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Men’s Health Panel Discussion — A Special Episode for Men’s Health Month · The Eye Believe Podcast

• 0:03
  hey everyone
• 0:04
  welcome back to the Eye Believe Podcast
• 0:06
  I'm Megan and we have a very special Men's Health Month
• 0:09
  for November in honor of Men's Health Month
• 0:11
  so please welcome to our men's panel
• 0:14
  we have Chris Donaldson Jeff Howard
• 0:16
  and Danny Powell welcome guys
• 0:18
  hey how are you doing
• 0:19
  thank you we are doing wonderful
• 0:21
  and we're so grateful for you guys
• 0:22
  so I'm just gonna let you each give us a little
• 0:25
  brief backstory about yourself and your Om journey
• 0:28
  Chris do you wanna start
• 0:30
  sure I'm Chris Donaldson
• 0:32
  I'm from Birmingham Alabama
• 0:34
  I was diagnosed with class 2 ocular melanoma in October
• 0:38
  22 I had metastasis in July 23
• 0:43
  been on Kimmtrak for a long time and um
• 0:46
  I'm part of the Auburn group
• 0:47
  I went to Auburn University
• 0:48
  so that's a lifelong
• 0:51
  uh software developer nerd
• 0:53
  you know that's me
• 0:55
  awesome Jeff
• 0:56
  how about you
• 0:58
  so my name is Jeff Howard
• 0:59
  I'm a uh
• 1:00
  Technical Project manager
• 1:01
  for Medical Software Development Company
• 1:03
  and I've been diagnosed with ocular melanoma
• 1:05
  in February of 2018
• 1:08
  typically go to San Francisco for treatments and um
• 1:12
  yeah just steadily progressing along the journey
• 1:15
  great and Danny
• 1:17
  how about you so my name is Danny Powell
• 1:20
  and I live in Timberlake North Carolina
• 1:22
  and I was diagnosed with class 2 Ocular Melanoma
• 1:26
  in August of 2,021
• 1:29
  I have my treatments done at
• 1:31
  at Duke Eye Center in Durham
• 1:33
  I have a BAP1 gene mutation
• 1:35
  so I'm BAP1 positive so
• 1:37
  my grandmother was also diagnosed with ocular melanoma
• 1:42
  oh wow
• 1:43
  and I'll add that Danny and I just recorded an episode
• 1:46
  all about that story
• 1:47
  so if you wanna hear more about Danny
• 1:48
  look for his episode as well
• 1:49
  so we have a few topics we wanted to
• 1:51
  kind of dive into today so
• 1:53
  the first thing that we're gonna talk about
• 1:55
  for Men's Health is community
• 1:57
  we talk a lot about how community is so important
• 2:00
  and how sometimes for men
• 2:01
  it can be a little bit harder to talk and
• 2:05
  and share feelings and
• 2:05
  and just kind of be out there and join a community
• 2:09
  it's a little bit tougher
• 2:10
  so let's talk a little bit about
• 2:11
  the ocular melanoma man cave
• 2:13
  okay well
• 2:14
  so this was started way back probably
• 2:16
  I don't know six
• 2:17
  seven years ago um
• 2:19
  there was a gentleman here who's
• 2:20
  strangely enough lived just down the road from me
• 2:23
  and we connected um
• 2:24
  the second I was diagnosed
• 2:25
  and he was also a tech guy
• 2:28
  and decided that he wanted
• 2:30
  for community sake to start a ocular melanoma man cave
• 2:33
  but he didn't want to do it himself
• 2:35
  and the idea was that you know
• 2:37
  there's so many things out there
• 2:39
  where you have co ed experiences
• 2:40
  but you we were finding that a lot of the guys
• 2:43
  at least I would take some of these guys aside or
• 2:46
  you know they would
• 2:46
  you know I
• 2:47
  we would just IM each other in the background
• 2:49
  and it became kind of tedious to keep up with
• 2:52
  so what we ended up doing is
• 2:53
  we started the ocular melanoma man cave
• 2:55
  and you know
• 2:56
  we had maybe five or six members at first
• 2:58
  but people came over
• 2:59
  and the guys started just chiming in
• 3:01
  and expressing their thoughts and
• 3:03
  and you know guys
• 3:05
  it's kind of funny cause you know
• 3:06
  guys have these tendencies where
• 3:09
  you know they get into an argument
• 3:10
  they hit each other and it's over
• 3:11
  and everybody's friends well
• 3:13
  you know if you're doing
• 3:14
  if you're in a coed session
• 3:15
  you know
• 3:16
  the guys are kind of minding their Ps & Qs
• 3:17
  cause now we're all gentlemen
• 3:19
  and we all want to be friendly
• 3:20
  we want to be pleasant
• 3:21
  but sometimes we also want to just get it out
• 3:23
  and that's what the man cave is all about
• 3:25
  I love that that's so cool
• 3:27
  and I think anytime you pair anything down into like
• 3:30
  smaller groups you get a more genuine connection anyway
• 3:33
  and then especially to bond over something
• 3:34
  like just being the same gender
• 3:36
  that even is such a huge thing
• 3:38
  for sure for sure
• 3:40
  and well
• 3:40
  and so uh
• 3:42
  the interesting thing was that
• 3:43
  the gentleman who I started with has uh
• 3:45
  since passed away from the disease
• 3:47
  uh one of the things he asked me to do
• 3:49
  about two weeks before he passed was
• 3:52
  no matter what happens please keep this up
• 3:54
  cause it was near and dear to his heart
• 3:56
  and there have been times where I'm just like yeah
• 3:57
  you know what I've been doing this for a long time
• 4:00
  I don't know if I need to manage it anymore
• 4:02
  then I get three more people joining
• 4:03
  and I'm like okay
• 4:05
  it's worth it we'll just keep it going
• 4:06
  so
• 4:08
  so here we are today
• 4:10
  it's definitely important
• 4:12
  are you guys all members is anyone else in it
• 4:14
  yeah I just joined
• 4:16
  I am not but I'm hoping to join
• 4:18
  it sounds like it'd be really good
• 4:20
  it is we have so hard to find anyone to talk to
• 4:23
  anyone that understands um
• 4:26
  has a true uh
• 4:27
  feeling of what you're going through
• 4:29
  you know it's uh
• 4:31
  everyone means well
• 4:32
