Latest / The Eye Believe Podcast / Through a Patient’s Experience | The Eye Believe Podcast
Transcript
- 0:03hey you guys
- 0:03thank you for joining us today on the Eye Believe Podcast
- 0:06I'm your host Danet Peterson
- 0:08and I'm joined today with Wendy
- 0:10who's been a guest on our podcast before
- 0:11so if you haven't heard from her
- 0:13or listened to the episodes
- 0:14um some of the webinars that she's participated in
- 0:17the Eye On Mental Health um
- 0:19Eye On Mental Health like
- 0:20panels that she's participated in
- 0:22then I'm gonna link some of those in our show notes
- 0:24in our description you guys can go check those out
- 0:26to hear a little bit more of like
- 0:27some of her insights but today
- 0:29we're gonna be picking her brain
- 0:30a little bit about CT DNA
- 0:32so if you guys don't know what that is
- 0:34don't worry we'll get there
- 0:35but I will also make sure to link some of the like
- 0:38what is what is CT DNA
- 0:40kind of episodes from Doctor Ma
- 0:42some other doctors um
- 0:44but we've got a webinar coming up
- 0:45and I'm really excited to just
- 0:48kind of get a patient's perspective
- 0:49especially another uveal melanoma patient like myself
- 0:52who's been having CT DNA drawn
- 0:54it's a blood test and so um
- 0:57Wendy thanks so much for joining me
- 0:59yeah thank you for having me Danet
- 1:01so Wendy
- 1:01let's chat like
- 1:02just elevator pitch style
- 1:04like give us an update
- 1:05like when were you initially diagnosed
- 1:07when did you discover that you had gone metastatic
- 1:10and where are you at today
- 1:12yep um
- 1:13I was originally diagnosed in December of 2,018 and
- 1:19you know went several years without metastasis
- 1:23and was diagnosed with metastasis in 2023
- 1:27um and it metastasized in a rare way um
- 1:32it metastasized to my breast um
- 1:34and so we I was one of the first patients
- 1:38that my medical oncologist started using the CT DNA on
- 1:43and today oh
- 1:44sorry I should say sorry
- 1:46I should add today um
- 1:47today I'm no evidence of disease
- 1:49which is really exciting um
- 1:51it it
- 1:52it comes at a cost
- 1:53I have quite a few side effects from immunotherapy but
- 1:58um those are all pretty well managed now
- 2:00and I'm actually feeling the best I've felt in
- 2:03several years so
- 2:04it's really exciting to enjoy my
- 2:07no evidence of disease now
- 2:09that's so exciting and it's also um
- 2:12just so incredibly hopeful
- 2:14I think for the rest of us in the community
- 2:16especially those of us dealing with metastatic disease
- 2:19um just to like
- 2:19see and hear from someone even
- 2:21even someone who's kind of in a more rare
- 2:23you know subgroup of the metastatic community
- 2:25because I know that sometimes that can feel like oh
- 2:28like you know my
- 2:29my no
- 2:29my no evidence of the disease like
- 2:31doesn't really count because like
- 2:32I have like
- 2:33this other this other piece of this
- 2:35the puzzle
- 2:35that was a little easier for them to figure out
- 2:38like it hasn't been easy for you um
- 2:40and your journey is no less valid
- 2:43you know in just in
- 2:44just kind of reaching this point and um
- 2:47but I know that you know
- 2:48we've talked about this before in our
- 2:49our living in the Long Middle series
- 2:51like i can feel really challenging sometimes
- 2:54to kind of grapple with the
- 2:55I'm okay but I'm not okay
- 2:57but I'm also more okay than most people
- 2:59like it's
- 3:00it's a big big mind puzzle to figure out
- 3:06yes it is
- 3:08okay so let's chat CT DNA
- 3:09you said you were one of the first uveal patients
- 3:11that your doctor started drawing CT DNA for
- 3:14so CT DNA
- 3:15blood test like let's
- 3:17let's chat about this like
- 3:18what is CT DNA to you um
- 3:20and how do you like
- 3:21explain this test to other patients or to like
- 3:23people in your family yep
- 3:25um I explain it um
- 3:28it's a way to catch little
- 3:31floating cancer cells that are in my blood
- 3:34um it
- 3:35they took a piece of my tumor from the breast tissue
- 3:40they took that tumor they sent it off to um
- 3:44my doctor uses Natera
- 3:47and sent it off and had it checked
- 3:50and they it came back positive
- 3:53and so I explain it to my fam
- 3:57friends and family as
- 3:58it's just a way to know
- 4:00if there's something floating around in my blood
