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KyleS
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KyleS

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      • March 30, 2021 at 11:40 am
      KyleS
      Participant
        I have been on Braftovi / Mektovi for a while now and the only issue that I had was a borderline low LVEF that was resolved with a dose reduction. It’s weird how some people get a full list of side effects while others get virtually nothing. I think one positive thing to look at is most of these side effects can be well managed with dose reductions, drug holidays or other medications.
        • March 28, 2021 at 11:14 pm
        KyleS
        Participant
          Hi Amanda,

          I have not done TIL, but I have had a positive result on multiple therapies. This list starts wayyyyyy back in 2006 – present.

          Interferon
          Chemobiotherapy SWOG 0008 trial
          IMRT (Radiation one month)
          High Dose Il2
          Dabrafenib
          Ipi/nivo + 13 nivo cycles + SBRT until I had to stop due to elevated ALT / AST.

          Plus some surgeries in between.

          I am currently on Braftovi / Mektovi and I have been a complete responder for almost 2 years. I know there are ongoing studies regarding Ipi / Nivo rechallenge and Nivo single agent rechallenge. TIL is also a viable option and is probably worth a consult. There’s also intralesional’s which can be injected via ultrasound if they aren’t visible. SBRT has a very good local control rate for tumors that are slow to respond. I know it sucks, but sometimes it takes a few treatments to find the right one. Keep your head up, look at all the options that you have and make a plan. Hang in there!!

          • March 30, 2021 at 2:13 pm
          KyleS
          Participant
            It wasn’t quite heart failure level but my LVEF at baseline was I believe somewhere in the 60% range.  I had a follow-up echo 3 months later after starting the drugs and it had dropped to 50%.  I ended up having my Mektovi dosage reduced and the follow-up echos after that showed my EF back in the 60% range.  It is a rare side effect but I felt fine with that since I was being monitored with echos every few months.  Don’t let that scare you away though!!  I have been NED for almost 2 years on these drugs.
            • February 7, 2019 at 4:45 pm
            KyleS
            Participant

              Hi Kelly.  Yes, melanoma does like to throw curve balls at us (had to use a baseball reference 🙂 ).  I couldn't play varsity golf my senior year in high school and I remember being pretty upset.  Hang in there, only a few more months of treatment to go!  

              • February 7, 2019 at 4:30 pm
              KyleS
              Participant

                Hi Kerri!  Sorry for the long delay responding back to you.  I'm married with 2 kids (ages 8 and 4) so that keeps me busy most of the time.  I moved out when I was 19.  I completed my Bachelor's degreee (took longer than most, thanks melanoma!) and I am working full time.  I know it's easier to say than do, but I just kept chugging along knowing that one day I would beat this disease.  Don't let melanoma stop you from doing the things that you want to do.  Hang in there and stay positive!!!

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