  but they don't really know deep down
• 4:33
  and it's lonely and like
• 4:36
  we are we're men
• 4:37
  we don't wanna like
• 4:38
  tell everyone everything don't
• 4:40
  I'm not a real feel sorry for me kind of guy so
• 4:43
  you know it's hard to get that pat on the back every
• 4:47
  now that you need you know
• 4:49
  yeah and the nice thing
• 4:49
  too is that
• 4:50
  you know we
• 4:51
  when guys want to express something
• 4:53
  usually it's you know hey
• 4:54
  I'm going in for Kimmtrak
• 4:57
  like you were just talking about earlier
• 4:58
  Chris I think it was Kimmtrakor something like that
• 5:01
  um but
• 5:01
  you know whether it's a treatment or whether it's a
• 5:04
  a procedure or something the guys like
• 5:05
  hey listen
• 5:06
  I'm going in tomorrow uh
• 5:07
  is there anything I should know
• 5:09
  you know I'm kind of
• 5:09
  some guys will say things like
• 5:10
  you know hey
• 5:11
  I'm scared because I think it might have metastasized
• 5:14
  or if they get metastasized
• 5:16
  the first thing they want to say is okay
• 5:17
  who else has this issue and then everybody chimes in
• 5:21
  yeah that's great
• 5:21
  I would have loved to have known that
• 5:24
  you know three years ago
• 5:26
  you know that is the thing
• 5:27
  that is the reason that we do these podcasts
• 5:30
  and all the things that we do
• 5:31
  is because we hear that all the time
• 5:34
  I wish I would have found A Cure In Sight four years ago
• 5:36
  or 10 years ago or two years ago
• 5:37
  whatever it is and the same with the man cave
• 5:39
  and all of the Facebook groups
• 5:41
  and even just patient meetings
• 5:43
  where you get to meet people in person
• 5:44
  all of these things that are out there
• 5:46
  that patients who are new there
• 5:48
  they're not able to find
• 5:49
  us if we don't do these things to get it out there
• 5:52
  yeah for sure
• 5:53
  it's confusing and scary on top of everything else
• 5:56
  haha yeah
• 5:57
  and you feel like you're alone
• 6:00
  it's truth
• 6:02
  well the thing too is
• 6:02
  you know it
• 6:04
  because of the odds of how many people it affects
• 6:06
  you know
• 6:07
  it's very rare to find somebody even close by who has
• 6:10
  you know the same
• 6:10
  shares the same thing I mean
• 6:11
  you hear uh
• 6:13
  you know different cancers
• 6:14
  all the time lung cancer
• 6:15
  breast cancer you know
• 6:16
  brain cancer some of the more prevalent ones
• 6:18
  that have more research dollars
• 6:20
  or that have more visibility but
• 6:23
  and I was really surprised to find
• 6:24
  the guy that I started this man cave with
• 6:26
  it's like
• 6:26
  five minutes from me he's like hey
• 6:29
  what are you doing you live in Sparks too
• 6:30
  oh my gosh
• 6:31
  I'm like that's kind of freaky
• 6:33
  but cool all the same time
• 6:35
  okay so speaking of advocacy
• 6:37
  let's shift gears and go that way
• 6:38
  Chris what are your thoughts on this
• 6:41
  yeah I think it's such a rare disease
• 6:43
  and there's so little you know
• 6:45
  knowledge even among oncologist and um
• 6:49
  your local doctors I talked to MD Anderson one time
• 6:52
  and they said you have melanoma in your eye
• 6:54
  that that's really weird and not
• 6:56
  not what I wanted to hear
• 6:58
  you know so I've seen six oncologists
• 7:01
  I currently still have four of them
• 7:04
  I have like
• 7:04
  an ocular oncologist a local oncologist
• 7:07
  an oncologist in Philadelphia
• 7:09
  an oncologist in San Diego
• 7:11
  and it's it's confusing because I'm into AI
• 7:16
  and I'm constantly looking at trials
• 7:18
  and things that might help me
• 7:19
  things that are on the horizon
• 7:20
  I'm really data driven and lucky for me
• 7:24
  my sister works for my my local oncologist
• 7:27
  and so she's always on my team
• 7:28
  always pushing sending my scans everywhere
• 7:31
  but if I didn't have her
• 7:33
  or if I wasn't technical and knew how to manipulate AI
• 7:37
  it would be so lonely I would be so lost
• 7:40
  I would only have maybe one opinion
• 7:42
  and never know that there are other options
• 7:45
  never talk to anyone about it
• 7:47
  so it's um
• 7:48
  it's overwhelming when you get this diagnosis and
• 7:51
  you know I went into a dark spot
• 7:53
  and I'm sure everyone's had that moment
• 7:55
  but at that same time
• 7:57
  you have to be advocating for yourself
• 7:59
  and looking for the best treatment
• 8:00
  and looking for the best option
• 8:01
  and looking for the results
• 8:02
  and it's um
• 8:04
  it's a daunting task I think the mancave will make it
• 8:07
  you know a lot easier to share with other people
• 8:09
  in some of the Facebook groups
• 8:11
  but in general having a rare cancer is
• 8:13
  is a it's difficult all the way around
• 8:16
  yeah I agree with that actually
• 8:17
  so one of the things that Chris and Danny
• 8:21
  I don't know if you guys found this too
• 8:22
  but like
• 8:23
  when I was first diagnosed
• 8:25
  the ocular oncologist told me that
• 8:26
  you have to get this taken care of
• 8:27
  it's a class 2 melanoma it's highly aggressive
• 8:30
  if you don't get it taken care of
• 8:31
  you know it's gonna
• 8:32
  it's going to you know
• 8:34
  get worse and of course
• 8:37
  my first response was well
• 8:38
  what about the natural can you do the natural stuff and
• 8:40
  he says only if you want half a head
• 8:42
  I'm like great
• 8:43
  so um
• 8:45
  but he said well
• 8:46
  you know there's a couple different options
• 8:47
  you can do
• 8:48
  and proton beam was one of the things that we did
• 8:50
  you know to
• 8:51
  to start and um
• 8:53
  trying to get that through the insurance companies
• 8:56
  I mean
• 8:56
