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Scan-NED

› Forums › General Melanoma Community › Scan-NED

  • Post
    • November 8, 2012 at 12:14 pm
    JoshF
    Participant

    Just had scan recently and was NED!! That puts at 18 months!!! My onc says 2 year and 5 year are key dates. I typically don't post because I have feelings of guilt that I have been doing well while many others are not and that bothers me. Though I was speaking with my oncologist who specializes in Melanoma and he said there are a lot of good things in the pipeline that could make significant impact. He obviously didn't go into great detail but he left me curious….anyone out there have an inkling of what he may be referring to?

    Just had scan recently and was NED!! That puts at 18 months!!! My onc says 2 year and 5 year are key dates. I typically don't post because I have feelings of guilt that I have been doing well while many others are not and that bothers me. Though I was speaking with my oncologist who specializes in Melanoma and he said there are a lot of good things in the pipeline that could make significant impact. He obviously didn't go into great detail but he left me curious….anyone out there have an inkling of what he may be referring to? As we all know this cancer is on the rise in regards to incidence (my step mother was just diagnosed). We need better treatments to deal with this especially when not detected early or for cases like mine where they are unsure if I had a primary dermal leison or an unknown primary. Keep fighting the fight…you're all an inspiration to me!!!!

     

    Josh

Viewing 17 reply threads
  • Replies
      • November 8, 2012 at 1:04 pm
      JC
      Participant

      Congrats.  I'm also in the Chicago area and am just curious if you're still w/ Richards/Lutheran General?

      • November 8, 2012 at 1:04 pm
      JC
      Participant

      Congrats.  I'm also in the Chicago area and am just curious if you're still w/ Richards/Lutheran General?

        • November 8, 2012 at 6:03 pm
        JoshF
        Participant
        I see Richards and Kaufman at Rush where I’ve been doing my scans. They have very different opinions. Who do you see?
        • November 8, 2012 at 6:03 pm
        JoshF
        Participant
        I see Richards and Kaufman at Rush where I’ve been doing my scans. They have very different opinions. Who do you see?
        • November 8, 2012 at 6:56 pm
        JC
        Participant

        I'm an earlier stage, but I've seen Kuzel at Northwestern and Brockstein at NorthShore.  How do Richards and Kaufman differ so much?

        • November 8, 2012 at 6:56 pm
        JC
        Participant

        I'm an earlier stage, but I've seen Kuzel at Northwestern and Brockstein at NorthShore.  How do Richards and Kaufman differ so much?

        • November 8, 2012 at 10:25 pm
        JoshF
        Participant
        Well it’s interesting. As I mentioned I never had a primary just a bump in cheek the size of a pea. Derm thought it was cyst but turned out to be melanoma. Anyway I was referred by another onc to Dr Richards. He ordered slides of biopsy as well as other mole I had removed, checked everything out and sent me to surgeon for wide excision and SLNB. Surgeon got everything and SLNB came back negative. Dr. Richards felt it was a primary that had no epidermal component. he said it is as rare as having no known primary(3-4%).That was May 2011.

        I had switched to seeing the derm at Rush-Dr. Rhoads. He kept suggesting I see the Rush melanoma specialist. I finally did and Dr Kaufman thinks its metastatic with no known primary. Very differing opinions. They also did some braf testing which was negative. Who knows…all I know is I spent my life in sun. I was very dark from summer tans and spent some years in Marine Corps infantry where I lived in sun. Never thought this would be me…at least do young. Happy in a way because I teach them to respect sun.

        Josh

        • November 8, 2012 at 10:25 pm
        JoshF
        Participant
        Well it’s interesting. As I mentioned I never had a primary just a bump in cheek the size of a pea. Derm thought it was cyst but turned out to be melanoma. Anyway I was referred by another onc to Dr Richards. He ordered slides of biopsy as well as other mole I had removed, checked everything out and sent me to surgeon for wide excision and SLNB. Surgeon got everything and SLNB came back negative. Dr. Richards felt it was a primary that had no epidermal component. he said it is as rare as having no known primary(3-4%).That was May 2011.

