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Stages and stages

Forums General Melanoma Community Stages and stages

  • Post
    LynnLuc
    Participant

    I am stage 4 NED…I was told I would always be considered stage 4 and would not regress to lesser stage…is that true- even though I have no disease at this point? I was told it's the distance it travels and not how "bad" you are…Just wondering…anyone know?? 

    I am stage 4 NED…I was told I would always be considered stage 4 and would not regress to lesser stage…is that true- even though I have no disease at this point? I was told it's the distance it travels and not how "bad" you are…Just wondering…anyone know?? 

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      dian in spokane
      Participant

      Stage IV is determined by distant metastasis or spread to another organ besides the skin. Once you've reached that stage IV, there you stay, no matter what your status.

      But celebrating being NED is always wonderful, especially at stage IV, don't you agree?

      :)

      dian

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      dian in spokane
      Participant

      Stage IV is determined by distant metastasis or spread to another organ besides the skin. Once you've reached that stage IV, there you stay, no matter what your status.

      But celebrating being NED is always wonderful, especially at stage IV, don't you agree?

      :)

      dian

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      LynnLuc
      Participant

      Yes it is…but I would really like the nightmare to be over , you know..with bated breath we live, we wait, we hope…while I know it isn't possible…I want my life back the way it was…albeit boring and taken for granted…instead I hold my breath, for me, for my new found friends with stage 4…the PTSD without the ' post'…we all must suffer!

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      LynnLuc
      Participant

      Yes it is…but I would really like the nightmare to be over , you know..with bated breath we live, we wait, we hope…while I know it isn't possible…I want my life back the way it was…albeit boring and taken for granted…instead I hold my breath, for me, for my new found friends with stage 4…the PTSD without the ' post'…we all must suffer!

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        LynnLuc
        Participant

        PS….NED is really just a temporary state for most of us…I am not so niave to think it won't come back…it's just a matter of when…

        When I first had it removed when it was just a lil old freckle the docs said I had nothing to worry about…that clean margin is just another way of saying make the scar  look impressive!

        When it came back the second time in 4 years a little bigger and taller…they went a little deeper and wider and said take out those lymph nodes…which they did…said all clear….nothing to worry about…

        They didn't say that when it was first discovered in my media stenum 8 years later pressing against my superior vena cava…and they didn't say that when they cut my muscles, tendons and rib to get in there and cut out the 6.8 cent melanoma in a lymph node….

        People with any stage of melanoma shouldn't relax so much as to ignore regular checkups….Boy am I am a dark cloud tonight…but it is the truth as I see it, you know…

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        LynnLuc
        Participant

        PS….NED is really just a temporary state for most of us…I am not so niave to think it won't come back…it's just a matter of when…

        When I first had it removed when it was just a lil old freckle the docs said I had nothing to worry about…that clean margin is just another way of saying make the scar  look impressive!

        When it came back the second time in 4 years a little bigger and taller…they went a little deeper and wider and said take out those lymph nodes…which they did…said all clear….nothing to worry about…

        They didn't say that when it was first discovered in my media stenum 8 years later pressing against my superior vena cava…and they didn't say that when they cut my muscles, tendons and rib to get in there and cut out the 6.8 cent melanoma in a lymph node….

        People with any stage of melanoma shouldn't relax so much as to ignore regular checkups….Boy am I am a dark cloud tonight…but it is the truth as I see it, you know…

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        dian in spokane
        Participant

        I am also stage IV NED, and, my melanoma came back after 20 yrs..then again after 5, so I'm sure it will come back as well. But I try not to let it keep me down when it's not active. I have a lot of living left in me, and I am not going to let my fear take over.

        come chat!

        dian

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        dian in spokane
        Participant

        I am also stage IV NED, and, my melanoma came back after 20 yrs..then again after 5, so I'm sure it will come back as well. But I try not to let it keep me down when it's not active. I have a lot of living left in me, and I am not going to let my fear take over.

        come chat!

        dian

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        melanomafighter
        Participant

        hello, I am stage 3B and I too and glad you are NED.  I go for my first pet scan tomorrow to see if they did a good job with my first two surgeries and interferon for the 6 weeks I did it.  I have a lady at my drs office whose husband had melanoma and was stage 3C.  He had it on his back and it was removed and had to be tested every year as we all do for ten years and I asked her when she talked about him but said he "was" stage3C, what did she mean, after being NED for so long did they lower his stage and she said after ten and if doesn't return he isn't a stage anymore.  It was nice to hear and to know as I had not found anyone that didn't have it return, but reading these posts is not true for all since the one gal was NED for 20 and she didn't say anything about not being a stage and then returning again in 5?  I am still new at it all just thought I would share what I was told…Good luck

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        melanomafighter
        Participant

        hello, I am stage 3B and I too and glad you are NED.  I go for my first pet scan tomorrow to see if they did a good job with my first two surgeries and interferon for the 6 weeks I did it.  I have a lady at my drs office whose husband had melanoma and was stage 3C.  He had it on his back and it was removed and had to be tested every year as we all do for ten years and I asked her when she talked about him but said he "was" stage3C, what did she mean, after being NED for so long did they lower his stage and she said after ten and if doesn't return he isn't a stage anymore.  It was nice to hear and to know as I had not found anyone that didn't have it return, but reading these posts is not true for all since the one gal was NED for 20 and she didn't say anything about not being a stage and then returning again in 5?  I am still new at it all just thought I would share what I was told…Good luck

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        dian in spokane
        Participant

        I am sure that after ten years, one finds a way to think of oneself as 'cured' nevertheless, that person was (and still is) stage 3. You don't get to make your stage disappear or go backward.

        Maybe you were talking about me at the end. I was stage I for 20 yrs, and I certainly did think of myself as cured. I was stage IIIB for 5 yrs, and now I have been stage IV for 2 yrs. And if I am stage IV for 20 yrs I will still be stage IV.

        You can ask for your doctor to clarify this, but what I think is that the lady you met in the doctor's office maybe just doesn't understand the technicalities. But the realities are clear to her! Ten years out at stage 3C is great. If she can think of him as a 'previous' melanoma patient, or even 'cured', then good for her.

        Good luck with your PET scan tomorrow. Please let us know when you get your results. I hope you are getting over the side effects from interferon and feeling more normal

        dian

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        dian in spokane
        Participant

        I am sure that after ten years, one finds a way to think of oneself as 'cured' nevertheless, that person was (and still is) stage 3. You don't get to make your stage disappear or go backward.

        Maybe you were talking about me at the end. I was stage I for 20 yrs, and I certainly did think of myself as cured. I was stage IIIB for 5 yrs, and now I have been stage IV for 2 yrs. And if I am stage IV for 20 yrs I will still be stage IV.

        You can ask for your doctor to clarify this, but what I think is that the lady you met in the doctor's office maybe just doesn't understand the technicalities. But the realities are clear to her! Ten years out at stage 3C is great. If she can think of him as a 'previous' melanoma patient, or even 'cured', then good for her.

        Good luck with your PET scan tomorrow. Please let us know when you get your results. I hope you are getting over the side effects from interferon and feeling more normal

        dian

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