NIH ACT update.
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NIH ACT update.

› Forums › General Melanoma Community › NIH ACT update.

  • Post
    • September 3, 2011 at 2:21 pm
    himynameiskevin
    Participant

    Well, I just got back from the NIH for my monthly scans and it turns out all the tumors they're tracking in my lungs are still stable and/or possibly a tiny bit smaller. Except for one, unfortunately, In my left lung (I don't know if that's their left or my left) They think and hope that this one that appears to be growing is just being defiant of the therapy for reasons we don't quite understand and hope that the others will continue to shrink and stay stable for a long time to come.

    Well, I just got back from the NIH for my monthly scans and it turns out all the tumors they're tracking in my lungs are still stable and/or possibly a tiny bit smaller. Except for one, unfortunately, In my left lung (I don't know if that's their left or my left) They think and hope that this one that appears to be growing is just being defiant of the therapy for reasons we don't quite understand and hope that the others will continue to shrink and stay stable for a long time to come.

    So they want me back in 4 weeks, where I will get another CT and PETscan. If the scan shows it's still the only one growing, then the next day they're growing to do surgery on my lung and remove it manually. Hopefully with small incisions, a small instrument with a camera on it and minimal downtime if I lucky. If the scans show more than the one growing, then the ACT I think will have run it course, and there will be no surgery, but hopefully other possible options.

    Strange times when you find yourself hoping for lung surgery. 😉

    We'll see, you know, maybe there'll be some unexplainable miracle and the thing will just disappear. Maybe everything will, and they'll just send me home with a congratulatory handshake. They say anything is possible right?

    Anyway, that's my update, overall I'm doing real good, still working and living as normal as I ever did. We'll see what happens in a few weeks. I'll let you all know.

    Thanks for the ongoing concern and support.
    -Kevin

Viewing 17 reply threads
  • Replies
      • September 3, 2011 at 2:57 pm
      wgalinat
      Participant
      You are in good hands pal. I’ve been there and I’m still here so the best of luck to you. Plenty of rest and a positive attitude !! Warren G
      • September 3, 2011 at 2:57 pm
      wgalinat
      Participant
      You are in good hands pal. I’ve been there and I’m still here so the best of luck to you. Plenty of rest and a positive attitude !! Warren G
      • September 3, 2011 at 6:31 pm
      Rocco
      Participant

      Hi Kevin,

      If you do have to go the surgical route, there are many of us here who have been through it.  I've had VATS (small incisions, camera, etc) twice (right and later left lungs) with very minimal downtime involved (back to work (desk job) in a week) – of course everyone is different, etc.  If they need to go with the larger incision, thorocotomy, then the recovery time is longer.  Either way many of us have been through it.  I got great responses when I reached out to this board just  prior to my first VATS – very reassuring.

      Hang in there!

      Rocco, IV since 2005. Ipi responder.

      • September 3, 2011 at 6:31 pm
      Rocco
      Participant

      Hi Kevin,

      If you do have to go the surgical route, there are many of us here who have been through it.  I've had VATS (small incisions, camera, etc) twice (right and later left lungs) with very minimal downtime involved (back to work (desk job) in a week) – of course everyone is different, etc.  If they need to go with the larger incision, thorocotomy, then the recovery time is longer.  Either way many of us have been through it.  I got great responses when I reached out to this board just  prior to my first VATS – very reassuring.

      Hang in there!

      Rocco, IV since 2005. Ipi responder.

      • September 3, 2011 at 7:31 pm
      jag
      Participant

      Kevin,

      Hoping you get an unexplainable miracle buddy.

      Fingers crossed.

      John

      • September 3, 2011 at 7:31 pm
      jag
      Participant

      Kevin,

      Hoping you get an unexplainable miracle buddy.

      Fingers crossed.

      John

      • September 3, 2011 at 9:04 pm
      Fen
      Participant

      Thanks for the update, Kevin.  I know many on the board are following your progress and keeping you in their prayers – include me in that bunch.

      Fen

      • September 3, 2011 at 9:04 pm
      Fen
      Participant

      Thanks for the update, Kevin.  I know many on the board are following your progress and keeping you in their prayers – include me in that bunch.

      Fen

      • September 4, 2011 at 2:18 am
      JerryfromFauq
      Participant

      Yes, this darn disease has made my hope for many things that I previously would have considered bad.  I thoroughly agree with the approach of removal of a growing tumor when the others are either staying stable or regressing.  Yes unexplained miracle do occur.  Very happy that yu to are able to continue living a good life.  From one point of view, melanoma is not totally winning as long as we can enjoy life.

      • September 4, 2011 at 2:18 am
      JerryfromFauq
      Participant

      Yes, this darn disease has made my hope for many things that I previously would have considered bad.  I thoroughly agree with the approach of removal of a growing tumor when the others are either staying stable or regressing.  Yes unexplained miracle do occur.  Very happy that yu to are able to continue living a good life.  From one point of view, melanoma is not totally winning as long as we can enjoy life.

      • September 4, 2011 at 2:45 am
      lhaley
      Participant

      Kevin,

      Thanks for the update. Overall it sounds pretty good, just that one tumor.  I'm hoping also that the lung tumor remains stable and gives you a break for awhile.

      Linda

      • September 4, 2011 at 2:45 am
      lhaley
      Participant

      Kevin,

      Thanks for the update. Overall it sounds pretty good, just that one tumor.  I'm hoping also that the lung tumor remains stable and gives you a break for awhile.

      Linda

      • September 5, 2011 at 1:38 am
      King
      Participant

      Kevin,

       

      Thanks for the update.  Keep that positive attitude.  And, yes, I agree…it's amazing the odd things that we hope for when dealing with melanoma.  One day at a time.

      Stay Strong
      King

      Stage IV 7/05  Liver mets

      • September 5, 2011 at 1:38 am
      King
      Participant

      Kevin,

       

      Thanks for the update.  Keep that positive attitude.  And, yes, I agree…it's amazing the odd things that we hope for when dealing with melanoma.  One day at a time.

      Stay Strong
      King

      Stage IV 7/05  Liver mets

      • September 5, 2011 at 2:36 pm
      Gwen in Maine
      Participant

      Thanks for the update, Kevin. Thinking good thoughts for you.

      Gwen in Maine

      • September 5, 2011 at 2:36 pm
      Gwen in Maine
      Participant

      Thanks for the update, Kevin. Thinking good thoughts for you.

      Gwen in Maine

      • September 6, 2011 at 12:11 am
      jax2007gxp
      Participant

      Hi Kevin,

      I'm fairly new to the board, so I am reading your story for the first time.  It amazes me everyday how young some of us are.  Thank you for sharing your update.  I will add you to my prayer list…miracles happen!

      If you don't mind me asking, how did you end up treating at NIH?

      Jacki

      • September 6, 2011 at 12:11 am
      jax2007gxp
      Participant

      Hi Kevin,

      I'm fairly new to the board, so I am reading your story for the first time.  It amazes me everyday how young some of us are.  Thank you for sharing your update.  I will add you to my prayer list…miracles happen!

      If you don't mind me asking, how did you end up treating at NIH?

      Jacki

        • September 10, 2011 at 12:23 pm
        Lisa13
        Participant

        Attitude is everything Kevin – keep up the positive vibes!  I wish you a lung surgery in the near future. Anything is possible!

        Lisa – Stage 4

        • September 10, 2011 at 12:23 pm
        Lisa13
        Participant

        Attitude is everything Kevin – keep up the positive vibes!  I wish you a lung surgery in the near future. Anything is possible!

        Lisa – Stage 4

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