- 4:04if cancer's active um
- 4:07maybe before you see it
- 4:10the results of it in a test and
- 4:12and where it was really impactful is
- 4:15and this is why my doctor uses it
- 4:17it's a way to get a picture of
- 4:20maybe how your treatment is working
- 4:23before the scans show it's working
- 4:25and so about two months after I did
- 4:29I started my immunotherapy
- 4:31they did another draw and my number came back at zero
- 4:37however on the scans
- 4:38it still looked like the cancer was active
- 4:40and so it took another um
- 4:43actually like another six months almost before the
- 4:47the cancer showed not active on scans
- 4:51so I mean
- 4:51that's a really exciting thing for it
- 4:54so yeah well
- 4:55and I mean
- 4:56it's such an it's such a unique piece of the puzzle
- 4:59that we have the ability to use
- 5:01and like
- 5:02just in case you didn't catch it
- 5:03Wendy said that she had a
- 5:05a biopsy of the breast tissue
- 5:07so a biopsy of an actual
- 5:08live
- 5:09to live tumor that was confirmed to be uveal melanoma
- 5:12that they then were able to put into this test
- 5:16basically so this is a unique
- 5:17individualized test that is
- 5:19they call it tumor informed
- 5:20if you listen to the episode that I did with Doctor Ma
- 5:23where he kind of breaks down the different types of CT
- 5:25DNA um
- 5:26and it basically makes the
- 5:28kind of searching for a needle in the haystack
- 5:30that they use when they're like oh
- 5:31it's so hard to find uveal melanoma in the blood
- 5:33it's like searching for a needle in a haystack
- 5:35well this makes our haystack like
- 5:36a little more narrow
- 5:38and it makes those needles in the haystack
- 5:40maybe a little sharper for them to like
- 5:42pick up on or the magnet is a little more sensitive
- 5:45like
- 5:45that's kind of some of the analogies that I've heard
- 5:47kind of noised about in the community
- 5:50especially from the doctors who use this test
- 5:52like Doctor Hall Doctor Ma
- 5:53I know Doctor Moser out here uses it
- 5:55and I'm hopeful that we'll see more people using this
- 5:58just because like
- 5:59I can't tell you how many times
- 6:01I've heard from patients and
- 6:02maybe you're one of those patients
- 6:03who your doctor has said oh
- 6:05you know
- 6:06it's been three months you've been on this treatment
- 6:08it's not working we don't see it working in scans
- 6:10like it's it
- 6:10you know cancer looks
- 6:12it looks like it's growing a little bit
- 6:13or it's it's barely stable or
- 6:15you know just
- 6:16it still looks too active for comfort
- 6:18we're gonna take you off this treatment
- 6:19and try something different
- 6:21wouldn't it be amazing if we had
- 6:23you know
- 6:24something like this consistently across the board
- 6:27that we had patients who could use this
- 6:29right because like
- 6:30can you imagine Wendy
- 6:31if you were taken off your immunotherapy at that
- 6:34at that point three months after starting it
- 6:36when they were like oh
- 6:37it doesn't really look like it's working
- 6:39yeah like
- 6:40you wouldn't you wouldn't be here in the same way today
- 6:43yeah exactly yeah
- 6:45oh OK
- 6:46alright so when CT DNA entered the picture for you um
- 6:50it was it was right after you were metastatic and
- 6:53you know obviously right after that biopsy
- 6:55um why do you feel like you find it helpful personally
- 6:59like what are kind of
- 7:00some of the things that you feel reassured by
- 7:02especially now that you're
- 7:03like a few years into using this
- 7:05as part of your ongoing cancer screening
- 7:07yeah you know
- 7:08it's really it's
- 7:10it obviously isn't a cure
- 7:12but it provides more information
- 7:14and
- 7:14I'm somebody who requires a lot of information for my
- 7:18for my brain to stay in a
- 7:20in a peaceful place
- 7:22and so the way that we have been using it is
- 7:26I like to get my CT
- 7:29DNA done about three weeks before scans
- 7:33and it just helps me kind of
- 7:36go into the scans with a little more information
- 7:39um so when it's zero
- 7:42I go into scans a little more
- 7:45just a little more at peace
- 7:46like it's just a little
- 7:48kind of going in for a checkup
- 7:50um I mean it
- 7:52it could still come back that there's something active
- 7:55I mean it's not perfect
- 7:56but it provides me a little more peace um for
- 8:01for Scan Day and most recently um