  they came back and they wrote me back saying that
• 8:58
  you know hey
• 8:58
  this is not medically necessary um
• 9:01
  there's no way we're going to approve this
• 9:02
  so the only way to get it done was
• 9:04
  like Chris said you just be
• 9:06
  you know
• 9:06
  just kind of be your own advocate and go after it
• 9:08
  and it's unfortunate
• 9:09
  and one of the things that helps with these groups
• 9:11
  and with this community is
• 9:14
  you know for those who say things like
• 9:16
  like Chris just said you know
• 9:17
  hey listen
• 9:17
  I can't get this through
• 9:19
  and I have to be my own advocate
• 9:20
  does anybody have any advice on how to go about that
• 9:23
  you know and for me
• 9:24
  I've been in the medical industry now for over gosh 20
• 9:28
  22 23 years
• 9:30
  medical imaging to be specific
• 9:31
  so you know
• 9:33
  I do have some contacts which is fortunate
• 9:35
  but not everybody has that
• 9:37
  absolutely Danny
• 9:38
  any thoughts you wanna add
• 9:40
  well you know
• 9:41
  I just um
• 9:42
  I'm kind of in a different situation
• 9:44
  you know than
• 9:44
  than Chris and Jeff
• 9:45
  I think that the ocular melanoma man cave is gonna be
• 9:48
  you know gonna be really good
• 9:49
  you know like I said
• 9:50
  you know I think it'd be great for me um
• 9:52
  just to have you know
• 9:53
  some different men uh
• 9:54
  men to talk to
• 9:55
  you know I was uh
• 9:57
  diagnosed in 2021 I had a plaque brachy therapy done
• 10:02
  at the Duke Medical Center
• 10:04
  well that's like
• 10:05
  30 minutes from my house you know
• 10:07
  I've talked to so many people
• 10:09
  and a lot of times they have to travel
• 10:12
  you know and
• 10:13
  and it sounds like you know
• 10:14
  that you you know
• 10:15
  that you guys might have to
• 10:16
  you know like
• 10:17
  to different states for your treatments and stuff
• 10:20
  and so you know
• 10:21
  like I said I'm right here at at uh
• 10:23
  Duke Eye Center and Duke Cancer Center
• 10:25
  I think this uh
• 10:27
  OM uh
• 10:28
  ocular melanoma man cave will be
• 10:29
  be really a really good resource
• 10:32
  yeah the travel is difficult
• 10:34
  I think I've been to Philadelphia 15 times
• 10:37
  yeah San Francisco for me
• 10:38
  and again there's
• 10:39
  there's just no like
• 10:40
  linear path of this journey
• 10:42
  it's it's always if
• 10:44
  then if then
• 10:45
  or maybe try this but it all
• 10:49
  I feel like
• 10:49
  it all comes down to me making the decisions
• 10:52
  and that seems to feel the
• 10:54
  the wrong way around I feel like I should be told
• 10:57
  this is what you need to do now Chris
• 11:00
  you make a really good point actually
• 11:01
  about that so my ocular oncologist is good
• 11:04
  he's great but um
• 11:06
  you know I've had this
• 11:07
  I'm now on my second general oncologist
• 11:09
  because what I'm finding is
• 11:11
  like Chris said you know
• 11:12
  they come back and they say
• 11:13
  oh yeah
• 11:13
  everything's fine everything's great
• 11:15
  and you're thinking something doesn't feel right
• 11:17
  something's off and I can't tell you what
• 11:19
  I can't tell you why and like Chris
• 11:22
  you know I'm very data driven myself
• 11:23
  and I read a lot of NIH white papers
• 11:25
  I do a lot of research of course
• 11:27
  I'm not you know
• 11:28
  anything more than a Google MD
• 11:30
  so you know
• 11:32
  I'm not a doctor but I
• 11:33
  but I but I have seen things
• 11:34
  and there are things like
• 11:35
  even in you know
• 11:37
  scans I always get my pictures
• 11:38
  I always tell people even in the man cave or anywhere
• 11:42
  always get a copy of your scans
• 11:43
  always get a copy of your images
• 11:45
  because most of the times when
• 11:47
  if a radiologist is reading it
• 11:50
  and this is just me knowing this
• 11:51
  from being in the medical field
• 11:52
  all this for years and listening to
• 11:55
  you know people dictate exams
• 11:56
  and looking at what the actual dictation was
• 11:59
  versus the image um
• 12:01
  doctors miss things you know
• 12:03
  especially
• 12:03
  with everything that's going on in healthcare
• 12:05
  right now where there's so many people
• 12:06
  being filtered through the system
• 12:08
  and
• 12:08
  doctors aren't able to take time with their patients
• 12:11
  happened recently where I had um
• 12:14
  a scan and I said hey
• 12:16
  I noticed on my pet scan
• 12:18
  there's a couple of images that lit up
• 12:20
  are a couple of spots that lit up
• 12:22
  that weren't there before
• 12:23
  and you know
• 12:24
  the radiologist when he dictated the report said
• 12:26
  all clear
• 12:29
  how did you miss that you know
• 12:31
  but but
• 12:31
  that's just the things
• 12:32
  they're trying to rush through the process
• 12:34
  so unfortunately you know
• 12:36
  you do have to kind of pay attention to those things
• 12:38
  and and even though we're not doctors
• 12:40
  we still have to be informed
• 12:42
  yeah I'm feeding all my CT and MRIs in the AI
• 12:44
  and letting it read them
• 12:45
  and then I'll go back to my doctor and say hmm hmm
• 12:49
  oh AI says I'm
• 12:51
  they got a problem what do you say
• 12:53
  yeah and all my notes and everything
• 12:55
  and I know there's privacy issues
• 12:56
  some people won't want to do that
• 12:57
  but you know
• 12:59
  I'm at this point I don't care
• 13:00
  I want to know as much as I can know
• 13:02
  hundred percent
• 13:04
  I'd like to add that Chris and Danet
• 13:06
  just did a whole episode on using AI in your journey
• 13:10
  so if you're really interested in this AI stuff
• 13:13
  and you're like what is he talking about
• 13:14
  please look for that episode
