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  • Post
    • May 6, 2011 at 8:58 pm
    petie540
    Participant

      How many out there have responded to treatment and are unsure if this means  good things lie ahead or are you just getting closer to a new event with your luck running out. See my profile to understand

      How many out there have responded to treatment and are unsure if this means  good things lie ahead or are you just getting closer to a new event with your luck running out. See my profile to understand

    Viewing 9 reply threads
    • Replies
        • May 6, 2011 at 9:11 pm
        killmel
        Participant

          sorry but your profile is "empty"

          • May 6, 2011 at 9:11 pm
          killmel
          Participant

            sorry but your profile is "empty"

            • May 7, 2011 at 2:15 am
            KatyWI
            Participant

              Hell yeah I feel scared and wonder if it's coming back.  But it ain't back today.  And damn if I'm going to miss out on my life moping around waiting for "it."  Have you seen the post "Roll Call for the Undead"?  Look it up.  Plenty of people 'round here who are busy living.

              http://www.melanoma.org/community/mpip/stage-ivroll-call-undead-please

              I hope you're just going through a low spot right now.  I hope you can get your head in a better place and embrace what you have.  'Cuz I do know how this feels.

              Katy

                • May 7, 2011 at 2:43 am
                petie540
                Participant

                  Perhaps because I am a doctor I just Know too damn much for my own good.

                  • May 7, 2011 at 2:43 am
                  petie540
                  Participant

                    Perhaps because I am a doctor I just Know too damn much for my own good.

                    • May 7, 2011 at 2:43 am
                    petie540
                    Participant

                      Perhaps because I am a doctor I just Know too damn much for my own good.

                      • May 7, 2011 at 12:08 pm
                      Vermont_Donna
                      Participant

                        Hi,

                        Sorry you have a melanoma diagnosis, but this is the place to come for information, tell your story, read about others, get support and provide support. You being a psychiatrist will be helpful I am sure. I do want to say that you will find that many many of us also "KNOW TOO DAMN MUCH FOR OUR OWN GOOD"! We are well informed melanoma warriors. You do not have to be a doctor to understand what melanoma can do and how it wages a special war for each of us and our families. We are VERY KNOWLEDGEABLE about medical terms, procedures, understanding pathology reports, and assimilating the information, applying it to treatment decisions, etc. Still more, we have learned we are not "numbers" and statistics. Each of us is an individual with different approachs and beliefs about what works and what doesnt, for US. 

                        We who are a little (or a long) ways out from our diagnosis are busy with living full lives while dealing with melanoma. For many of us it is a chronic health problem to manage. Not to say we dont have acute episodes of reoccurence and treatments, etc. Not to say we dont share our fears and concerns, our hopes and worries. We cry on each others shoulders here, stand up and keep going on. You will be hopefully surprised at the LIFE in this board! Are you a newcomer to this board…meaning have you been reading and not posting since your diagnosis or did you just find your way here??

                         Good luck in your dealing with melanoma, and please live with HOPE. We all strive to do that!

                        Vermont_Donna, stage 3a, NED after 4 infusions of Ipi and about to start round 2 this Wed.

                        • May 7, 2011 at 12:08 pm
                        Vermont_Donna
                        Participant

                          Hi,

                          Sorry you have a melanoma diagnosis, but this is the place to come for information, tell your story, read about others, get support and provide support. You being a psychiatrist will be helpful I am sure. I do want to say that you will find that many many of us also "KNOW TOO DAMN MUCH FOR OUR OWN GOOD"! We are well informed melanoma warriors. You do not have to be a doctor to understand what melanoma can do and how it wages a special war for each of us and our families. We are VERY KNOWLEDGEABLE about medical terms, procedures, understanding pathology reports, and assimilating the information, applying it to treatment decisions, etc. Still more, we have learned we are not "numbers" and statistics. Each of us is an individual with different approachs and beliefs about what works and what doesnt, for US. 

                          We who are a little (or a long) ways out from our diagnosis are busy with living full lives while dealing with melanoma. For many of us it is a chronic health problem to manage. Not to say we dont have acute episodes of reoccurence and treatments, etc. Not to say we dont share our fears and concerns, our hopes and worries. We cry on each others shoulders here, stand up and keep going on. You will be hopefully surprised at the LIFE in this board! Are you a newcomer to this board…meaning have you been reading and not posting since your diagnosis or did you just find your way here??

                           Good luck in your dealing with melanoma, and please live with HOPE. We all strive to do that!

                          Vermont_Donna, stage 3a, NED after 4 infusions of Ipi and about to start round 2 this Wed.