- 8:05I am now going every six months between scans
- 8:09and we do the CT DNA as a middle checkpoint
- 8:14and as long as it's zero we stay on the six months
- 8:18six month track um
- 8:20you know I think
- 8:21I'm thinking more about the future
- 8:23of how I will use it to maybe get scanned less
- 8:27because so much anxiety comes with scans
- 8:30and because we're scanned so frequently
- 8:33oftentimes things will pop up really early
- 8:37that we have to wait additional time
- 8:39before something can be done about it
- 8:42or before you can move it's
- 8:44we've moved far beyond the
- 8:47the days when I was first diagnosed
- 8:49when you were told you were metastatic and like
- 8:53your time was rapidly ending
- 8:55because it was discovered so late
- 8:58and so I think
- 9:00CTDNA is just another tool that can help understand
- 9:07you know like
- 9:08the aggressiveness
- 9:09with which you need to treat something
- 9:11yeah absolutely
- 9:13so just out of curiosity
- 9:15in all of the time that you've had CT DNA drawn since
- 9:18I think you said it was 2023
- 9:19when you had metastatic disease initially discovered
- 9:22um has there ever been a time even
- 9:24you know during active treatment
- 9:25that it has gone up
- 9:27and that you've gone into scans with it elevated
- 9:30um and how have you kind of grappled with that feeling
- 9:32yeah mine has actually
- 9:34mine has not gone up mine has
- 9:37it was it
- 9:39it tested positive at first
- 9:41and then it has main it has maintained at zero um
- 9:45the entire time so I'm fortunate
- 9:47um however
- 9:48you know when I think about
- 9:50you know if I get it again in a few months and it
- 9:53and it does show up as positive
- 9:56that's just an indication to me that we
- 10:00we need to do scans we need to see where
- 10:03where it is
- 10:04and I go on a little bit closer surveillance
- 10:08um yeah
- 10:09and to see well
- 10:11and I I love what you said about how
- 10:13like right now
- 10:13at least for where you're at in your metastatic journey
- 10:15and just the stability that you have been experiencing
- 10:18this is giving you an opportunity to not have scans
- 10:22quite as often right
- 10:23most metastatic people
- 10:25even when they are no evidence of disease
- 10:27like
- 10:27I was no evidence of disease in my metastatic journey
- 10:30like I had one liver ablation
- 10:31and then I was no evidence of disease for
- 10:33basically almost 18 months
- 10:35and like
- 10:36that's a long time to still be having scans
- 10:38every three months yep
- 10:41like and
- 10:41and we know like
- 10:43any of you guys listening
- 10:44if you've had scans you know
- 10:46how anxious you feel like
- 10:48we talk about scanxiety a lot in the community
- 10:50because it's a thing it's a thing that we experience
- 10:53and it's a full body experience
- 10:54um and
- 10:56and like you said like there's and
- 10:58and we talked about this in the Seattle meeting a lot
- 11:00with Doctor Hall with um
- 11:02with the doctors I think Doctor Bhatia at
- 11:04Fred Hutch like
- 11:05we talked a lot about this in the Seattle meeting at
- 11:07at Eye Believe
- 11:07because they were just huge believers of the idea that
- 11:11like it's not worth the extra anxiety for our patients
- 11:14for them to necessarily like
- 11:16I mean yes
- 11:17like we have to balance the okay
- 11:18it's helpful to find out sooner
- 11:20right right
- 11:20to find out if something is growing when it's small
- 11:23so that we can keep an eye on things literally
- 11:26um Wendy and I both have one eye
- 11:28if you guys didn't know that
- 11:29so we find those kinds of phrases really funny
- 11:32um but like
- 11:33it's one thing to find out about it
- 11:35and for you
- 11:36to be able to do something with that information
- 11:38it's another for your doctor to be like
- 11:40well we have to just sit on this
- 11:41it's not big enough to do anything
- 11:43we can't biopsy this yet um
- 11:45so I love that this is a this is a unique tool
- 11:48that could be used to kind of
- 11:49space out that cancer screening
- 11:51especially if you reach a point of stability
- 11:53but then like
- 11:54on the flip side when you're in active treatment
- 11:56and you need it to kind of gauge the response
- 11:59this could be something that helps
- 12:00keep you on treatment
- 12:02when maybe imaging would otherwise kick you off
