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Stage IV NED
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Stage IV NED

› Forums › General Melanoma Community › Stage IV NED

  • Post
    • January 16, 2013 at 11:45 am
    Brendan
    Participant
      Hi Everyone,

      I signed up in September to thank Brenda (Brenda-you and Kevin continue to inspire me and others!), but this is my first post about myself.

      I have been stage IV since Sep 2011 (more details on my profile). I had a craniotomy in November to remove a brain met and just received the good news that I am still NED…MRI and CT came back clean.

      I have visited this site often and would like to thank everyone for their contibutions and honesty. I always say to myself, “We are fighting cancer-it’s not supposed to be easy,” and this website often helps in the fight.

      To the people out there who are new here I would like to offer some unsolicited advice that has helped me:
      1-Go to an oncologist who specializes in melanoma.
      2-Go to an oncologist who specializes in melanoma.
      3-Reread 1 and 2.
      4-Be careful with this website. I have learned to use it for inspiration. It has helped me through some tough days, but some days the scary stories make things worse (just my opinion-I realize we are all doing what we can and the scary stories are inevitable).
      5-Check out the posts of CharlieS. His story (and his grin!!) will make you smile.

      Good luck and God bless.
      Brendan

    Viewing 20 reply threads
    • Replies
        • January 16, 2013 at 12:26 pm
        JC
        Participant

          congratulations on NED.

          who is your melanoma oncologist specialist?  are you happy with him/her?

          yes, you're right, sometimes this site can be scary – for example, reading profiles like yours of Stage I to Stage IV is very scary, it calls into question the Stage I "low risk" label.  did you have adverse features with mitotic rate, ulceration, etc?

          • January 16, 2013 at 12:26 pm
          JC
          Participant

            congratulations on NED.

            who is your melanoma oncologist specialist?  are you happy with him/her?

            yes, you're right, sometimes this site can be scary – for example, reading profiles like yours of Stage I to Stage IV is very scary, it calls into question the Stage I "low risk" label.  did you have adverse features with mitotic rate, ulceration, etc?

            • January 16, 2013 at 12:26 pm
            JC
            Participant

              congratulations on NED.

              who is your melanoma oncologist specialist?  are you happy with him/her?

              yes, you're right, sometimes this site can be scary – for example, reading profiles like yours of Stage I to Stage IV is very scary, it calls into question the Stage I "low risk" label.  did you have adverse features with mitotic rate, ulceration, etc?

              • January 16, 2013 at 3:45 pm
              aldakota22
              Participant

                Kevin that is great news.Like you I was also a stage 1 who after almost 10 years clean became stage IV.The good news on my part is that I am responding to Zelboraf .Been on it for almost 17 months now and will get scans in mid Feb.Praying to get the word from doc that it will be ok to be known as NED.Keeping my PMA (positive mind attitude). It would help so many on this site if you  post much more often with your NED status.Always need the happy news..Will keep you in my prayers also. Beat the Beast.   Al

                • January 16, 2013 at 3:45 pm
                aldakota22
                Participant

                  Kevin that is great news.Like you I was also a stage 1 who after almost 10 years clean became stage IV.The good news on my part is that I am responding to Zelboraf .Been on it for almost 17 months now and will get scans in mid Feb.Praying to get the word from doc that it will be ok to be known as NED.Keeping my PMA (positive mind attitude). It would help so many on this site if you  post much more often with your NED status.Always need the happy news..Will keep you in my prayers also. Beat the Beast.   Al

                  • January 16, 2013 at 3:45 pm
                  aldakota22
                  Participant

                    Kevin that is great news.Like you I was also a stage 1 who after almost 10 years clean became stage IV.The good news on my part is that I am responding to Zelboraf .Been on it for almost 17 months now and will get scans in mid Feb.Praying to get the word from doc that it will be ok to be known as NED.Keeping my PMA (positive mind attitude). It would help so many on this site if you  post much more often with your NED status.Always need the happy news..Will keep you in my prayers also. Beat the Beast.   Al

                    • January 16, 2013 at 4:22 pm
                    Swanee
                    Participant

                      Hi Brendan,

                      Thank you for your post and your great advice….I agree with all of it!   You are enjoying the coveted NED status, so go and enjoy life and live it to the fullest!  Congratulations! 

                      Swanee 

                      • January 16, 2013 at 4:22 pm
                      Swanee
                      Participant

                        Hi Brendan,

                        Thank you for your post and your great advice….I agree with all of it!   You are enjoying the coveted NED status, so go and enjoy life and live it to the fullest!  Congratulations! 

                        Swanee 

                        • January 16, 2013 at 4:22 pm
                        Swanee
                        Participant

                          Hi Brendan,

                          Thank you for your post and your great advice….I agree with all of it!   You are enjoying the coveted NED status, so go and enjoy life and live it to the fullest!  Congratulations! 

