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NED for 10 years Stage III :)

Forums General Melanoma Community NED for 10 years Stage III :)

  • Post
    AlisonC
    Participant
      Hi fellow MPIP-ers….

      I feel like I’ve been waiting so long for this moment and I know how helpful it was to me, when I was newly diagnosed at stage III, to hear good news stories. I’m aware that there are a lot of people struggling at the moment with stage IV (I have a good friend who is also) but good news also has a place here and I’m grateful to be able to share mine.

      I got my 10 year scan results yesterday….brain MRI, whole body PET and a bunch of smaller things…. All NED.

      I am thrilled and I know I owe a lot of it to the support I received. Thanks to everyone here for being part of that.

      AlisonC
      Stage IIIB
      NED since 2001

    Viewing 38 reply threads
    • Replies
        kristine
        Participant

          Hurray Alison!  God Bless and Prayers for another 10 Years NED – Go Girl!!  Have a GREAT WEEKEND!!!!

          kristine
          Participant

            Hurray Alison!  God Bless and Prayers for another 10 Years NED – Go Girl!!  Have a GREAT WEEKEND!!!!

            kristine
            Participant

              Hurray Alison!  God Bless and Prayers for another 10 Years NED – Go Girl!!  Have a GREAT WEEKEND!!!!

              Majalist
              Participant

                Such a wonderful news! So glad you posted this; it will give hope and support to many!

                I am very happy for you!

                Marleen

                Majalist
                Participant

                  Such a wonderful news! So glad you posted this; it will give hope and support to many!

                  I am very happy for you!

                  Marleen

                  Majalist
                  Participant

                    Such a wonderful news! So glad you posted this; it will give hope and support to many!

                    I am very happy for you!

                    Marleen

                    Nicky
                    Participant

                      Congratulations Alison, that is awesome news.  I am so happy to see a fellow MPIP reach such a milestone.  Keep posting for the newbies, its great to get some good news stories.

                      Nicky

                      Stage IIIB

                      NED, first diagnosed 2001

                      Nicky
                      Participant

                        Congratulations Alison, that is awesome news.  I am so happy to see a fellow MPIP reach such a milestone.  Keep posting for the newbies, its great to get some good news stories.

                        Nicky

                        Stage IIIB

                        NED, first diagnosed 2001

                        Nicky
                        Participant

                          Congratulations Alison, that is awesome news.  I am so happy to see a fellow MPIP reach such a milestone.  Keep posting for the newbies, its great to get some good news stories.

                          Nicky

                          Stage IIIB

                          NED, first diagnosed 2001

                          DonW
                          Participant

                            Alison — Nice to see you posting, especially with such good news. I remember chatting with you years ago and it's great to hear you have been doing well. Keep it up!

                            Don

                            DonW
                            Participant

                              Alison — Nice to see you posting, especially with such good news. I remember chatting with you years ago and it's great to hear you have been doing well. Keep it up!

                              Don

                              DonW
                              Participant

                                Alison — Nice to see you posting, especially with such good news. I remember chatting with you years ago and it's great to hear you have been doing well. Keep it up!

                                Don

                                triciad
                                Participant

                                  I love these happy stories…thanks for posting.

                                  Best of luck to you for continued good health and NED status!

                                  triciad
                                  Participant

                                    I love these happy stories…thanks for posting.

                                    Best of luck to you for continued good health and NED status!

                                    triciad
                                    Participant

                                      I love these happy stories…thanks for posting.

                                      Best of luck to you for continued good health and NED status!

                                      bradcope1
                                      Participant

                                        This is such great news. My daugther is newly diagnosed Stage 3b and facing a big decision next week–wait and see or the ipi/interferon trial. All the doctors are pushing her to do "something", but I believe she may decide to go the other direction. Do you mind sharing the approach you chose 10 years ago? Every story, every bit of info we can get is greatly appreciated. Again, congratulations on your wonderful news. Brad

                                        bradcope1
                                        Participant

                                          This is such great news. My daugther is newly diagnosed Stage 3b and facing a big decision next week–wait and see or the ipi/interferon trial. All the doctors are pushing her to do "something", but I believe she may decide to go the other direction. Do you mind sharing the approach you chose 10 years ago? Every story, every bit of info we can get is greatly appreciated. Again, congratulations on your wonderful news. Brad

                                          bradcope1
                                          Participant

                                            This is such great news. My daugther is newly diagnosed Stage 3b and facing a big decision next week–wait and see or the ipi/interferon trial. All the doctors are pushing her to do "something", but I believe she may decide to go the other direction. Do you mind sharing the approach you chose 10 years ago? Every story, every bit of info we can get is greatly appreciated. Again, congratulations on your wonderful news. Brad

                                            AlisonC
                                            Participant
                                              Hi Brad

                                              I’m sorry your daughter is going through this….I think as awful as it is to be the person diagnosed, it is almost worse to be their parent. I remember my parents anguish (especially my mother when I rang to tell her) when I was diagnosed and it’s still very raw in all our memories.

