5 years NED stage IV – no longer needing medical onco. :)
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5 years NED stage IV – no longer needing medical onco. :)

› Forums › General Melanoma Community › 5 years NED stage IV – no longer needing medical onco. :)

  • Post
    • March 18, 2015 at 10:05 am
    Kim K
    Participant

    So I was supposed to fly to Oahu tomorrow to see my medical oncologist.  Last visit 1 year ago had a discussion regarding my concerns about my cumulative radiation exposure (at least 9 PET/CT, 5 or more chest CTs, multiple chest x-rays – lost count etc.).  At what point do we drop scans?

    In my case I had indolent disease.  8 years after stage IIA became stage IV with a small lung met and even smaller muscle met.  Removed lung tumor and underwent IL-2.  Complete responder with a durable remission…….  Based on recent follow ups of past IL-2 complete responders both my surgical & medical onc. have finally accepted I will probably continue with my durable remission.

    Only now what to do…..

    I called yesterday and since no scans were ordered asked what was the point of taking an entire day, flying to Oahu, spending over $300 on airfare, another $100 or so to catch a cab, to basically say I am still doing well…..  

    I just had several blood tests & chest x-ray as part of my pre-op stuff for ACL surgery, all good.

    With my Dr.'s blessing, he agreed I could be followed by my surgical oncologist who flies to the Big Island 2-4 times a year to see patients.  My surgical oncologist said I should still be seen by someone, but as to what testing, lab work and for how long, neither of them had an answer.  They are going to talk to each other about it.

    The funny part is both feel I will never hear from mel again, but neither wants to discharge me forever – LOL.  I am at peace not doing any more scans at this point.  Perhaps it is worth it just to give those guys hope that some of us set the curve rather than live by it……

    It feels good to have graduated from seeing them.  I think now it will only be annual visits +/- blood work with my surgical onc.  I can stay at home to get that done which also helps a great deal.

    Just updating for whoever was interested.  Glad the day finally came 🙂

Viewing 8 reply threads
  • Replies
      • March 18, 2015 at 10:06 am
      Kim K
      Participant

      BTW – it is me, Kim K.  I hate the automatic anon reply……

        • March 18, 2015 at 11:09 am
        dodgedh2
        Participant

        I am NED Stage 4 (6-1/2 years now. My oncologist also released me after 5 years to be monitored by my PC. It's very nerve racking. I did recently have 5 masses removed, all showed to be benign. It helps that if I have any concern or symtom at all, it is immediatly addressed due to my history. I consider it another phase of adjustment in my melanoma journey through life.

        • March 20, 2015 at 10:56 am
        JerryfromFauq
        Participant

        dodgedh2, what was yoour treatment/sequence of treatments?  Was it only the  surgery and gamma knife mentioned in your profile? 

           i hope you have a GREAT PC.  i was almost dead from the care (or laack ther of ) from my EX- Gp.

         

         

         

         

        • March 20, 2015 at 10:56 am
        JerryfromFauq
        Participant

        dodgedh2, what was yoour treatment/sequence of treatments?  Was it only the  surgery and gamma knife mentioned in your profile? 

           i hope you have a GREAT PC.  i was almost dead from the care (or laack ther of ) from my EX- Gp.

         

         

         

         

        • March 20, 2015 at 10:56 am
        JerryfromFauq
        Participant

        dodgedh2, what was yoour treatment/sequence of treatments?  Was it only the  surgery and gamma knife mentioned in your profile? 

           i hope you have a GREAT PC.  i was almost dead from the care (or laack ther of ) from my EX- Gp.

         

         

         

         

        • March 18, 2015 at 11:09 am
        dodgedh2
        Participant

        I am NED Stage 4 (6-1/2 years now. My oncologist also released me after 5 years to be monitored by my PC. It's very nerve racking. I did recently have 5 masses removed, all showed to be benign. It helps that if I have any concern or symtom at all, it is immediatly addressed due to my history. I consider it another phase of adjustment in my melanoma journey through life.

        • March 18, 2015 at 11:09 am
        dodgedh2
        Participant

        I am NED Stage 4 (6-1/2 years now. My oncologist also released me after 5 years to be monitored by my PC. It's very nerve racking. I did recently have 5 masses removed, all showed to be benign. It helps that if I have any concern or symtom at all, it is immediatly addressed due to my history. I consider it another phase of adjustment in my melanoma journey through life.