• 13:16
  it will be out soon if it's not already out
• 13:49
  alright so let's shift gears again
• 13:51
  we're gonna talk now
• 13:52
  about diseases that can come after Om
• 13:55
  and other men's health related things
• 13:57
  like what are you guys checking
• 13:59
  what are you looking for what else are you noticing
• 14:01
  Jeff do you wanna start this one
• 14:03
  sure so it wasn't very long afterwards
• 14:07
  it was actually
• 14:07
  not noticing anything for the first several years um
• 14:10
  which I was very grateful for
• 14:12
  then all of a sudden
• 14:14
  somewhere around 2021 2022
• 14:18
  I started getting things like lumps in my neck
• 14:20
  I started having you know uh
• 14:23
  big you know
• 14:24
  jagged scars hahaha
• 14:26
  and things where you know
• 14:28
  I wouldn't have had those before
• 14:29
  and then you know
• 14:30
  things like swelling you know
• 14:32
  I've had autoimmune issues
• 14:35
  I was hospitalized for a branch
• 14:37
  retinal artery occlusion um
• 14:40
  optic neuritis
• 14:41
  and things that were looking as to appear as MS related
• 14:46
  or Parkinson's or ALS
• 14:48
  which they're still trying to diagnose
• 14:51
  um most recently
• 14:53
  there was some paraneoplastic stuff
• 14:56
  where things like nerve shocks and
• 14:58
  you know muscle spasms and twitching
• 15:00
  and my hands stop working
• 15:02
  and it's it's really strange
• 15:04
  but the question is you know
• 15:06
  all these things that kind of happen
• 15:08
  one right after the other
• 15:09
  is it because of the melanoma
• 15:12
  and a lot of people say well no
• 15:14
  it can't possibly be
• 15:15
  but there's so little known about this disease
• 15:19
  which were you know
• 15:20
  we're finding out more and more how little
• 15:21
  there is known that to say with 100% certainty
• 15:25
  that's not the case
• 15:26
  I don't know if that's necessarily true
• 15:28
  but yeah
• 15:29
  as far as the you know
• 15:30
  medical journey afterwards
• 15:32
  it's been a progressive waterfall
• 15:34
  I'm so sorry to hear that
• 15:36
  that is unfortunate yeah
• 15:38
  so have to go through that
• 15:39
  and then so many other things
• 15:41
  and especially the unknown
• 15:42
  like that is the hardest part I think
• 15:44
  of just having someone tell you
• 15:46
  I don't know like
• 15:47
  oh so frustrating
• 15:49
  it's idiopathic they say that
• 15:51
  to which I I respond
• 15:53
  so you don't know who would know
• 15:55
  hahaha
• 15:56
  we would know cause we research it more than anyone
• 15:59
  oh amen to that
• 16:01
  alright what about Chris
• 16:03
  what are you doing as far as men's health
• 16:05
  my wife's a dietitian so I should be eating better
• 16:07
  but um I tried that no sugar
• 16:11
  you know Mediterranean diet
• 16:13
  and I don't like olives or fish
• 16:15
  so that kind of crashed and burned pretty quick
• 16:18
  um
• 16:19
  you know it's
• 16:20
  it's strange and I and
• 16:22
  and like Jeff
• 16:22
  I'm very grateful that I haven't felt like I had cancer
• 16:26
  you know um
• 16:27
  of course
• 16:27
  I lost vision in my right eye after plaque brachy therapy
• 16:30
  over a course of a year
• 16:32
  I've had a lot of side effects with
• 16:34
  you know the treatments that I've had
• 16:36
  but you know
• 16:38
  I just I'm
• 16:38
  I'm fatigued I already had sarcoidosis
• 16:41
  which is an autoimmune lung disease
• 16:43
  and so that's somewhat you know
• 16:46
  the DQ's me from a lot of trials
• 16:48
  but I I feel like I've been really lucky
• 16:50
  I'm just tired I could be like a silver medal
• 16:53
  you know napper
• 16:54
  um my wife says I've always been that way
• 16:56
  but hey
• 16:57
  do we know if it's from this or do we not
• 17:00
  I think it is yeah
• 17:01
  there's no shame in being a good napper
• 17:03
  that sleep is so important
• 17:05
  take those naps well
• 17:06
  it's interesting Chris
• 17:07
  I want to join in with you on that one
• 17:09
  so so the fatigue is interesting
• 17:11
  it's one of those things that kind of goes missed
• 17:14
  you know that they say
• 17:15
  well it's probably because you're getting older or
• 17:17
  but this is not that and I
• 17:20
  I'm right there with Chris
• 17:21
  and the fatigue is can be crippling at times
• 17:24
  yeah I mean
• 17:25
  your body's fighting a lot of different things
• 17:27
  it makes sense that you're gonna be tired
• 17:29
  how about you Danny
• 17:30
  what are you doing yeah
• 17:31
  so you know
• 17:32
  I'm not one I
• 17:33
  I don't like to go to the doctor
• 17:34
  but gotten to a point now where anything that I have
• 17:38
  you know I
• 17:39
  I wanna go get it checked out and
• 17:41
  you know because there is
• 17:43
  you know just so little
• 17:44
  you know that's known um
• 17:46
  you know about OM
• 17:48
  but like
• 17:48
  I had this knot pop up in my leg um
• 17:51
  a couple years ago
• 17:53
  and so I went and had that checked out
• 17:54
  you know and since then
• 17:56
  I've been found out to have a little bit of mild
• 18:00
  congestive heart failure not real bad
• 18:02
  I'm not anything where you know
• 18:04
  where it really affects me
• 18:05
  so I have to watch out you know
• 18:06
  for that also
• 18:08
  probably my biggest thing and
• 18:09
  and this is just the
• 18:10
  the weirdest thing was that I love eating shrimp
• 18:14
  so you know
• 18:15
  I just always you know
• 18:16
  loved eating shrimp well
• 18:18
  back here I guess it was April of last year uh
• 18:23
  me and my wife would've been out to dinner
• 18:25
  and I had shrimp that night
• 18:27
  and about three days later well
• 18:30
  she had some leftovers in the refrigerator
• 18:32