                                              I was diagnosed and treated in Australia. Interferon was strongly recommended against, for the variable outcomes reported and the punishing physical and psychological consequences. It was available if I’d wanted it but everyone on my medical team made it clear they weren’t in favour. I took part in a 4 month clinical trial that paired an investigational immune stimulating drug (ISCOM) with a protein found on my tumour (NY-ESO-1). The immune complex was injected every 3 weeks and I had a reaction a lot like from a typhoid shot….pain, weakness, ache etc, but mainly confined to the arm the injection was given in.

                                              If you google NY-ESO-1 trials I am sure you will find info but your daughter would need to be positive for that protein. Overall it was another immune system approach though, so GM-CSF etc would be comparable I would think.

                                              I have to add that I also attended a 10 day residential program at a complementary health centre in which I was taught about diet modification (no sugar, fresh healthy with few additives), meditation (helps to control physical things like circulating cortisol from the inevitable stress and the psychological factors such as panic and obsessing over stats) and exercise etc. That had intensive counseling from specialist cancer counsellors and that was immensely valuable. The centre was all about complying with the medical treatment, but doing everything beyond that that you could do to maximize your chances of being on the right side of the statistics.

                                              Honestly, the surgeon saved my life but the complementary program saved my sanity and gave me my life back. I still do everything they taught me every day (organic juices, meditation) and it’s helped me for longer than the medical program (sometimes the end of the clinical trial is the hardest part….until then you feel like you’re “active” but after then you’re just “waiting” and that takes some getting used to…going on with your life while waiting for what might (or might not) happen. Similar programs in the U.S seem to be offered by the Commonweal cancer centre. I was at http://www.Gawler.org.

                                              So, medical treatment through the Ludwig research institute (they are global…you can google them) and complementary through the Gawler foundation….and I have been vigilant about maintaining my health ever since. Who knows if that made the difference or whether I was just lucky, but it’s given me some feeling of control in a very scary situation.

                                              Good luck for your daughter that she’s posting the same thing in 10 years πŸ™‚

                                              AlisonC
                                              Stage IIIB
                                              NED since 2001

                                              AlisonC
                                              Participant
                                                Hi Brad

                                                I’m sorry your daughter is going through this….I think as awful as it is to be the person diagnosed, it is almost worse to be their parent. I remember my parents anguish (especially my mother when I rang to tell her) when I was diagnosed and it’s still very raw in all our memories.

                                                I was diagnosed and treated in Australia. Interferon was strongly recommended against, for the variable outcomes reported and the punishing physical and psychological consequences. It was available if I’d wanted it but everyone on my medical team made it clear they weren’t in favour. I took part in a 4 month clinical trial that paired an investigational immune stimulating drug (ISCOM) with a protein found on my tumour (NY-ESO-1). The immune complex was injected every 3 weeks and I had a reaction a lot like from a typhoid shot….pain, weakness, ache etc, but mainly confined to the arm the injection was given in.

                                                If you google NY-ESO-1 trials I am sure you will find info but your daughter would need to be positive for that protein. Overall it was another immune system approach though, so GM-CSF etc would be comparable I would think.

                                                I have to add that I also attended a 10 day residential program at a complementary health centre in which I was taught about diet modification (no sugar, fresh healthy with few additives), meditation (helps to control physical things like circulating cortisol from the inevitable stress and the psychological factors such as panic and obsessing over stats) and exercise etc. That had intensive counseling from specialist cancer counsellors and that was immensely valuable. The centre was all about complying with the medical treatment, but doing everything beyond that that you could do to maximize your chances of being on the right side of the statistics.

                                                Honestly, the surgeon saved my life but the complementary program saved my sanity and gave me my life back. I still do everything they taught me every day (organic juices, meditation) and it’s helped me for longer than the medical program (sometimes the end of the clinical trial is the hardest part….until then you feel like you’re “active” but after then you’re just “waiting” and that takes some getting used to…going on with your life while waiting for what might (or might not) happen. Similar programs in the U.S seem to be offered by the Commonweal cancer centre. I was at http://www.Gawler.org.