        • March 18, 2015 at 2:30 pm
        Janner
        Participant

        Yeah Kim!  Congrats on 5 years!  Hope the girlies are doing well, too!

        • March 18, 2015 at 2:30 pm
        Janner
        Participant

        Yeah Kim!  Congrats on 5 years!  Hope the girlies are doing well, too!

        • March 18, 2015 at 2:30 pm
        Janner
        Participant

        Yeah Kim!  Congrats on 5 years!  Hope the girlies are doing well, too!

        • March 19, 2015 at 7:15 am
        Hawaii Bob
        Participant

        Great news and a hearty congrats Kim !  I'm still at Stage IIA ….. now 6 1/2 years NED….. You helped me out quite a bit when I was a newby back in August 2008 (primary on bottom of my toe)…..

         

        Hawaii Bob (but now living on the Mainland)

        • March 19, 2015 at 7:15 am
        Hawaii Bob
        Participant

        Great news and a hearty congrats Kim !  I'm still at Stage IIA ….. now 6 1/2 years NED….. You helped me out quite a bit when I was a newby back in August 2008 (primary on bottom of my toe)…..

         

        Hawaii Bob (but now living on the Mainland)

        • March 19, 2015 at 8:06 am
        Kim K
        Participant

        Yes, I remember you well.  Thanks again for the card & gift when I had my lung surgery.  Has it been that long?  Congrats for you as well.  Too bad you had to move…..

        Aloha,

        Kim

        • March 19, 2015 at 8:06 am
        Kim K
        Participant

        Yes, I remember you well.  Thanks again for the card & gift when I had my lung surgery.  Has it been that long?  Congrats for you as well.  Too bad you had to move…..

        Aloha,

        Kim

        • March 19, 2015 at 8:06 am
        Kim K
        Participant

        Yes, I remember you well.  Thanks again for the card & gift when I had my lung surgery.  Has it been that long?  Congrats for you as well.  Too bad you had to move…..

        Aloha,

        Kim

        • March 20, 2015 at 10:57 am
        JerryfromFauq
        Participant

        Bob, where are you now.  Grat top hear fro  youagoin.

         

        • March 20, 2015 at 10:57 am
        JerryfromFauq
        Participant

        Bob, where are you now.  Grat top hear fro  youagoin.

         

        • March 20, 2015 at 10:57 am
        JerryfromFauq
        Participant

        Bob, where are you now.  Grat top hear fro  youagoin.

         

        • March 19, 2015 at 7:15 am
        Hawaii Bob
        Participant

        Great news and a hearty congrats Kim !  I'm still at Stage IIA ….. now 6 1/2 years NED….. You helped me out quite a bit when I was a newby back in August 2008 (primary on bottom of my toe)…..

         

        Hawaii Bob (but now living on the Mainland)

      • March 18, 2015 at 10:06 am
      Kim K
      Participant

      BTW – it is me, Kim K.  I hate the automatic anon reply……

      • March 18, 2015 at 10:06 am
      Kim K
      Participant

      BTW – it is me, Kim K.  I hate the automatic anon reply……

      • March 18, 2015 at 5:06 pm
      Randy437
      Participant

      I am stage IV 5 1/2 years NED.  Clean scan yesterday, but my onc doesn't want to turn me lose yet.  Previous mets to brain, each lung and small intestine. 

        • March 18, 2015 at 5:27 pm
        rosa1
        Participant

        Randy437, what treatments have you had to get rid of your mets?

        • March 19, 2015 at 11:04 am
        Randy437
        Participant

        All of my mets were surgically removed.  The brain met was followed up with Gamma Knife.  I was also in a vaccine trial at UVA – had one met post trial.

        • March 19, 2015 at 11:04 am
        Randy437
        Participant

        All of my mets were surgically removed.  The brain met was followed up with Gamma Knife.  I was also in a vaccine trial at UVA – had one met post trial.

        • March 20, 2015 at 11:01 am
        JerryfromFauq
        Participant

        Your report sounds good for Dr Slingluffs vaccine trials.  is ee Dr Weiss nest week.

