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NEAD

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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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