                                                So, medical treatment through the Ludwig research institute (they are global…you can google them) and complementary through the Gawler foundation….and I have been vigilant about maintaining my health ever since. Who knows if that made the difference or whether I was just lucky, but it’s given me some feeling of control in a very scary situation.

                                                Good luck for your daughter that she’s posting the same thing in 10 years πŸ™‚

                                                AlisonC
                                                Stage IIIB
                                                NED since 2001

                                                  JerryfromFauq
                                                  Participant

                                                    Allison, please copy this over to update your profile.  It is great so see you posting and and hope to see you post in another 5 and 10 years!  So happy for you.

                                                    JerryfromFauq
                                                    Participant

                                                      Allison, please copy this over to update your profile.  It is great so see you posting and and hope to see you post in another 5 and 10 years!  So happy for you.

                                                      JerryfromFauq
                                                      Participant

                                                        Allison, please copy this over to update your profile.  It is great so see you posting and and hope to see you post in another 5 and 10 years!  So happy for you.

                                                        AlisonC
                                                        Participant
                                                          Thanks Jerry :). It’s nice to see you too πŸ™‚ you’ve been an inspiration for me also. I’ll take up your suggestion about updating my profile πŸ™‚

                                                          Alison

                                                          AlisonC
                                                          Participant
                                                            Thanks Jerry :). It’s nice to see you too πŸ™‚ you’ve been an inspiration for me also. I’ll take up your suggestion about updating my profile πŸ™‚

                                                            Alison

                                                            AlisonC
                                                            Participant
                                                              Thanks Jerry :). It’s nice to see you too πŸ™‚ you’ve been an inspiration for me also. I’ll take up your suggestion about updating my profile πŸ™‚

                                                              Alison

                                                              bradcope1
                                                              Participant

                                                                Allison, thank you so much for sharing your story. This is so helpful, hopeful and inspiring, especially since she has  made the same decision regarding interferon based on our own research. I will share your note today with my daughter. She is currently exploring nutritional treatments and looking at retreats for young people with cancer in various parts of the world. Hopefully she will get the ipi arm and it will give us some piece of mind in the years ahead. At 24, she has a lot of living left to do and your story gives us a glimpse of what is possible. All the best,

                                                                Brad

                                                                 

                                                                bradcope1
                                                                Participant

                                                                  Allison, thank you so much for sharing your story. This is so helpful, hopeful and inspiring, especially since she has  made the same decision regarding interferon based on our own research. I will share your note today with my daughter. She is currently exploring nutritional treatments and looking at retreats for young people with cancer in various parts of the world. Hopefully she will get the ipi arm and it will give us some piece of mind in the years ahead. At 24, she has a lot of living left to do and your story gives us a glimpse of what is possible. All the best,

                                                                  Brad

                                                                   

                                                                  bradcope1
                                                                  Participant

                                                                    Allison, thank you so much for sharing your story. This is so helpful, hopeful and inspiring, especially since she has  made the same decision regarding interferon based on our own research. I will share your note today with my daughter. She is currently exploring nutritional treatments and looking at retreats for young people with cancer in various parts of the world. Hopefully she will get the ipi arm and it will give us some piece of mind in the years ahead. At 24, she has a lot of living left to do and your story gives us a glimpse of what is possible. All the best,

                                                                    Brad

                                                                     

                                                                  AlisonC
                                                                  Participant
                                                                    Hi Brad

                                                                    I’m sorry your daughter is going through this….I think as awful as it is to be the person diagnosed, it is almost worse to be their parent. I remember my parents anguish (especially my mother when I rang to tell her) when I was diagnosed and it’s still very raw in all our memories.

                                                                    I was diagnosed and treated in Australia. Interferon was strongly recommended against, for the variable outcomes reported and the punishing physical and psychological consequences. It was available if I’d wanted it but everyone on my medical team made it clear they weren’t in favour. I took part in a 4 month clinical trial that paired an investigational immune stimulating drug (ISCOM) with a protein found on my tumour (NY-ESO-1). The immune complex was injected every 3 weeks and I had a reaction a lot like from a typhoid shot….pain, weakness, ache etc, but mainly confined to the arm the injection was given in.

                                                                    If you google NY-ESO-1 trials I am sure you will find info but your daughter would need to be positive for that protein. Overall it was another immune system approach though, so GM-CSF etc would be comparable I would think.

