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“Cured”

Forums General Melanoma Community “Cured”

  • Post
    Happy_girl
    Participant

      Are a majority of stage 1 and 2 melanomas "cured?"  I was just diagnosed 1b with 1.9 mm.  Is there a chance that I might never have to deal with melanoma again- or am I just a ticking time bomb? It seems that I read so many conflicting articles…. I'm pretty sure I have over googled!  I'm afraid I'm going to leave my husband and 4 month old- I just don't know what to think.  And I also don't kjow if we will have any more kids.  So many things have talked about the relationship between pregnancy and melanoma.   Would we even be approved to adopt with me having melanoma?  So many emotions….. 

    Viewing 17 reply threads
    • Replies
        killmel
        Participant

          In 2005, I was also dx with melanoma stage 1 (1.9mm)  Then in 2009, had a recurrence stage 3, then in 2011, mel move to both lungs now I am stage 4.

          There is no way of knowing whether or not there are melanoma micro cells floating in your body. I almost went 5 yrs without any problems then I found a small pea size lump on my thigh in 2009.

          So you will never know if melanoma will recurr again. There are many people that go 5, 10, 15, and even 20 yrs after being DX stage 1 and then find out after all that time has lapsed, that Melanoma doescome  back. I do not want to sugar coat the melanoma dx. Just try just to live each day. You could be a lucky one and stay at stage 1.

          Good Luck

            joelcairo
            Participant

              The American Cancer Society says that 5-year survival of class Ib melanoma is 92%. The 10-year survival is 86%.

              http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-survival-rates

               

              Those numbers are good enough to provide real hope for the future, but they're also bad enough that you shouldn't just put the prospect out of your mind. Be sure to follow up with regular scans, and consider making sensible diet/lifestyle changes to minimize the odds of recurrence. My favorite books that go into this subject are probably Anticancer: A New Way of Life and Life Over Cancer.

               

               

              Happy_girl
              Participant

                I'll have to check that book- thank you!  I'm trying very hard to be positive and optimistic! 

                Happy_girl
                Participant

                  I'll have to check that book- thank you!  I'm trying very hard to be positive and optimistic! 

                  Happy_girl
                  Participant

                    I'll have to check that book- thank you!  I'm trying very hard to be positive and optimistic! 

                    joelcairo
                    Participant

                      The American Cancer Society says that 5-year survival of class Ib melanoma is 92%. The 10-year survival is 86%.

                      http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-survival-rates

                       

                      Those numbers are good enough to provide real hope for the future, but they're also bad enough that you shouldn't just put the prospect out of your mind. Be sure to follow up with regular scans, and consider making sensible diet/lifestyle changes to minimize the odds of recurrence. My favorite books that go into this subject are probably Anticancer: A New Way of Life and Life Over Cancer.

                       

                       

                      joelcairo
                      Participant

                        The American Cancer Society says that 5-year survival of class Ib melanoma is 92%. The 10-year survival is 86%.

                        http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-survival-rates

                         

                        Those numbers are good enough to provide real hope for the future, but they're also bad enough that you shouldn't just put the prospect out of your mind. Be sure to follow up with regular scans, and consider making sensible diet/lifestyle changes to minimize the odds of recurrence. My favorite books that go into this subject are probably Anticancer: A New Way of Life and Life Over Cancer.

                         

                         

                        JC
                        Participant

                          statistically stage I is unlikely to deal with this again, there was a Queensland study recently that showed the 20 year survival rate of 96% for stage I

                          JC
                          Participant

                            statistically stage I is unlikely to deal with this again, there was a Queensland study recently that showed the 20 year survival rate of 96% for stage I

                            JC
                            Participant

                              statistically stage I is unlikely to deal with this again, there was a Queensland study recently that showed the 20 year survival rate of 96% for stage I

                            killmel
                            Participant

                              In 2005, I was also dx with melanoma stage 1 (1.9mm)  Then in 2009, had a recurrence stage 3, then in 2011, mel move to both lungs now I am stage 4.

                              There is no way of knowing whether or not there are melanoma micro cells floating in your body. I almost went 5 yrs without any problems then I found a small pea size lump on my thigh in 2009.

