Update
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Update

› Forums › General Melanoma Community › Update

  • Post
    • February 18, 2016 at 12:05 am
    Julie in SoCal
    Participant

    Greetings Friends!

    Start the music, jump on a table and join me in the happy dance! I am once again officially celebrating NERD (no evidence of recurrant disease) status! WOOHOOOOO!

    I have one remaining intransit met that has not completely gone, but it hasn't grown either.  On Pembro it grew and then started melting away, but some very tiny bit remains.  My Rock Star Doc thinks it's scar tissue or dead mel cells.  I'm good with that. 

    I'm almost at a year of Pembro, and we're talking about extending this at least another 6 months, but aside from fatigue and really achy joints, I do fairly well on it.  I'll talk iwth my doc to see if we can address the achy joints.  I need to be able to move more than I am currently. But I'm sure we can figure something out.

    Wishing you all the best!

    Shalom,

    Julie

     

Viewing 35 reply threads
  • Replies
      • February 18, 2016 at 12:34 am
      Fen
      Participant

      Goose-bumpy good news!  Celebrate!  Have you tried really gentle yoga for the achy joints?  Maybe exercise in a pool?  Whatever you work out I wish you luck and continued NED.

      Fen

      • February 18, 2016 at 12:34 am
      Fen
      Participant

      Goose-bumpy good news!  Celebrate!  Have you tried really gentle yoga for the achy joints?  Maybe exercise in a pool?  Whatever you work out I wish you luck and continued NED.

      Fen

      • February 18, 2016 at 12:34 am
      Fen
      Participant

      Goose-bumpy good news!  Celebrate!  Have you tried really gentle yoga for the achy joints?  Maybe exercise in a pool?  Whatever you work out I wish you luck and continued NED.

      Fen

      • February 18, 2016 at 12:57 am
      jamieth29
      Participant
      Great news Julie congrats.
      • February 18, 2016 at 12:57 am
      jamieth29
      Participant
      Great news Julie congrats.
        • February 18, 2016 at 1:09 am
        vivian
        Participant

        So happy for you, Julie!  

        Lear

        • February 18, 2016 at 1:09 am
        vivian
        Participant

        So happy for you, Julie!  

        Lear

        • February 18, 2016 at 1:09 am
        vivian
        Participant

        So happy for you, Julie!  

        Lear

      • February 18, 2016 at 12:57 am
      jamieth29
      Participant
      Great news Julie congrats.
      • February 18, 2016 at 1:26 am
      DZnDef
      Participant

      Excellent news, Julie!  I am definitely doing the happy dance for you!  I will be seeing Rock Star Doc myself on the 29th.  So glad he's keeping you NERD!  I would love to be NERD too!

      Cheers!

      • February 18, 2016 at 1:26 am
      DZnDef
      Participant

      Excellent news, Julie!  I am definitely doing the happy dance for you!  I will be seeing Rock Star Doc myself on the 29th.  So glad he's keeping you NERD!  I would love to be NERD too!

      Cheers!

      • February 18, 2016 at 1:26 am
      DZnDef
      Participant

      Excellent news, Julie!  I am definitely doing the happy dance for you!  I will be seeing Rock Star Doc myself on the 29th.  So glad he's keeping you NERD!  I would love to be NERD too!

      Cheers!

      • February 18, 2016 at 1:55 am
      SABKLYN
      Participant

      Hooray!

      • February 18, 2016 at 1:55 am
      SABKLYN
      Participant

      Hooray!

      • February 18, 2016 at 1:55 am
      SABKLYN
      Participant

      Hooray!

      • February 18, 2016 at 5:04 am
      _Paul_
      Participant

      Woohoo! That is a fantastic outcome Julie, very happy for you! Rock on NERDs!

      – Paul

      • February 18, 2016 at 5:04 am
      _Paul_
      Participant

      Woohoo! That is a fantastic outcome Julie, very happy for you! Rock on NERDs!

      – Paul

      • February 18, 2016 at 5:04 am
      _Paul_
      Participant

      Woohoo! That is a fantastic outcome Julie, very happy for you! Rock on NERDs!

      – Paul

      • February 18, 2016 at 11:32 am
      Scooby123
      Participant

      well done julie hope you get this message having problems posting. so pleased for you

      scooby123

      • February 18, 2016 at 11:32 am
      Scooby123
      Participant

      well done julie hope you get this message having problems posting. so pleased for you

      scooby123

      • February 18, 2016 at 11:32 am
      Scooby123
      Participant

      well done julie hope you get this message having problems posting. so pleased for you

      scooby123

      • February 18, 2016 at 2:50 pm
      Bubbles
      Participant

      That is wonderful news, Julie! Hopefully your tiredness and pain will improve soon! Celeste

      • February 18, 2016 at 2:50 pm
      Bubbles
      Participant

      That is wonderful news, Julie! Hopefully your tiredness and pain will improve soon! Celeste

      • February 18, 2016 at 2:50 pm
      Bubbles
      Participant

      That is wonderful news, Julie! Hopefully your tiredness and pain will improve soon! Celeste

      • February 18, 2016 at 2:58 pm
      jenny22
      Participant

      Hi Julie-

      SO thrilled to  read your good news…..Hoping thee pmebro gets a little easier, but regardless, you cant beat this news!

