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  • Post
    • December 10, 2016 at 11:13 am
    Mat
    Participant

      As many of my fellow Stage IVers know, I started on ipi/nivo in January 2016 after a somewhat rough 2015.  I had a PET-CT yesterday and am really grateful for the results.  "No evidence of FDG avid malignancy."  There are no sweeter words.  To me, this is "my" functional equivalent of "no evidence of active disease".  I'll never be "NED" because I started with a heavy tumor burden.  CTs will continue to show what is either scar tissue or lesions being held at bay by T-cells.  Of course, this (my stable disease) may be temporary–and I remind myself regularly that this is likely the case.  However, I'll take it for the moment.  As I recently said to someone, in a sense, all of my prayers (related to Stage IV melanoma) have been answered–I've been blessed with the strength to meet this challenge (note: this waxes and wanes on a daily basis depending on the day and circumstances–I'm no pillar of strength) and with a great medical team to help me manage the challenge.  I'm looking forward to experiencing another holiday season with my wife, kids, family and friends, particularly when I've not been promised one.  My heart goes out to those Stage IVers that are struggling with present challenges, including Josh, Paul, Brian and Gary.  I've been there and it sucks.  You do your best to meet the challenge and press on.

    Viewing 59 reply threads
    • Replies
        • December 10, 2016 at 12:31 pm
        youngann
        Participant

          That's very good news, Mat, long may it stay this way for you. Merry Christmas!

          Ann

          • December 10, 2016 at 12:31 pm
          youngann
          Participant

            That's very good news, Mat, long may it stay this way for you. Merry Christmas!

            Ann

            • December 10, 2016 at 12:31 pm
            youngann
            Participant

              That's very good news, Mat, long may it stay this way for you. Merry Christmas!

              Ann

              • December 10, 2016 at 12:57 pm
              BrianP
              Participant

                So happy to hear your update Mat.  Congrats.  Needed to hear some good news right now. 

                Brian

                • December 10, 2016 at 12:57 pm
                BrianP
                Participant

                  So happy to hear your update Mat.  Congrats.  Needed to hear some good news right now. 

                  Brian

                  • December 10, 2016 at 12:57 pm
                  BrianP
                  Participant

                    So happy to hear your update Mat.  Congrats.  Needed to hear some good news right now. 

                    Brian

                    • December 10, 2016 at 1:41 pm
                    keepthefaith11
                    Participant
                      So happy to hear Mat. Enjoy you holiday season with your loved ones!

                      Annie

                      • December 10, 2016 at 1:41 pm
                      keepthefaith11
                      Participant
                        So happy to hear Mat. Enjoy you holiday season with your loved ones!

                        Annie

                        • December 10, 2016 at 1:41 pm
                        keepthefaith11
                        Participant
                          So happy to hear Mat. Enjoy you holiday season with your loved ones!

                          Annie

                          • December 10, 2016 at 1:54 pm
                          Bubbles
                          Participant

                            Oh, Mat!  That is a beautiful Christmas gift to us all.  Enjoy your holiday with your loved ones!  Here's to many more!!! love, c

                            • December 10, 2016 at 1:54 pm
                            Bubbles
                            Participant

                              Oh, Mat!  That is a beautiful Christmas gift to us all.  Enjoy your holiday with your loved ones!  Here's to many more!!! love, c

                              • December 10, 2016 at 1:54 pm
                              Bubbles
                              Participant

                                Oh, Mat!  That is a beautiful Christmas gift to us all.  Enjoy your holiday with your loved ones!  Here's to many more!!! love, c

                                • December 10, 2016 at 2:12 pm
                                debwray
                                Participant

                                  Hi Mat,

                                  Thanks for posting some good news. It is helpful to see this from a stage iv patient with liver mets as i have been recently diagnosed stage iv  liver involvement and the prognosis seems extra gloomy..

                                  Bet the waiting for the swcan results was tough- and that your Christmas will be all the sweeter for the good news.

                                  Best Wishes,

                                  Deb

                                  • December 10, 2016 at 2:12 pm
                                  debwray
                                  Participant

                                    Hi Mat,

                                    Thanks for posting some good news. It is helpful to see this from a stage iv patient with liver mets as i have been recently diagnosed stage iv  liver involvement and the prognosis seems extra gloomy..

                                    Bet the waiting for the swcan results was tough- and that your Christmas will be all the sweeter for the good news.

                                    Best Wishes,

                                    Deb

                                    • December 10, 2016 at 2:12 pm
                                    debwray
                                    Participant

                                      Hi Mat,

                                      Thanks for posting some good news. It is helpful to see this from a stage iv patient with liver mets as i have been recently diagnosed stage iv  liver involvement and the prognosis seems extra gloomy..