                              So you will never know if melanoma will recurr again. There are many people that go 5, 10, 15, and even 20 yrs after being DX stage 1 and then find out after all that time has lapsed, that Melanoma doescome  back. I do not want to sugar coat the melanoma dx. Just try just to live each day. You could be a lucky one and stay at stage 1.

                              Good Luck

                              killmel
                              Participant

                                In 2005, I was also dx with melanoma stage 1 (1.9mm)  Then in 2009, had a recurrence stage 3, then in 2011, mel move to both lungs now I am stage 4.

                                There is no way of knowing whether or not there are melanoma micro cells floating in your body. I almost went 5 yrs without any problems then I found a small pea size lump on my thigh in 2009.

                                So you will never know if melanoma will recurr again. There are many people that go 5, 10, 15, and even 20 yrs after being DX stage 1 and then find out after all that time has lapsed, that Melanoma doescome  back. I do not want to sugar coat the melanoma dx. Just try just to live each day. You could be a lucky one and stay at stage 1.

                                Good Luck

                                killmel
                                Participant

                                  In my opinion statistics are meaningless. You are an individual & not a number. When it comes to melanoma, there are exceptions for every argument and statement regarding melanoma .

                                  Once you have been Dx with melanoma at any stage, you will always have it. There is NO CURE! As someone else has already stated, it can come back 20 yrs out after remaining dormant.

                                  I think that you need to face reality and hope that your melanoma remains dormant.Even if your surgeon get "Clear margins" from your WLE, you will never know if microscopic cancer cells are outside the margins and floating around. That happened to me, I started at stage 1 and now I am fighting for my life in a clinical trial for stage 4 melanoma patients.

                                  There at many people that stay at stage 1 maybe with prayer and luck, you might never have to deal with Melanoma again. However, the trick is not to think about it everyday and then you perhaps can have a normal life.

                                  Once dx with melanoma, life is just never the same because you MUST get on a routine to have yourself checked out regularly. With those check-ups, come anxiety with hopes that melanoma does not return. I am sorry that you are facing this problen because you are so young. I was 55 when I was first dx.

                                   

                                    JC
                                    Participant

                                      "Once you have been Dx with melanoma at any stage, you will always have it."

                                       

                                      I think that is an unfounded statement.  I think for the majority of Stage I patients, the surgery is curative in the sense that it is likely the melanoma is gone.  That doesn't mean you should not pay attention or be vigilant, but you should not have the mentality that there are melanoma cells floating around in your body dormant that might become a problem someday.  I think for most Stage 1 cases, the biopsy and/or surgery remove the cancerous cells.  I don't think it's correct to say once you have had melanoma, you always have melanoma in your body somewhere.  If that were the case, there's no way you'd have survival rates for early stages in the 90s%.

                                      becky15
                                      Participant
                                        Totally agree with you. I get fed up with people saying there is no cure for melanoma. As yet, there is no cure for metatastic melanoma although, as evidenced by this forum, patients are surviving longer and longer with the new drugs. For the majority with melanoma that is diagnosed before it has spread from the skin, most will be cured by the initial surgery. They just can never be certain so need to remain vigilant.
                                        Happy_girl
                                        Participant

                                          Thank you for the positive comments.  I am writing this through tears as it is still so much to handle.  Thanks for some positive hope- and yes….a reminder to stay vigilant!  My derm probably thinks I'm nuts because I've been in 2 times in two weeks after the diagnosis.  One was for an inflamed pimple…. Talk about embarrassing! I'm praying that my husband and I can look back on this and laugh.  Thanks for being positive! πŸ™‚

                                          killmel
                                          Participant

                                            I am sorry for what you are going through.

                                            I was in your EXACT position 12 yrs ago. like you  I  was Stage 1 (depth 1.5mm) with the hope that "surgery" got it all and I was done with Melanoma.

                                            Here I am today, stage 4. I have had 4 recurrence of Melanoma and 4 surgeries, each time with the hope, surgery got it all. Then melanoma spread to my chest, lungs and brain. ..now stage 4

                                            Yes, I too was stage 1 and never thought I would be stage 4. I was EXTREMELY VIGILANT, positive attitude, led a healthy life, and did all my check ups and follow up with the Derm & my Oncologist yet here I am today telling you I am stage 4. No one can predict what outcome your DX will bring. Just live each day like it is your last and enjoy every moment because your life can change is a second with the results of a biopsy or a scan.

