Latest / The Eye Believe Podcast / How Oncology Social Workers Help Patients Find Resources | The Eye Believe Podcast

Transcript

How Oncology Social Workers Help Patients Find Resources | The Eye Believe Podcast · The Eye Believe Podcast

• 0:03
  hey everybody
• 0:04
  welcome back to another episode of the
• 0:05
  Eye Believe Podcast I'm here with Alley
• 0:08
  who is a patient and she's actually in Arizona like me
• 0:11
  so we're all just slowly melting here
• 0:13
  but she is someone who's had Hepzato
• 0:16
  the Hepzato Kit treatment I think now three times and
• 0:19
  she has a tumor that was really pretty large
• 0:22
  the first time that she ever talked to me on Instagram
• 0:24
  like over a year ago
• 0:26
  and this tumor has now shrunk from about it's
• 0:30
  it's about half its size
• 0:31
  like it's largest size right now right
• 0:33
  mm hmm according to your latest
• 0:35
  like at least
• 0:36
  whatever
• 0:36
  latest information that you've had to work with
• 0:38
  which is insane to kind of think about
• 0:40
  especially for any of you guys
• 0:41
  dealing with a larger tumor on your liver
• 0:45
  which I know like Alley
• 0:46
  like you've had so much discomfort from this
• 0:48
  like it's just been a huge
• 0:50
  a huge buzzkill so to speak
• 0:52
  like if if cancer wasn't enough
• 0:55
  um we say
• 0:56
  like we joke but
• 0:57
  you know like you guys know what we're talking about
• 1:00
  but Alley
• 1:00
  thanks so much for joining us
• 1:02
  and thank you for taking the time
• 1:03
  I know this
• 1:04
  last few weeks have just been a little up and down
• 1:06
  but I'm really glad that this
• 1:08
  that this treatment
• 1:08
  has been something that's been able to prolong
• 1:10
  your life and prolong your quality of life
• 1:12
  and I just think that it's really pretty incredible
• 1:15
  so coming to talk to you
• 1:17
  like as a patient
• 1:18
  who's actually prepping for Hepzato myself
• 1:21
  I wanted to just have a chat with you about this
• 1:23
  and just get a little
• 1:24
  like into the nitty gritty of your story and
• 1:27
  and your experience so far in Arizona
• 1:29
  with the Honor Health facility here
• 1:31
  so um Alley
• 1:32
  do you wanna just give us the elevator version of your
• 1:34
  Om to your metastatic journey
• 1:36
  yes absolutely
• 1:37
  so I was first diagnosed in 2016
• 1:41
  the interesting thing about me is
• 1:43
  I was actually 24 weeks pregnant with my second son uh
• 1:47
  during this time so as you can imagine
• 1:49
  you're pregnant you have hormones
• 1:51
  you have craziness already
• 1:53
  and then to add a cancer diagnosis on top of that
• 1:56
  was just crazy to me um
• 2:00
  just because you know
• 2:00
  melanoma does not run in my family
• 2:02
  I have a lovely mutated gene
• 2:05
  so I never even thought cancer would
• 2:08
  ever pop up in my life so
• 2:10
  I was actually seen at Rochester
• 2:13
  Minnesota with Doctor Pulido
• 2:15
  he was one of the best ocular melanoma doctors
• 2:19
  I was actually one of his last patients
• 2:21
  before he retired
• 2:23
  that I got to go and see him
• 2:26
  and he was the best so
• 2:28
  I got to have the Brachial plaque therapy done
• 2:32
  safely with my son uh
• 2:34
  I was able to stay in the hospital
• 2:36
  in the labor and delivery room at their hospital
• 2:39
  so um
• 2:41
  baby was monitored all the time
• 2:43
  I had a OB GYN come in all the time
• 2:46
  and as well as my eye doctor come in also
• 2:49
  everything went
• 2:50
  as smooth as you possibly would ask for
• 2:54
  but the cool thing about me for that journey
• 2:58
  is I actually got my journey recorded
• 3:01
  I was actually in the Mayo Clinic pod
• 3:03
  or Mayo Clinic documentary
• 3:06
  um for yeah for the Mayo Clinic um
• 3:10
  it was actually recorded by Tom Hanks
• 3:12
  I thought that was the coolest thing ever
• 3:14
  so I'm in that documentary also and that's super cool
• 3:19
  um you're gonna
• 3:20
  I know the name of that
• 3:21
  and I'll like link that up in the show number yeah
• 3:23
  it's
• 3:23
  it's really cool for anybody who's just starting out
• 3:26
  it literally talks about my whole entire journey
• 3:28
  it shows the plaque it shows everything
• 3:31
  so it's kind of nice and kind of a little education
• 3:35
  also I had my plaque therapy done
• 3:38
  I uh went back after Oben was born
• 3:41
  and found out everything was shrinking
• 3:44
  everything was dying and it went it went great um
• 3:47
  I ended up being in remission after the five years
• 3:50
  and then for my 8 year checkup
• 3:53
  I came back in and was having a little bit of pain
• 3:56
  in that liver side and ended up getting some scans
• 4:01
  and I found out that it came back again
• 4:04
  and it was pretty big and I have a lot of
• 4:07
  I have two big clusters or two big tumors
• 4:10
  with a lot of little pepper sprinkles
• 4:13
  lots of them so that was
• 4:16
  that was my journey
• 4:18
  now I'm here in Arizona
• 4:20
  I remembered like connecting with you
• 4:22
  I think it was on Instagram
• 4:23
  like last spring maybe yeah
• 4:25
  you were telling me you know
• 4:27
  some of the just
• 4:28
  some of the journey to
• 4:28
  even getting diagnosed with metastatic disease
• 4:30
  because
• 4:31
  you guys had to deal with some of the ins and outs of
• 4:33
  um just not being able to get your scans
• 4:36
  as often as you need yes
• 4:37
  to have had them yeah
• 4:38
  even with even with being past that 5 year mark
• 4:41
  um yep
• 4:41
  and it just it frustrates me
• 4:44
  like obviously
• 4:45
  we can't go back and change it right
• 4:46
  like it's just what it is for the moment
• 4:48
  but it frustrates me when I hear that for patients
• 4:50
  because it's like no
• 4:51
  yes we don't just stop being at risk at five years
• 4:54
  like exactly
• 4:55
  keep watching us there's a reason
• 4:57
  our doctors are advocating for watching
• 4:59
  um exactly
• 5:00
  and it's obviously never ideal to deal with metastases
• 5:03
  um but like
• 5:04
  the way that I have seen you navigate this
• 5:06
  with you and your um
• 5:07
  your young family like
• 5:08
  I mean it's been really um
• 5:12
  just really powerful to me
• 5:13
  I think just seeing how you have um
• 5:16
  navigated this as an individual and just the
• 5:19
  you know
• 5:19
  the level of hope that you have instilled in patients
• 5:22
  you know by sharing your own story online
• 5:24
  but also just in your um
• 5:26
  in your immediate circle like with your family and
• 5:28
  and your little kids
• 5:29
  and just helping them kind of process all of this
• 5:32
  and I'm like actually kind of like low key
• 5:34
  like as excited as I can be
• 5:36
  right
• 5:36
  for our kids to like mutually have this connection
• 5:38
  yeah also like the
• 5:40
  the like
• 5:41
  potential
• 5:42
  for just being able to do some stuff over the summer is
• 5:44
  is you know
• 5:46
  that's helpful um
• 5:47
  just to know that that's that's an opportunity
• 5:48
  I know that most patients
• 5:49
  like we don't typically run into someone our age
• 5:52
