Hang onto Hope! Still NED at Stage IV
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Hang onto Hope! Still NED at Stage IV

› Forums › General Melanoma Community › Hang onto Hope! Still NED at Stage IV

  • Post
    • September 28, 2011 at 8:33 pm
    King
    Participant

    I know we all need to read some good news to balance the bad and sad news that is a reality on MPIP.

    I am thrilled to report that I just returned from Moffitt and I remain NED at Stage IV.  My profile is up to date and I'll give a brief summary when I sign off this post.

    I know we all need to read some good news to balance the bad and sad news that is a reality on MPIP.

    I am thrilled to report that I just returned from Moffitt and I remain NED at Stage IV.  My profile is up to date and I'll give a brief summary when I sign off this post.

    Yes, I've had ups and downs like so many of us.  Yes, I have some discomfort from the extensive surgeries.  I have challenges with maintaining my weight.  Right now I have a rib fracture that was diagnosed on the scan.  But I am NED.  I wish there was a secret to share.  I know many of you are deep in battle and have to be so discouraged.

    It was 6 years ago yesterday that I had my liver resection…70% of my liver was removed.  I was told at that time that if the surgery was not a success (or any of the very limited treatment options back then) that I had 4-6 months to live.

    And I now can go 4 months until my next set of scans.

    Thinking of all of you.  If I can help in any way, please email me.  Thank you so much for all the support you've given and knowledge you've shared over the 7 years that I now have been on MPIP.

    Stay Strong

    King/Kathie

    March 2004  Stage III Unknown primary

    April 2004 Left groin lymph node dissection…..NED

    May 2004-April 2005 Interferon

    July 2005 Liver mets (3.3 cm. Grew to 4.5 cm at time of surgery)

    September 2005 Liver resection/Gall Bladder removal….NED

    December 2005-November 2006  Phase II Clinical Trial of GM-CSF

    March 2008  Peri-Pancreatic Tumor; sub q on left hip/buttock

    April 2008 Extensive surgery to remove both areas of mets….NED

Viewing 43 reply threads
  • Replies
      • September 28, 2011 at 9:12 pm
      momof2kids
      Participant

      This is great to hear, I am still so down about being diagnosed directly at Stage IV (Brain, Liver & Lung), and to hear people who keep surviving and are NED is what I hope to become!

      I have wondered about surgery to remove spots from my lung & liver (basically 1 spot in each), but I do know that if the surgery didn't work on the liver, I'd be basically destroying my chances, since we can't get transplants.

      I'm just so worried about the future (I'm in my 1st treatment Yervoy now), and just hoping it shrinks the few spots I currently have.  Just want years and years to spend with my 2 young kids!

      • September 28, 2011 at 9:12 pm
      momof2kids
      Participant

      This is great to hear, I am still so down about being diagnosed directly at Stage IV (Brain, Liver & Lung), and to hear people who keep surviving and are NED is what I hope to become!

      I have wondered about surgery to remove spots from my lung & liver (basically 1 spot in each), but I do know that if the surgery didn't work on the liver, I'd be basically destroying my chances, since we can't get transplants.

      I'm just so worried about the future (I'm in my 1st treatment Yervoy now), and just hoping it shrinks the few spots I currently have.  Just want years and years to spend with my 2 young kids!

      • September 28, 2011 at 9:15 pm
      KevinM
      Participant

      Kathie,

      WOW….I am thrilled to read such GREAT news!! Made my day! I hope you have a great celebration planned!!! BTW…I hope you didn't hurt your rib jumping off of the Sox bandwagon!!

      all my best!

      Kevin

      • September 28, 2011 at 9:15 pm
      KevinM
      Participant

      Kathie,

      WOW….I am thrilled to read such GREAT news!! Made my day! I hope you have a great celebration planned!!! BTW…I hope you didn't hurt your rib jumping off of the Sox bandwagon!!

      all my best!

      Kevin

      • September 28, 2011 at 9:24 pm
      mom3girlsFL
      Participant

      Hi Kathie!