        I had switched to seeing the derm at Rush-Dr. Rhoads. He kept suggesting I see the Rush melanoma specialist. I finally did and Dr Kaufman thinks its metastatic with no known primary. Very differing opinions. They also did some braf testing which was negative. Who knows…all I know is I spent my life in sun. I was very dark from summer tans and spent some years in Marine Corps infantry where I lived in sun. Never thought this would be me…at least do young. Happy in a way because I teach them to respect sun.

        Josh

        • November 8, 2012 at 10:25 pm
        JoshF
        Participant
        Well it’s interesting. As I mentioned I never had a primary just a bump in cheek the size of a pea. Derm thought it was cyst but turned out to be melanoma. Anyway I was referred by another onc to Dr Richards. He ordered slides of biopsy as well as other mole I had removed, checked everything out and sent me to surgeon for wide excision and SLNB. Surgeon got everything and SLNB came back negative. Dr. Richards felt it was a primary that had no epidermal component. he said it is as rare as having no known primary(3-4%).That was May 2011.

        I had switched to seeing the derm at Rush-Dr. Rhoads. He kept suggesting I see the Rush melanoma specialist. I finally did and Dr Kaufman thinks its metastatic with no known primary. Very differing opinions. They also did some braf testing which was negative. Who knows…all I know is I spent my life in sun. I was very dark from summer tans and spent some years in Marine Corps infantry where I lived in sun. Never thought this would be me…at least do young. Happy in a way because I teach them to respect sun.

        Josh

        • November 8, 2012 at 10:46 pm
        JC
        Participant

        Do you like Kaufman and/or Richards?  Would you recommend or not recommend either?  If they found a trial for you elsewhere, do they try to help you get in?

        • November 8, 2012 at 10:46 pm
        JC
        Participant

        Do you like Kaufman and/or Richards?  Would you recommend or not recommend either?  If they found a trial for you elsewhere, do they try to help you get in?

        • November 8, 2012 at 10:46 pm
        JC
        Participant

        Do you like Kaufman and/or Richards?  Would you recommend or not recommend either?  If they found a trial for you elsewhere, do they try to help you get in?

        • November 9, 2012 at 12:51 pm
        JoshF
        Participant
        I do like them both. Very different personalities. I believe they would help get into another clinical trial.
        • November 9, 2012 at 12:58 pm
        JC
        Participant

        how does it work seeing 2 different oncologists at 2 different places?  who is the primary managing your case?  or they work together on it?

        • November 9, 2012 at 12:58 pm
        JC
        Participant

        how does it work seeing 2 different oncologists at 2 different places?  who is the primary managing your case?  or they work together on it?

        • November 9, 2012 at 12:58 pm
        JC
        Participant

        how does it work seeing 2 different oncologists at 2 different places?  who is the primary managing your case?  or they work together on it?

        • November 9, 2012 at 12:51 pm
        JoshF
        Participant
        I do like them both. Very different personalities. I believe they would help get into another clinical trial.
        • November 9, 2012 at 12:51 pm
        JoshF
        Participant
        I do like them both. Very different personalities. I believe they would help get into another clinical trial.
        • November 8, 2012 at 6:56 pm
        JC
        Participant

        I'm an earlier stage, but I've seen Kuzel at Northwestern and Brockstein at NorthShore.  How do Richards and Kaufman differ so much?

        • November 8, 2012 at 6:03 pm
        JoshF
        Participant
        I see Richards and Kaufman at Rush where I’ve been doing my scans. They have very different opinions. Who do you see?
      • November 8, 2012 at 1:04 pm
      JC
      Participant

      Congrats.  I'm also in the Chicago area and am just curious if you're still w/ Richards/Lutheran General?