  with kids our age like
• 5:53
  who we can hang out with and like relate to
• 5:55
  and that our kids can relate to right
• 5:57
  so I know like historically
• 5:59
  you've had kind of a few things going on to try to
• 6:01
  control what was going on in your liver
• 6:03
  when it was discovered last year
• 6:05
  and that was in 2024 correct
• 6:07
  like yes
• 6:07
  early 2024 okay
• 6:09
  and so then you guys ended up moving to Arizona
• 6:11
  to be under the care of Doctor
• 6:13
  Justin Moser who's here in the yes
• 6:14
  Honor Health Scottsdale
• 6:16
  the Honor Health Research Institute
• 6:17
  you guys you guys probably know him
• 6:19
  he's been on the Eye Believe Podcast a bazillion times
• 6:22
  but he's also helped to host our most recent
• 6:25
  Eye Believe seminar which took place in October of 2024
• 6:29
  so just this last year in Arizona
• 6:31
  those are on the YouTube channel
• 6:32
  you can go back and find some of the
• 6:34
  the recordings from there if you haven't like
• 6:35
  gotten a chance to but he's kind of
• 6:37
  kind of famous
• 6:39
  um he is
• 6:39
  we're making him famous like
• 6:41
  in addition
• 6:41
  to all these other wonderful doctors that we have
• 6:43
  but uh
• 6:44
  but I know that you moved here to be closer to care
• 6:46
  and to family um yes
• 6:48
  but what changed
• 6:49
  like in your kind of treatment landscape
• 6:51
  like I don't want to go into everything
• 6:52
  that you had done before just cause that's really not
• 6:54
  yeah super relevant for the moment
• 6:55
  but what changed
• 6:57
  that Hepzato became something on the table
• 7:00
  yeah so I started off with Kimmtrak and
• 7:03
  you know Kimmtrak just didn't work for me
• 7:04
  it's you know
• 7:05
  every patient is different and it just was not um
• 7:10
  doing what it needed to do to my tumors
• 7:13
  um and
• 7:13
  you know with me having a bunch of tumors
• 7:16
  um I wasn't a candidate to get them ablated
• 7:19
  cause they were so big um
• 7:21
  so Hepzato was something that we kind of
• 7:24
  felt was kind of the best path
• 7:26
  and I'm totally thankful that it was out there for me
• 7:29
  cause it's it's a great treatment
• 7:31
  it really is so I think if I'm remembering correctly
• 7:34
  part of part of the reason
• 7:36
  like for trying Kimmtrak first
• 7:37
  and just kind of
• 7:38
  seeing if there was anything else along the way
• 7:41
  was
• 7:41
  because you guys didn't even get here to Arizona until
• 7:43
  like roughly may
• 7:45
  I think yeah
• 7:46
  we we got here in yeah
• 7:47
  we got here in June um
• 7:49
  and so we wanted yeah
• 7:52
  we wanted to to wait and just do Kimmtrak
• 7:55
  because we were
• 7:57
  trying to hold my liver for another treatment um
• 8:01
  it actually wasn't Hepzato
• 8:02
  it was something else but um
• 8:04
  I didn't get the chance to do that
• 8:05
  because Kimmtrak decided okay
• 8:07
  it doesn't want to work so I had to go to Hepzato
• 8:11
  yeah and so then I don't
• 8:13
  I don't even remember exactly when it was
• 8:14
  but I know it was it was pretty much in the fall
• 8:16
  right is when Hepzato was first um
• 8:19
  available to utilize yep yep
• 8:22
  so I'm trying to think I actually started
• 8:25
  I got my first Hepzato treatment
• 8:27
  before I moved down here I actually got it in June
• 8:30
  yeah so I had it for
• 8:32
  I did Hepzato or sorry
• 8:34
  Kimmtrak for about three months
• 8:37
  I would say yeah
• 8:38
  and then just didn't just didn't work
• 8:42
  yeah so then from there
• 8:43
  I guess it was it was probably like
• 8:45
  I don't know we don't
• 8:46
  we don't have to have exact dates
• 8:47
  but if you've had three
• 8:48
  treatments they're spaced about every six weeks
• 8:50
  yes so it's been one and a 1/2
• 8:52
  two and a 1/2
• 8:54
  and I don't even know
• 8:55
  it's been like four and a 1/2 to 5 months
• 8:57
  like in between there plus a little extra time
• 8:59
  yes but you were one of the first
• 9:01
  I think you were one of the first patients that
• 9:02
  honor health treated in their
• 9:04
  like having their facility open
• 9:06
  to utilize the Hepzato treatment
• 9:07
  after I was training of everything
• 9:10
  yeah I was I was actually
• 9:12
  I believe
• 9:12
  the third patient that was actually able to do it
• 9:15
  so I was kind of you know
• 9:17
  like like anybody
• 9:18
  I was kind of nervous about it because I was like
• 9:20
  oh gosh okay
• 9:21
  okay we're
• 9:22
  we're okay
• 9:22
  and I'm actually one of the younger ones doing it also
• 9:25
  everybody else of course
• 9:27
  like
• 9:27
  we know what this cancer is a lot older than we are
• 9:30
  so I didn't know you know
• 9:32
  how it would do with my body and and everything else
• 9:35
  there was lots of questions for sure before I started
• 10:09
  yeah no
• 10:09
  that that totally makes sense
• 10:10
  so let's talk a little about like
• 10:12
  prepping for this treatment
• 10:13
  like absolutely you had
• 10:15
  you know had lots of questions
• 10:16
  so were you able to meet with the doctor
• 10:18
  um like with the whole medical team
• 10:19
  or was there like a specific doctor
• 10:21
  or two that you met with yeah
• 10:23
  so I I saw Doctor Moser
• 10:25
  of course um
• 10:26
  cause whenever
• 10:27
  we found out that Kimmtrak wasn't working
• 10:29
  and we kind of chatted for
• 10:31
  for a while about what the best next step would be
• 10:34
  so I got to uh
• 10:36
  talk with him about it and then actually Molly Drought
• 10:39
  uh she is a nurse practitioner at Honor Health
• 10:42
  she's the one that really runs everything with Hepzato
• 10:45
  she is amazing um
• 10:47
  so she actually chatted with me for
• 10:50
  for a good while about Hepzato
• 10:52
  and kind of went through all of the steps and
• 10:55
  you know without her
• 10:56
  I think I would have been a nervous wreck
• 10:59
  but she really made um
• 11:01
  made me feel comfortable
• 11:02
  and just was the best thing for me
• 11:06
  she was so knowledgeable about it
• 11:08
  and answered every question that I had
• 11:10
  um I always have my mom and my husband with me as well
• 11:13
  at every appointment
• 11:14
  so they were able to get their questions answered
• 11:18
  and yeah it was
• 11:19
  it was great um
• 11:21
  after I met with them I did get to meet with Doctor Low
• 11:24
  uh he's the
• 11:25
  you know the main guy that does the actual treatment
• 11:29
  he's you know
• 11:30
  putting in the the sheaths and everything
• 11:32
  so I got to meet with him
• 11:34
  um and I just immediately fell in love with him
• 11:37
  he's just an awesome guy he's a fun guy
• 11:39
  yeah yeah
• 11:39
  he like and I'd actually just talked
• 11:41
  with him today like for my own appointment
• 11:43
  oh awesome yeah
• 11:44
  but chatting chatting with him like
• 11:46
  you know we had him at Eye Believe as well and he's
• 11:48
  he's a very knowledgeable interventional radiologist
• 11:50
  he is yeah
• 11:51
  he is for sure so um
• 11:53
  after I got to meet with everybody
• 11:55
  I really did feel at ease like they