  and I ate her shrimp well
• 18:35
  then I had an allergic reaction to it
• 18:37
  well actually
• 18:38
  I thought it was something else
• 18:40
  thought it was you know
• 18:41
  something that I had put in my car
• 18:43
  that caused the allergic reaction so
• 18:45
  and actually when I had the reaction
• 18:47
  I went into anaphylaxis and had to go um
• 18:51
  to the hospital and so well
• 18:53
  about three weeks later
• 18:55
  I ate shrimp again um
• 18:58
  had another uh
• 18:59
  reaction to it that was when they determined okay
• 19:02
  you're allergic to shrimp
• 19:03
  that's you know
• 19:04
  that's what your what your issue is
• 19:06
  but it was just really weird
• 19:07
  because I've always eaten shrimp
• 19:09
  and did the OM cause it I don't know
• 19:13
  you know my doctors don't seem to think so but
• 19:16
  but it was you know
• 19:16
  just
• 19:17
  just really weird that it just happened all of a sudden
• 19:19
  that way so
• 19:20
  but I do go to the doctor
• 19:22
  you know for just different things
• 19:24
  you know that I find
• 19:25
  because I'm always thinking
• 19:26
  you know it
• 19:27
  does this have something to do with the OM
• 19:29
  so so I
• 19:30
  I do try to you know
• 19:31
  try to keep myself checked out as
• 19:33
  as much as I can and also
• 19:35
  you know one of the things that I did do
• 19:37
  was I used to use a vaping device
• 19:39
  I did quit that this past uh
• 19:41
  January so I have
• 19:42
  you know stopped doing that
• 19:43
  and I've you know
• 19:44
  tried to take better care of myself than what I used to
• 19:47
  so but it's an ongoing struggle I
• 19:49
  I like to eat what I like to eat and
• 19:52
  you know so it's
• 19:52
  so it's kind of it's difficult
• 19:54
  absolutely yeah
• 19:55
  I hear that
• 19:57
  and if we're talking about men's health in general
• 19:59
  if the mental side of it
• 20:00
  would be considered men's health
• 20:02
  you know yes I
• 20:04
  I truly feel that the most difficult
• 20:06
  hidden thing that has punished me the most
• 20:09
  is the mental side cause it never stops
• 20:12
  it's every second of every day
• 20:14
  you know my wife is
• 20:15
  is cupcakes and rainbows and I love her for that
• 20:19
  but my brain works a little bit differently
• 20:21
  so for the you know
• 20:23
  the seven stages of grief I I
• 20:25
  I was I may not get to see my grandchildren
• 20:28
  I my wife might get remarried
• 20:29
  you know these types of things would just infiltrate me
• 20:33
  and just punish me and
• 20:34
  you know you put on a smile and go through your day
• 20:36
  but I haven't found a really good answer for that
• 20:39
  and it's just constant and it's invisible
• 20:42
  and like we said earlier we're men
• 20:44
  so I don't really wanna go to my
• 20:46
  my golf buddies and say can you guys cry with me
• 20:49
  you know like
• 20:49
  this is terrible so it's uh
• 20:52
  it's it's just a
• 20:53
  it's just an attack on you mentally
• 20:55
  and it never it never lets up
• 20:58
  well and there's an expectation too
• 21:00
  like you just said Chris
• 21:01
  you know there have been several things
• 21:03
  at least for me and my wife
• 21:05
  you know
• 21:05
  we've had things happen over the years that were tragic
• 21:08
  and you know
• 21:09
  because of my wife having friends that she did
• 21:12
  you know they all kind of came around her and
• 21:14
  you know supported her
• 21:15
  and then everybody else is like
• 21:16
  you know suck it up Buttercup
• 21:18
  uh you know
• 21:19
  you're a guy
• 21:20
  you're not allowed to have those kinds of emotions and
• 21:22
  you know and it
• 21:24
  it is like you said you know
• 21:25
  we just had our first grandchild
• 21:26
  about two and a half months ago
• 21:27
  almost three months ago now and
• 21:31
  that does run through your mind almost constantly that
• 21:33
  you know every time you feel something that's a pain
• 21:36
  or some new symptom or something
• 21:38
  you think oh
• 21:38
  my gosh is this is today the day
• 21:41
  yeah
• 21:42
  it's such a shock to your system when you hear that
• 21:44
  I know you guys are pretty similar
• 21:46
  I was in an eye exam go to a doctor
• 21:48
  a few hours later no one's there
• 21:50
  everyone huddles around
• 21:52
  you have class 2 ocular melanoma
• 21:53
  there's no treatment there's no cure
• 21:55
  you'll probably lose your eye tomorrow
• 21:58
  so you know
• 21:58
  a few hours earlier I was at an eye exam
• 22:00
  and now I'm gonna die and lose my eye tomorrow
• 22:02
  so uh
• 22:03
  just the shock to your system um
• 22:06
  it's just overwhelming
• 22:07
  and I hope that other people can hear this
• 22:10
  and think it's okay you know
• 22:13
  to be to be sad about it
• 22:14
  to be upset and to um
• 22:16
  contemplate all the different factors in it
• 22:19
  it's okay that's a huge trauma
• 22:21
  yeah it's funny cause um
• 22:24
  Chris you said that um
• 22:25
  you went to your eye doctor
• 22:26
  and they kind of told you all the ins and outs of it
• 22:28
  you know how dangerous it could be
• 22:30
  my uh
• 22:31
  retinal specialist wasn't as nice hahaha
• 22:34
  he took a look at me and says okay
• 22:36
  you have cancer in your eye
• 22:38
  you're gonna die I'm like okay
• 22:40
  slow your roll a little bit
• 22:41
  you know and
• 22:44
  you know you say your wife is unicorns and rainbows
• 22:46
  and that's kind of actually me
• 22:48
  you know more often than not people are like hey
• 22:51
  you know stop being so positive
• 22:52
  this is this is a
• 22:53
  this is a negative thing it's like oh
• 22:56
  and yeah
• 22:56
  I mean I have two choices
• 22:57
  you you can either go through it and say