      Many Congrats!!!!!

      Jenny

      • February 18, 2016 at 2:58 pm
      jenny22
      Participant

      Hi Julie-

      SO thrilled to  read your good news…..Hoping thee pmebro gets a little easier, but regardless, you cant beat this news!

      Many Congrats!!!!!

      Jenny

      • February 18, 2016 at 2:58 pm
      jenny22
      Participant

      Hi Julie-

      SO thrilled to  read your good news…..Hoping thee pmebro gets a little easier, but regardless, you cant beat this news!

      Many Congrats!!!!!

      Jenny

      • February 18, 2016 at 5:08 pm
      Swanee
      Participant

      Dancing and jumping up and down with you Julie…BIG Congratulations!  You've been at this game for quite some time and it's really good news to hear this latest update!  I've always admired your fighting spirit that never gives up despite some very challenging, debilitating and grueling times!  You've set an example for us to follow, never, never give up and always find the silver lining no matter what you are going through!  Wishing you continued success and permenent NED status!  

      Swanee

      • February 18, 2016 at 5:08 pm
      Swanee
      Participant

      Dancing and jumping up and down with you Julie…BIG Congratulations!  You've been at this game for quite some time and it's really good news to hear this latest update!  I've always admired your fighting spirit that never gives up despite some very challenging, debilitating and grueling times!  You've set an example for us to follow, never, never give up and always find the silver lining no matter what you are going through!  Wishing you continued success and permenent NED status!  

      Swanee

      • February 18, 2016 at 5:08 pm
      Swanee
      Participant

      Dancing and jumping up and down with you Julie…BIG Congratulations!  You've been at this game for quite some time and it's really good news to hear this latest update!  I've always admired your fighting spirit that never gives up despite some very challenging, debilitating and grueling times!  You've set an example for us to follow, never, never give up and always find the silver lining no matter what you are going through!  Wishing you continued success and permenent NED status!  

      Swanee

      • February 18, 2016 at 10:58 pm
      BrianP
      Participant

      Congrats Julie.  Hope you get some joint pain relief soon.

      Brian

      • February 18, 2016 at 10:58 pm
      BrianP
      Participant

      Congrats Julie.  Hope you get some joint pain relief soon.

      Brian

      • February 18, 2016 at 10:58 pm
      BrianP
      Participant

      Congrats Julie.  Hope you get some joint pain relief soon.

      Brian

      • February 20, 2016 at 3:41 pm
      triciad
      Participant

      Julie,

      I love a good dance, and this one has a great "beat!"  I am so happy for you and I wish you continued success…without the joint pain.

      I just read your list of therapies.  I never knew we were on such a similar path.  I've done WLE, SNB, LND, HD-INF, LD-INF, GM-CSF, IPI with more GM-CSF, PEMBRO, and now Tafinlar with MEK. 

      I hope we can someday do a happy dance for me, too!

      God bless and enjoy your good fortune!

      Tricia

      • February 20, 2016 at 3:41 pm
      triciad
      Participant

      Julie,

      I love a good dance, and this one has a great "beat!"  I am so happy for you and I wish you continued success…without the joint pain.

      I just read your list of therapies.  I never knew we were on such a similar path.  I've done WLE, SNB, LND, HD-INF, LD-INF, GM-CSF, IPI with more GM-CSF, PEMBRO, and now Tafinlar with MEK. 

      I hope we can someday do a happy dance for me, too!

      God bless and enjoy your good fortune!

      Tricia

      • February 20, 2016 at 3:41 pm
      triciad
      Participant

      Julie,

      I love a good dance, and this one has a great "beat!"  I am so happy for you and I wish you continued success…without the joint pain.

      I just read your list of therapies.  I never knew we were on such a similar path.  I've done WLE, SNB, LND, HD-INF, LD-INF, GM-CSF, IPI with more GM-CSF, PEMBRO, and now Tafinlar with MEK. 

      I hope we can someday do a happy dance for me, too!

      God bless and enjoy your good fortune!

      Tricia

      • February 20, 2016 at 5:08 pm
      KimW
      Participant

      Hi Julie!!

      Reading this post just made my day!!!! I'm so thrilled for you and this gives new hope to all! I know it's not been an easy journey but you have made amazing results happen! Doing a big happy dance for you now! Woohoo!!!! Thanks for the wonderful update! 

      Kim

      • February 20, 2016 at 5:08 pm
      KimW
      Participant

      Hi Julie!!

      Reading this post just made my day!!!! I'm so thrilled for you and this gives new hope to all! I know it's not been an easy journey but you have made amazing results happen! Doing a big happy dance for you now! Woohoo!!!! Thanks for the wonderful update! 

      Kim

      • February 20, 2016 at 5:08 pm
      KimW
      Participant

      Hi Julie!!

      Reading this post just made my day!!!! I'm so thrilled for you and this gives new hope to all! I know it's not been an easy journey but you have made amazing results happen! Doing a big happy dance for you now! Woohoo!!!! Thanks for the wonderful update! 

      Kim

Viewing 35 reply threads
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