• 11:57
  they just were super knowledgeable about everything and
• 12:00
  and really made me feel good
• 12:02
  so that was so okay you met with the doctors yep
• 12:06
  you met with the doctors had lots of questions
• 12:08
  obviously
• 12:08
  which everybody's questions are gonna be different um
• 12:11
  but I know like some of the questions that came up for
• 12:13
  you know for me like just for anybody listening
• 12:16
  maybe these were some that came up for you
• 12:17
  so
• 12:17
  I guess if there's anything else you feel like came up
• 12:19
  just for any caretakers
• 12:21
  or patients who might be going into this procedure
• 12:23
  like I was asking things like okay
• 12:26
  you know who can be back there like in the ICU
• 12:28
  because at least at
• 12:29
  at Honor Health they keep you in the ICU um
• 12:32
  and he explained you know
• 12:33
  the reasoning behind that
• 12:34
  just in case you need to get any blood transfusions
• 12:36
  like platelets yep
• 12:37
  uh plasma
• 12:38
  blood
• 12:39
  any of that all has to be administered in the ICU
• 12:42
  so it's not necessarily because you're like
• 12:43
  at this horrible horrible risk
• 12:45
  it's just to make sure they can administer blood
• 12:47
  if needed and he just mentioned that
• 12:49
  you know it was only gonna be roughly an overnight stay
• 12:51
  like it wasn't necessarily gonna be 24 hours
• 12:53
  from when I woke up like it
• 12:55
  it kind of just depended on how everything went
• 12:58
  I think I asked about just recovery time
• 13:00
  coming out of it
• 13:01
  like how long should I maybe not lift weights or like
• 13:04
  should I avoid picking up my kids or
• 13:06
  you know anything
• 13:06
  not that I pick up my children very often
• 13:08
  I mean
• 13:10
  they are but with women our age
• 13:12
  we have to think about that
• 13:13
  because we still have mom life
• 13:15
  a lot of our patients
• 13:17
  like picking up my Stanley is like 5 pounds
• 13:19
  yes
• 13:21
  absolutely you still have to live your day to day life
• 13:23
  and be a mom and we have to ask these questions
• 13:26
  yeah so
• 13:27
  I mean I just was very curious like okay
• 13:29
  what do you like I've
• 13:30
  I've gone into liver surgery before like
• 13:33
  you know
• 13:33
  kind of underestimating what my recovery was gonna be
• 13:35
  like
• 13:36
  and then was kind of caught off guard by how painful
• 13:39
  yeah or like uncomfortable I was
• 13:41
  and so just asking you know
• 13:42
  like what are what are we looking at here
• 13:44
  and he's like yeah
• 13:45
  most people are feeling pretty okay
• 13:47
  within the first few days
• 13:49
  yeah and by about two weeks
• 13:50
  like you're really pretty back to totally normal
• 13:53
  at least for whatever your normal is barring
• 13:56
  you know a few exceptions
• 13:57
  there's there's obviously exceptions
• 13:58
  and everybody's gonna be different
• 14:00
  so did you guys have any other like
• 14:01
  specific questions you can think of that came up
• 14:04
  I don't think so
• 14:05
  I think the biggest thing was the recovery time for me
• 14:08
  um just because like I said
• 14:09
  we have young children so I need to know okay
• 14:12
  how long do I need to have my caretakers here
• 14:15
  because I do have my mom and my husband that are here
• 14:19
  taking care of me so
• 14:20
  I need to make sure that
• 14:21
  they're able to get off of work and help me
• 14:23
  and everything with the kids
• 14:25
  and so that was my biggest question
• 14:27
  of course this is a little bit of a
• 14:30
  I guess just a teaser question
• 14:31
  um you know
• 14:33
  obviously you have these appointments with Molly
• 14:34
  with uh so with the nurse practitioner
• 14:36
  and so they have during these appointments just for
• 14:38
  for reference they explain everything to you
• 14:41
  like they tell you how it's all gonna work
• 14:42
  they tell you what you're gonna do to prepare
• 14:44
  like they're not just like going in and saying OK
• 14:47
  you're gonna have this treatment
• 14:48
  what questions do you have
• 14:48
  like they explain it all first
• 14:50
  they have really good visuals
• 14:51
  if you haven't looked at the Hepzato
• 14:53
  um Hepzato Kit website
• 14:54
  they have some really good visuals that show
• 14:57
  what it looks like
• 14:58
  and actually our most recent liver directed webinar
• 15:00
  Doctor Padia um
• 15:02
  he really like he showed uh some visuals
• 15:05
  as well that explain you know
• 15:06
  how does this work
• 15:07
  and why does it work the way that it does because
• 15:10
  you know people are walking away from it
• 15:12
  and they have relatively low toxicity to the liver
• 15:14
  they're just kind of maybe not
• 15:16
  bouncing back is not quite the right word
• 15:18
  but like they're
• 15:18
  they're able to live a pretty good quality of life
• 15:20
  considering what's happening for the treatment
• 15:23
  so definitely check those out if you haven't
• 15:24
  I'll link some of those in the show notes
• 15:26
  like for anybody watching this
• 15:27
  and if you haven't hit subscribe
• 15:28
  don't forget to subscribe while you're watching this
• 15:31
  um we need you guys to follow
• 15:33
  and help us get to over 1,000 followers
• 15:35
  on our YouTube channel so okay
• 15:37
  Alley prescreening
• 15:39
  what all do they have you do before the procedure
• 15:42
  because there's some really
• 15:43
  important tests that they have you do ahead of time
• 15:45
  besides just your MRI yeah
• 15:47
  there is there is um
• 15:49
  so the biggest thing that you have to do is
• 15:51
  make sure your heart is healthy enough
• 15:54
  so the way that they kind of test that out is
• 15:56
  you do a stress test um
• 15:59
  so that was kind of um
• 16:01
  something I didn't even know about
• 16:03
  I was like oh
• 16:03
  that's kind of cool
• 16:04
  I didn't even know a stress test was a thing
• 16:06
  cause I'm young and you know
• 16:09
  I didn't really know so um
• 16:11
  whenever I went into there
• 16:13
  it really doesn't not for our age no
• 16:15
  so um
• 16:16
  yeah I had to go to a cardiologist and do a stress test
• 16:20
  and of course everything came back that I'm healthy
• 16:22
  just this lovely cancer just like you
• 16:25
  just cancer in your liver like you
• 16:28
  yeah but like there's just yeah
• 16:31
  it's kind of a yeah
• 16:32
  it feels like a it feels like a sick joke a little bit
• 16:35
  it it really is
• 16:36
  yeah it really is
• 16:37
  it's like the oh
• 16:38
  you look so great you look so great type thing
• 16:40
  thank you my body says it's fine
• 16:42
  except right here yeah
• 16:46
  but um absolutely
• 16:48
  but yeah you do that prescreening
• 16:49
  and then other than that you do um
• 16:52
  an EKG and also
• 16:54
  just lab work
• 16:55
  to make sure that your white blood cell counts
• 16:58
  your hemoglobin everything is where it needs to be
• 17:01
  um so that way you can safely get this chemotherapy
• 17:06
  how often do you have to do the pre screening
• 17:08
  like do you have to do the echo