• 23:00
  oh well
• 23:00
  it was me you know
• 23:01
  I'm just counting down the minutes
• 23:02
  or you can what's that old saying
• 23:04
  um don't have the years in your life
• 23:06
  have life in your years yep
• 23:09
  that's a great one get busy living or get busy dying
• 23:12
  that's right another good one
• 23:14
  Shawshank Redemption sorry
• 23:16
  my favorite movie
• 23:17
  that's good yes
• 23:19
  see you and I would really get along Chris
• 23:21
  we're gonna be best friends
• 23:23
  a lot of movie references
• 23:26
  Castle Biosciences is a proud sponsor of this
• 23:29
  Eye Believe Podcast
• 23:30
  Castle's innovative uveal melanoma tests
• 23:32
  provide valuable information
• 23:34
  about the risk of your eye cancer spreading
• 23:36
  to help you and your healthcare team
• 23:38
  individualize the management of your disease
• 23:41
  to learn more visit Castlebiosciences.com
• 23:44
  alright guys
• 23:45
  now we're gonna move again into our next topic
• 23:47
  we're gonna talk about the registry and the Biobank
• 23:50
  has anybody registered with A Cure In Sight's registry
• 23:54
  yes yes absolutely
• 23:56
  all right and have you heard about the Biobank
• 23:59
  a little bit heard of it
• 24:00
  not experienced it
• 24:02
  A Cure In Sight has partnered with pattern.org
• 24:04
  and pattern has the the systems to do this
• 24:07
  so instead of us reinventing the wheel
• 24:09
  and trying to make up our own
• 24:10
  we are just partnered with them
• 24:11
  because they are doing it already
• 24:13
  they know what they're doing
• 24:15
  so our registry and our biobank
• 24:17
  partnered with pattern.org
• 24:19
  are going to talk to each other
• 24:21
  so what that means is when you register
• 24:24
  you're gonna fill out different surveys
• 24:26
  and questionnaires about what treatments you've had
• 24:29
  different things about your life
• 24:31
  and then the bio bank you can submit bio samples
• 24:34
  whether it's a biopsy or a blood sample
• 24:37
  there's all kinds of different samples
• 24:38
  and then they're actually going to grow cell lines
• 24:41
  and do different things
• 24:42
  that are going to help with finding new medications
• 24:45
  and different things like that
• 24:46
  but
• 24:47
  they're also going to deidentify all the information
• 24:50
  but then it will talk to each other
• 24:52
  so when a researcher pulls that sample in the biobank
• 24:56
  and they say huh
• 24:57
  I wonder you know
• 24:58
  how this tumor would react to this medicine
• 25:01
  they can look at the patient file and say
• 25:03
  oh well
• 25:04
  this person already had that
• 25:05
  you know maybe they had Kimmtrak
• 25:07
  and that this is how it affected it
• 25:08
  so I'm not gonna waste my time doing that
• 25:10
  because I already know what's gonna happen
• 25:12
  with this biological material
• 25:14
  I'm gonna do something else with it
• 25:16
  and so it's gonna give them a much broader view
• 25:20
  while they're doing their research
• 25:21
  and it's going to have a huge impact
• 25:24
  in furthering research
• 25:26
  and hopefully medications and eventually a cure
• 25:28
  so this is a really really big deal
• 25:30
  so I'm excited
• 25:31
  that we're going to talk about the registry
• 25:33
  and the biobank a little bit
• 25:34
  Jeff do you want to tell us
• 25:35
  a little bit about the history of the registry
• 25:37
  and your involvement absolutely
• 25:40
  so back when I first got ocular melanoma um
• 25:42
  I was trying to find information
• 25:45
  you know what was talking with melody
• 25:46
  I got to meet her
• 25:47
  and then we got to talking about what we did for work
• 25:50
  and I explained to her that
• 25:51
  you know I was in at the time
• 25:53
  I was doing all kinds of things with databases and with
• 25:56
  you know web pages and with data collection and
• 25:59
  you know data driven technologies
• 26:01
  she's told me
• 26:01
  that she was interested in doing a patient registry
• 26:04
  but wasn't really sure like
• 26:05
  where to start so we
• 26:07
  we ended up looking at different ways to go about it
• 26:10
  and fell in with a
• 26:11
  National Organization of Rare Diseases
• 26:14
  or N.O.R.D
• 26:15
  and um
• 26:16
  you know we worked with them
• 26:17
  they gave us you know
• 26:18
  worksheets and spreadsheets
• 26:19
  and we just it was
• 26:21
  it was an arduous task
• 26:22
  because we're trying what we wanted to do
• 26:24
  the goal of it was
• 26:25
  because the lifespan of an ocular melanoma patient
• 26:28
  is not 20 years it's not
• 26:30
  you know sometimes it's not even 10 years
• 26:33
  you know there's
• 26:33
  we have to have we have a specific time frame
• 26:36
  in which we can collect data
• 26:37
  to get information
• 26:38
  to be able to provide that to researchers
• 26:40
  to be able to get grants
• 26:42
  to provide the funding for research
• 26:44
  to be able to find a cure
• 26:46
  so doing this patient registry
• 26:49
  you know the
• 26:50
  the importance of it getting it started
• 26:53
  was to be able to get that information
• 26:55
  and to be able to have a little bit more
• 26:58
  I guess more information for
• 27:01
  for researchers but what we're also finding is that
• 27:04
  you know we're now able to gather information
• 27:06
  not just from patients
• 27:08
  but we can also get it from caregivers as well
• 27:11
  so it's kind of
• 27:12
  extending beyond just the initial involvement
• 27:15
  and we can you know
• 27:17
  always do more uh
• 27:19
  surveys or you know
• 27:21
  whatever
• 27:21
  but at least the information that we're gathering
• 27:24
  though it may seem trivial as we're going through
• 27:27
