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2 Years NED, Kind of
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2 Years NED, Kind of

› Forums › General Melanoma Community › 2 Years NED, Kind of

  • Post
    • August 8, 2019 at 2:14 pm
    Hukill
    Participant
      After starting with 7 tumors in my lungs in 2016 I had scans last week and have been NED for 2 years now but in July I did have a melanoma spot removed from my right arm, in SITU. Had second surgery to remove more even though I had 1.5 mm clear margins in the biopsy. I feel bad for posting this as so many on here are going through tough times now but at the same time I want to show there is hope and for some the ipi/nivo does work and fear not the side effects as they are better than melanoma. It has been 1 year since I completed 57 treatments, 5 combo and 52 nivo, and I am still dealing with side effects but no melanoma.
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    • Replies
        • August 8, 2019 at 2:20 pm
        Bubbles
        Participant
          Thanks so much for posting Hukill!!! And CONGRATS!!!! I seriously hope that you are done with melanoma is ALL it’s Machiavellian forms!!! HOPE is a 4 letter word we can use lots of around here!! love, c
          • August 8, 2019 at 2:41 pm
          Casitas1
          Participant
            Congratulations! Well done.

            Best, Paul

            • August 8, 2019 at 4:46 pm
            mandyjill
            Participant
              Hukill,
              It has been a year since I completed my ipi/nivo treatments after being on it a year. I was convinced the side effects were just something I was going to have to deal with for the rest of my life, but have noticed a significant improvement over the last 6 weeks or so.
              • August 8, 2019 at 7:38 pm
              MarkR
              Participant
                Thank you for this post
                I’m on Nivo mono at present and they just removed a bit of Mel from my arm near the original scar. It’s been bothering me a lot and with scans in a few weeks have been quite stressed. This gives me some more hope so thank you
                Really pleased for you as well keep up the good work – those in the trenches need some good news every now and again!
                Cheers
                Mark
                • August 9, 2019 at 12:58 am
                lkb
                Participant
                  Congrats on continued “NED, sort of)” and on your vigilance regarding your arm. It’s a reminder to all of us that NED is real, but that even then, we need to stay alert. Thanks for posting.
                  • August 9, 2019 at 5:28 am
                  MelanomaMike
                  Participant
                    Hip Hip! Huraay! Hip Hip! Thats badass Hukill! Theres Hope! And thank you for posting every so often, theres always New folks signing on here to MRF newly diagnosed, scared & even Scared (nervous) to start Immunal Therapies like you just completed! They need to read your posts the most! Please send a message to StudioDad he needs some encouraging for immunal weapons of war!
                    Good to hear from ya!!
                    • August 11, 2019 at 5:00 pm
                    SOLE
                    Participant
                      Hu, never apologize for any kind of good news! Insitu or not, we all deal with that at some point. But NED inside after two years of combo, you ROCK! I am very hopeful that you are close to the comforting c word.
                      Congratulations!
                      • August 12, 2019 at 3:47 am
                      MelMel
                      Participant
                        Great news and thank you for the encouragement!
                        Melanie
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