• 17:09
  the echocardiogram stress test
• 17:10
  no every single time you do no
• 17:13
  you do not have to get the stress test done
• 17:14
  every single time that is just at the very beginning
• 17:17
  every 6 weeks before you come in for your Hepzato
• 17:20
  you will get that EKG and you will get those labs done
• 17:24
  just to make sure that everything is good from last uh
• 17:28
  last Hepzato treatment and that you are just safe to go
• 17:31
  yeah well
• 17:32
  that makes sense and then um
• 17:33
  I think you were telling me that once you have the
• 17:35
  like the first treatment
• 17:36
  it's kind of all this testing is done
• 17:38
  you know up to maybe a month or so ahead of time
• 17:40
  just depending on how soon they can schedule things out
• 17:43
  like I know like I'm a month out from treatment
• 17:45
  and I've already had all the screening done
• 17:47
  yeah but when you go into the six week pattern
• 17:49
  like you're having these kinds of the labs and the EKG
• 17:52
  those are just done the week of the procedure right
• 17:54
  it is it is
• 17:55
  so the way that Honor Health does it is
• 17:57
  we have our Hepzato treatments on Wednesday
• 18:00
  so I always see um
• 18:02
  Molly and Bree on Mondays to get my EKG done
• 18:06
  and my labs done and so they wanna have it uh
• 18:09
  I know you cannot have it more than I think three days
• 18:14
  because then you'll have to do it again
• 18:16
  gotcha yeah
• 18:18
  so they have to have it
• 18:18
  like within a certain window of time
• 18:20
  so my guess is like I'll you know
• 18:21
  going into my actual procedure date
• 18:23
  I'll probably have to have labs and like an EKG done
• 18:25
  one more time
• 18:26
  just kind of as a caveat for any of you guys listening
• 18:29
  the EKG
• 18:29
  like is gonna check heart rhythm and things like that
• 18:32
  and if for whatever reason anything were abnormal
• 18:35
  my guess would be
• 18:36
  they would have us repeat a stress test
• 18:38
  like that they would
• 18:39
  you know the stress test
• 18:40
  echocardiogram
• 18:40
  would be something they would go back to
• 18:42
  if they needed to
• 18:43
  but it's not necessarily required every single time
• 18:46
  it just really depends on how your body looks
• 18:48
  every single time you have the pre screening stuff
• 18:50
  sounds so technical stuff guys
• 18:52
  I'm here for it okay
• 18:54
  um so how do you
• 18:56
  how do you like the team that you've had
• 18:58
  like that's been organizing all of your care and yes
• 19:01
  each of these consecutive um
• 19:02
  Hepzato treatments
• 19:04
  absolutely I love my team
• 19:05
  I really do you're just gonna love them
• 19:07
  I promise they are just the best
• 19:09
  and they truly just care for you so much
• 19:12
  and even you know
• 19:14
  so you have like I feel like two separate teams
• 19:16
  cause you have your honor health research team that you
• 19:20
  we see all the time which is Molly Bree
• 19:22
  Doctor Moser uh
• 19:23
  Krista or sorry Chelsa
• 19:25
  she's just they're all just amazing
• 19:27
  and then you have your um
• 19:30
  radiologist team that you get to go to in the hospital
• 19:33
  and they are awesome as well
• 19:36
  the anesthesiologist uh
• 19:38
  that is there that does Hepzato because
• 19:42
  you know his job is so important
• 19:44
  but you really you know
• 19:45
  you kind of think oh
• 19:46
  Doctor Low's job is the most important one
• 19:48
  but actually
• 19:49
  it's the anesthesiologist's job that is very important
• 19:52
  and he is just he's amazing
• 19:54
  so the team is just great
• 19:57
  no I love that
• 19:57
  and I'm really glad
• 19:58
  like that we're getting to talk a little about this
• 20:00
  I mean obviously
• 20:01
  maybe we're a little biased
• 20:03
  maybe we're like a tiny bit
• 20:04
  I know because like we are yes
• 20:06
  all the time but also you guys
• 20:07
  like I just one of the big things that I really
• 20:09
  like to try to emphasize
• 20:10
  is that there's more care available
• 20:12
  to patients out west like a lot of patients
• 20:16
  kind of just in the Facebook groups
• 20:17
  you guys tend to maybe have this belief
• 20:20
  not all of us but like
• 20:21
  some of us have had the belief
• 20:22
  that we have to travel to the East Coast for treatment
• 20:24
  yes and um
• 20:25
  I just want you guys to know
• 20:26
  there are wonderful doctors out here in
• 20:28
  you know in the
• 20:29
  the Phoenix area in California
• 20:31
  in Washington who are in Colorado
• 20:34
  I'm like trying to think where else
• 20:35
  like in Texas like
• 20:36
  who are all working
• 20:37
  really hard to make sure that they have available
• 20:39
  treatments trials
• 20:41
  things like Hepzato
• 20:42
  which obviously like Hepzato is newly FDA approved
• 20:45
  so that means like
• 20:46
  that it's no longer something that is
• 20:48
  you know experimental
• 20:50
  in the same ways that it was to get that FDA approval
• 20:53
  they are still learning with it right
• 20:55
  every team that is doing Hepzato on a new patient
• 20:58
  they're learning with each patient
• 21:00
  you know how well things go
• 21:01
  like they're learning how to improve the process
• 21:04
  and they're just constantly like the um
• 21:06
  Hepzato people
• 21:08
  like the Hepzato team and the company that is behind it
• 21:10
  like Delcath is phenomenal at trying to just support
• 21:13
  their practitioners support all of the physicians
• 21:15
  support the patients involved
• 21:17
  like throughout the whole process
• 21:18
  um I think that there's a
• 21:20
  it's like Hepzato Access I think
• 21:21
  is a resource that patients can register for as well
• 21:25
  just for um
• 21:26
  kind of
• 21:26
  additional support in getting questions answered
• 21:29
  and also in um
• 21:30
  the insurance appeal or you know
• 21:32
  insurance approval process
• 21:33
  did you have any trouble with getting the insurance
• 21:35
  approval or did everybody at Honor Health
• 21:37
  just take care of that
• 21:38
  Castle Biosciences is a proud sponsor of this
• 21:41
  Eye Believe Podcast
• 21:42
  Castle's innovative uveal melanoma tests
• 21:45
  provide
• 21:45
  valuable information about the risk of your eye cancer
• 21:48
  spreading to help you and your healthcare team
• 21:50
  individualize the management of your disease
• 21:53
  to learn more visit Castlebiosciences.com
• 21:57
  yeah everybody at Honor Health just takes care of it
• 21:59
  so I'm one of the lucky ones
• 22:00
  like my husband's in the military
• 22:02
  so we have TRICARE which is a really great insurance
• 22:06
  um so we do have our
• 22:08
  our frustration with them with the
• 22:11
  just getting referrals
• 22:12
  it's very hard for us to see outside um
• 22:15
  network providers
• 22:16
  which Doctor Moser was an outside network provider
• 22:19
  so it took me about
• 22:21
  I wanna say after I got my diagnosis
• 22:24
  it took me about 3 months to
• 22:26
  I had to convince these referral people that it was a
• 22:31
  a medically necessary thing for me to go