      I was so excited to read your post!  You are truly amazing!  I remember when I first found this board  and you were one of the names I "followed".  I was, at the time, stage 1 with practically no reason to believe I would be affected by mel ever again.  I stopped visiting, just lurking every now and then.  Today I am back after having found a lump in my groin and several surgeries 2010.  I had a PET last monday and am following up with a CT tomorrow for a spot behind my knee.  Pretty sure it's nothing but better to be safe than sorry with this crazy disease.  I hope to be able to reclaim my NED status by next week.

      I also consulted Dr Weber when all this started last year (I am north of Orlando).  He advised me to NOT do interferon and, against his judgement (I have an auto immune disease too and he said interferon would "kill" me – or was it that he said any doc that would put me on interferon should have their head examined…yeah, that was it!), I worked with my current onc to do it.  Of course I had a recurrence and more surgery.  I had been NED since Sept of last year.  A clear CT tomorrow will confirm one year NED.

      Anyway, enough of my personal history…I just wanted to say CONGRATS!!!  Lots of scary stuff you've been through on this journey.  You've come a long way!

      Smiles,

      Laurie

      • September 28, 2011 at 9:24 pm
      mom3girlsFL
      Participant

      Hi Kathie!

      I was so excited to read your post!  You are truly amazing!  I remember when I first found this board  and you were one of the names I "followed".  I was, at the time, stage 1 with practically no reason to believe I would be affected by mel ever again.  I stopped visiting, just lurking every now and then.  Today I am back after having found a lump in my groin and several surgeries 2010.  I had a PET last monday and am following up with a CT tomorrow for a spot behind my knee.  Pretty sure it's nothing but better to be safe than sorry with this crazy disease.  I hope to be able to reclaim my NED status by next week.

      I also consulted Dr Weber when all this started last year (I am north of Orlando).  He advised me to NOT do interferon and, against his judgement (I have an auto immune disease too and he said interferon would "kill" me – or was it that he said any doc that would put me on interferon should have their head examined…yeah, that was it!), I worked with my current onc to do it.  Of course I had a recurrence and more surgery.  I had been NED since Sept of last year.  A clear CT tomorrow will confirm one year NED.

      Anyway, enough of my personal history…I just wanted to say CONGRATS!!!  Lots of scary stuff you've been through on this journey.  You've come a long way!

      Smiles,

      Laurie

      • September 28, 2011 at 9:28 pm
      jax2007gxp
      Participant

      Absolutely awesome!!!  Looking forward to reading you are 4 MORE months NED in four more months!!!  wink

      Jacki

      • September 28, 2011 at 9:28 pm
      jax2007gxp
      Participant

      Absolutely awesome!!!  Looking forward to reading you are 4 MORE months NED in four more months!!!  wink

      Jacki

      • September 28, 2011 at 9:40 pm
      MichaelFL
      Participant

      Has it been 6 years now? Wow!!!!

      Seems like it has been that long since I have seen you last , but I know it has been over two years now since we met up at Dean's funeral.

      Hope you and the hubby are well, and your NED status continues forever.

      Keep it up, Michael

      • September 28, 2011 at 9:40 pm
      MichaelFL
      Participant

      Has it been 6 years now? Wow!!!!

      Seems like it has been that long since I have seen you last , but I know it has been over two years now since we met up at Dean's funeral.

      Hope you and the hubby are well, and your NED status continues forever.

      Keep it up, Michael

        • September 28, 2011 at 11:06 pm
        triciad
        Participant

        Michael,

        It's wonderful to see you on the board again.  I've missed your excellent advice and encouragement…please stay!!!!!!

        Tricia

        • September 28, 2011 at 11:06 pm
        triciad
        Participant

        Michael,

        It's wonderful to see you on the board again.  I've missed your excellent advice and encouragement…please stay!!!!!!

        Tricia

      • September 28, 2011 at 9:59 pm
      JerryfromFauq
      Participant

      Love to hear this.  You help so many and give hope to even so many more!

      • September 28, 2011 at 9:59 pm
      JerryfromFauq
      Participant

      Love to hear this.  You help so many and give hope to even so many more!

      • September 28, 2011 at 10:02 pm
      Gene_S
      Participant

      That is wonderful news.  Glad to read the good news.

      • September 28, 2011 at 10:02 pm
      Gene_S
      Participant

      That is wonderful news.  Glad to read the good news.

      • September 28, 2011 at 10:02 pm
      lhaley
      Participant

      Kathie,

      YEAH!!!  I'm so happy for you! 