- 12:05I would love I mean just
- 12:06you know hypothetically
- 12:07like I think this would be a really unique tool
- 12:09to be used across the board for like
- 12:11clinical trials I think that it would be really
- 12:13really helpful to have this as a data point
- 12:16and obviously like
- 12:16I can't make the rules but like
- 12:18I think it would be a really helpful data point
- 12:20for doctors to have
- 12:22because we know so many times cancer responds
- 12:25and it kind of gets inflamed in the imaging
- 12:28and then it starts to shrink
- 12:30or even when it's dying like
- 12:31I mean it's
- 12:32it's kind of like when when a cancer cells die
- 12:35like they
- 12:36they get bloated and die like poof
- 12:39yeah um
- 12:39I'm I'm making all kinds of scientific sense here
- 12:42I know um
- 12:43but I just
- 12:44I think that your thoughts about this are really
- 12:46just really helpful I think
- 12:48and I I can see especially like
- 12:50you're three years into using this test almost
- 12:52and I can see it in the way that you manage
- 12:54your anxiety around your disease
- 12:56that
- 12:56this has been something that has been helpful for you
- 12:59um and
- 13:01and I appreciate that like
- 13:02you can kind of hypothetically think about OK
- 13:04if it did elevate that like
- 13:06you have enough experience with the test now
- 13:09to recognize that like OK
- 13:11like the goal is not to stay at zero forever
- 13:13the goal is for this test to be able to detect where
- 13:16whatever it's gonna detect right
- 13:18and for us to be able to use that information
- 13:20I think so many times like
- 13:21I don't know like
- 13:22do you feel like we sometimes
- 13:23as patients frame it as like oh
- 13:25the only good thing is for it to be zero
- 13:26or the only good thing is for my scans to be empty like
- 13:30but they're kind I don't know
- 13:31like we have to kind of
- 13:33grapple with some of the nuances
- 13:34that come with metastatic disease
- 13:36for sure yeah
- 13:37and I think definitely like
- 13:38when you have metastatic disease
- 13:40like obviously
- 13:41we all want to be zero or have nothing show up forever
- 13:45um
- 13:47but that historically
- 13:49doesn't typically happen for everyone
- 13:52and so it's nice to just know that you're looking
- 13:56you have some you have a tool out there
- 13:58that can be used to help find something
- 14:01you know earlier
- 14:03and you know I
- 14:04I think about it too
- 14:05in the setting of um
- 14:08you know high risk patients
- 14:11you know can you
- 14:12can we and this is me just going off
- 14:15hopefully it's okay for me to say this
- 14:17no go for it
- 14:18these are my thoughts um
- 14:20you know you have somebody that's class two
- 14:22prame positive
- 14:24can we get to a point where they take the tumor from if
- 14:29especially if you had enucleation like
- 14:31and I'm gonna say a enucleate
- 14:32enucleated patients in particular yeah
- 14:34you have your eye removed
- 14:36they take that tissue they create
- 14:39you know they create your profile based off of that
- 14:41and they search early on
- 14:43to see if you have anything circulating in your blood
- 14:47and then that gets you you know
- 14:49like opens up more doors for more clinical trials
- 14:52or something something like that
- 14:54like that's what excites me about this
- 14:57even more than how I use it
- 15:00that's because
- 15:01I do think that that's a real possibility
- 15:03in the future um yeah
- 15:05you know
- 15:06and that's literally what I was talking to some of the
- 15:09I was talking to some of the people that I know
- 15:10who use CT DNA and like
- 15:12kind of
- 15:13some of the research people behind tests like this
- 15:15and I was telling them I'm like
- 15:17this would be so cool to use like
- 15:21alongside the Castle biopsy test right
- 15:23yes like
- 15:24I mean of course
- 15:25we have the enucleated eye tissues
- 15:26probably gonna be a little bit easier to use
- 15:28to test with
- 15:29because you've got slides and slides and slides of
- 15:31you know eye to work with
- 15:34yeah um
- 15:35but like there's
- 15:37there's just
- 15:37there's so many things in the ocular oncology community
- 15:40like Doctor Jesse Berry is talking a lot about
- 15:43aqueous biopsies
- 15:44and how we can use the fluid in the eye to like