                                      Bet the waiting for the swcan results was tough- and that your Christmas will be all the sweeter for the good news.

                                      Best Wishes,

                                      Deb

                                      • December 10, 2016 at 2:14 pm
                                      gregor913
                                      Participant
                                        Thats great news . Especially right before the holidays. Hold your family a little tighter today and praise God. Greg
                                        • December 10, 2016 at 2:14 pm
                                        gregor913
                                        Participant
                                          Thats great news . Especially right before the holidays. Hold your family a little tighter today and praise God. Greg
                                          • December 10, 2016 at 2:14 pm
                                          gregor913
                                          Participant
                                            Thats great news . Especially right before the holidays. Hold your family a little tighter today and praise God. Greg
                                            • December 10, 2016 at 5:33 pm
                                            Polymath
                                            Participant

                                              Hi Mat,

                                              My words just cannot sum up how happy I am for you.  And your words…may I just copy and paste them someday?  Perhaps after my surgery because they sum up my feelings so precisely, I could never say them myself better.  Merriest of Christmas' to you and your family as the gift of life, is the most precious gift one can receive.

                                              Gary

                                              • December 10, 2016 at 5:33 pm
                                              Polymath
                                              Participant

                                                Hi Mat,

                                                My words just cannot sum up how happy I am for you.  And your words…may I just copy and paste them someday?  Perhaps after my surgery because they sum up my feelings so precisely, I could never say them myself better.  Merriest of Christmas' to you and your family as the gift of life, is the most precious gift one can receive.

                                                Gary

                                                • December 10, 2016 at 5:33 pm
                                                Polymath
                                                Participant

                                                  Hi Mat,

                                                  My words just cannot sum up how happy I am for you.  And your words…may I just copy and paste them someday?  Perhaps after my surgery because they sum up my feelings so precisely, I could never say them myself better.  Merriest of Christmas' to you and your family as the gift of life, is the most precious gift one can receive.

                                                  Gary

                                                  • December 10, 2016 at 7:49 pm
                                                  Patrisa
                                                  Participant

                                                    Mat,

                                                    I'm sooo happy for you, enjoy your NEAD status, may it last forever!

                                                    Happy holidays!

                                                    Patrisa

                                                    • December 10, 2016 at 7:49 pm
                                                    Patrisa
                                                    Participant

                                                      Mat,

                                                      I'm sooo happy for you, enjoy your NEAD status, may it last forever!

                                                      Happy holidays!

                                                      Patrisa

                                                      • December 10, 2016 at 7:49 pm
                                                      Patrisa
                                                      Participant

                                                        Mat,

                                                        I'm sooo happy for you, enjoy your NEAD status, may it last forever!

                                                        Happy holidays!

                                                        Patrisa

                                                        • December 10, 2016 at 8:23 pm
                                                        jvictoria
                                                        Participant

                                                          Merry Christmas for a fellow Stage IV

                                                          • December 10, 2016 at 8:23 pm
                                                          jvictoria
                                                          Participant

                                                            Merry Christmas for a fellow Stage IV

                                                            • December 10, 2016 at 8:23 pm
                                                            jvictoria
                                                            Participant

                                                              Merry Christmas for a fellow Stage IV

                                                              • December 11, 2016 at 12:19 am
                                                              _Paul_
                                                              Participant

                                                                That is sweet news Mat! You may not consider yourself to be a pillar of strength, but you are one tough cookie. You are also a great example to me of what is possible in the war against this stupid disease, not just the biological struggle, but the mental battle as well.

                                                                I hate this disease so much, that it is very distasteful to me to allow it to rob me of the ability to enjoy my time in this universe. But it is a lot easier to just type out some words than to live them day after day, I take strength and encouragement from your posts and it makes it easier for me to try to live up to my goal.

                                                                – Paul

                                                                • December 11, 2016 at 12:19 am
                                                                _Paul_
                                                                Participant

                                                                  That is sweet news Mat! You may not consider yourself to be a pillar of strength, but you are one tough cookie. You are also a great example to me of what is possible in the war against this stupid disease, not just the biological struggle, but the mental battle as well.

                                                                  I hate this disease so much, that it is very distasteful to me to allow it to rob me of the ability to enjoy my time in this universe. But it is a lot easier to just type out some words than to live them day after day, I take strength and encouragement from your posts and it makes it easier for me to try to live up to my goal.

