Finally NED – Never, Ever Give Up!
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Finally NED – Never, Ever Give Up!

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

  • Post
    • January 22, 2019 at 2:33 pm
    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
      • January 22, 2019 at 2:49 pm
      sing123
      Participant

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

      • January 22, 2019 at 2:51 pm
      sister of patient
      Participant

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

      Barb

      • January 22, 2019 at 2:51 pm
      rosa1
      Participant

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

      Rosa

        • January 22, 2019 at 3:34 pm
        chrispl1974
        Participant

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

      • January 22, 2019 at 3:32 pm
      Coragirl
      Participant

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

      • January 22, 2019 at 3:56 pm
      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
      • January 22, 2019 at 5:16 pm
      GeoTony
      Participant

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

      • January 22, 2019 at 6:18 pm
      MarkR
      Participant

      That’s brilliant news – congratulations!!

      • January 22, 2019 at 6:28 pm
      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!

      • January 22, 2019 at 7:22 pm
      Bubbles
      Participant

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

      • January 22, 2019 at 8:56 pm
      ed williams
      Participant

      Happy for you and your husband Ann!!!!

      • January 22, 2019 at 10:24 pm
      BillB
      Participant

      Congrats! Fantastic news.

      • January 22, 2019 at 10:24 pm
      Hukill
      Participant

      woohoo!!!!!!!

      • January 23, 2019 at 1:26 am
      Casitas1
      Participant
      Yes!!!
      • January 23, 2019 at 1:31 am
      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.

        • January 23, 2019 at 1:27 pm
        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

      • January 24, 2019 at 2:31 pm
      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

        • January 24, 2019 at 2:32 pm
        MelMel
        Participant

        goals*

      • January 26, 2019 at 3:31 pm
      SOLE
      Participant

      Simply amazing! NED forever!

      • January 26, 2019 at 4:34 pm
      Dympsd
      Participant

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

Viewing 16 reply threads
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