      I was in Hendersonville today. Do you still spend time in Ashville?  

      Your news is music to all of us.

      Linda

      • September 28, 2011 at 10:02 pm
      lhaley
      Participant

      Kathie,

      YEAH!!!  I'm so happy for you! 

      I was in Hendersonville today. Do you still spend time in Ashville?  

      Your news is music to all of us.

      Linda

      • September 28, 2011 at 10:56 pm
      triciad
      Participant

      Kathie,

      This is such wonderful news!  I just had my last radiation treatment this morning and I thought I was happy then.  Now…I am elated.  Thank you so much for all of your support and advice over the years.  I wish you many, many more years being NED.  You are a true inspiration to us all.  Go celebrate!

      Tricia

      P.S.  I used to live in Palm Harbor!

      • September 28, 2011 at 10:56 pm
      triciad
      Participant

      Kathie,

      This is such wonderful news!  I just had my last radiation treatment this morning and I thought I was happy then.  Now…I am elated.  Thank you so much for all of your support and advice over the years.  I wish you many, many more years being NED.  You are a true inspiration to us all.  Go celebrate!

      Tricia

      P.S.  I used to live in Palm Harbor!

      • September 28, 2011 at 11:27 pm
      Janner
      Participant

      Woohoo, Kathie!  Glad to see you posting.  Miss seeing you in chat, but glad you're doing well!

      Best wishes,

      Janner

      • September 28, 2011 at 11:27 pm
      Janner
      Participant

      Woohoo, Kathie!  Glad to see you posting.  Miss seeing you in chat, but glad you're doing well!

      Best wishes,

      Janner

      • September 28, 2011 at 11:33 pm
      Jim M.
      Participant

      Hi Kathie,

       I've been thinking about you. This is truly amazing news! It is an honor to know you eventhough it's been some time since I saw you (at Dean's golf tournament). Keep up the NED status for a very long time!

      God bless,

       Jim M.

      • September 28, 2011 at 11:33 pm
      Jim M.
      Participant

      Hi Kathie,

       I've been thinking about you. This is truly amazing news! It is an honor to know you eventhough it's been some time since I saw you (at Dean's golf tournament). Keep up the NED status for a very long time!

      God bless,

       Jim M.

      • September 29, 2011 at 12:23 am
      MaryD
      Participant

      You go Kathie – our prayers are answered again!  As always, you are an inspiration to many and I feel so fortunate to know you as a dear friend.

      Celebrate!

      Mary

       

      • September 29, 2011 at 12:23 am
      MaryD
      Participant

      You go Kathie – our prayers are answered again!  As always, you are an inspiration to many and I feel so fortunate to know you as a dear friend.

      Celebrate!

      Mary

       

      • September 29, 2011 at 12:23 am
      MaryD
      Participant

      You go Kathie – our prayers are answered again!  As always, you are an inspiration to many and I feel so fortunate to know you as a dear friend.

      Celebrate!

      Mary

       

      • September 29, 2011 at 12:23 am
      MaryD
      Participant

      You go Kathie – our prayers are answered again!  As always, you are an inspiration to many and I feel so fortunate to know you as a dear friend.

      Celebrate!

      Mary

       

      • September 29, 2011 at 1:22 am
      KellieSue
      Participant

      Kathie, so glad to hear of your continued NED status!

      Such an inspiration for us other Stage IV's to come and read this!

      It is possible to defy the odds and live with Stage IV! Awesome!

      Kellie(from Iowa) Stage IV, on B-RAF

      • September 29, 2011 at 1:22 am
      KellieSue
      Participant

      Kathie, so glad to hear of your continued NED status!

      Such an inspiration for us other Stage IV's to come and read this!

      It is possible to defy the odds and live with Stage IV! Awesome!

      Kellie(from Iowa) Stage IV, on B-RAF

      • September 29, 2011 at 1:44 am
      KatyWI
      Participant

      That is….fantabulousic!

      Katy

      • September 29, 2011 at 1:44 am
      KatyWI
      Participant

      That is….fantabulousic!

      Katy

      • September 29, 2011 at 2:11 am
      akls
      Participant

      Kathie,

       

      So thrilled to hear this!!!  You are such an inspiration to all of us.  Congratulations!

