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  • Post
    DebbieH
    Participant

      I used to frequent this board several times a day, for years, but something happened and I wasn't able to log-in.  Long story short, I put in my old password tonight as a lark and here I am.  I don't see many names that I recognize (hi Janner!) but for those who might remember me, I'm still doing fine nearly 14 years after stage 3C and interferon. 

      I see some things never change and as I was scrolling I saw anonymous posts actually telling someone to fire her oncologist for suggesting interferon as she was about to start it.  Argh.  Yes, we know now it cannot cure melanoma.  We do know that in a small subset of people it can delay recurrence and what is wrong with that?  For me these extra 14 years have been wonderful.  It was NOT a wasted year.  Jeesh – let's not bash each other's treatment decisions.  It would be easier if we had better options that worked for a large number of patients but we aren't there yet.  We all do what we think is best for us.  It feels good to be back.  Good luck to us all.

      DebbieH, stage 3C after interferon and no scans (yeah I'm really outside of the box – lol).

    Viewing 17 reply threads
    • Replies
        [email protected]
        Participant

          Debbie,

          Hi! Glad to see that you are doing well after all these years! It is always good for "newbies" to see a post from someone that has this many years of NED behind them, especially those wondering about Interferon.

          It was good to hear from you!

          Take care!

          Cara

          [email protected]
          Participant

            Debbie,

            Hi! Glad to see that you are doing well after all these years! It is always good for "newbies" to see a post from someone that has this many years of NED behind them, especially those wondering about Interferon.

            It was good to hear from you!

            Take care!

            Cara

            [email protected]
            Participant

              Debbie,

              Hi! Glad to see that you are doing well after all these years! It is always good for "newbies" to see a post from someone that has this many years of NED behind them, especially those wondering about Interferon.

              It was good to hear from you!

              Take care!

              Cara

              Janner
              Participant

                Waving back, Deb.  Good to see you posting here!

                Janner
                Participant

                  Waving back, Deb.  Good to see you posting here!

                  Janner
                  Participant

                    Waving back, Deb.  Good to see you posting here!

                    DonW
                    Participant

                      Hi, Debbie! It would be nice to get some oldies back in the chat room some time. Nice to hear you are still doing well!

                      DonW
                      Participant

                        Hi, Debbie! It would be nice to get some oldies back in the chat room some time. Nice to hear you are still doing well!

                        DonW
                        Participant

                          Hi, Debbie! It would be nice to get some oldies back in the chat room some time. Nice to hear you are still doing well!

                          Squash
                          Participant

                            It is great that you still NED after all those years with a good quality of life.

                            However there is no way you can tell whether interferon made any difference at all to you condition.

                            And the evidence doesnt support it.

                            So there is no way your personal story should be used as any sort of endorsement for a toxic unproven treatment.

                             

                             

                              DebbieH
                              Participant

                                Well Squash, since there is a certain number of people who will do well regardless of treatment or not there is no way ANY of us can know if it was our treatment, or not, that kept us well.

                                We know more about interferon now than we did in 2001 when I went from stage 1A to 3C.  We certainly know it can't cure melanoma.  They do know that in a small percentage of people it can delay recurrence.  If you are in that number of people then it's huge.  It's like every treatment we have – it's only good for a small number of people and we have no way of knowing if we'll be in that group or not. 

                                Maybe I'm okay because of having no scans so no extra stress and no extra radiation.  Maybe it's because of my daily Pepsi – lol.  Who knows.  I only know I am glad I did interferon because if it even just delayed a recurrence that's okay – we have some better treatments now and hopefully even better ones in the future that can help more than the handful we have now.  The watch and wait offered to me in 2001 was not for me.  The clinical trials at that time turned out not to work so I'm glad I passed on the ones I was offered. 

                                I think we should all share our success stories and people making treatment decisions can take what they want from them.  I was only stating what I did. 

                                DebbieH, stage 3C, NED nearly 14 years after interferon, no scans and a daily Pepsi – lol.