• 22:36
  yes cause I
• 22:37
  you know and it
• 22:38
  it's it's terrible
• 22:39
  but I I literally had to say
• 22:40
  my life is on the line if I don't see this doctor
• 22:43
  and you need to understand that
• 22:45
  because it's a true thing
• 22:47
  yeah no
• 22:47
  it really is and it yeah
• 22:49
  anyway we could
• 22:49
  we could get into the weeds
• 22:50
  yeah we will not do that
• 22:52
  that's not where we're gonna go
• 22:54
  um but I'm really glad that it went well and that um
• 22:57
  and that's been the case for me as well
• 22:59
  just that that the
• 23:01
  the Hepzato Access team
• 23:02
  works really closely with any of the medical providers
• 23:05
  like who are getting prior authorizations or who
• 23:07
  you know are helping you navigate the insurance process
• 23:10
  so that it's very hands off for patients
• 23:12
  which I really appreciate
• 23:14
  cause I had a really bad insurance experience myself
• 23:16
  like yes
• 23:17
  this year and so it's really
• 23:19
  really helpful just to know that ahead of time that
• 23:21
  that for the most part
• 23:23
  they're really working hard to make sure
• 23:24
  patients don't have to bear the weight of this
• 23:26
  they really do they really do
• 23:28
  I know with uh
• 23:29
  whenever I went in to see Doctor Moser
• 23:32
  before I started Hepzato
• 23:33
  he already had my pre authorization
• 23:36
  everything done before I even had my appointment
• 23:38
  to even mention Hepzato he's like
• 23:41
  you're already done you're already ready
• 23:42
  you're scheduled for this date
• 23:44
  so yeah they're awesome
• 23:46
  no they're honestly
• 23:47
  they're really organized um
• 23:49
  I've I've appreciated that about this last
• 23:51
  like week and a half
• 23:51
  so let's chat about like the day of
• 23:54
  so okay
• 23:55
  I know like day of day after you
• 23:57
  obviously you go in for the procedure
• 23:58
  we talked about how you have to stay overnight
• 24:00
  so talk to us a little about
• 24:01
  you know what is
• 24:02
  what was it what was it like
• 24:03
  maybe
• 24:04
  the first time versus the second and the third time
• 24:06
  yeah absolutely
• 24:07
  cause I know it's a little bit different
• 24:08
  like once you kind of get into the
• 24:10
  the rhythm yeah
• 24:11
  whenever you go into the hospital uh
• 24:14
  there's really nothing that you actually do
• 24:16
  at Honor Health we have our own like little prep area
• 24:19
  so you are literally the only one in there
• 24:22
  um which is nice
• 24:23
  it's you and two nurses
• 24:24
  and they just make you feel so comfortable
• 24:27
  Molly and Chelsa those are
• 24:29
  you know like I said
• 24:30
  the head people on our team
• 24:32
  uh they will come in
• 24:33
  and just make sure that your anxiety is good
• 24:36
  that you understand everything that's going on um
• 24:39
  everything like that
• 24:40
  and then you do have to sign some paperwork
• 24:42
  of course just giving them
• 24:44
  authorization to be able to do the treatment
• 24:47
  and then you know
• 24:48
  you'll meet with uh
• 24:49
  Doctor Low
• 24:50
  Doctor Low comes in and he explains everything
• 24:53
  make sure you're feeling good and ready to go
• 24:55
  because with this treatment
• 24:57
  you know you
• 24:58
  you cannot go in weak with this treatment
• 25:00
  you have to go in ready to fight a war
• 25:04
  so you have to have that mindset mentality okay
• 25:07
  I'm going in as a warrior today
• 25:10
  that's something that I have found that
• 25:12
  that I need to do is just go in ready to fight
• 25:15
  um cause it's
• 25:16
  it's a big treatment that
• 25:17
  it's a big thing that you're doing to your body
• 25:19
  your body is going to hate you after
• 25:22
  but it's it works
• 25:24
  so um
• 25:25
  like I said all you'll see all of your doctors
• 25:27
  your anesthesiologist will come in
• 25:29
  he will give you your good
• 25:31
  good drugs and they will you back into the room
• 25:33
  and then you just
• 25:36
  you drift off to sleep and you wake up
• 25:39
  and so they're not doing any of
• 25:40
  everything's done replacement of like any of these
• 25:42
  you know any of the veins or the artery access
• 25:45
  absolutely not
• 25:46
  like and you're not awake for any of them
• 25:48
  you are not awake you have no idea
• 25:51
  the only thing you will get is an IV in your arm
• 25:55
  and we're all used to that as cancer patients
• 25:57
  yeah for sure okay
• 25:58
  so this is kind of a funky question
• 26:00
  I know like you know
• 26:01
  they they do the heart tests and they obviously
• 26:03
  they're monitoring your blood pressure
• 26:04
  all of that
• 26:05
  do they use just a normal like arm vein like a hand or
• 26:09
  you know like upper forearm or lower forearm
• 26:11
  or do they use an arterial
• 26:12
  artery or like an arterial vein
• 26:14
  you'll have a lot of them
• 26:15
  but whenever you first go in
• 26:17
  you're just gonna use a regular vein
• 26:18
  I also have a port that I had for um
• 26:21
  my uh Kimmtrak so they can use that also okay
• 26:25
  got you um so it's just whichever one I choose
• 26:27
  either the regular arm vein or my port
• 26:30
  I usually go with the arm vein because the port is
• 26:34
  whenever you wake up
• 26:34
  you've got a lot of lot of instruments um
• 26:37
  so but whenever you do fall asleep
• 26:40
  that's whenever they'll put in all of your sheaths
• 26:43
  and you will have um
• 26:45
  a blood pressure monitor that um will be in your wrist
• 26:50
  the artery right there okay
• 26:51
  but they don't put it on until after your surgery
• 26:53
  they will not yes
• 26:54
  you are all asleep whenever all of that pain happens
• 26:56
  you are fast asleep so and then whenever you wake up
• 27:01
  I don't even feel them so okay
• 27:04
  um you're good well all good things pain relief
• 27:06
  yes numbing all the things yeah
• 27:09
  I do appreciate like that you're you know
• 27:10
  just emphasizing and
• 27:12
  and the way that I've tried to explain it to people is
• 27:14
  you know there's
• 27:14
  there's good reason to feel nervous
• 27:16
  because this is kind of like the big guns of liver
• 27:19
  therapy um
• 27:20
  this is about as intense as it can get and you know
• 27:23
  in terms of what are we doing to the cancer or to the
• 27:26
  the healthy parts of your body
• 27:28
  to try to stop the cancer from continuing to grow
• 27:31
  so it is you know it is important to have that
• 27:33
  that knowledge and understanding
• 27:35
  but I think it's also you know
• 27:36
  also good to just to
• 27:38
  just recognize
• 27:39
  that it is something you can recover from
• 27:41
  relatively quickly
• 27:42
  you know that most people are tolerating it fairly well
• 27:45
  um yes
• 27:46
  all things considered right
• 27:47
  but I think that it's that
• 27:48
  all things considered part
• 27:49
  that maybe throws us off guard
• 27:50
  and sometimes we go into things like oh
• 27:52
  thinking oh
• 27:52
  it's just gonna be a breeze
• 27:53
  and it'll be totally easy and I'll be fine like yeah