- 15:46kind of detect what's going on um
- 15:49and if there's cancer cells floating around
- 15:51in the fluid of the eye and like
- 15:53then we have the Castle test
- 15:54which takes you know
- 15:55the needle point biopsy okay
- 15:57well can we take core samples
- 15:59like at the time that they treat even a plaque
- 16:01like a plaque treated eye
- 16:02or a proton beam therapy treated eye
- 16:04like can we take those samples
- 16:07and save some in storage or like
- 16:09make sure that it just gets sent off to a tumor
- 16:11informed testing center
- 16:12something like Natera
- 16:14that they can use that tissue
- 16:16to do exactly what you said
- 16:17to track you know
- 16:18metastatic possibility
- 16:19especially for those higher risk patients
- 16:21um yeah
- 16:22I would love to see this used more actively earlier on
- 16:26and I kind of wonder if that's maybe the direction that
- 16:28you know that it will start to pick up momentum more
- 16:31because yeah
- 16:32like I don't know Wendy
- 16:33like
- 16:33have you talked to other patients who are metastatic
- 16:35and they're like what is CT DNA like
- 16:36I've never heard of that yes
- 16:39and whenever I hear that I'm I'm
- 16:41one of the first things I tell newly diagnosed
- 16:44metastatic patients is
- 16:45ask your doctor about CT DNA
- 16:49you know I
- 16:50my doctor uses Natera there are other ones out there
- 16:53but you know
- 16:55ask about it I think it's a really
- 16:57a really important tool um
- 16:59and I think it's still new enough
- 17:01that not all providers like
- 17:04really truly understand what it is
- 17:06especially in the ocular melanoma space
- 17:09it it has been widely used in other cancers
- 17:12for quite a while um
- 17:14but it's newer to the ocular melanoma space
- 17:18yeah absolutely
- 17:19okay so
- 17:20rapid fire couple questions
- 17:21things that maybe
- 17:22somebody who's new to having this test
- 17:23or wanting this test done
- 17:25should know about you know
- 17:26as a patient so
- 17:27in your experience
- 17:28and I'm gonna also share my experience
- 17:29because I've also had CT DNA draws from Natera
- 17:33using you know
- 17:34obviously my oncology orders
- 17:35my oncologist orders the tests
- 17:37um but number one um
- 17:41do you have any level of financial responsibility
- 17:44for the test like
- 17:44is it covered by insurance
- 17:46do you have to pay out of pocket
- 17:47like how does it work for you
- 17:48what's been your experience
- 17:49so I have not paid anything out of pocket
- 17:52my insurance does not cover it
- 17:54um they have denied it every time
- 17:57um
- 17:57I have been told by my doctor to not worry about that
- 18:03I think there's some sort of agreement
- 18:04I'm not I'm actually not positive on that
- 18:07I just know that just like the Castle test
- 18:10I have not paid anything um yeah
- 18:12you know
- 18:12and my insurance denied the Castle test as well
- 18:15um OK
- 18:16and so that's important for sure
- 18:18yeah and that's been my experience as well
- 18:19is that my insurance claim shows this is a denied test
- 18:23um that
- 18:23you know it's too experimental
- 18:25however my doctor has told me okay like
- 18:27but you're not getting bills
- 18:28like Natera is not sending you bills because like
- 18:30essentially he's like
- 18:31they're treating this you know
- 18:33this specific company maybe not all of them do this
- 18:35but this specific company treats uveal melanoma patients
- 18:38um testing as um
- 18:40some something of
- 18:41like maybe a write off
- 18:42like I think that's what Castle does too
- 18:44where they
- 18:44they are able to financially kind of sponsor just to
- 18:47like bulk up the ability to gain the research
- 18:50so that they can then submit that to insurance and say
- 18:53this test does work
- 18:54we need to be able to use this with patients
- 18:56um that's how we get to that point right
- 18:58like Castle now
- 18:59you know in some insurances
- 19:01Castle gets a payment from insurance
- 19:02because they have the data to prove over time
- 19:06you know and all of the patients
- 19:07and the data that they've collected
- 19:08like they have the
- 19:09the ability to prove
- 19:10that there's merit in doing the test
- 19:13and that it helps influence
- 19:14you know treatment decisions
- 19:16monitoring decisions all of that
- 19:17and so like
