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Update

  • Post
    SOLE
    Participant
      I thought my current situation could give a little hope so I’m giving my update. I have not crossed stage 4 and so I’m reluctant to boast or to come out inappropriate here.

      Anyhow, last September 9th 2021, I have successfully crossed the 5 year NED threshold after a very bad nodular ulcerated, at least T3b, initial lesion under my right foot. I got unofficially restaged as 2b or more likely 2c as it turned out I finally did not have node involvement.

      As I now see the FDA approval of Pembro now available for such melanoma patients, I am really happy to see such improvements with our disease. But I also can’t take out of my mind all the people we have lost too soon because those medications were not available in time for all of them. I confess, I have a lot of difficulties coping with how treatments are made available. My heart goes out to all of us.

      As for me, thanks to this forum and all of its participants, I got educated and took matters into my own hands (shout out to Celeste and Ed!) I will still be followed for the next five years as per my oncologist’s recommendation with a yearly PET/CT scan and blood work and I’m greatful for that. If ever Pembro was also to be made available for stage 2b/2c patients here in Canada at some point, and I’m still NED, I will kindly ask to have it if possible after all those years now. One key concept for all of us is tumour burden. Treat while disease is small  Neoadjuvant treatment is also speaking volumes.

      So I’m sending my prayers, loving thoughts, indefectible courage and best wishes to all for this new year coming  Let there be light and love in all of our lives.

      Sincerely,

      Marc

      PS. If any of you by any chance travel to Ottawa in the month of December for the next 5 years, and stop by Parliament Hill at night and look at the video&light show projected, you will be able to hear my music. Music from a melanoma patient survivor. Peace to all.

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        Bubbles
        Participant
          Oh, Marc!  That is wonderful news.  I remember well when you were diagnosed.  I agree with your sentiments about how treatments are evaluated, approved and attained!  It is a strange road at best.  And, like you, there are lost melanoma peeps forever in my heart for whom I can only dream of ‘what might have been’.  I figure the Edster might be able to pop by to hear your music.  Any links or other ways those of us further afield might give it a listen?

          Wishing you another zillion years NED!  Enjoy your holidays, my friend.  Yours, celeste

          sing123
          Participant
            Marc,

            Much congrats on your 5 years! Ottawa is a beautiful place. Am sure your music makes it more so.

            Best,

            Cindy

            sing123
            Participant
              Marc,

              Much congrats on your 5 years! Ottawa is a beautiful place. Am sure your music makes it more so.

              Best,

              Cindy

              mrbill16323
              Participant
                Thankful for your status! Sending Peace.
                YoJa
                Participant
                  First of all, congrats! This is obviously wonderful news.

                  Second, at what point did you start to feel even slightly less anxious? I’m almost 6 months out and everyday I struggle to not think about my own mortality and recurrence. So far my scans have been clean but that was only a recent CT scan. Seems like a PET scan is better at detecting.

                  I’m on pembro now but those odds aren’t great either. The only way I’ll know if it is working, is if it doesn’t.

                  Anyway, when do you start to feel any less ridden with anxiety? I feel like I’m jinxing myself even asking this.

                  M

                    SOLE
                    Participant
                      My experience is obviously personal and yours is entirely different and will remain so.

                      That said, it took me a good 2 years to be able to dig myself out of my psychological situation. Personally, once I crossed the statistical 24 months without recurrence, I started climbing back up. Next threshold was 3 years and finally last year, at 5 years. Next is the 7th year. And I’m now more hopeful to get to 10 safely.

                      It is true that it gets better with time. Statistically speaking and moral-wise.

                      There was life before, and life since. You are doing it. We are all doing it.

                      Sending you my best thoughts and support. Let this new year be a peaceful one for you and your family.

                      Sincerely,

                      Marc

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