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2-year NED anniversary
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2-year NED anniversary

› Forums › General Melanoma Community › 2-year NED anniversary

  • Post
    • July 17, 2019 at 9:18 pm
    sister of patient
    Participant
      Hi Folks,

      I’ve been intending to post for a couple of weeks now but, as I’ve experienced before, it’s hard to deliver our own great news when others are suffering and fighting for their lives. To all the newly diagnosed, those experiencing recurrence or treatment failure, we feel your devastation!! Please know that our hearts, best thoughts and wishes go out to you!!

      My sister, Leisa, has just passed the “unofficial” 2-year NED mark – her first clear scan was in July 2017, so that is what we celebrate and we’re taking off next week for a girls’ road trip, where, somewhere along the way, we will be stopping to enjoy a new F.U. cancer cake 😀

      Despite my bit of levity here, we do realize that one is only clear scan to scan and we thank the gods that be every day that Leisa is still here, alive, NED and living her life. I’m still here on this board because my biggest fear for her now is recurrence and I want to be armed and ready if that day should come (I think I actually sweat her scans more than she does). As a complete responder though, and now two years without recurrence, I believe she has reached a new plateau where the survival stats are even more encouraging.

      I won’t go into detail (it’s all in the profile) but suffice to say that targeted treatment, radiation and immunotherapy did the total job here (no surgery after CLND) and eradicated a demon that had taken over her spine, other bones, lungs, liver, spleen, pancreas, other soft tissue areas and infiltrated her brain with an onslaught of mets (hundreds of micro-mets).

      Her scan schedule has eased a bit now – brain MRIs and app’t.s with radio-onc are at 6 month intervals, thoracic CTs and app’t.s with mel onc are now at 4 mo.s apart and will move to 6 at the end of this year, with derm app’t.s at the off-set every 6 mos. She’s not without permanent damage and is dealing with a number of smaller issues, some just bothersome, some quite painful but I can tell you with all sincerity, she considers them a trade-off she would make again if necessary!!!!

      Peace and love to all!!!

      Barb

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    • Replies
        • July 17, 2019 at 9:42 pm
        Casitas1
        Participant
          Congrats! Well done!

          Best, Paul

            • July 18, 2019 at 1:44 pm
            sister of patient
            Participant
              Thank you Paul! And congrats to you on three years – that’s just great!!!!!!

              Best wishes, always,

              Barb

            • July 18, 2019 at 2:17 pm
            ed williams
            Participant
              Hi Barb, I know how you feel when it comes to posting about how happy you might be that things are going well when many are up against it!!!! Give Leisa my best and I hope those scans keep coming back clear!!! I have hit some mile markers that I thought were out of reach 6 years ago when I progressed to stage 4 with lung and brain mets, and sharing that news would seem to be the thing to do but I find that I hold back talking about it as well. July, 2013 my oncologist gave me the news that the Ct scan had confirmed a tumor in my lung, this led to a needle biopsy of the lung. I am treated in Ottawa, Ontario, Canada and it is a teaching hospital, which means that many of the procedures that I have had done involved an expert teaching their student how to do it properly. When, a guy with a big needle is about to plunge it into your lung and you here the pros and cons of going at the tumor from that angle, it does make for a very sporty experience!!! I wonder what it would be like to sit around a camp fire with a bunch of other stage 4 folks and share some of the melanoma adventures they have had. Best Wishes!!!Ed
                • July 18, 2019 at 4:01 pm
                sister of patient
                Participant
                  Hi Ed – Thank you for well wishes!! Yes, it’s hard to post good stuff in the face of all the bad news lately but I know it’s important to give others hope. I still read all the NED posts and I always will – I clung to those in our “darkest times” – they gave me hope!!! I chuckled at the campfire suggestion – what a time that would be, especially if it was a “mixed country” group – treatment differences still exist!!!

                  Wishing you the best too, always!

                  Barb

                • July 18, 2019 at 6:19 pm
                guynamedbilly
                Participant
                  That’s great! Speaking as someone still going through it, I certainly enjoy hearing about people who have done well. It’s good to see it being beat.
                    • July 19, 2019 at 4:54 pm
                    sister of patient
                    Participant
                      Hi Billy,

                      I’m so glad it’s helpful to you and, yes, it certainly can be beat – I wish you the speediest path to do just that and will look forward to a “slayed the monster” post from you 🙂

                      Take care.

                      Barb

                    • July 19, 2019 at 1:50 pm
                    Bubbles
                    Participant
                      Oh, Barb!!! That is wonderful. I love the FU Cancer Cake!!! Levity, love, celebration and good news are always welcome here! Made ME smile!!! I am so happy for you and your sis. Sorry that she still has struggles. I know at least some of what she feels in that regard. (Some stuff SUCKS!!! But ~ it sucks a lot less than some alternatives!!!!) I too, have a sis that has played an incredible role in getting through my SHISSSS-ka-bobs!!!! I definitely know the gift that that has been to me and mine. You and my Ruthie are a blessing. I thank you for sharing and for taking such sweet and formidable care of YOUR sis! Much love, c
                        • July 19, 2019 at 5:20 pm
                        sister of patient
                        Participant
                          Ahh Celeste … this brings tears!! Thank you for your beautiful words – and I’m so glad I could make YOU smile 🙂 I’m even more glad that you have your Ruthie, with everything you have gone and are going through and all you do for others, absolutely selflessly, it’s comforting to know she’s got your back!!! My heart and big hugs go out to both of you!!!

                          Best, always,

                          Barb

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