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Scan-NED

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  • 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 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 10:46 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 12:51 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 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 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 10:25 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 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 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 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 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.

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