                                                                  – Paul

                                                                  • December 11, 2016 at 12:19 am
                                                                  _Paul_
                                                                  Participant

                                                                    That is sweet news Mat! You may not consider yourself to be a pillar of strength, but you are one tough cookie. You are also a great example to me of what is possible in the war against this stupid disease, not just the biological struggle, but the mental battle as well.

                                                                    I hate this disease so much, that it is very distasteful to me to allow it to rob me of the ability to enjoy my time in this universe. But it is a lot easier to just type out some words than to live them day after day, I take strength and encouragement from your posts and it makes it easier for me to try to live up to my goal.

                                                                    – Paul

                                                                    • December 11, 2016 at 2:05 am
                                                                    Casitas1
                                                                    Participant
                                                                      Keep it up!
                                                                      • December 11, 2016 at 2:05 am
                                                                      Casitas1
                                                                      Participant
                                                                        Keep it up!
                                                                        • December 11, 2016 at 2:05 am
                                                                        Casitas1
                                                                        Participant
                                                                          Keep it up!
                                                                          • December 11, 2016 at 3:16 am
                                                                          jennunicorn
                                                                          Participant

                                                                            What a great Christmas present! 

                                                                            Cheers to a lifetime of NEAD for you Mat!

                                                                            Merry Christmas to you and your family,

                                                                            • December 11, 2016 at 3:16 am
                                                                            jennunicorn
                                                                            Participant

                                                                              What a great Christmas present! 

                                                                              Cheers to a lifetime of NEAD for you Mat!

                                                                              Merry Christmas to you and your family,

                                                                              • December 11, 2016 at 3:16 am
                                                                              jennunicorn
                                                                              Participant

                                                                                What a great Christmas present! 

                                                                                Cheers to a lifetime of NEAD for you Mat!

                                                                                Merry Christmas to you and your family,

                                                                                • December 11, 2016 at 4:01 am
                                                                                Mamapegela
                                                                                Participant

                                                                                  That is wonderful news.  Thank you for sharing and spreading hope.  

                                                                                  Peggy

                                                                                  • December 11, 2016 at 4:01 am
                                                                                  Mamapegela
                                                                                  Participant

                                                                                    That is wonderful news.  Thank you for sharing and spreading hope.  

                                                                                    Peggy

                                                                                    • December 11, 2016 at 4:01 am
                                                                                    Mamapegela
                                                                                    Participant

                                                                                      That is wonderful news.  Thank you for sharing and spreading hope.  

                                                                                      Peggy

                                                                                      • December 11, 2016 at 7:07 am
                                                                                      stars
                                                                                      Participant

                                                                                        Fantastic news, friend… thank you for sharing, your words have touched alot of people.

                                                                                        • December 11, 2016 at 7:07 am
                                                                                        stars
                                                                                        Participant

                                                                                          Fantastic news, friend… thank you for sharing, your words have touched alot of people.

                                                                                          • December 11, 2016 at 7:07 am
                                                                                          stars
                                                                                          Participant

                                                                                            Fantastic news, friend… thank you for sharing, your words have touched alot of people.

                                                                                            • December 11, 2016 at 2:18 pm
                                                                                            JoshF
                                                                                            Participant

                                                                                              Mat- this is just great news. I know how hard you've battled so to hear this is uplifting and gives hope to us all especially to me as I'm dealing with a significant tumor burden and been kicked for a good part of 2016. Enjoy your holidays and I pray that this is your new norm that continues…you certainly deserve this NEAD status. So happy for you brother.

                                                                                              Josh

                                                                                              • December 11, 2016 at 2:18 pm
                                                                                              JoshF
                                                                                              Participant

                                                                                                Mat- this is just great news. I know how hard you've battled so to hear this is uplifting and gives hope to us all especially to me as I'm dealing with a significant tumor burden and been kicked for a good part of 2016. Enjoy your holidays and I pray that this is your new norm that continues…you certainly deserve this NEAD status. So happy for you brother.

                                                                                                Josh

                                                                                                • December 11, 2016 at 2:18 pm
                                                                                                JoshF
                                                                                                Participant

                                                                                                  Mat- this is just great news. I know how hard you've battled so to hear this is uplifting and gives hope to us all especially to me as I'm dealing with a significant tumor burden and been kicked for a good part of 2016. Enjoy your holidays and I pray that this is your new norm that continues…you certainly deserve this NEAD status. So happy for you brother.

                                                                                                  Josh

                                                                                                  • December 11, 2016 at 6:11 pm
                                                                                                  AshleyS
                                                                                                  Participant

                                                                                                    Great news, May! Enjoy your family!!!!!