• 27:55
  right away and it's like no
• 27:57
  you're having a major procedure
• 27:59
  you're gonna need some downtime
• 28:00
  like anticipate that plan for
• 28:02
  you know plan for more
• 28:03
  like
• 28:03
  depending on how your body responds the first time or
• 28:07
  you know just any of those kinds of things
• 28:09
  I guess yeah
• 28:10
  I kind of imagine going into the first one
• 28:11
  you kind of have to approach it like
• 28:13
  this is a little bit of a learning experience
• 28:15
  it's a learning experience
• 28:16
  it really is
• 28:16
  for the doctors and also for you and your care team to
• 28:19
  like figure out what do we need after
• 28:21
  yeah cause every patient is different
• 28:23
  everybody's anatomy is different
• 28:25
  so one thing that I learned with my uh
• 28:27
  first Hepzato treatment is I have a different anatomy
• 28:30
  ha ha shocker everything is different with me um
• 28:33
  so I had a different anatomy
• 28:35
  so they actually uh
• 28:37
  took a little bit longer doing my first Hepzato
• 28:39
  treatment because
• 28:41
  they had to find the correct arteries
• 28:43
  to be able to put those sheaths in
• 28:45
  to block that liver
• 28:48
  so your first time around is going to be a lot longer
• 28:51
  so my first time around was about 6 to 7 hours long uh
• 28:56
  my second and third one only 4 hours
• 28:59
  once they know your anatomy
• 29:00
  it does go quite quick I know like with my doctor
• 29:03
  you know
• 29:04
  revolving or talking about what do we anticipate right
• 29:07
  for how long is this gonna take
• 29:08
  you know the first time versus the next time
• 29:10
  obviously
• 29:11
  there's no way for them to give you like an exact like
• 29:13
  oh it's only gonna take this long because you know
• 29:15
  this is it when you have
• 29:17
  when you have anything happen surgically or
• 29:20
  you know in a procedural kind of a standpoint
• 29:22
  there's all kinds of
• 29:23
  of extra things that they have to plan for
• 29:25
  and pivot for and change and adjust
• 29:28
  and like you said physical anatomy is one of them
• 29:30
  how your body tolerates the anesthesia
• 29:32
  like there's lots of contributing factors
• 29:34
  to how long does it take
• 29:35
  I think I was told to estimate at least four hours
• 29:37
  like 3 to three and a 1/2 to 4 hours minimum like
• 29:40
  but yeah you know
• 29:41
  obviously there's there's room for it to be more
• 29:43
  there's room for it to be less
• 29:44
  it just depends and so just planning for that but
• 29:47
  but then you so you have the procedure
• 29:48
  you wake up yeah
• 29:49
  and yeah you said that you have the sheaths
• 29:52
  like the little
• 29:52
  they're like the little artery access points
• 29:55
  that it's like your 2 in your neck and 2 in the leg
• 29:58
  like groin artery areas
• 29:59
  yes and so those are still there
• 30:02
  and then what happens like you're slowly waking up
• 30:05
  so from anesthesia yeah
• 30:06
  you're you're waking up
• 30:07
  you know um
• 30:08
  your doctor's there
• 30:09
  to make sure that everything is okay
• 30:12
  uh they will run a EKG
• 30:15
  and do blood work before you wake up
• 30:17
  just to make sure that your heart is good
• 30:20
  and then they do the blood work
• 30:22
  to make sure that everything is okay
• 30:24
  as well as what you need because you're
• 30:27
  you're gonna need some stuff
• 30:28
  if you think about Hepzato
• 30:30
  um they filter out about 2 liters of blood
• 30:34
  so you are going to need blood products whenever um
• 30:37
  you wake up so just every anticipate that for me
• 30:41
  I only had to have about some plasma
• 30:45
  and a blood thickener
• 30:46
  cause they do thin your blood out pretty
• 30:48
  pretty drastically so
• 30:49
  you're gonna get a blood thickener
• 30:50
  whenever you wake up also
• 30:52
  once you have all your blood products
• 30:55
  your blood is back to normal
• 30:56
  that's whenever the anesthesiologist team will come in
• 31:00
  and they will remove three of those sheaths
• 31:03
  they will leave one of your veins
• 31:04
  so that way you can just have access for medicines
• 31:08
  and in case you need another blood product
• 31:10
  throughout the night that it's there for you okay
• 31:12
  that makes sense I'm gonna just you know
• 31:14
  go out on a limb here and say that
• 31:16
  they're giving you something to make it
• 31:18
  so you can't feel it when you remove those
• 31:20
  when you're awake
• 31:22
  no no OK
• 31:25
  no is it fine?
• 31:27
  like I mean let's just you know
• 31:28
  just be honest
• 31:29
  for those of us who have a low pain tolerance
• 31:32
  I will be honest
• 31:33
  so you want to know something it's more in your head
• 31:36
  okay it is in your head um
• 31:39
  because what they pull out of your vein is
• 31:41
  is quite long and it looks like a big noodle
• 31:44
  don't watch don't watch you guys
• 31:47
  they will tell you to yes
• 31:49
  they will tell you to take a big deep breath in
• 31:52
  and whenever you release they will pull and you know
• 31:56
  it happens so fast you have no
• 31:58
  you can't even think about what's going on
• 32:01
  and you're still like I'm sure in a daze
• 32:02
  I've I've been under a few times you
• 32:04
  you're in a bit of a daze
• 32:06
  yes you are just just don't watch you know
• 32:09
  I like to uh turn on TV and they are okay with that
• 32:13
  so I just sit there and I watch TV um
• 32:16
  but when yes
• 32:18
  whenever they come in and they
• 32:20
  take those sheets out
• 32:21
  they are gonna be with you for about 30 to 45 minutes
• 32:24
  um because they have to sit there and hold pressure
• 32:27
  for a long time and I'm not gonna sugarcoat that
• 32:31
  it's kind of it's kind of um
• 32:34
  a little painful um because they are quite sore
• 32:38
  you know
• 32:38
  they're really holding pressure so that way you know
• 32:41
  your blood can clot and and it you're
• 32:43
  you're good with that but once that's done
• 32:46
  you know
• 32:46
  it's it's okay once that's done they'll put the um
• 32:50
  a patch on and then once those are out
• 32:53
  you do have to lay flat for 6 hours
• 32:57
  this is the worst part of Hepzato
• 32:59
  is laying flat for 6 hours
• 33:01
  your back is going to be so mad at you
• 33:04
  but you know don't be afraid to ask for medicine
• 33:08
  because it's there for you
• 33:10
  you know you can get some good medicine
• 33:12
  to really help you get through that part okay
• 33:14
  so from what you're remembering
• 33:17
  have the treatment and then they have
• 33:19
  you know monitor
• 33:20
  you eventually remove the sheaths
• 33:22
  and then you wait for 6 hours
• 33:24
  or is the 6 hours part of what happens before
• 33:27
  no sheaths they
• 33:28
  the 6 hours starts as soon as those sheets are removed
• 33:32
  okay
• 33:32
  that's whenever your six hours usually starts okay
• 33:36
  I think that makes sense
• 33:38
  at what point when you wake up and like this
• 33:39
  you know all of these things are happening
• 33:41
