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Ten years out from stage IV diagnosis..niine years NED

Forums General Melanoma Community Ten years out from stage IV diagnosis..niine years NED

  • Post
    NancyGM
    Participant

      In a couple of a days, I will be at nine years, stage IV NED. It's wierd, but I feel a bit guilty, ( I have lost 5 dear people to cancer in the last few years). I feel like I am bragging when so many here are in the midst of struggling with the mental and physical effects of the disease…..However, I want to offer HOPE. There are long term NED survivors and long term stable disease status survivors of melanoma. Most of us just rarely check in here anymore. 

      My daughters grew up, I went back to work as a preschool teacher and am working at my dream school- best job I have ever had. I met a wonderful person who accepts my uncertain health and is a suportive partner. I have SO much to be grateful for, but, I struggle with exhastion, worry over possible symptoms of reccurrence, and the fact that others see me as "cured" when I know I can't ever really use that term.

      My history: I had a met to my mediastinum, biopsied in an open thoracotamy, that could not be removed because it accluded my pulmonary artery, so I did 11 rounds, over a year, of Temodar ( temozolamide) and have not done any preventative treatment. The only major change has been following a strict vegan diet. I try to deal with stress well, but, stress is always there in one form or another!

      So, I wish ALL of you the very best of luck and health and peace of mind. Every one of you are BRAVE and are my HEROES. Much love, fellow warriors. 

    Viewing 38 reply threads
    • Replies
        maperny
        Participant

          Very happy for you.  You are amazing!

          Maria

          maperny
          Participant

            Very happy for you.  You are amazing!

            Maria

            maperny
            Participant

              Very happy for you.  You are amazing!

              Maria

              mjanssentx
              Participant

                absolutely love to hear these stories…

                mjanssentx
                Participant

                  absolutely love to hear these stories…

                  mjanssentx
                  Participant

                    absolutely love to hear these stories…

                    snow white
                    Participant

                      It never gets old hearing positve outcomes.  Thanks for sharing.

                      snow white
                      Participant

                        It never gets old hearing positve outcomes.  Thanks for sharing.

                        snow white
                        Participant

                          It never gets old hearing positve outcomes.  Thanks for sharing.

                          Jahendry12
                          Participant

                            Awesome!  Enjoy life. Thanks for sharing. 

                            Jahendry12
                            Participant

                              Awesome!  Enjoy life. Thanks for sharing. 

                              Jahendry12
                              Participant

                                Awesome!  Enjoy life. Thanks for sharing. 

                                Rick from NC
                                Participant

                                  I'll also chime in.  It was 25 years ago, in January 1992 that I had just been accepted at NIH.  I went through 3 rounds of IL-2 and became NED.  I was 35 then, and I just turned 61 yesterday.  I'm grateful for my good fortune.  My best to all of you.

                                  Rick from NC
                                  Participant

                                    I'll also chime in.  It was 25 years ago, in January 1992 that I had just been accepted at NIH.  I went through 3 rounds of IL-2 and became NED.  I was 35 then, and I just turned 61 yesterday.  I'm grateful for my good fortune.  My best to all of you.

                                    Rick from NC
                                    Participant

                                      I'll also chime in.  It was 25 years ago, in January 1992 that I had just been accepted at NIH.  I went through 3 rounds of IL-2 and became NED.  I was 35 then, and I just turned 61 yesterday.  I'm grateful for my good fortune.  My best to all of you.

                                      _Paul_
                                      Participant

                                        Stories like yours give me hope. I bet there are many others that feel the same way.

                                        Thank you for sharing sharing Nancy.

                                        – Paul

                                        _Paul_
                                        Participant

                                          Stories like yours give me hope. I bet there are many others that feel the same way.

                                          Thank you for sharing sharing Nancy.

                                          – Paul

                                          _Paul_
                                          Participant

                                            Stories like yours give me hope. I bet there are many others that feel the same way.

                                            Thank you for sharing sharing Nancy.

                                            – Paul

                                            Patrisa
                                            Participant

                                              Wow, that is amazing, thank you for posting!

                                              And you should never feel guilty about it, you deserve (we all do) to be healthy and happy!

                                              Take care,

                                              Patrisa

                                              Patrisa
                                              Participant

                                                Wow, that is amazing, thank you for posting!

                                                And you should never feel guilty about it, you deserve (we all do) to be healthy and happy!

                                                Take care,

                                                Patrisa

                                                Patrisa
                                                Participant

                                                  Wow, that is amazing, thank you for posting!

                                                  And you should never feel guilty about it, you deserve (we all do) to be healthy and happy!

                                                  Take care,

                                                  Patrisa

                                                  Christinad
                                                  Participant

                                                    Thanking you for sharing!  Hearing your story gives me hope for the future. I very happy for your success. Wishing you a lifetime of NED. 

                                                    Christinad
                                                    Participant

                                                      Thanking you for sharing!  Hearing your story gives me hope for the future. I very happy for your success. Wishing you a lifetime of NED. 

                                                      Christinad
                                                      Participant

                                                        Thanking you for sharing!  Hearing your story gives me hope for the future. I very happy for your success. Wishing you a lifetime of NED. 

