18 months NED!
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18 months NED!

› Forums › General Melanoma Community › 18 months NED!

  • Post
    • August 6, 2012 at 11:53 pm
    Vermont_Donna
    Participant

    Hi everyone,

    Hi everyone,

      I havent posted in a while…have been busy working and enjoying life. I am now 18 months NED!! In July 2012 I had my quarterly oncology checkup, PET/CT scan, and today had a followup ultrasound of a specific "hot" spot on my leg that didnt show anything to biopsy. So this is the longest I have been NED since i was diagnosed with stage 3a melanoma cancer in Septermber 2006. For those who arent familiar with my history, you can peruse my profile but I have had many treatments to my leg (where the melanoma has been) including interferon, leukine, radiation twice, isolated limb perfusion and ipilimumab (Yervoy). Yervoy was my last treatment that I did, and I had four doses, 3mg/kg. I had relatively few side effects. I have moderate lymphadema and neuropathy in my right leg and wear a compression stocking and do maunual lymph drainage daily.

     I just wanted to share my good news and wish everyone well and the success (NED) that I have finally achieved. Jimmy B says if I stay NED three years then maybe I can say "cured"?? Jimmy…I am halfway there!!!!!!

    Hugs to all,

    Vermont_Donna, stage 3a

     

Viewing 20 reply threads
  • Replies
      • August 7, 2012 at 12:17 am
      aldakota22
      Participant

      Always love the positive posts.See more and more over time spent here.Will pray that you surpass  the 18 months to be NED by many many years.Beat the Beast.  Al

      • August 7, 2012 at 12:17 am
      aldakota22
      Participant

      Always love the positive posts.See more and more over time spent here.Will pray that you surpass  the 18 months to be NED by many many years.Beat the Beast.  Al

      • August 7, 2012 at 12:17 am
      aldakota22
      Participant

      Always love the positive posts.See more and more over time spent here.Will pray that you surpass  the 18 months to be NED by many many years.Beat the Beast.  Al

      • August 7, 2012 at 12:23 am
      Rocco
      Participant

      Hi Donna,

      Great to see you post and to read that you're on the go with work and all.

      Congrats on hitting 18 months NED – great feeling isn't it!?!

      Keep smiling and doing the happy dance!

      -Rocco (in NH)

       

      • August 7, 2012 at 12:23 am
      Rocco
      Participant

      Hi Donna,

      Great to see you post and to read that you're on the go with work and all.

      Congrats on hitting 18 months NED – great feeling isn't it!?!

      Keep smiling and doing the happy dance!

      -Rocco (in NH)

       

      • August 7, 2012 at 12:23 am
      Rocco
      Participant

      Hi Donna,

      Great to see you post and to read that you're on the go with work and all.

      Congrats on hitting 18 months NED – great feeling isn't it!?!

      Keep smiling and doing the happy dance!

      -Rocco (in NH)

       

      • August 7, 2012 at 12:38 am
      LynnLuc
      Participant

      Its awesome news!! I have been NED 2 years 4 months…my onc says he would probably say at the end of my trial if I am still NED it would likewise say I am "cured" however he also said the microcells will still be floating around, but my own immune system would be keeping them in check…so I guess that means I need to stay off steroids and live a healthy lifestyle to keep it up and running.

      • August 7, 2012 at 12:38 am
      LynnLuc
      Participant

      Its awesome news!! I have been NED 2 years 4 months…my onc says he would probably say at the end of my trial if I am still NED it would likewise say I am "cured" however he also said the microcells will still be floating around, but my own immune system would be keeping them in check…so I guess that means I need to stay off steroids and live a healthy lifestyle to keep it up and running.

      • August 7, 2012 at 12:38 am
      LynnLuc
      Participant

      Its awesome news!! I have been NED 2 years 4 months…my onc says he would probably say at the end of my trial if I am still NED it would likewise say I am "cured" however he also said the microcells will still be floating around, but my own immune system would be keeping them in check…so I guess that means I need to stay off steroids and live a healthy lifestyle to keep it up and running.

      • August 7, 2012 at 2:27 am
      gabsound
      Participant
      Hi Donna ,

      You have been my inspiration since I started on this board! I’m so happy you continue to have success with Yervoy.

      Congrats,

      Julie in Las Vegas

        • August 7, 2012 at 7:34 pm
        NYKaren
        Participant

        Donna, I'm so happy for you.

        You've been an inspiration to me as well!

        Wishing you NED forever,

        karen

        • August 7, 2012 at 7:34 pm
        NYKaren
        Participant

        Donna, I'm so happy for you.

        You've been an inspiration to me as well!

        Wishing you NED forever,

        karen

        • August 7, 2012 at 7:34 pm
        NYKaren
        Participant

        Donna, I'm so happy for you.

        You've been an inspiration to me as well!

        Wishing you NED forever,

        karen

      • August 7, 2012 at 2:27 am
      gabsound
      Participant
      Hi Donna ,

      You have been my inspiration since I started on this board! I’m so happy you continue to have success with Yervoy.

      Congrats,

      Julie in Las Vegas

      • August 7, 2012 at 2:27 am
      gabsound
      Participant
      Hi Donna ,

      You have been my inspiration since I started on this board! I’m so happy you continue to have success with Yervoy.

      Congrats,

      Julie in Las Vegas

      • August 7, 2012 at 10:17 pm
      triciad
      Participant

      Donna –

      You have made my night with your fantastic news.  I can't believe all that you have been through and to hear the word "cured" is absolutely magnificent!  I will be counting the days for that post to come!!!

