:07
  it's really it's really cool
• 48:08
  and it's really huge and I think it's
• 48:10
  it's special and but again
• 48:13
  if you are in the place where you're like
• 48:14
  I don't like this this doesn't feel good to me
• 48:16
  it doesn't feel right you know
• 48:18
  trust your gut too
• 48:18
  and also get those second opinions
• 48:20
  and make sure that you're with a provider
• 48:23
  that can explain the risk
• 48:24
  and the benefits that are the possible benefits to you
• 48:26
  and that you feel comfortable with
• 48:27
  I think that that's a big one too
• 48:29
  is to advocate for yourself
• 48:30
  and to feel
• 48:31
  comfortable with the doctor that you're with
• 48:32
  and feel confident in them
• 48:34
  yeah absolutely
• 48:36
  and you've done such such a good job
• 48:37
  of just
• 48:38
  teasing out which oncologist you wanted to work with
• 48:41
  and why and
• 48:42
  and um
• 48:43
  I think I think it's been really kind of just rewarding
• 48:47
  I think from a patient to patient perspective
• 48:49
  just to see you like
• 48:50
  grab this by the reins and just go like
• 48:53
  where you wanted to go
• 48:54
  and to keep pursuing what you wanted
• 48:56
  and just trusting that things were gonna work out
• 48:58
  you know even if you couldn't see exactly how
• 49:00
  like you were just trusting that like okay
• 49:02
  let's move forward next step
• 49:03
  like something's gotta
• 49:05
  something's gotta stick eventually
• 49:07
  exactly that's kind of
• 49:08
  I don't like when people tell me
• 49:10
  everything happens for a reason
• 49:11
  but in my mind I can say okay
• 49:13
  I can look back and say okay
• 49:14
  maybe it was good I didn't get the RPT2
• 49:16
  because it might have impacted my TILs
• 49:18
  you know I can look back on that
• 49:19
  but yeah
• 49:20
  just wanting to like
• 49:22
  figuring out what's gonna stick
• 49:23
  something's gotta work and so
• 49:25
  and hopefully for sure this is it
• 49:27
  all right so Sophie
• 49:28
  what are you most excited about
• 49:30
  like just looking forward in your life
• 49:32
  like with your family
• 49:33
  your husband and what TIL could mean
• 49:35
  as this you know
• 49:36
  hopefully
• 49:37
  continues to improve research for uveal melanoma
• 49:41
  I mean in an ideal world
• 49:42
  I would be someone like Katie
• 49:44
  who gets to this no evidence of disease spot
• 49:47
  and you know
• 49:48
  for me I
• 49:50
  I want to be a mom I want to have a family
• 49:53
  I um
• 49:54
  you know adoption has always been on my heart
• 49:57
  and I'm wondering if it's
• 49:58
  all of this is intertwined somehow
• 50:00
  so that's a big one for me
• 50:02
  is just to have a family
• 50:03
  and then also to just continue to live
• 50:06
  um I have a ton of great friends
• 50:09
  they've got a lot of great kids
• 50:10
  um I'm antie soph to a lot of them
• 50:13
  the first someone coined that
• 50:14
  but just being able to be an aunt and a sister
• 50:18
  and a daughter and a wife and a friend
• 50:20
  and just experience life
• 50:22
  with this new form of gratitude
• 50:25
  that I wish I didn't have
• 50:28
  but I also I'm a little bit grateful
• 50:29
  that I do have this perspective
• 50:31
  um and just going forward for TIL
• 50:34
  for uveal melanoma and other cancers
• 50:36
  just the hope that this can be something
• 50:38
  that we start to see the statistics being even higher
• 50:42
  and helping more people
• 50:43
  and that this could be a treatment for
• 50:46
  you know you go into the hospital
• 50:47
  you have this surgery
• 50:48
  you go into the hospital for a few weeks
• 50:50
  and then you get this new immune system
• 50:53
  and it kills the cancer you know
• 50:54
  that's putting it very briefly
• 50:56
  but just that this could be a continued
• 50:59