                          Swanee 

                          • January 16, 2013 at 5:53 pm
                          Randy437
                          Participant

                            After surgery to remove mets to each lung, brain and small intestine, I have been NED for over three years.  I also strongly encourage anyone with a melanoma diagnosis to seek out a melanoma specialist. 

                            • January 16, 2013 at 5:53 pm
                            Randy437
                            Participant

                              After surgery to remove mets to each lung, brain and small intestine, I have been NED for over three years.  I also strongly encourage anyone with a melanoma diagnosis to seek out a melanoma specialist. 

                              • January 16, 2013 at 5:53 pm
                              Randy437
                              Participant

                                After surgery to remove mets to each lung, brain and small intestine, I have been NED for over three years.  I also strongly encourage anyone with a melanoma diagnosis to seek out a melanoma specialist. 

                                • January 16, 2013 at 7:27 pm
                                DeniseK
                                Participant
                                  Dear Brendan,
                                  Oh how I love hearing this!! When they told me it was in my brain I can’t tell you how freaked out I was, but I’ve heard some pretty amazing stories since then and its given me a ton of hope. My radiologist told me about a woman that went through wbr and surgery 18 years ago and her melanoma hasnt come back! Your story is inspiring and I thank you for sharing, you’ve given me and I’m sure many others hope and courage to fight!! I too agree with your post 100%.
                                  Heres to many many many years of NED!!
                                  Denise ♡
                                  • January 16, 2013 at 7:27 pm
                                  DeniseK
                                  Participant
                                    Dear Brendan,
                                    Oh how I love hearing this!! When they told me it was in my brain I can’t tell you how freaked out I was, but I’ve heard some pretty amazing stories since then and its given me a ton of hope. My radiologist told me about a woman that went through wbr and surgery 18 years ago and her melanoma hasnt come back! Your story is inspiring and I thank you for sharing, you’ve given me and I’m sure many others hope and courage to fight!! I too agree with your post 100%.
                                    Heres to many many many years of NED!!
                                    Denise ♡
                                    • January 16, 2013 at 7:27 pm
                                    DeniseK
                                    Participant
                                      Dear Brendan,
                                      Oh how I love hearing this!! When they told me it was in my brain I can’t tell you how freaked out I was, but I’ve heard some pretty amazing stories since then and its given me a ton of hope. My radiologist told me about a woman that went through wbr and surgery 18 years ago and her melanoma hasnt come back! Your story is inspiring and I thank you for sharing, you’ve given me and I’m sure many others hope and courage to fight!! I too agree with your post 100%.
                                      Heres to many many many years of NED!!
                                      Denise ♡
                                      • January 16, 2013 at 7:46 pm
                                      JakeinNY
                                      Participant

                                        Congratulations Brendan and keep posting regularly!!!

                                        Best wishes for a long life!

                                        • January 16, 2013 at 7:46 pm
                                        JakeinNY
                                        Participant

                                          Congratulations Brendan and keep posting regularly!!!

                                          Best wishes for a long life!

                                            • January 17, 2013 at 2:26 am
                                            NYKaren
                                            Participant
                                              Wonderful news, Brendan
                                              Enjoy that beautiful family!
                                              Best wishes for continued NED.
                                              All the best,
                                              Karen
                                              • January 17, 2013 at 2:26 am
                                              NYKaren
                                              Participant
                                                Wonderful news, Brendan
                                                Enjoy that beautiful family!
                                                Best wishes for continued NED.
                                                All the best,
                                                Karen
                                                • January 17, 2013 at 2:26 am
                                                NYKaren
                                                Participant
                                                  Wonderful news, Brendan
                                                  Enjoy that beautiful family!
                                                  Best wishes for continued NED.
                                                  All the best,
                                                  Karen
                                                • January 16, 2013 at 7:46 pm
                                                JakeinNY
                                                Participant

                                                  Congratulations Brendan and keep posting regularly!!!

                                                  Best wishes for a long life!

                                                  • January 20, 2013 at 12:27 am
                                                  Tina D
                                                  Participant

                                                    Brendan,

                                                    Great news & great advice 🙂   Thanks so much for sharing and I look forward to reading these good reports of yours for a long ime to come!

                                                    Tina

                                                    • January 20, 2013 at 12:27 am
                                                    Tina D
                                                    Participant

                                                      Brendan,

                                                      Great news & great advice 🙂   Thanks so much for sharing and I look forward to reading these good reports of yours for a long ime to come!

                                                      Tina

                                                      • January 20, 2013 at 12:27 am
                                                      Tina D
                                                      Participant

                                                        Brendan,

                                                        Great news & great advice 🙂   Thanks so much for sharing and I look forward to reading these good reports of yours for a long ime to come!

                                                        Tina

                                                    Viewing 20 reply threads
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