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14 yrs with melanoma, 4 yrs post nivo, still NED!
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14 yrs with melanoma, 4 yrs post nivo, still NED!

› Forums › General Melanoma Community › 14 yrs with melanoma, 4 yrs post nivo, still NED!

  • Post
    • September 5, 2017 at 2:28 am
    Bubbles
    Participant

      Perhaps this will spread a bit of hope:

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/09/14-years-in-melanoma-world.html  

      After now annual scans (CT's of neck, chest, abd and pelvis, with an MRI of the brain) the gist is this:

      168 months (14 YEARS!!!!) post my original melanoma diagnosis in 2003 at the age of 39
      88 months Stage IV (more than 7 years!!!)
      82 months NED
      80 months after starting nivo (Opdivo)
      50 months (more than 4 years) AFTER my last nivo infusion in June 2013

      For all our stuggles and losses…there are wins as well.  I wish you all my best.  Celeste

    Viewing 27 reply threads
    • Replies
        • September 5, 2017 at 2:35 am
        mrsaxde
        Participant

          That is nothing short of awesome! Congratulations! I really believe that with the advances in treatment we are seeing, stories like yours are going to become more and more common over the next period of years.

          -Bill

          • September 5, 2017 at 4:20 am
          Momofjake
          Participant

            Immune therapies are a miracle! This offers hope to many! Thank you for what and how you communicate needed information to so many! 

            Cheers to many more years!

            kerri

            • September 5, 2017 at 11:51 am
            MichelleRHG
            Participant
              Praying many (or all!) can follow in your footsteps. Thank you for sharing.
              • September 5, 2017 at 12:13 pm
              marta010
              Participant

                Congratulations!  News like this does give hope to so many.

                • September 5, 2017 at 12:53 pm
                Janner
                Participant

                  Yahoo!!!

                  • September 5, 2017 at 2:14 pm
                  SABKLYN
                  Participant

                    Wow!  Truly awesome.  As awesome as all you do to support, help and comfort the members of this group.  Continued good health Celeste!

                    • September 5, 2017 at 2:22 pm
                    Johnjk04
                    Participant

                      Way to go Les!!!!  I visited Dr. Sznol last week (5 yrs. out, group of 53, ippi/ nivo). He feels odds of reoccurrence is 100 to 1. Enjoy.

                      • September 5, 2017 at 2:33 pm
                      Shannon B
                      Participant

                        Yay!

                        • September 5, 2017 at 3:23 pm
                        Linny
                        Participant

                          Wow!!!! Wonderful news!!

                          • September 5, 2017 at 4:40 pm
                          cancersnewnormal
                          Participant

                            One word…. BOOYAH! **insert flexed bicep here** 😉

                            • September 5, 2017 at 4:43 pm
                            sister of patient
                            Participant

                              Just fabulous!! Again, here's to a lifetime and thank you for all that you do!! Best always!!

                              Barb and Leisa

                              • September 5, 2017 at 5:59 pm
                              jbronicki
                              Participant

                                That's the best news I've heard all year, congratulations!  I honestly can't think of a better person or anyone more deserving of this news, thank you for all you do.  From a data perspective and how you help others with the data/research from this disease, you are my idol!

                                • September 5, 2017 at 6:29 pm
                                Jahendry12
                                Participant

                                  Wow!!!!  I really needed to hear that good news today.  So happy for you Celeste.  As other posters have stated, you are a priceless member of this community and provide so much information as well as hope for all of us.  Thank You Thank You Thank You for all you do!!!

                                  • September 5, 2017 at 9:23 pm
                                  Scooby123
                                  Participant

                                    ❤️❤️ So pleased Hun for you.

                                    Scooby❤️

                                    • September 5, 2017 at 11:48 pm
                                    BrianP
                                    Participant

                                      Awesome Celeste.  Thanks for all you do in helping us peeps!

                                        • September 6, 2017 at 12:22 am
                                        vivian
                                        Participant

                                          Celeste, this is wonderful news – so happy for you!  Thank you for all you have done to keep the rest of us in the know!

                                          Lear

                                        • September 6, 2017 at 1:13 am
                                        Ridingaroundwith27Jennifers
                                        Participant

                                          Congratulations and thank you!  You are a light that shines while we are in the darkest part of the tunnel.  I hope you continue as NED.

                                          Best,

                                          Jennifer

                                          • September 6, 2017 at 5:34 am
                                          Polymath
                                          Participant

                                            Great big fat hairy…Awesomeness!

                                            • September 6, 2017 at 1:42 pm
                                            ed williams
                                            Participant

                                              Great post, hope is always important!!! NED, is another word many hope to hear one day!!! Found this the other day and though you might like to see it, features one of the best Oncologist in the melanoma world. Best Wishes!!!Ed   https://www.youtube.com/watch?v=2Vc_e6KZboU

                                              • September 6, 2017 at 4:12 pm
                                              Mat
                                              Participant

                                                Awesome!

                                                • September 6, 2017 at 5:15 pm
                                                Patrisa
                                                Participant

                                                  Awesome Celeste, may you stay NED forever!!!!!!!!!!

                                                  Love,

                                                  Patrisa

                                                  • September 6, 2017 at 7:30 pm
                                                  jennunicorn
                                                  Participant
                                                    Celeste you are the MVP here and I am always happy to hear of your continued NED status! As always, thank you for sharing your awesome brain power with us!
                                                    • September 7, 2017 at 2:58 pm
                                                    Bubbles
                                                    Participant

                                                      Hey Guys!!!

                                                      Thanks so much for all the sweet notes and warm wishes.  I am ever so grateful to have each and every one of you dear peeps to share this milestone with!  Thanks for the awesome link, Edster!!  I suspect it will be part of a blog post soon!  And…just to show you all how silly I am….I laugh out loud each time I see a bit of my weirdness show up in the vernacular:  'peeps', 'ratties' and 'GREAT BIG HAIRY….'!!!  Love it!!! It takes a village and this is one of the best I've ever been a part of! love, c

                                                      • September 7, 2017 at 3:06 pm
                                                      WithinMySkin
                                                      Participant

                                                        CONGRATS, Celeste! You have had such a tough and inspiring journey, helping hundreds of others along the way. You are a beacon of hope to many on this site. Here's to another 82 months NED!!

                                                        Lauren

                                                        • September 7, 2017 at 5:44 pm
                                                        betsyl
                                                        Participant

                                                          That's awesome! Thanks for sharing your lightness, sunshine, hope, and knowledge! 

                                                          • September 7, 2017 at 10:53 pm
                                                          Jubes
                                                          Participant

                                                            so glad to hear this!!

                                                            • September 7, 2017 at 11:10 pm
                                                            Cindyco
                                                            Participant

                                                              Thank you for all your work in sharing all your knowledge! 

                                                                • September 11, 2017 at 8:28 pm
                                                                Maureen038
                                                                Participant

                                                                  Congratulations Celeste and thanks so much for staying on the board and helping so many of us!!!! You are truly an amazing person!!!❤️

                                                                  Maureen

                                                                • September 19, 2017 at 2:01 pm
                                                                jenny22
                                                                Participant

                                                                  Celeste- I havent been on the boards quite as much lately, but was SO happy to see your post….

                                                                  Great news…with mnay thanks for everything you do here for so many!.

                                                                  Wishing you a long life of continued good health!

                                                                  jenny

                                                                  • October 31, 2017 at 8:34 pm
                                                                  melanomafighter
                                                                  Participant

                                                                    Congrats to you!

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