                                 

                                 

                                DianaD
                                Participant

                                  Thank you for your posts, Debbie, and for a new person on this forum, who has read how difficult Interferon treatment is, I'm glad to hear your story, and I'm encouraged by your spirit and your good news.  

                                  DianaD
                                  Participant

                                    Thank you for your posts, Debbie, and for a new person on this forum, who has read how difficult Interferon treatment is, I'm glad to hear your story, and I'm encouraged by your spirit and your good news.  

                                    DianaD
                                    Participant

                                      Thank you for your posts, Debbie, and for a new person on this forum, who has read how difficult Interferon treatment is, I'm glad to hear your story, and I'm encouraged by your spirit and your good news.  

                                      DebbieH
                                      Participant

                                        Well Squash, since there is a certain number of people who will do well regardless of treatment or not there is no way ANY of us can know if it was our treatment, or not, that kept us well.

                                        We know more about interferon now than we did in 2001 when I went from stage 1A to 3C.  We certainly know it can't cure melanoma.  They do know that in a small percentage of people it can delay recurrence.  If you are in that number of people then it's huge.  It's like every treatment we have – it's only good for a small number of people and we have no way of knowing if we'll be in that group or not. 

                                        Maybe I'm okay because of having no scans so no extra stress and no extra radiation.  Maybe it's because of my daily Pepsi – lol.  Who knows.  I only know I am glad I did interferon because if it even just delayed a recurrence that's okay – we have some better treatments now and hopefully even better ones in the future that can help more than the handful we have now.  The watch and wait offered to me in 2001 was not for me.  The clinical trials at that time turned out not to work so I'm glad I passed on the ones I was offered. 

                                        I think we should all share our success stories and people making treatment decisions can take what they want from them.  I was only stating what I did. 

                                        DebbieH, stage 3C, NED nearly 14 years after interferon, no scans and a daily Pepsi – lol.

                                         

                                         

                                        DebbieH
                                        Participant

                                          Well Squash, since there is a certain number of people who will do well regardless of treatment or not there is no way ANY of us can know if it was our treatment, or not, that kept us well.

                                          We know more about interferon now than we did in 2001 when I went from stage 1A to 3C.  We certainly know it can't cure melanoma.  They do know that in a small percentage of people it can delay recurrence.  If you are in that number of people then it's huge.  It's like every treatment we have – it's only good for a small number of people and we have no way of knowing if we'll be in that group or not. 

                                          Maybe I'm okay because of having no scans so no extra stress and no extra radiation.  Maybe it's because of my daily Pepsi – lol.  Who knows.  I only know I am glad I did interferon because if it even just delayed a recurrence that's okay – we have some better treatments now and hopefully even better ones in the future that can help more than the handful we have now.  The watch and wait offered to me in 2001 was not for me.  The clinical trials at that time turned out not to work so I'm glad I passed on the ones I was offered. 

                                          I think we should all share our success stories and people making treatment decisions can take what they want from them.  I was only stating what I did. 

                                          DebbieH, stage 3C, NED nearly 14 years after interferon, no scans and a daily Pepsi – lol.

                                           

                                           

                                          Charlie S
                                          Participant

                                             

                                            Gee Squash, do you always go around insulting long term cancer survivors, who are alive, surviving and living who are simply wanting to give hope and testimony to a cancer support group?

                                            Can you scientifically prove that the course of Interferon Alpha 2-B Recombinant for Injection that Debbie chose is NOT responsible for her long term remission?  No, you cannot. 

                                            Did she endorse her choice as one by which all others should be measured?  No she did not.

                                            What she DID say, which resonates now just as it did years ago , is that then, as well as now, no treatment has universal response rates across the melanoma population and each individual has to make that INFORMED individual treatment choice that best suits them.

                                            You being an asshole towards a cancer survivor should in no way be a personal endorsement nor proven method of offering hope to others.

                                            Charlie S

                                             

                                             

                                             

                                             

                                            Charlie S
                                            Participant

                                               

                                              Gee Squash, do you always go around insulting long term cancer survivors, who are alive, surviving and living who are simply wanting to give hope and testimony to a cancer support group?