                          • May 7, 2011 at 2:43 am
                          petie540
                          Participant

                            Perhaps because I am a doctor I just Know too damn much for my own good.

                          • May 7, 2011 at 2:15 am
                          KatyWI
                          Participant

                            Hell yeah I feel scared and wonder if it's coming back.  But it ain't back today.  And damn if I'm going to miss out on my life moping around waiting for "it."  Have you seen the post "Roll Call for the Undead"?  Look it up.  Plenty of people 'round here who are busy living.

                            http://www.melanoma.org/community/mpip/stage-ivroll-call-undead-please

                            I hope you're just going through a low spot right now.  I hope you can get your head in a better place and embrace what you have.  'Cuz I do know how this feels.

                            Katy

                            • May 8, 2011 at 12:31 am
                            Rebecca and Bob
                            Participant

                              Totally get it. We used to worry daily especially in the beginning. Now that it's close to two years NED Stage IV after two years of treatment and surgery we try to only worry and think that way at scan time. Somewhere down the line you have to try hard to enjoy every day because none of us know really when that one will be the last.  Plus I have little kids and we found that we were missing out on them the more we worried.

                              • May 8, 2011 at 12:31 am
                              Rebecca and Bob
                              Participant

                                Totally get it. We used to worry daily especially in the beginning. Now that it's close to two years NED Stage IV after two years of treatment and surgery we try to only worry and think that way at scan time. Somewhere down the line you have to try hard to enjoy every day because none of us know really when that one will be the last.  Plus I have little kids and we found that we were missing out on them the more we worried.

                                • May 9, 2011 at 11:16 pm
                                kylez
                                Participant
                                  Since I’m not in any pain and am stable today I’m so lucky. Simple things that I take for granted I’m so lucky to still be able to do. So any obsessing on fear of illness or death is countered by how fortunate I am today. There’s nothing like a healthy set of lungs to breathe… Healthy pancreas… Healthy colon… Healthy legs to walk on… And so forth. How awesome are those things?

                                  I responded to treatment -lungs, (IL-2) last summer.
                                  Then 2 months laterI had an event – brain met, treated.
                                  Then 1 month later I had another brain met, treated.

                                  I’ve been stable for six months. I’m ‘naked’ – i.e. Not on any treatment, there’s not much I’ve seen in the way of adjuvan clinical trials.

                                  I figure there’s a lot of ways my life could be taken besides melanoma, even still– get run over, car crash, etc. So maybe everybody should be obsessing over mortality. Not just us. Maybe a little bit more of that on average might even be healthy — for the healthy.

                                  • May 9, 2011 at 11:16 pm
                                  kylez
                                  Participant
                                    Since I’m not in any pain and am stable today I’m so lucky. Simple things that I take for granted I’m so lucky to still be able to do. So any obsessing on fear of illness or death is countered by how fortunate I am today. There’s nothing like a healthy set of lungs to breathe… Healthy pancreas… Healthy colon… Healthy legs to walk on… And so forth. How awesome are those things?

                                    I responded to treatment -lungs, (IL-2) last summer.
                                    Then 2 months laterI had an event – brain met, treated.
                                    Then 1 month later I had another brain met, treated.

                                    I’ve been stable for six months. I’m ‘naked’ – i.e. Not on any treatment, there’s not much I’ve seen in the way of adjuvan clinical trials.

                                    I figure there’s a lot of ways my life could be taken besides melanoma, even still– get run over, car crash, etc. So maybe everybody should be obsessing over mortality. Not just us. Maybe a little bit more of that on average might even be healthy — for the healthy.

                                    • May 9, 2011 at 11:31 pm
                                    bluepeople
                                    Participant

                                       Hubby is stage IIC, diagnosed August 2010.  He's in the middle of the LD interferon and all seems to be fine now.  I always worry that it will come back, but we have a life to live too, and that's more important at this point.  We have a 15-yr old and a 19 month old who definitely keep us on our feet.  We just bought a couple dirtbikes which we hope to get out riding soon.  You can't let it run your life.  Good luck, keep your spirits up!

                                      Akilyn

                                      • May 9, 2011 at 11:31 pm
                                      bluepeople
                                      Participant

                                         Hubby is stage IIC, diagnosed August 2010.  He's in the middle of the LD interferon and all seems to be fine now.  I always worry that it will come back, but we have a life to live too, and that's more important at this point.  We have a 15-yr old and a 19 month old who definitely keep us on our feet.  We just bought a couple dirtbikes which we hope to get out riding soon.  You can't let it run your life.  Good luck, keep your spirits up!

                                        Akilyn

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