- 19:18that kind of information doesn't come without patients
- 19:21to you know
- 19:22gather the data with and I
- 19:24like companies like this understand that
- 19:26so yeah
- 19:26I mean
- 19:26that's been something that I have also experienced
- 19:29is that I I haven't been held responsible
- 19:31even if my insurance has come back
- 19:32and denied the claim um yeah
- 19:34so that's something maybe to tell your doctor
- 19:35if they're like well
- 19:36I don't want you to have to foot the bill
- 19:37for something like this yeah
- 19:40have them get in touch with Natera
- 19:42just to see yeah
- 19:43like and
- 19:43and like
- 19:44what's it gonna hurt to ask right
- 19:45like you know
- 19:46they can ask about Natera
- 19:47like
- 19:47Natera has incredible patient advocacy groups and just
- 19:50um patient uh
- 19:51patient coordinators who like
- 19:53will talk to you as a patient
- 19:54and they'll help you figure out like
- 19:56how do I bring this to my doctor
- 19:57so I mean there's
- 19:58there's companies that have the tools
- 20:00and the resources in place
- 20:02for the patients to be able to
- 20:03kind of piece together
- 20:04how could this become a part of my care
- 20:08yep okay
- 20:09so other question um
- 20:11how do you get information
- 20:12like I know we're kind of living in the age of my chart
- 20:16Yay for us um
- 20:17but do you do you personally utilize like
- 20:21Natera's patient portal
- 20:23do you just wait for information from your doctor
- 20:25like what do you find to be kind of
- 20:26helpful to you at this time
- 20:28so Natera I
- 20:31I haven't actually been in Natera's patient portal
- 20:34because I do get the results through my chart
- 20:37from my provider's office
- 20:39before Natera reports it in their portal
- 20:42so I usually have the results um
- 20:46it gets uploaded in my chart
- 20:47I usually have the results
- 20:48probably a good five days before Natera says
- 20:51your test results are ready
- 20:53oh my gosh
- 20:53that's crazy and as I'm
- 20:54and as I'm thinking about it right now
- 20:56actually I have used the patient portal
- 20:59I've gone in and looked at like
- 21:00older tests um
- 21:01cause I wanted to go in and I
- 21:04I can't remember what I want to look at something
- 21:06and so I've gone into their patient portal
- 21:07and I have looked at it but for me
- 21:09it gets reported later than when my doctor like
- 21:13provides it to me so
- 21:15that's so interesting like
- 21:16I feel like my experience has been kind of the opposite
- 21:19sometimes I find out from the Natera portal
- 21:21like faster than my doctor finds out
- 21:23and um
- 21:25and sometimes I'm the one messaging them and I'm like
- 21:27hey so my
- 21:28my Natera like
- 21:29Signatera is in what are we gonna do about that
- 21:31or like you know
- 21:32what do we need to know about this
- 21:35so it's so funny like
- 21:36but
- 21:37man the other thing I love about my doctor's office is
- 21:40you know I've been a patient with them for what six
- 21:44seven years at this point
- 21:45and they know me and they know like
- 21:48how quickly I will message if something is concerning
- 21:52and so they all
- 21:54I usually get an email from them within minutes of it
- 21:58posting to my chart saying
- 21:59great news um
- 22:01you know you're still at zero everything
- 22:03you know we'll keep going with the status quo
- 22:06of what we've been doing so it
- 22:08it's just a funny thing that
- 22:09how they've gotten to know me
- 22:11and know that I will probably reach out
- 22:14although I wouldn't reach out when it's zero
- 22:16yeah for sure
- 22:18for sure oh
- 22:19my goodness alright
- 22:20so um
- 22:22what would be like
- 22:23your advice to somebody who's a newer patient
- 22:26or even somebody who's a pretty well established
- 22:28like metastatic patient
- 22:29um if they're considering having this test done
- 22:32like
- 22:33I think what the advice that I do give people is
- 22:37you have to look at it as
- 22:39as information you can't look at it
- 22:42you can't go into it thinking
- 22:45this is gonna answer all of your
- 22:47like all of the challenges
- 22:48that come along with metastatic disease
- 22:50it's just another information point
- 22:54to help us decide what's best for us
- 22:57you know as we get treatment
- 23:00I think about for me I
- 23:04unless there is some really dire situation