                                                                    I have to add that I also attended a 10 day residential program at a complementary health centre in which I was taught about diet modification (no sugar, fresh healthy with few additives), meditation (helps to control physical things like circulating cortisol from the inevitable stress and the psychological factors such as panic and obsessing over stats) and exercise etc. That had intensive counseling from specialist cancer counsellors and that was immensely valuable. The centre was all about complying with the medical treatment, but doing everything beyond that that you could do to maximize your chances of being on the right side of the statistics.

                                                                    Honestly, the surgeon saved my life but the complementary program saved my sanity and gave me my life back. I still do everything they taught me every day (organic juices, meditation) and it’s helped me for longer than the medical program (sometimes the end of the clinical trial is the hardest part….until then you feel like you’re “active” but after then you’re just “waiting” and that takes some getting used to…going on with your life while waiting for what might (or might not) happen. Similar programs in the U.S seem to be offered by the Commonweal cancer centre. I was at http://www.Gawler.org.

                                                                    So, medical treatment through the Ludwig research institute (they are global…you can google them) and complementary through the Gawler foundation….and I have been vigilant about maintaining my health ever since. Who knows if that made the difference or whether I was just lucky, but it’s given me some feeling of control in a very scary situation.

                                                                    Good luck for your daughter that she’s posting the same thing in 10 years πŸ™‚

                                                                    AlisonC
                                                                    Stage IIIB
                                                                    NED since 2001

                                                                    King
                                                                    Participant

                                                                      Alison,

                                                                       

                                                                      Congratulations!!!  This is wonderful news and is very inspiring.  We all need to hang onto hope and stories like yours make it less difficult.  Enjoy!

                                                                       

                                                                      Stay Strong

                                                                      King

                                                                      Stage IV 7/05 Liver Mets

                                                                      King
                                                                      Participant

                                                                        Alison,

                                                                         

                                                                        Congratulations!!!  This is wonderful news and is very inspiring.  We all need to hang onto hope and stories like yours make it less difficult.  Enjoy!

                                                                         

                                                                        Stay Strong

                                                                        King

                                                                        Stage IV 7/05 Liver Mets

                                                                        King
                                                                        Participant

                                                                          Alison,

                                                                           

                                                                          Congratulations!!!  This is wonderful news and is very inspiring.  We all need to hang onto hope and stories like yours make it less difficult.  Enjoy!

                                                                           

                                                                          Stay Strong

                                                                          King

                                                                          Stage IV 7/05 Liver Mets

                                                                            AlisonC
                                                                            Participant
                                                                              Hi King

                                                                              Lovely to see you also. You are another person whose experience has taught me to never give up. I appreciate all the support you’ve given me (directly and indirectly through your advice to others) over the years…

                                                                              Alison

                                                                              AlisonC
                                                                              Participant
                                                                                Hi King

                                                                                Lovely to see you also. You are another person whose experience has taught me to never give up. I appreciate all the support you’ve given me (directly and indirectly through your advice to others) over the years…

                                                                                Alison

                                                                                AlisonC
                                                                                Participant
                                                                                  Hi King

                                                                                  Lovely to see you also. You are another person whose experience has taught me to never give up. I appreciate all the support you’ve given me (directly and indirectly through your advice to others) over the years…

                                                                                  Alison

                                                                                lhaley
                                                                                Participant

                                                                                  Great news!   I love to hear how well you've done!  There really are good stories but many are off living and many don't think to come  back to the board to let us know when they are doing. Those in the middle of battle need to refocus and see that there are also successful stories.

                                                                                  Celebrate Allison!

                                                                                  Linda

                                                                                  lhaley
                                                                                  Participant

                                                                                    Great news!   I love to hear how well you've done!  There really are good stories but many are off living and many don't think to come  back to the board to let us know when they are doing. Those in the middle of battle need to refocus and see that there are also successful stories.

                                                                                    Celebrate Allison!

                                                                                    Linda

                                                                                    lhaley
                                                                                    Participant

                                                                                      Great news!   I love to hear how well you've done!  There really are good stories but many are off living and many don't think to come  back to the board to let us know when they are doing. Those in the middle of battle need to refocus and see that there are also successful stories.

                                                                                      Celebrate Allison!

                                                                                      Linda

                                                                                      lhaley
                                                                                      Participant

                                                                                        Great news!   I love to hear how well you've done!  There really are good stories but many are off living and many don't think to come  back to the board to let us know when they are doing. Those in the middle of battle need to refocus and see that there are also successful stories.

                                                                                        Celebrate Allison!

