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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

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