  at what point can a caregiver be with you
• 33:44
  in your room like in the ICU
• 33:45
  so as soon as I wake up my mom is there
• 33:48
  my mom is the one that stays with me in the hospital uh
• 33:51
  so that way
• 33:52
  my husband can be here at home with my kiddos
• 33:54
  and my husband does not do very well in the hospital
• 33:57
  so it works out really well
• 34:00
  alright yes
• 34:00
  is she present when they're pulling the sheaths
• 34:02
  or is she present she
• 34:05
  she is present as much as she wants to be
• 34:07
  usually my mom likes to go grab coffee
• 34:09
  whenever they pull the sheaths out
• 34:11
  and that's totally okay yeah
• 34:14
  like that's okay yes
• 34:17
  alright so then I guess just kind of as we finish up
• 34:19
  what kinds of side effects have you had
• 34:21
  you know after the fact
• 34:22
  or maybe let's let's talk a little about what's
• 34:25
  you know
• 34:25
  what's been the first few days after treatment versus
• 34:27
  yeah absolutely
• 34:30
  yeah so
• 34:30
  you know you stay in the ICU room for um
• 34:34
  for a little while until you're ready to go home
• 34:37
  the doctors will come in they'll monitor you
• 34:38
  and make sure that you're all good to go
• 34:41
  once you go home I really like to take it easy that day
• 34:44
  um your body really does feel like noodles
• 34:47
  so just go lay down take a rest
• 34:50
  you know let
• 34:51
  let your caregivers
• 34:52
  do the job that they need to do cause
• 34:54
  that's why they're there
• 34:55
  it's okay to have care let them
• 34:58
  let them do what they're here to do
• 34:59
  they love it you're not a burden
• 35:01
  it's really hard to it is
• 35:03
  we really like to be independent especially
• 35:06
  I don't know
• 35:06
  maybe it's a mom thing or maybe it is our age group
• 35:10
  I don't know yeah
• 35:12
  it it
• 35:12
  it is it's very difficult
• 35:14
  but I have learned that with my first time around
• 35:18
  I tried to do everything and I regretted that
• 35:21
  so I would totally suggest just take your time
• 35:25
  listen to your body and it's okay
• 35:27
  it's okay to ask for help for sure
• 35:29
  but I took about I
• 35:31
  I would say about a week of recovery the first time
• 35:34
  the second
• 35:34
  and third time was a little bit less than that okay
• 35:37
  did you have any kind of pain or nausea or like
• 35:41
  some of the most common side effects
• 35:42
  if you like read on the website
• 35:43
  like I think yes
• 35:44
  like abdominal pain and nausea are like some of the
• 35:47
  the top ones yeah
• 35:49
  I did experience a little bit of abdominal pain
• 35:52
  um with the Hepzato
• 35:54
  that was probably about your first or second day
• 35:56
  is what what I kind of experienced
• 35:59
  I was okay just taking Tylenol
• 36:01
  I didn't have to do anything hard
• 36:03
  and you know just
• 36:04
  just like I said they do
• 36:06
  they do after liver stuff
• 36:07
  they don't like you to take Tylenol yes
• 36:10
  um no
• 36:10
  they do allow you to take Tylenol and
• 36:12
  you know just really
• 36:13
  just take care of yourself
• 36:14
  I have found I do have a heated blanket
• 36:17
  and that has really helped me also
• 36:19
  just with the pain in in your legs and your
• 36:23
  your tummy that has really helped me okay
• 36:27
  no I think those are
• 36:28
  those are good things and yeah
• 36:30
  and I'm sure like there's
• 36:33
  for for whatever you're experiencing as a patient
• 36:35
  like going through this like I would
• 36:37
  I would venture to guess that
• 36:39
  if you were to talk to your medical team about it
• 36:41
  like and you're experiencing it
• 36:42
  you're not sure what to do
• 36:43
  or like what you're doing isn't working
• 36:45
  if you were to call like the nurse team
• 36:47
  um or the nurse practitioner
• 36:48
  um in charge of your case
• 36:49
  they would
• 36:49
  most likely be able to give you some suggestions of
• 36:52
  like yes
• 36:53
  I'll try this like these are
• 36:54
  you know other ideas to do
• 36:55
  instead of what maybe you've already tried
• 36:57
  okay and then
• 36:58
  so I know you were on Kimmtrak before
• 37:00
  have you had any other kind of immunotherapy
• 37:03
  alongside Hepzato
• 37:05
  I did not so I um
• 37:07
  did not have any tumors outside of my liver
• 37:10
  whenever I started Hepzato
• 37:12
  and Kimmtrak
• 37:13
  was something that really didn't work for me
• 37:15
  so with communicating with my doctor
• 37:19
  we just really didn't want to add that
• 37:20
  added stress onto my body
• 37:22
  with adding another treatment
• 37:24
  um so that's something that I did not do
• 37:26
  but I know
• 37:27
  other patients have done it and it's worked for them
• 37:29
  so it's okay to have that
• 37:31
  yeah
• 37:32
  and that's something that is definitely being evaluated
• 37:34
  right it's being evaluated by a lot of medical teams
• 37:36
  across the country who are just trying to determine
• 37:39
  like at what point and how effective is it
• 37:41
  but one of the things
• 37:42
  most of the doctors who I've talked to about
• 37:44
  have said is that if you are on immunotherapy right
• 37:48
  that is working and helping
• 37:50
  that they will not have you stop that necessarily
• 37:52
  like yes
• 37:53
  you will be able to continue
• 37:54
  like say obviously
• 37:55
  if it was an infusion
• 37:56
  the same day as your treatment day
• 37:57
  that wouldn't work
• 37:58
  but you don't necessarily have to like oh
• 38:00
  stop
• 38:00
  like two weeks ahead and then continue two weeks after
• 38:03
  like it's yeah
• 38:04
  it's really pretty consistently um
• 38:07
  like able to be done alongside
• 38:09
  and they are studying like okay
• 38:10
  is it more effective right
• 38:12
  does it make it more of a
• 38:13
  of a I don't know
• 38:15
  a sucker punch so to speak
• 38:16
  to what's going on with the cancer
• 38:18
  to capitalize on chemo plus immunotherapy
• 38:21
  like that combination approach is definitely being
• 38:23
  it's being explored and studied for sure
• 38:25
  and I mean I'm just a big person
• 38:28
  like a big believer in the
• 38:29
  the placebo effect
• 38:30
  or just in what we believe going into something right
• 38:32
  that if we yeah
• 38:33
  if we as a patient believe that
• 38:34
  it's gonna be really hard
• 38:35
  like our body listens to that
• 38:38
  I think yeah
• 38:39
  it does um
• 38:40
  it does so I love
• 38:41
  I love what you said too
• 38:42
  about going into this with that mindset of like okay
• 38:44
  this is gonna be hard but I'm gonna be able to do it
• 38:46
  and exactly I know that
• 38:48
  you know we've talked a little about some of my own
• 38:50
  like anxiety as a person like about some of this yeah
• 38:53
  and that's just something to
• 38:54
  you know to prepare for
• 38:56
  you know mentally emotionally
• 38:57
  whether it's with a therapist
• 38:58
  or just with the support of your team
• 39:00
  and just getting more information
• 39:02
  like learning what you need to do as an individual to
• 39:05