       

      Amy S. in Michigan

      • September 29, 2011 at 2:11 am
      akls
      Participant

      Kathie,

       

      So thrilled to hear this!!!  You are such an inspiration to all of us.  Congratulations!

       

      Amy S. in Michigan

      • September 29, 2011 at 2:47 am
      JudyinCA
      Participant

       

      Kathie,

      What excellent news!  From your history, you're obviously a trooper.  It just amazes me you warriors keep fighting and have such strength.  Congratulations!

      Judy Clifford (caregiver to husband stage IV, NED

      • September 29, 2011 at 2:47 am
      JudyinCA
      Participant

       

      Kathie,

      What excellent news!  From your history, you're obviously a trooper.  It just amazes me you warriors keep fighting and have such strength.  Congratulations!

      Judy Clifford (caregiver to husband stage IV, NED

      • September 29, 2011 at 11:12 am
      Rebecca and Bob
      Participant

      Kathie,

       

      Great news and it gives us such inspiration. We hope to be like you. Celebrate.

      Rebecca and Bob

      • September 29, 2011 at 11:12 am
      Rebecca and Bob
      Participant

      Kathie,

       

      Great news and it gives us such inspiration. We hope to be like you. Celebrate.

      Rebecca and Bob

        • September 29, 2011 at 6:20 pm
        Erinmay22
        Participant

        That's so great to hear!  It's so nice to hear some of the positive stories out there when we are always reminded about the bad news and how horrible this disease can be. 

        As someone who's a newbie Stage 4 (but currently NED) person it gives us hope!

        Thanks for sharing.

        Erin

        • September 29, 2011 at 6:20 pm
        Erinmay22
        Participant

        That's so great to hear!  It's so nice to hear some of the positive stories out there when we are always reminded about the bad news and how horrible this disease can be. 

        As someone who's a newbie Stage 4 (but currently NED) person it gives us hope!

        Thanks for sharing.

        Erin

      • September 29, 2011 at 9:53 pm
      DebbieH
      Participant

      You are a remarkable woman and I'm so glad I got to meet you and Tim.  May you remain NED forever Kathie and continue to give hope to so many others in here.

      Deb

      • September 29, 2011 at 9:53 pm
      DebbieH
      Participant

      You are a remarkable woman and I'm so glad I got to meet you and Tim.  May you remain NED forever Kathie and continue to give hope to so many others in here.

      Deb

      • September 29, 2011 at 10:28 pm
      Rocco
      Participant

      Hi Kathie,

      Absolutely thrilled for you!  Such marvelous news. Every 4 months for scans?!?!  That is fantastic!  Celebrate!!!!!!!!!!!

      -Rocco, IV sinc 2005, Ipi responder

      • September 29, 2011 at 10:28 pm
      Rocco
      Participant

      Hi Kathie,

      Absolutely thrilled for you!  Such marvelous news. Every 4 months for scans?!?!  That is fantastic!  Celebrate!!!!!!!!!!!

      -Rocco, IV sinc 2005, Ipi responder

      • September 30, 2011 at 3:32 am
      James from Sydney
      Participant

      Kathie, great news , you are a inspiration and a beacon for hope to all those battling this disease.

      best wishes

      James

      • September 30, 2011 at 3:32 am
      James from Sydney
      Participant

      Kathie, great news , you are a inspiration and a beacon for hope to all those battling this disease.

      best wishes

      James

        • September 30, 2011 at 12:57 pm
        King
        Participant

        Thank you all for your comments.  You are the best!  Hoping more and more people have positive responses as treatment options are increasing (but we still have a long way to go)

        Stay Strong
        King

        • September 30, 2011 at 12:57 pm
        King
        Participant

        Thank you all for your comments.  You are the best!  Hoping more and more people have positive responses as treatment options are increasing (but we still have a long way to go)

        Stay Strong
        King

      • October 1, 2011 at 5:04 pm
      Bill G
      Participant

      Great news, Kathie.  I don't post much any more, so glad I did today to hear the news from another oldtimer on the board.

      • October 1, 2011 at 5:04 pm
      Bill G
      Participant

      Great news, Kathie.  I don't post much any more, so glad I did today to hear the news from another oldtimer on the board.

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