                                                                                        Linda

                                                                                        lhaley
                                                                                        Participant

                                                                                          Great news!   I love to hear how well you've done!  There really are good stories but many are off living and many don't think to come  back to the board to let us know when they are doing. Those in the middle of battle need to refocus and see that there are also successful stories.

                                                                                          Celebrate Allison!

                                                                                          Linda

                                                                                          lhaley
                                                                                          Participant

                                                                                            Great news!   I love to hear how well you've done!  There really are good stories but many are off living and many don't think to come  back to the board to let us know when they are doing. Those in the middle of battle need to refocus and see that there are also successful stories.

                                                                                            Celebrate Allison!

                                                                                            Linda

                                                                                            BarbieGirl
                                                                                            Participant

                                                                                              Congrats, Alison!!   I'm coming up on 11 years myself!!  It's a great milestone—–here's to another few decades of NED!!!!  *Hugz*

                                                                                              ~Lisa~

                                                                                              BarbieGirl
                                                                                              Participant

                                                                                                Congrats, Alison!!   I'm coming up on 11 years myself!!  It's a great milestone—–here's to another few decades of NED!!!!  *Hugz*

                                                                                                ~Lisa~

                                                                                                BarbieGirl
                                                                                                Participant

                                                                                                  Congrats, Alison!!   I'm coming up on 11 years myself!!  It's a great milestone—–here's to another few decades of NED!!!!  *Hugz*

                                                                                                  ~Lisa~

                                                                                                  CLPrice31
                                                                                                  Participant

                                                                                                    Woo hooooooo! I log onto this page quite often just to read posts like yours! As a stage III warrior, paranoia sometimes consumes my thoughts. Thank you for sharing this with us. It gives us all hope! CONGRATULATIONS! Here is to many, many more NED years!

                                                                                                    CLPrice31
                                                                                                    Participant

                                                                                                      Woo hooooooo! I log onto this page quite often just to read posts like yours! As a stage III warrior, paranoia sometimes consumes my thoughts. Thank you for sharing this with us. It gives us all hope! CONGRATULATIONS! Here is to many, many more NED years!

                                                                                                      CLPrice31
                                                                                                      Participant

                                                                                                        Woo hooooooo! I log onto this page quite often just to read posts like yours! As a stage III warrior, paranoia sometimes consumes my thoughts. Thank you for sharing this with us. It gives us all hope! CONGRATULATIONS! Here is to many, many more NED years!

                                                                                                        Jydnew
                                                                                                        Participant

                                                                                                          HUGE Congratulations!!!! 

                                                                                                          My husband is 9.5 years NED from stage iiia – it will be 10 years (fingers and toes crossed) in February/March 2012.  I'm curious… what will your doctor's protocol be from this point on?  My husband's oncologist said  no more CT scans.  Just a chest xray once a year and semi-annual bloodwork and oncology appointments (as well as semi-annual dermatology appointments.  He will be 36 when he hits the 10 year NEDiversary.  Any changes for you?

                                                                                                          Again – such wonderful news!  Congratulations and my most sincere hopes that you never encounter melanoma again.

                                                                                                          Wendy

                                                                                                          Jydnew
                                                                                                          Participant

                                                                                                            HUGE Congratulations!!!! 

                                                                                                            My husband is 9.5 years NED from stage iiia – it will be 10 years (fingers and toes crossed) in February/March 2012.  I'm curious… what will your doctor's protocol be from this point on?  My husband's oncologist said  no more CT scans.  Just a chest xray once a year and semi-annual bloodwork and oncology appointments (as well as semi-annual dermatology appointments.  He will be 36 when he hits the 10 year NEDiversary.  Any changes for you?

                                                                                                            Again – such wonderful news!  Congratulations and my most sincere hopes that you never encounter melanoma again.

                                                                                                            Wendy

                                                                                                            Jydnew
                                                                                                            Participant

                                                                                                              HUGE Congratulations!!!! 

                                                                                                              My husband is 9.5 years NED from stage iiia – it will be 10 years (fingers and toes crossed) in February/March 2012.  I'm curious… what will your doctor's protocol be from this point on?  My husband's oncologist said  no more CT scans.  Just a chest xray once a year and semi-annual bloodwork and oncology appointments (as well as semi-annual dermatology appointments.  He will be 36 when he hits the 10 year NEDiversary.  Any changes for you?

                                                                                                              Again – such wonderful news!  Congratulations and my most sincere hopes that you never encounter melanoma again.

                                                                                                              Wendy

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