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It’s official – NED
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It’s official – NED

› Forums › General Melanoma Community › It’s official – NED

  • Post
    • November 14, 2017 at 5:56 pm
    sister of patient
    Participant

      Hey all – Couldn't wait to share this news, though my sister Leisa had her first clear scan in July, Oct. 30 scan is the same – she is totally clear and the onc has finally said those precious little letters – N.E.D.!!! Yayyy!!!

      Have said it before but can't say it enough – thanks to so many on this board – you got us through it!!!!!

      Best always,

      Barb

    Viewing 8 reply threads
    • Replies
        • November 14, 2017 at 6:46 pm
        Cindyco
        Participant

          Congratulations! I just checked your history and your story is amazing.  Thank you for sharing. 

            • November 15, 2017 at 3:01 am
            sister of patient
            Participant

              Thank you Cindy! It is amazing – I think her story is an example of a "text book case" of how targeted and immunotherapies are supposed to work for BRAF+ people. I hope that one day all types of mel and their associated mutations respond the same way. Best wishes always for you and your mother!!!

              Barb

            • November 14, 2017 at 8:14 pm
            Nashvillian
            Participant

              What an Awesome story!!!

               

                • November 15, 2017 at 3:04 am
                sister of patient
                Participant

                  Thank you! 🙂  The treatment truly is "awesome and I wish you the best outcomes with yours!!

                  Barb

                • November 14, 2017 at 9:54 pm
                Scooby123
                Participant

                  That is great news so pleased for your sister, let's pray we all say NED one day.

                  Scooby❤️

                    • November 15, 2017 at 3:07 am
                    sister of patient
                    Participant

                      Yes, that is what I hope for too – NED for all!! Thank you Scooby – I hope that it's on its way to you!! Best always!

                      Barb

                    • November 14, 2017 at 11:12 pm
                    jennunicorn
                    Participant

                      This makes me SO HAPPY to hear!! Congrats to her and to YOU for being such an awesome sister to her!! Much love and many wishes for a forever NED status! 🙂

                        • November 15, 2017 at 3:30 am
                        sister of patient
                        Participant

                          Ahh … thank you Jenn!!! Leisa is truly awesome, a real trooper!! And though we had the clear scan in July, having her close-mouthed oncologist now say it, means everything!!!

                          It's our hope that NED forever is right there waiting for you too!!! Special thoughts and a big hug going out to you 🙂

                          Barb

                        • November 14, 2017 at 11:17 pm
                        Casitas1
                        Participant

                          Right on! Great to hear.  Good job you two!

                          Best, Paul

                            • November 15, 2017 at 3:41 am
                            sister of patient
                            Participant

                              Thank you Paul. It's actually pretty humbling … in alot of ways … We hope next summer, she will be in your shoes – a year in. You are truly a warrior!! Best always!

                              Barb

                            • November 15, 2017 at 3:05 pm
                            cancersnewnormal
                            Participant

                              I so enjoy reading the happy news! Thanks for sharing! Your sister has been through a PILE! Hopefully the mela-beast will stay at bay and allow her to focus on damage repairs now! Congrats on NED!

                                • November 15, 2017 at 7:10 pm
                                sister of patient
                                Participant

                                  Yes! On with damage repair (and regular Nivo still 'til next Spring). Thank you Niki, you are another true "warrior"!! Best, always!

                                  Barb

                                • November 15, 2017 at 5:52 pm
                                Bubbles
                                Participant

                                  Congrats!  Enjoy!!!! c

                                  • November 15, 2017 at 5:52 pm
                                  Sandi Conley
                                  Participant

                                    So happy for you both!  Where can I read your sister's story?  I am new here today.  Was in remission on Tafinlar and Mekinist, but now cancer has returned.  I'm pretty much lost.  Trying to find a clinical trial that would be good for me.

                                      • November 15, 2017 at 7:07 pm
                                      sister of patient
                                      Participant

                                        Hi Sandi – I'm so sorry you've had cause to seek out and join this forum but especially sorry to hear you've had a recurrence. You are in an excellent place though to arm yourself with facts and information and, hopefully, within a short time you'll feel a little less "lost" and more like you are on "solid ground." There is much to be hopeful for, great results from existing immunotherapies and many more new treatments in development and trial.

                                        I see you have already posted – that's great!! There are so many knowledgeable people on this board – those who have gone before – who will answer your questions and help to inform your decisions. It will help them to help you if you can complete your profile (account information) and bring anyone reading it right up to date on where you are at with mel and treatment. 

                                        My profile is actually my sister's, so you can read her history (or anyone else's, if you have an account and are logged in) by clicking on the user name beside the post title. If you've been on Taf/Mek and have responded, then there's no reason to think that immunotherapy may not also work for you.

                                        I wish you the best of outcomes moving forward with treatment!!

                                        Barb

                                        • November 15, 2017 at 7:08 pm
                                        Bubbles
                                        Participant

                                          If you click on the link that is the posters name you can read their bio if they have made one.

                                        • November 16, 2017 at 11:56 pm
                                        Jahendry12
                                        Participant

                                          Awesome, Awesome, Awesome!!! Thanks for sharing!

                                      Viewing 8 reply threads
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