  like help kind of prep yourself
• 39:07
  because I think in I don't want to say we luck out
• 39:10
  right
• 39:10
  because we have a really sucky cancer to deal with
• 39:12
  we really do in some ways
• 39:15
  some of us don't experience
• 39:16
  any kind of intense treatment
• 39:18
  until this point right
• 39:20
  like yes
• 39:20
  I mean arguably liver surgery
• 39:22
  anything like that that can be intense
• 39:24
  but it's not the same as like oh
• 39:25
  you had a weekly infusion or yes
• 39:28
  um like something that's causing continual side effects
• 39:30
  like maybe a clinical trial that you're on
• 39:32
  that maybe it's working but the side effects are gnarly
• 39:34
  um yes
• 39:35
  and so to you know
• 39:37
  to go into it and having you know
• 39:39
  having never done anything
• 39:40
  that has created those kinds of
• 39:42
  of side effects I know for me
• 39:43
  like that's that's like super nerve wracking and
• 39:46
  and um
• 39:47
  so I'm you know
• 39:48
  I I feel like I trust my medical team
• 39:50
  but I'm also like yeah
• 39:51
  low key a little bit freaked
• 39:53
  and I think that's relatively normal
• 39:55
  I think it'll get better like each time that I do it um
• 39:59
  it will but yeah
• 40:00
  it will cause once you
• 40:01
  how did you feel like the first time versus now
• 40:04
  the third time yeah
• 40:05
  well the first time of the first time you're
• 40:07
  it's so unknown and that's
• 40:09
  and that's the thing is with this cancer
• 40:11
  it's the unknown that really haunts us all
• 40:14
  and so once I got the Hepzato
• 40:17
  and I got that first one on my belt
• 40:20
  and I was good after that
• 40:22
  you know I know I'm in great hands
• 40:24
  I know I have the best team and I'm
• 40:26
  I'm okay and so I
• 40:28
  you know I'm not gonna say that
• 40:31
  I look forward to seeing them
• 40:33
  every single time I go in there
• 40:36
  but whenever I do sit in that chair and they do come in
• 40:40
  I do feel at ease whenever I do see them
• 40:42
  so it's it's good
• 40:43
  it's okay yeah
• 40:45
  Hepzato is definitely something that it
• 40:49
  it's whenever you read about it
• 40:51
  you look at it it's
• 40:52
  it's intense
• 40:53
  but once you actually experience it and you kind of
• 40:57
  kind of get the rhythm of it
• 40:58
  you you feel better yeah
• 41:00
  now that makes sense I think yeah
• 41:02
  I I really like what you said about the unknown
• 41:03
  that that's really kind of
• 41:05
  some of the worst feeling of it
• 41:07
  is the unknown
• 41:08
  and I think that that we can all relate to that okay
• 41:11
  so just to end then Alley
• 41:12
  thank you so much for your your time
• 41:14
  your story like just all of your insights
• 41:15
  I feel like this has been monumentally helpful
• 41:18
  and I hope those of you guys listening
• 41:19
  if you're considering Hepzato
• 41:20
  like that
• 41:21
  this has helped
• 41:21
  kind of alleviate some of your concerns
• 41:23
  what would you tell someone like me who's like
• 41:25
  nervously considering this
• 41:27
  but maybe they haven't really decided
• 41:28
  if they really want to like
• 41:30
  do this or not I always tell patients
• 41:32
  you know the grass is never greener on the other side
• 41:36
  just because it's working for one patient
• 41:38
  does not mean it's gonna work for you
• 41:40
  so obviously listen to your doctor
• 41:42
  because they are the ones that know the best
• 41:45
  and they're
• 41:46
  they're not gonna they're not out here to sabotage you
• 41:49
  listen to what they have to say
• 41:51
  and
• 41:53
  make sure that you're getting your questions answered
• 41:55
  because if you're sitting here wondering okay
• 41:58
  I need to get this question answered
• 42:00
  just just text them and ask them
• 42:02
  that's what they're there for
• 42:02
  they're here to put you at ease
• 42:04
  so that's my biggest thing
• 42:06
  if you're considering Hepzato
• 42:09
  it it's okay it's okay
• 42:11
  it's not as scary as you think to to have it
• 42:13
  it's a good treatment and it's really worked for me
• 42:16
  for someone that has had a defeat
• 42:18
  with a treatment already to go to this one
• 42:21
  and my tumor is almost halfway shrunk
• 42:24
  I'm pretty okay with that
• 42:26
  oh okay
• 42:27
  we forgot to cover this
• 42:28
  you've had the CT DNA test done as well right
• 42:32
  I have yes
• 42:33
  okay so talk to us a little about that
• 42:34
  because I know that that's okay for you
• 42:37
  yes so my CT DNA whenever I first started Hepzato
• 42:40
  it was 3.74 after my first treatment
• 42:44
  it did go down to 2.21 after the second one y'all
• 42:48
  it was zero
• 42:50
  so I just had my CT DNA done again and um
• 42:54
  I have actually haven't had treatment in about 12 weeks
• 42:58
  just having one of those side effects from Hepzato
• 43:01
  your white blood cell count um
• 43:03
  it does affect your white blood cell count
• 43:05
  the longer that you have Hepzato
• 43:07
  but they do have treatment out there to kind of
• 43:09
  help you with that so don't be nervous about it
• 43:12
  they have shots and everything
• 43:13
  that you can do to help boost that white blood cell
• 43:15
  count again
• 43:17
  so I did get a CT DNA and it was 0.24 okay
• 43:22
  so nothing crazy nothing crazy y'all yeah
• 43:26
  no that's really cool
• 43:27
  and you guys if you don't know about the CT DNA
• 43:29
  or if your doctor isn't running one
• 43:30
  please just reach out to them
• 43:31
  ask them about Signatera and about how they can
• 43:34
  you know use any of these
• 43:36
  not just Signatera there's other CT DNA tests out there
• 43:38
  but but there are some very specific ones that
• 43:41
  in some cases
• 43:42
  can find if there's kind of cells floating around and
• 43:46
  um and I think it's been really cool to see
• 43:48
  patients who are having Hepzato
• 43:50
  and have their CT DNA drop from something really high
• 43:52
  to something almost non existent
• 43:54
  and I really hope that you're able to get
• 43:55
  another treatment soon
• 43:56
  um but I also appreciate that like
• 43:59
  you got the three treatments under your belt
• 44:01
  and that's been good and now you have had enough of a
• 44:04
  you know you've had a break
• 44:05
  and so hopefully going into the next one
• 44:06
  like your body will be you know
• 44:08
  prepped and ready and it'll feel good
• 44:10
  um as good as it can feel right
• 44:12
  but like yes
• 44:13
  yes it will be um
• 44:14
  maybe even more effective right
• 44:15
  just having had the break
• 44:16
  mm hmm so yes anyway
• 44:18
  alright you guys
• 44:19
  thanks for listening thanks for tuning in
• 44:21
  thank you huge thank you to our podcast sponsors
• 44:24
  um we couldn't do this without you guys
• 44:26
  and Alley just a major thanks to you for doing this um
• 44:29
  and for making the time
• 44:31
  and being willing to share your experience
• 44:33
  like I know we got into some of the nitty gritty
• 44:35
  yep
• 44:38
  all right you guys
• 44:38
  we'll talk to you next time thanks