  as you're going through the surveys
• 27:29
  it does help every little bit helps fantastic
• 27:32
  as a side note I'm working with melody now
• 27:34
  to put a chat widget on the
• 27:37
  ACureInSIght.org website and app
• 27:40
  that's AI driven so
• 27:41
  I'm building a knowledge base
• 27:43
  of everything that's on the website
• 27:45
  and I'd love to work with you Jeff
• 27:47
  and get some some data that we can put in there
• 27:49
  non non medical advice
• 27:51
  but just so you can type in a question
• 27:54
  and it'll give you the most up to date or
• 27:56
  you know reasonable answers
• 27:59
  and you can have a conversation with it
• 28:00
  it's based on chat GPT4O
• 28:02
  and it's um
• 28:03
  it'll be out soon that's amazing
• 28:06
  that really is cool yeah
• 28:07
  and if you guys don't know
• 28:08
  we do have an app it's new
• 28:10
  but it has launched
• 28:11
  and we are in the process of figuring out really
• 28:15
  how to use it to the best of our abilities
• 28:19
  I mean what to put on it
• 28:20
  how to get it out there
• 28:21
  so go ahead and download the app
• 28:23
  but bear with us for this first few months
• 28:26
  this first year as we really kind of fine tune
• 28:28
  and figure out what we're doing with it
• 28:30
  it might be a little quiet at first
• 28:31
  while we kind of figure it out
• 28:33
  but once we have a good rhythm and
• 28:35
  you know we've got some help from Chris and
• 28:37
  you know another thing
• 28:38
  guys
• 28:38
  just understand that we've talked about advocacy before
• 28:42
  and this is also part of it
• 28:44
  you know Jeff helped build the registry
• 28:46
  Chris helped is helping with the AI part of the app
• 28:49
  melody created A Cure In Sight
• 28:51
  because there was no other patient advocacy group
• 28:54
  at the time so
• 28:55
  all of these things are happening
• 28:57
  because patients are making them happen
• 28:58
  no one's gonna come in and
• 28:59
  and do this on your behalf
• 29:01
  like the patient community
• 29:03
  is the one that is doing all of these things
• 29:04
  so if you would like to get involved with anything
• 29:07
  please email any of us
• 29:09
  our email addresses are our first names
• 29:11
  @ACureInSight.org
• 29:12
  you can email any of us
• 29:13
  and we've got lots of ways you can get involved
• 29:15
  but if you have a specialty like
• 29:18
  you know AI or IT
• 29:19
  or just anything that you're like
• 29:20
  you know what I'm really good at this
• 29:22
  and I think I could do something
• 29:23
  let us know because none of this is gonna move forward
• 29:26
  unless we do it so
• 29:28
  you know let's do it
• 29:29
  if anyone's ever interested
• 29:31
  to check out what all this data is doing
• 29:33
  or where you know
• 29:34
  where it's going towards um
• 29:36
  if you go to the ACureInSIght.org website
• 29:38
  there's a a annual report that's been put together
• 29:42
  and all the data that we've collected
• 29:44
  is generated from those surveys
• 29:45
  and from any information online is in that report
• 29:49
  and that report is the report that goes to researchers
• 29:52
  goes out to benefits goes out to foundations
• 29:54
  and just if if you want to see where that's all going
• 29:57
  like you said you know
• 29:58
  it's all patient driven and
• 30:00
  you know
• 30:01
  anybody who joins this advocacy can play a part
• 30:04
  yeah and you know
• 30:06
  check out our website
• 30:07
  for a lot of things we talked about
• 30:09
  like
• 30:09
  finding clinical trials and stuff can be really hard
• 30:11
  and we keep a as up to date as possible
• 30:14
  list of clinical trials on our website
• 30:16
  and that's all compiled by Kevin O'Neill
• 30:17
  if you guys are familiar with Kevin
• 30:19
  also a man also a patient
• 30:21
  he works with
• 30:22
  A Cure In Sight to help make sure that we're up to date
• 30:25
  so that we're you know
• 30:26
  everyone's not out there doing the legwork
• 30:27
  trying to figure it out for themselves
• 30:29
  so anytime you're like ah
• 30:31
  I just don't know go to our website
• 30:33
  and you'll probably find what you're looking for
• 30:35
  and if not email us and we'll help you figure it out
• 30:39
  I looked at that PDF last night
• 30:41
  yeah it's cool
• 30:42
  isn't it he updates it all the time
• 30:45
  and he and I work together to do that
• 30:48
  yeah that's just a kind of a plug for Kevin
• 30:51
  he is probably one of the smartest people I've ever met
• 30:54
  I mean I don't know his background
• 30:56
  I you know
• 30:57
  we talk frequently but oh
• 30:59
  my gosh what a smart guy
• 31:01
  just a super pleasant and amazing individual
• 31:04
  yes we love Kevin
• 31:05
  he's fantastic and he does so much for the community
• 31:07
  and so we're very grateful that Kevin donates his time
• 31:10
  and again
• 31:11
  all these patients that are helping do all this stuff
• 31:13
  it's all donated time donated energy
• 31:15
  donated resources so
• 31:16
  we're very lucky
• 31:17
  to have a community of brilliant people
• 31:20
  who are willing to do the work
• 31:22
  all right well
• 31:22
  we are gonna wrap up gentlemen
• 31:25
  thank you so much for being here
• 31:26
  thank you for all of your insights and your wisdom
• 31:28
  this has been a truly wonderful conversation
• 31:31
  and I'm just
• 31:31
  honored that you guys chose to spend your day with me
• 31:34
  so I'd like to invite you all to give a last
• 31:37
  parting message to the community
• 31:40
  anything that you would like to leave them with
• 31:42
  as we close out Chris we'll start with you
• 31:44
  I just wanna say don't lose hope
• 31:46
  you know
• 31:46
  when I was diagnosed and all of this bad news came in