  hopeful treatment for
• 51:00
  for those of us with uveal melanoma
• 51:02
  just cause I know having a rare cancer is difficult um
• 51:07
  of course having cancer in general is difficult
• 51:09
  but to have that hope is great
• 51:11
  and you know I
• 51:13
  you know I also do want to say I am not always this
• 51:16
  like optimistic
• 51:17
  positive great person
• 51:18
  you know having cancer and getting these
• 51:20
  this bad news is heartbreaking
• 51:24
  and heavy and devastating
• 51:25
  and I wouldn't wish it on
• 51:27
  on anyone but you you know
• 51:29
  you kind of have to make a choice to okay
• 51:31
  am I gonna let this knock me down for a week
• 51:33
  or are we gonna have
• 51:35
  have a bad day and then get back up the next day
• 51:37
  and so that's something
• 51:38
  I also just encourage other patients to do
• 51:40
  which no one deserves this diagnosis
• 51:43
  no one deserves to be in this situation
• 51:45
  but um
• 51:47
  feel those feelings go to therapy um
• 51:50
  get on medication if you need to haha um
• 51:52
  but do all of those things
• 51:53
  and then also continue to live your life
• 51:55
  um I do think
• 51:56
  like you said with uveal melanoma
• 51:58
  it's a little bit different
• 51:59
  where sometimes the treatments are a little bit
• 52:01
  they might be briefer
• 52:02
  or it doesn't really impact your overall physical life
• 52:07
  at right at the first
• 52:08
  you know so continuing to live your life
• 52:11
  Sophie thank you so much for being here today
• 52:13
  and for joining me on the podcast
• 52:14
  we are so glad to have you here
• 52:16
  have your bright and smiley face um
• 52:18
  I love seeing your posts and just checking in with you
• 52:20
  and I'm I mean
• 52:21
  I feel privileged to be kind of
• 52:22
  on a front row seat to what you've been experiencing
• 52:25
  and I really hope your January scans go so well
• 52:28
  um it's really
• 52:30
  I think it's really neat to see um
• 52:32
  you know your story continuing to evolve
• 52:34
  and stories like Katie Doble's um
• 52:37
  and just to to know that they're
• 52:38
  you know
• 52:39
  not necessarily a promise of a cure immediately
• 52:42
  but that they're proof that progress is real in science
• 52:45
  right and that progress is happening in uveal melanoma
• 52:48
  um and it
• 52:49
  how cool that you get to be a part of that right
• 52:51
  and that you get to be a part of
• 52:52
  shaping the future of uveal melanoma treatments
• 52:55
  just because of how your body has responded
• 52:58
  like
• 52:59
  it is it's so
• 53:00
  it's so neat and so unique
• 53:02
  um but Sophie
• 53:03
  to end if you could leave our listeners
• 53:05
  just with one affirmation
• 53:06
  or just belief today what would that be
• 53:09
  I I just think that there's
• 53:10
  there's always hope um
• 53:12
  always lean on that hope and there is always hope
• 53:14
  and like you said there's always
• 53:16
  there's continued progress
• 53:17
  so don't you know
• 53:18
  there's no reason to lose that
• 53:21
  and cling on to what you have
• 53:22
  cling on to the hope that you have absolutely
• 53:25
  well listeners
• 53:26
  thank you guys for joining us here on YouTube
• 53:28
  if you are here make sure to comment below
• 53:30
  tell us where you're from in the comments and um
• 53:32
  tell somebody else about this podcast today
• 53:34
  we'd love to have more subscribers
• 53:36
  and just as a huge thanks
• 53:38
  we wanna make sure you guys know
• 53:39
  we could not do this podcast and our YouTube channel
• 53:41
  without the help of our sponsors
• 53:43
  we have Castle Biosciences
• 53:45
  Immunocore Aura Biosciences
• 53:47
  and Delcath Systems
• 53:48
  who helped to make this podcast possible
• 53:50
  so thanks for joining us today
• 53:51
  and we will see you guys next time