      • November 8, 2012 at 2:46 pm
      audgator
      Participant

      Good to hear, Josh. My next scans are next month & I'm hoping to hear that phrase, NED. Then I'll start counting the months. I too have felt a little guilty as my journey has been relatively easy despite not reaching NED yet.  Maybe its good for newbies to hear from us too.    Dan

      • November 8, 2012 at 2:46 pm
      audgator
      Participant

      Good to hear, Josh. My next scans are next month & I'm hoping to hear that phrase, NED. Then I'll start counting the months. I too have felt a little guilty as my journey has been relatively easy despite not reaching NED yet.  Maybe its good for newbies to hear from us too.    Dan

        • November 9, 2012 at 12:57 pm
        JoshF
        Participant
        All the best!!! Keep me posted I’ll be thinking about you!!
        • November 9, 2012 at 12:57 pm
        JoshF
        Participant
        All the best!!! Keep me posted I’ll be thinking about you!!
        • November 9, 2012 at 12:57 pm
        JoshF
        Participant
        All the best!!! Keep me posted I’ll be thinking about you!!
      • November 8, 2012 at 2:46 pm
      audgator
      Participant

      Good to hear, Josh. My next scans are next month & I'm hoping to hear that phrase, NED. Then I'll start counting the months. I too have felt a little guilty as my journey has been relatively easy despite not reaching NED yet.  Maybe its good for newbies to hear from us too.    Dan

      • November 9, 2012 at 12:06 am
      Richard_K
      Participant
      Congratulations – 2 years is right around the corner.
      Dick
      • November 9, 2012 at 12:06 am
      Richard_K
      Participant
      Congratulations – 2 years is right around the corner.
      Dick
      • November 9, 2012 at 12:06 am
      Richard_K
      Participant
      Congratulations – 2 years is right around the corner.
      Dick
      • November 9, 2012 at 12:48 am
      dellriol
      Participant

      Don't feel guilty that things are going well. I live for these "good report" posts.  Every time I read that someone else is NED, it renews my hope that I will be too!  Thank you for sharing!

      • November 9, 2012 at 12:48 am
      dellriol
      Participant

      Don't feel guilty that things are going well. I live for these "good report" posts.  Every time I read that someone else is NED, it renews my hope that I will be too!  Thank you for sharing!

      • November 9, 2012 at 12:48 am
      dellriol
      Participant

      Don't feel guilty that things are going well. I live for these "good report" posts.  Every time I read that someone else is NED, it renews my hope that I will be too!  Thank you for sharing!

      • November 9, 2012 at 5:51 pm
      Mandi0280
      Participant

      My husband is 3b and just got news that he is NED x 1 year. Please do not feel bad because when I get on here and are able to read all of the people posting about NED for 1 year,5 years or even 10…that's what keeps me going. Melanoma is a hard cancer to battle and while you need to be smart as to what your up against we also need the good stories. So congrats!!!

      PS GO Chicago Bears ( also my favorite team)

      Mandi

      • November 9, 2012 at 5:51 pm
      Mandi0280
      Participant

      My husband is 3b and just got news that he is NED x 1 year. Please do not feel bad because when I get on here and are able to read all of the people posting about NED for 1 year,5 years or even 10…that's what keeps me going. Melanoma is a hard cancer to battle and while you need to be smart as to what your up against we also need the good stories. So congrats!!!

      PS GO Chicago Bears ( also my favorite team)

      Mandi

      • November 9, 2012 at 5:51 pm
      Mandi0280
      Participant

      My husband is 3b and just got news that he is NED x 1 year. Please do not feel bad because when I get on here and are able to read all of the people posting about NED for 1 year,5 years or even 10…that's what keeps me going. Melanoma is a hard cancer to battle and while you need to be smart as to what your up against we also need the good stories. So congrats!!!

      PS GO Chicago Bears ( also my favorite team)

      Mandi

      • November 9, 2012 at 8:16 pm
      mama1960
      Participant

      Never feel guilty about good news! We all love seeing it about anybody at any stage.

      • November 9, 2012 at 8:16 pm
      mama1960
      Participant

      Never feel guilty about good news! We all love seeing it about anybody at any stage.

      • November 9, 2012 at 8:16 pm
      mama1960
      Participant

      Never feel guilty about good news! We all love seeing it about anybody at any stage.

Viewing 17 reply threads
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