- 23:08I will not have more immunotherapy
- 23:10my body just it liked it um
- 23:14and it it over
- 23:17it liked it it
- 23:18it very much activated it um
- 23:22and the risk of the risk of doing more immunotherapy
- 23:28is greater than the you know
- 23:31greater than not doing it anymore at this point
- 23:34so you know
- 23:35when we and for me
- 23:37I don't have disease in my liver
- 23:38so really systemic is the only option for me
- 23:42if it comes back and still isn't in the liver
- 23:46and so this is just provides a data point of
- 23:50if that number comes back elevated
- 23:52just starts me thinking about
- 23:54you know how do we want to approach
- 23:56how do we want to approach this to tackle it
- 23:59knowing that I probably can't have more immunotherapy
- 24:02at least not the immunotherapy I had
- 24:06it just helps me start the wheels turning of okay
- 24:10I've got to get back on
- 24:11potentially thinking about what's next
- 24:15where right now
- 24:16I'm really not thinking about
- 24:17I'm just thinking about I'm so excited that I'm living
- 24:21my issues from immunotherapy are under control
- 24:25and I'm just enjoying for the first time that I'm
- 24:29no evidence of disease like
- 24:30just enjoying this life that I've been given and um
- 24:35and that
- 24:37and this test continues to provide that peace for me
- 24:40so
- 24:42absolutely well Wendy
- 24:44thank you so much for being a guest today
- 24:45and for chatting with us about this
- 24:47and just making sure that those of you guys listening
- 24:49have an opportunity to hear from just a patient
- 24:51not just a doctor
- 24:52because I do think it's important that
- 24:54you know yes
- 24:54doctors use this test and they
- 24:56you know some of them really love it
- 24:57they have good reasons for using it
- 24:59but I feel like there's just a layer of reassurance
- 25:02and validation that comes from like
- 25:04hearing from somebody who is a patient like you
- 25:06um so thank you for being that for us today Wendy
- 25:10thank you for having me and I'm so glad that you get um
- 25:14just somewhat of a break between your scans
- 25:16um I yep
- 25:17I think we all can relate to
- 25:19just wishing we could just have a break
- 25:21and I think it's it's nice to know that like
- 25:24you know this is a way that has
- 25:26kind of
- 25:26afforded you the opportunity to have that break
- 25:28and just to have something in between too
- 25:31so that it you're not just waiting six months
- 25:34um so I love that for you
- 25:36and I'm so grateful to I'm so grateful to have met you
- 25:39and I look forward to seeing you again later this fall
- 25:41it'll be so fun see you in Dallas
- 25:43yep see you in Dallas
- 25:45yeah and if you guys aren't aware
- 25:46um you can come see us in Dallas too
- 25:48because we have the Eye Believe
- 25:49conference with Doctor Harbour and his team there
- 25:52um and we're super excited to be in the Dallas world
- 25:56so come see us um
- 25:57watch our website you can just get your free tickets
- 26:00and just keep an eye out for the hotel block
- 26:02because we are gonna be dropping that
- 26:04I would assume very soon
- 26:06but we know that everybody's gotta be able to like
- 26:08book a hotel room and
- 26:09and come and stay and check for flights
- 26:11like all those pieces
- 26:12so just keep an eye out for those things
- 26:14and
- 26:14we are super excited to see you guys in Dallas again
- 26:17um
- 26:18in terms of how we can do this podcast
- 26:21I just want to say a huge thanks to our sponsors
- 26:23we've got Delcath Systems
- 26:25Ideaya Biosciences Castle Biosciences
- 26:28and Aura Biosciences each of which who
- 26:31they contribute a sponsorship number that goes towards
- 26:36you know covering the cost of
- 26:37of producing the podcast
- 26:38so we couldn't do this without our sponsors
- 26:40thank you guys
- 26:41for just participating
- 26:42and making sure that we can continue to empower
- 26:44and inform patients and just make sure that they have
- 26:47you know the education that they need and that they
- 26:49you know that we're keeping you guys up to date
- 26:51on some of the kind of cool
- 26:52new things that we have out there in the uveal
- 26:54melanoma space
- 26:56with that I will let you go
- 26:57Wendy and we will talk to you guys next time okay
- 27:00thank you Danet