      I read that you did Leukine.  What was your experience with it?  Would you recommend it?  I just came from the doctor and after this recurrence she is suggesting I do Leukine.  What do you think?

      Congratulations again on your wonderful news!!!!

      Tricia

        • August 7, 2012 at 11:11 pm
        Vermont_Donna
        Participant

        HI,

        I did not have a very hard time with the Leukine…just big itchy welts or hives at the injection site (my stomach area) and I iced the area first, and I think took benedryl and something else…tylenol? Its a small needle and you have to mix the leukine with sterile water and draw it up. Not hard to learn and do. I worked the whole time. Gave myself injections three times a week? its been so long now I forget all the details….you can look at my profile. I had a reoccurence after 7 months. I look at it as it "bought me more time" and then I did the next treatment. All my treatments I dont consider as "failed"…they bought me time until I did the Yervoy and that has bought me 18 months of NED!

          Please feel free to email me anytime!

        Hugs,

        Donna

        • August 8, 2012 at 1:15 pm
        triciad
        Participant

        Donna,

        Thanks so much for the information.  My new oncologist wants me to do the Leukine, my old one says it's like snakeskin  oil.  I trust them both, so it is a hard decision.  I did a full year of interferon, so  injections three times a week will seem familiar.  Thanks again for your help, and congratulations on your NED status…forever!

        Tricia

        • August 8, 2012 at 1:15 pm
        triciad
        Participant

        Donna,

        Thanks so much for the information.  My new oncologist wants me to do the Leukine, my old one says it's like snakeskin  oil.  I trust them both, so it is a hard decision.  I did a full year of interferon, so  injections three times a week will seem familiar.  Thanks again for your help, and congratulations on your NED status…forever!

        Tricia

        • August 8, 2012 at 1:15 pm
        triciad
        Participant

        Donna,

        Thanks so much for the information.  My new oncologist wants me to do the Leukine, my old one says it's like snakeskin  oil.  I trust them both, so it is a hard decision.  I did a full year of interferon, so  injections three times a week will seem familiar.  Thanks again for your help, and congratulations on your NED status…forever!

        Tricia

        • August 7, 2012 at 11:11 pm
        Vermont_Donna
        Participant

        HI,

        I did not have a very hard time with the Leukine…just big itchy welts or hives at the injection site (my stomach area) and I iced the area first, and I think took benedryl and something else…tylenol? Its a small needle and you have to mix the leukine with sterile water and draw it up. Not hard to learn and do. I worked the whole time. Gave myself injections three times a week? its been so long now I forget all the details….you can look at my profile. I had a reoccurence after 7 months. I look at it as it "bought me more time" and then I did the next treatment. All my treatments I dont consider as "failed"…they bought me time until I did the Yervoy and that has bought me 18 months of NED!

          Please feel free to email me anytime!

        Hugs,

        Donna

        • August 7, 2012 at 11:11 pm
        Vermont_Donna
        Participant

        HI,

        I did not have a very hard time with the Leukine…just big itchy welts or hives at the injection site (my stomach area) and I iced the area first, and I think took benedryl and something else…tylenol? Its a small needle and you have to mix the leukine with sterile water and draw it up. Not hard to learn and do. I worked the whole time. Gave myself injections three times a week? its been so long now I forget all the details….you can look at my profile. I had a reoccurence after 7 months. I look at it as it "bought me more time" and then I did the next treatment. All my treatments I dont consider as "failed"…they bought me time until I did the Yervoy and that has bought me 18 months of NED!

          Please feel free to email me anytime!

        Hugs,

        Donna

      • August 7, 2012 at 10:17 pm
      triciad
      Participant

      Donna –

      You have made my night with your fantastic news.  I can't believe all that you have been through and to hear the word "cured" is absolutely magnificent!  I will be counting the days for that post to come!!!

      I read that you did Leukine.  What was your experience with it?  Would you recommend it?  I just came from the doctor and after this recurrence she is suggesting I do Leukine.  What do you think?

      Congratulations again on your wonderful news!!!!

      Tricia

      • August 7, 2012 at 10:17 pm
      triciad
      Participant

      Donna –

      You have made my night with your fantastic news.  I can't believe all that you have been through and to hear the word "cured" is absolutely magnificent!  I will be counting the days for that post to come!!!

      I read that you did Leukine.  What was your experience with it?  Would you recommend it?  I just came from the doctor and after this recurrence she is suggesting I do Leukine.  What do you think?

      Congratulations again on your wonderful news!!!!

      Tricia

      • August 8, 2012 at 10:10 pm
      King
      Participant

      Donna, 

       

      Congratulations!  This is great news!  I'm sure your message has given hope to others.

       

      Stay Strong

      King

      Stage IV  7/05  Liver mets

      • August 8, 2012 at 10:10 pm
      King
      Participant

      Donna, 

       

      Congratulations!  This is great news!  I'm sure your message has given hope to others.

       

      Stay Strong

      King

      Stage IV  7/05  Liver mets

      • August 8, 2012 at 10:10 pm
      King
      Participant

      Donna, 

       

      Congratulations!  This is great news!  I'm sure your message has given hope to others.

       

      Stay Strong

      King

      Stage IV  7/05  Liver mets

      • August 10, 2012 at 3:18 pm
      KevinM
      Participant

      Awesome news Donna!!!

      congrats and make sure to celebrate big time!!
      Kevin

      • August 10, 2012 at 3:18 pm
      KevinM
      Participant

      Awesome news Donna!!!

      congrats and make sure to celebrate big time!!
      Kevin

      • August 10, 2012 at 3:18 pm
      KevinM
      Participant

      Awesome news Donna!!!

      congrats and make sure to celebrate big time!!
      Kevin

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