• 31:50
  there weren't treatments like Kimmtrak or Histotripsy
• 31:53
  or really any options and medicine is evolving
• 31:56
  we now have these communities
• 31:58
  people like Jeff
• 31:58
  are helping us get these databases of patients
• 32:01
  in the man cave so if you're in a dark space
• 32:05
  there's people that can help you if you can't find one
• 32:07
  I'll be that person uh
• 32:09
  happily and just
• 32:10
  just don't lose hope
• 32:12
  being in the darkness is so lonely and terrible
• 32:14
  so just reach out and we'll be there for you
• 32:17
  and just
• 32:18
  have faith
• 32:19
  that there's going to be an evolution in medicine
• 32:22
  and it's right here all right
• 32:24
  Jeff well
• 32:25
  just just tailing on what Chris said
• 32:27
  I mean this is a rare disease
• 32:29
  but hope is not rare um
• 32:32
  hope can be found like Chris said
• 32:34
  in community and communities that we have available in
• 32:37
  and in each other and
• 32:38
  you know things have come a long way
• 32:40
  and just even the last
• 32:42
  you know seven to eight years that I've been diagnosed
• 32:44
  and you know
• 32:45
  what was originally thought of
• 32:47
  you know as catastrophic
• 32:49
  there's more becoming known every single day
• 32:51
  the people that are here to help
• 32:53
  they're willing to help we've all been through it
• 32:55
  we we all know what you're
• 32:57
  you're going through and at the end of the day
• 32:59
  you know we really just want to help each other
• 33:01
  and be there to support each other
• 33:03
  Danny and I guess the only thing I want to add is
• 33:06
  you know I've talked to a lot of people and
• 33:09
  you know unfortunately
• 33:11
  a lot of times
• 33:11
  people don't find out they have ocular melanoma
• 33:14
  until they start you know
• 33:16
  until they start losing their vision
• 33:17
  or they start having issues
• 33:18
  so so it's just important to
• 33:21
  to go you know
• 33:22
  have your eyes um
• 33:23
  examined um
• 33:24
  every year even if you don't wear corrective lenses
• 33:27
  because you know
• 33:28
  even if it's not OM you know
• 33:30
  they can still find things like glaucoma and
• 33:33
  you know there's
• 33:34
  there's other things that
• 33:36
  you know that your eye doctor um
• 33:37
  can catch so
• 33:38
  so it is important to get to get those eye exams
• 33:41
  all right
• 33:42
  thank you guys so much for being here and doing this
• 33:45
  and for those wise words we really
• 33:46
  truly appreciate you and to our viewers
• 33:49
  thank you for watching none of this happens without you
• 33:52
  so thank you for tuning in
• 33:53
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• 33:55
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• 33:57
  and also please subscribe
• 33:58
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• 34:01
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• 34:04
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• 34:06
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• 34:08
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• 34:09
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• 34:11
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• 34:12
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• 34:14
  but we would really love to talk to you
• 34:16
  and engage with you on there
• 34:17
  if you have any questions
• 34:18
  always shoot us a message
• 34:19
  you can email any of us and go to our website
• 34:23
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• 34:24
  we talked about a lot of great resources on the website
• 34:26
  but also there's a button at the top that says
• 34:28
  join our newsletter join that
• 34:30
  we send it out at the end of every month
• 34:32
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• 34:34
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• 34:37
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• 34:38
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• 34:41
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• 34:42
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• 34:44
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• 34:45
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• 34:48
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• 34:50
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• 34:52
  every Tuesday night there's two rooms
• 34:53
  a regular room and a metastatic
• 34:55
  so you can choose the room that you would like to be in
• 34:58
  find yourself some OMie buddies
• 34:59
  and if you need a little more help finding a buddy
• 35:02
  join the Cure Companions program
• 35:04
  it pairs up a new patient with a veteran patient
• 35:07
  so if you're a veteran
• 35:08
  and you'd like to donate your time
• 35:09
  and help a new person figure this out
• 35:11
  or if you're new and you're like
• 35:13
  I really need some help
• 35:14
  you can join the Cure Companions program
• 35:16
  and also check out our events
• 35:18
  we've got 5 KS coming up
• 35:19
  we have swing for sight in the spring
• 35:22
  our annual patient meeting will be in Texas next fall
• 35:25
  so we've got a lot of great events coming up
• 35:27
  and then please
• 35:28
  email any of us if you would like to get involved
• 35:30
  if you have any special talents like we talked about
• 35:32
  and you would love to be a member of the community
• 35:34
  and volunteer we would love to connect with you
• 35:36
  or if you just have questions
• 35:37
  or need some more assistance
• 35:38
  we are all here for you so please have a wonderful
• 35:41
  wonderful week and we will all see you guys next time
• 35:45
  thank you thank you
• 35:46
  thank you Megan