                                                        jenny22
                                                        Participant

                                                          Always GREAT to read these types of stories…Many congrats on your good health!!!!!!

                                                          Thanks so much for coming back to post.

                                                          jenny22
                                                          Participant

                                                            Always GREAT to read these types of stories…Many congrats on your good health!!!!!!

                                                            Thanks so much for coming back to post.

                                                            jenny22
                                                            Participant

                                                              Always GREAT to read these types of stories…Many congrats on your good health!!!!!!

                                                              Thanks so much for coming back to post.

                                                              iskitwo
                                                              Participant

                                                                Thanks for the post! It's great to hear stories like this. I just started this melanoma roller coaster and have my first follow up scans this week. 

                                                                iskitwo
                                                                Participant

                                                                  Thanks for the post! It's great to hear stories like this. I just started this melanoma roller coaster and have my first follow up scans this week. 

                                                                  iskitwo
                                                                  Participant

                                                                    Thanks for the post! It's great to hear stories like this. I just started this melanoma roller coaster and have my first follow up scans this week. 

                                                                    Charlie S
                                                                    Participant

                                                                      Good to hear.

                                                                      I totally get the survivors guilt.

                                                                      I totally get too that when having been at Stage IV using the word "cured"  seems like inviting a dance with the devil.

                                                                      It almost seems terrible, awful, shamefull and disrespectful of others when someone has died from melanoma only for a survivor to  offer hope to others by virtue of  living.

                                                                      It is fullfilling to see you post,

                                                                      It was also fullfilling to see Rick post as well……………we met seven years ago in Chapel Hill.

                                                                      Thanks for posting.

                                                                      Charlie S

                                                                      NED

                                                                      Not Expecting Death

                                                                      Charlie S
                                                                      Participant

                                                                        Good to hear.

                                                                        I totally get the survivors guilt.

                                                                        I totally get too that when having been at Stage IV using the word "cured"  seems like inviting a dance with the devil.

                                                                        It almost seems terrible, awful, shamefull and disrespectful of others when someone has died from melanoma only for a survivor to  offer hope to others by virtue of  living.

                                                                        It is fullfilling to see you post,

                                                                        It was also fullfilling to see Rick post as well……………we met seven years ago in Chapel Hill.

                                                                        Thanks for posting.

                                                                        Charlie S

                                                                        NED

                                                                        Not Expecting Death

                                                                        Charlie S
                                                                        Participant

                                                                          Good to hear.

                                                                          I totally get the survivors guilt.

                                                                          I totally get too that when having been at Stage IV using the word "cured"  seems like inviting a dance with the devil.

                                                                          It almost seems terrible, awful, shamefull and disrespectful of others when someone has died from melanoma only for a survivor to  offer hope to others by virtue of  living.

                                                                          It is fullfilling to see you post,

                                                                          It was also fullfilling to see Rick post as well……………we met seven years ago in Chapel Hill.

                                                                          Thanks for posting.

                                                                          Charlie S

                                                                          NED

                                                                          Not Expecting Death

                                                                          Tina Henry
                                                                          Participant

                                                                            Congratulations on continued good health!!  And thank you so much for sharing your story.  Reading the stories of HOPE help me to stay positive that this is not a death sentence.  I am one year NED after IIIB diagnosis in September 2015.  I was able to get 3 doses of Yervoy prior to having a side effect and my fingers are crossed every day that it found and DESTROYED any trace evidence of this ugly monster!!!  Sending hugs and prayers for many many more years as NED!!!

                                                                             

                                                                            Tina Henry
                                                                            Participant

                                                                              Congratulations on continued good health!!  And thank you so much for sharing your story.  Reading the stories of HOPE help me to stay positive that this is not a death sentence.  I am one year NED after IIIB diagnosis in September 2015.  I was able to get 3 doses of Yervoy prior to having a side effect and my fingers are crossed every day that it found and DESTROYED any trace evidence of this ugly monster!!!  Sending hugs and prayers for many many more years as NED!!!

                                                                               

                                                                              Tina Henry
                                                                              Participant

                                                                                Congratulations on continued good health!!  And thank you so much for sharing your story.  Reading the stories of HOPE help me to stay positive that this is not a death sentence.  I am one year NED after IIIB diagnosis in September 2015.  I was able to get 3 doses of Yervoy prior to having a side effect and my fingers are crossed every day that it found and DESTROYED any trace evidence of this ugly monster!!!  Sending hugs and prayers for many many more years as NED!!!

                                                                                 

                                                                                wasserd
                                                                                Participant

                                                                                  Thank you so much for sharing this! After another good MRI result today, I'm thinking about all the things you talk about. May your health continue!

                                                                                  Deborah

                                                                                  ill-live.com

                                                                                  wasserd
                                                                                  Participant

                                                                                    Thank you so much for sharing this! After another good MRI result today, I'm thinking about all the things you talk about. May your health continue!

                                                                                    Deborah

                                                                                    ill-live.com

                                                                                    wasserd
                                                                                    Participant

                                                                                      Thank you so much for sharing this! After another good MRI result today, I'm thinking about all the things you talk about. May your health continue!

                                                                                      Deborah

                                                                                      ill-live.com

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