        • March 20, 2015 at 11:01 am
        JerryfromFauq
        Participant

        Your report sounds good for Dr Slingluffs vaccine trials.  is ee Dr Weiss nest week.

        • March 20, 2015 at 11:01 am
        JerryfromFauq
        Participant

        Your report sounds good for Dr Slingluffs vaccine trials.  is ee Dr Weiss nest week.

        • March 19, 2015 at 11:04 am
        Randy437
        Participant

        All of my mets were surgically removed.  The brain met was followed up with Gamma Knife.  I was also in a vaccine trial at UVA – had one met post trial.

        • March 18, 2015 at 5:27 pm
        rosa1
        Participant

        Randy437, what treatments have you had to get rid of your mets?

        • March 18, 2015 at 5:27 pm
        rosa1
        Participant

        Randy437, what treatments have you had to get rid of your mets?

      • March 18, 2015 at 5:06 pm
      Randy437
      Participant

      I am stage IV 5 1/2 years NED.  Clean scan yesterday, but my onc doesn't want to turn me lose yet.  Previous mets to brain, each lung and small intestine. 

      • March 18, 2015 at 5:06 pm
      Randy437
      Participant

      I am stage IV 5 1/2 years NED.  Clean scan yesterday, but my onc doesn't want to turn me lose yet.  Previous mets to brain, each lung and small intestine. 

      • March 20, 2015 at 11:07 am
      JerryfromFauq
      Participant

      YEs Kim.I am still posting your and Janes il-2 info to people all over the internet.  Grat to hear from you agaoin.. isnpt it geat to hear the words *Believed to to aacatually CURED!  w nevere expedted it in the pst did we?  Everything thea I have read in the ppppppast fiive years have stag=ed that they 9MElanoma  speialists Oncologist have never seen anyone that was a complete responder to IL-2 and have kept a complete response for thirty comsecutijve months has ever been seen to have a recurrence of melanoma.

        • March 20, 2015 at 11:09 am
        JerryfromFauq
        Participant

        PS, I'm sending your post to Jane.

         

        • March 20, 2015 at 11:09 am
        JerryfromFauq
        Participant

        PS, I'm sending your post to Jane.

         

        • March 20, 2015 at 11:09 am
        JerryfromFauq
        Participant

        PS, I'm sending your post to Jane.

         

        • March 20, 2015 at 11:09 am
        JerryfromFauq
        Participant

        PS, I'm sending your post to Jane.

         

        • March 20, 2015 at 1:52 pm
        Brendan
        Participant

        Great news Kim!!  Thanks for sharing  

        • March 20, 2015 at 1:52 pm
        Brendan
        Participant

        Great news Kim!!  Thanks for sharing  

        • March 20, 2015 at 1:52 pm
        Brendan
        Participant

        Great news Kim!!  Thanks for sharing  

        • March 20, 2015 at 11:09 am
        JerryfromFauq
        Participant

        PS, I'm sending your post to Jane.

         

        • March 20, 2015 at 11:09 am
        JerryfromFauq
        Participant

        PS, I'm sending your post to Jane.

         

      • March 20, 2015 at 11:07 am
      JerryfromFauq
      Participant

      YEs Kim.I am still posting your and Janes il-2 info to people all over the internet.  Grat to hear from you agaoin.. isnpt it geat to hear the words *Believed to to aacatually CURED!  w nevere expedted it in the pst did we?  Everything thea I have read in the ppppppast fiive years have stag=ed that they 9MElanoma  speialists Oncologist have never seen anyone that was a complete responder to IL-2 and have kept a complete response for thirty comsecutijve months has ever been seen to have a recurrence of melanoma.

      • March 20, 2015 at 11:07 am
      JerryfromFauq
      Participant

      YEs Kim.I am still posting your and Janes il-2 info to people all over the internet.  Grat to hear from you agaoin.. isnpt it geat to hear the words *Believed to to aacatually CURED!  w nevere expedted it in the pst did we?  Everything thea I have read in the ppppppast fiive years have stag=ed that they 9MElanoma  speialists Oncologist have never seen anyone that was a complete responder to IL-2 and have kept a complete response for thirty comsecutijve months has ever been seen to have a recurrence of melanoma.

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