                                                                                                      • December 11, 2016 at 6:11 pm
                                                                                                      AshleyS
                                                                                                      Participant

                                                                                                        Ugh….I obviously meant MAT!

                                                                                                        • December 11, 2016 at 6:11 pm
                                                                                                        AshleyS
                                                                                                        Participant

                                                                                                          Ugh….I obviously meant MAT!

                                                                                                          • December 11, 2016 at 6:11 pm
                                                                                                          AshleyS
                                                                                                          Participant

                                                                                                            Ugh….I obviously meant MAT!

                                                                                                          • December 11, 2016 at 6:11 pm
                                                                                                          AshleyS
                                                                                                          Participant

                                                                                                            Great news, May! Enjoy your family!!!!!

                                                                                                            • December 11, 2016 at 6:11 pm
                                                                                                            AshleyS
                                                                                                            Participant

                                                                                                              Great news, May! Enjoy your family!!!!!

                                                                                                              • December 11, 2016 at 7:00 pm
                                                                                                              Scooby123
                                                                                                              Participant

                                                                                                                So pleased for you Matt, enjoy a holiday with your family. Nice to have positive news for us stage IV .

                                                                                                                scooby x

                                                                                                                • December 11, 2016 at 7:00 pm
                                                                                                                Scooby123
                                                                                                                Participant

                                                                                                                  So pleased for you Matt, enjoy a holiday with your family. Nice to have positive news for us stage IV .

                                                                                                                  scooby x

                                                                                                                  • December 11, 2016 at 7:00 pm
                                                                                                                  Scooby123
                                                                                                                  Participant

                                                                                                                    So pleased for you Matt, enjoy a holiday with your family. Nice to have positive news for us stage IV .

                                                                                                                    scooby x

                                                                                                                    • December 12, 2016 at 8:03 pm
                                                                                                                    Jubes
                                                                                                                    Participant

                                                                                                                      So happy for you Mat!! Hope you have a very happy Xmas. Your family will be over the moon!

                                                                                                                      Anne-Louise 

                                                                                                                      • December 12, 2016 at 8:03 pm
                                                                                                                      Jubes
                                                                                                                      Participant

                                                                                                                        So happy for you Mat!! Hope you have a very happy Xmas. Your family will be over the moon!

                                                                                                                        Anne-Louise 

                                                                                                                        • December 12, 2016 at 8:03 pm
                                                                                                                        Jubes
                                                                                                                        Participant

                                                                                                                          So happy for you Mat!! Hope you have a very happy Xmas. Your family will be over the moon!

                                                                                                                          Anne-Louise 

                                                                                                                          • December 12, 2016 at 9:01 pm
                                                                                                                          Terrified
                                                                                                                          Participant

                                                                                                                            Pretty new to these boards, but it is nice to see positive news! So glad for you.

                                                                                                                            Judy

                                                                                                                            • December 12, 2016 at 9:01 pm
                                                                                                                            Terrified
                                                                                                                            Participant

                                                                                                                              Pretty new to these boards, but it is nice to see positive news! So glad for you.

                                                                                                                              Judy

                                                                                                                              • December 12, 2016 at 9:01 pm
                                                                                                                              Terrified
                                                                                                                              Participant

                                                                                                                                Pretty new to these boards, but it is nice to see positive news! So glad for you.

                                                                                                                                Judy

                                                                                                                                • December 13, 2016 at 1:48 pm
                                                                                                                                jenny22
                                                                                                                                Participant

                                                                                                                                  Mat-

                                                                                                                                  Such wonderful news for you and YOUR WHOLE FAMILY.

                                                                                                                                  Enjoy the good news and may it last for a long time to come.

                                                                                                                                  Best,

                                                                                                                                  Jenny

                                                                                                                                  • December 13, 2016 at 1:48 pm
                                                                                                                                  jenny22
                                                                                                                                  Participant

                                                                                                                                    Mat-

                                                                                                                                    Such wonderful news for you and YOUR WHOLE FAMILY.

                                                                                                                                    Enjoy the good news and may it last for a long time to come.

                                                                                                                                    Best,

                                                                                                                                    Jenny

                                                                                                                                    • December 13, 2016 at 1:48 pm
                                                                                                                                    jenny22
                                                                                                                                    Participant

                                                                                                                                      Mat-

                                                                                                                                      Such wonderful news for you and YOUR WHOLE FAMILY.

                                                                                                                                      Enjoy the good news and may it last for a long time to come.

                                                                                                                                      Best,

                                                                                                                                      Jenny

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