                                              Can you scientifically prove that the course of Interferon Alpha 2-B Recombinant for Injection that Debbie chose is NOT responsible for her long term remission?  No, you cannot. 

                                              Did she endorse her choice as one by which all others should be measured?  No she did not.

                                              What she DID say, which resonates now just as it did years ago , is that then, as well as now, no treatment has universal response rates across the melanoma population and each individual has to make that INFORMED individual treatment choice that best suits them.

                                              You being an asshole towards a cancer survivor should in no way be a personal endorsement nor proven method of offering hope to others.

                                              Charlie S

                                               

                                               

                                               

                                               

                                              Charlie S
                                              Participant

                                                 

                                                Gee Squash, do you always go around insulting long term cancer survivors, who are alive, surviving and living who are simply wanting to give hope and testimony to a cancer support group?

                                                Can you scientifically prove that the course of Interferon Alpha 2-B Recombinant for Injection that Debbie chose is NOT responsible for her long term remission?  No, you cannot. 

                                                Did she endorse her choice as one by which all others should be measured?  No she did not.

                                                What she DID say, which resonates now just as it did years ago , is that then, as well as now, no treatment has universal response rates across the melanoma population and each individual has to make that INFORMED individual treatment choice that best suits them.

                                                You being an asshole towards a cancer survivor should in no way be a personal endorsement nor proven method of offering hope to others.

                                                Charlie S

                                                 

                                                 

                                                 

                                                 

                                              Squash
                                              Participant

                                                It is great that you still NED after all those years with a good quality of life.

                                                However there is no way you can tell whether interferon made any difference at all to you condition.

                                                And the evidence doesnt support it.

                                                So there is no way your personal story should be used as any sort of endorsement for a toxic unproven treatment.

                                                 

                                                 

                                                Squash
                                                Participant

                                                  It is great that you still NED after all those years with a good quality of life.

                                                  However there is no way you can tell whether interferon made any difference at all to you condition.

                                                  And the evidence doesnt support it.

                                                  So there is no way your personal story should be used as any sort of endorsement for a toxic unproven treatment.

                                                   

                                                   

                                                  Charlie S
                                                  Participant

                                                    Yeah Baby !!!!!!!!!!!!!!!!!!!!!!!!

                                                    Great to know you are busy living Debbie; I'll cook some squash in a moment (ahem).

                                                    You are a shining example of making up your mind, moving forward with what fit your mind best when faced with a suck diagnosis/prognosis.and here you are.  

                                                    Over the years, even though the trials and tribulations of posters on this board about melanoma have recurring themes, what is more pronounced now and across the spectrum of the internet in general is the nastiness.  

                                                    I am constantly blown away by the personal attacks some posters here make when people are trying to deal with their diagnosis and treatment decisions and just generally needing an online hug and knowing they are not alone in the struggle.

                                                    That nastiness certainly is not the legacy in my mind that Jeff and Lori Patterson( founders of MPIP) first instilled in MPIP.

                                                    I'm tickled that your treatment choice has worked for you and everybody else here should be damned glad to hear it as well.  

                                                    Cheers,

                                                    Very undeadly yours,

                                                    Charlie S

                                                      DebbieH
                                                      Participant

                                                        And I'm very happy to see YOU here Charlie – it's been ages.  I miss the old days of the chat room fun with you as our personal "bar tender".  It was great therapy.  I missed you here and I miss so many from years past who are now gone. 

                                                        Deb

                                                        DebbieH
                                                        Participant

                                                          And I'm very happy to see YOU here Charlie – it's been ages.  I miss the old days of the chat room fun with you as our personal "bar tender".  It was great therapy.  I missed you here and I miss so many from years past who are now gone. 

                                                          Deb

                                                          DebbieH
                                                          Participant

                                                            And I'm very happy to see YOU here Charlie – it's been ages.  I miss the old days of the chat room fun with you as our personal "bar tender".  It was great therapy.  I missed you here and I miss so many from years past who are now gone. 

