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Finally NED – Never, Ever Give Up!

Forums General Melanoma Community Finally NED – Never, Ever Give Up!

  • Post
    marta010
    Participant

      After almost 7 years of treatment, my husband, Larry, finally has scans with no evidence of metastatic disease in his body or brain!!  He just finished his 14th Keytruda infusion and his doctor said if he maintains his NED status he can stop after another 12 months.  I never thought we would see this day!  He's had just about every available treatment since his diagnosis in March 2012 – Zelboraf, radiation, 5 brain gamma knife treatments, 3 craniotomies, dabrafanib, 2nd attempt at Keytruda, 9 months on a feeding tube, partial vision loss and numerous hospitlizations from treatment related side effects.  He is truly a miracle.  We are so grateful and hope his story will bring hope to others. NEVER GIVE UP.

      Take care and enjoy every day!

      Ann

    Viewing 16 reply threads
    • Replies
        sing123
        Participant

          Yay!!!! This is wonderful news. Thrilled for you both.

          sister of patient
          Participant

            That's just fabulous news!! Enjoy!! Best wishes to both of you!

            Barb

            rosa1
            Participant

              Wonderfurl news Ann! Hope and pray he'll be NED forever!

              Rosa

                chrispl1974
                Participant

                  Terrific news. May you enjoy many many years as a happy couple. 

                Coragirl
                Participant

                  Ann, I am so happy for you and your family. Thank you for sharing such wonderful news! 

                  Scooby123
                  Participant
                    So pleased for Larry and you. I have been battling since 2011, tumours liver, lungs, head and other areas of nodes. I have been given NED in December 2018. Had ippi, on Keydruda 22 rounds so far. Hope it continues and prayers for all to be NED.
                    SCOOBY X
                    GeoTony
                    Participant

                      superb news, that's  why we never give up the fight

                      MarkR
                      Participant

                        That’s brilliant news – congratulations!!

                        jbronicki
                        Participant

                          Wow, that is wonderful Ann!  So very happy for you and your husband.  Well done to you as his partner and cargiver through all this, you played a big part in getting through all this.  Celebration time!

                          Bubbles
                          Participant

                            Oh Ann!  You and Larry have had such a long and hard fought battle!!!  Wonderful news!  Congratulations indeed!!!  celeste

                            ed williams
                            Participant

                              Happy for you and your husband Ann!!!!

                              BillB
                              Participant

                                Congrats! Fantastic news.

                                Hukill
                                Participant

                                  woohoo!!!!!!!

                                  Casitas1
                                  Participant
                                    Yes!!!
                                    aldrichdesigner
                                    Participant
                                      Ann,

                                      Can you explain when you say 2nd Keytruda attempt?

                                      I’m currently out of options after only getting a partial response from Keytruda and went thru ipi/nivo as well already.

                                        marta010
                                        Participant

                                          Hi – during the first round of Keytruda treatments – maybe after #6 or #7, , my husband developed a severe brain edema, requiring brain surgery, and the team felt the keytruda could have caused it so we discontinued the infusions. We waited about a year and started again – this time after a differentl previously treated/gamma knifed brain met started to act up again.  He had another crainiotomy to remove this met followed by gamma knife to the resection cavity.  We felt we had to try Keytruda again as it seems the only treatment that could reach the brain.  Seems to have worked on keeping his brain clear and getting rid of the remaining body tumors. I hope you are able to find a treatment that works for you!

                                          Ann

                                        MelMel
                                        Participant

                                          Ann that is absolutely FANTASTIC!!! CONGRATULATIONS and just KEEP ROCKING ON!!!! you are such an inspiration to all of us still fighting to reach our golas. All the very best to your husband and wonderful supportive you!

                                          Melanie

                                            MelMel
                                            Participant

                                              goals*

                                            SOLE
                                            Participant

                                              Simply amazing! NED forever!

                                              Dympsd
                                              Participant

                                                Congratulations! This gives me so much hope. My husband is on similar path and we are grasping at all hope. Thank you

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