                                                            Deb

                                                          Charlie S
                                                          Participant

                                                            Yeah Baby !!!!!!!!!!!!!!!!!!!!!!!!

                                                            Great to know you are busy living Debbie; I'll cook some squash in a moment (ahem).

                                                            You are a shining example of making up your mind, moving forward with what fit your mind best when faced with a suck diagnosis/prognosis.and here you are.  

                                                            Over the years, even though the trials and tribulations of posters on this board about melanoma have recurring themes, what is more pronounced now and across the spectrum of the internet in general is the nastiness.  

                                                            I am constantly blown away by the personal attacks some posters here make when people are trying to deal with their diagnosis and treatment decisions and just generally needing an online hug and knowing they are not alone in the struggle.

                                                            That nastiness certainly is not the legacy in my mind that Jeff and Lori Patterson( founders of MPIP) first instilled in MPIP.

                                                            I'm tickled that your treatment choice has worked for you and everybody else here should be damned glad to hear it as well.  

                                                            Cheers,

                                                            Very undeadly yours,

                                                            Charlie S

                                                            Charlie S
                                                            Participant

                                                              Yeah Baby !!!!!!!!!!!!!!!!!!!!!!!!

                                                              Great to know you are busy living Debbie; I'll cook some squash in a moment (ahem).

                                                              You are a shining example of making up your mind, moving forward with what fit your mind best when faced with a suck diagnosis/prognosis.and here you are.  

                                                              Over the years, even though the trials and tribulations of posters on this board about melanoma have recurring themes, what is more pronounced now and across the spectrum of the internet in general is the nastiness.  

                                                              I am constantly blown away by the personal attacks some posters here make when people are trying to deal with their diagnosis and treatment decisions and just generally needing an online hug and knowing they are not alone in the struggle.

                                                              That nastiness certainly is not the legacy in my mind that Jeff and Lori Patterson( founders of MPIP) first instilled in MPIP.

                                                              I'm tickled that your treatment choice has worked for you and everybody else here should be damned glad to hear it as well.  

                                                              Cheers,

                                                              Very undeadly yours,

                                                              Charlie S

                                                              JenJen12
                                                              Participant

                                                                Congrats on 14 years Debbie! I also just checked back in with the boards after being absent for a couple years (i blame it on living life and nursing school ) I just hit my 6 year mark after being given 6 months! Stage 3a with Interferon (high dose and then 11 months of shots!) So sad to hear about Jerry though..he was one of the main people on here that helped me get through my initial diagnosis at 25 . Best wishes and congrats on NED! 

                                                                 

                                                                JenJen 

                                                                stage 3a 2009 ( isolated cells in sentinel node) 

                                                                Interferon 2009-2010 

                                                                NED since August 2009

                                                                JenJen12
                                                                Participant

                                                                  Congrats on 14 years Debbie! I also just checked back in with the boards after being absent for a couple years (i blame it on living life and nursing school ) I just hit my 6 year mark after being given 6 months! Stage 3a with Interferon (high dose and then 11 months of shots!) So sad to hear about Jerry though..he was one of the main people on here that helped me get through my initial diagnosis at 25 . Best wishes and congrats on NED! 

                                                                   

                                                                  JenJen 

                                                                  stage 3a 2009 ( isolated cells in sentinel node) 

                                                                  Interferon 2009-2010 

                                                                  NED since August 2009

                                                                  JenJen12
                                                                  Participant

                                                                    Congrats on 14 years Debbie! I also just checked back in with the boards after being absent for a couple years (i blame it on living life and nursing school ) I just hit my 6 year mark after being given 6 months! Stage 3a with Interferon (high dose and then 11 months of shots!) So sad to hear about Jerry though..he was one of the main people on here that helped me get through my initial diagnosis at 25 . Best wishes and congrats on NED! 

                                                                     

                                                                    JenJen 

                                                                    stage 3a 2009 ( isolated cells in sentinel node) 

                                                                    Interferon 2009-2010 

                                                                    NED since August 2009

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