                                            Good Luck to You.

                                            killmel
                                            Participant

                                              I am sorry for what you are going through.

                                              I was in your EXACT position 12 yrs ago. like you  I  was Stage 1 (depth 1.5mm) with the hope that "surgery" got it all and I was done with Melanoma.

                                              Here I am today, stage 4. I have had 4 recurrence of Melanoma and 4 surgeries, each time with the hope, surgery got it all. Then melanoma spread to my chest, lungs and brain. ..now stage 4

                                              Yes, I too was stage 1 and never thought I would be stage 4. I was EXTREMELY VIGILANT, positive attitude, led a healthy life, and did all my check ups and follow up with the Derm & my Oncologist yet here I am today telling you I am stage 4. No one can predict what outcome your DX will bring. Just live each day like it is your last and enjoy every moment because your life can change is a second with the results of a biopsy or a scan.

                                              Good Luck to You.

                                              killmel
                                              Participant

                                                I am sorry for what you are going through.

                                                I was in your EXACT position 12 yrs ago. like you  I  was Stage 1 (depth 1.5mm) with the hope that "surgery" got it all and I was done with Melanoma.

                                                Here I am today, stage 4. I have had 4 recurrence of Melanoma and 4 surgeries, each time with the hope, surgery got it all. Then melanoma spread to my chest, lungs and brain. ..now stage 4

                                                Yes, I too was stage 1 and never thought I would be stage 4. I was EXTREMELY VIGILANT, positive attitude, led a healthy life, and did all my check ups and follow up with the Derm & my Oncologist yet here I am today telling you I am stage 4. No one can predict what outcome your DX will bring. Just live each day like it is your last and enjoy every moment because your life can change is a second with the results of a biopsy or a scan.

                                                Good Luck to You.

                                                DinaDina
                                                Participant

                                                  Please let me know how you doing now ? Hope for the best !

                                                  Happy_girl
                                                  Participant

                                                    Thank you for the positive comments.  I am writing this through tears as it is still so much to handle.  Thanks for some positive hope- and yes….a reminder to stay vigilant!  My derm probably thinks I'm nuts because I've been in 2 times in two weeks after the diagnosis.  One was for an inflamed pimple…. Talk about embarrassing! I'm praying that my husband and I can look back on this and laugh.  Thanks for being positive! πŸ™‚

                                                    Happy_girl
                                                    Participant

                                                      Thank you for the positive comments.  I am writing this through tears as it is still so much to handle.  Thanks for some positive hope- and yes….a reminder to stay vigilant!  My derm probably thinks I'm nuts because I've been in 2 times in two weeks after the diagnosis.  One was for an inflamed pimple…. Talk about embarrassing! I'm praying that my husband and I can look back on this and laugh.  Thanks for being positive! πŸ™‚

                                                      becky15
                                                      Participant
                                                        Totally agree with you. I get fed up with people saying there is no cure for melanoma. As yet, there is no cure for metatastic melanoma although, as evidenced by this forum, patients are surviving longer and longer with the new drugs. For the majority with melanoma that is diagnosed before it has spread from the skin, most will be cured by the initial surgery. They just can never be certain so need to remain vigilant.
                                                        becky15
                                                        Participant
                                                          Totally agree with you. I get fed up with people saying there is no cure for melanoma. As yet, there is no cure for metatastic melanoma although, as evidenced by this forum, patients are surviving longer and longer with the new drugs. For the majority with melanoma that is diagnosed before it has spread from the skin, most will be cured by the initial surgery. They just can never be certain so need to remain vigilant.
                                                          JC
                                                          Participant

                                                            "Once you have been Dx with melanoma at any stage, you will always have it."

                                                             

                                                            I think that is an unfounded statement.  I think for the majority of Stage I patients, the surgery is curative in the sense that it is likely the melanoma is gone.  That doesn't mean you should not pay attention or be vigilant, but you should not have the mentality that there are melanoma cells floating around in your body dormant that might become a problem someday.  I think for most Stage 1 cases, the biopsy and/or surgery remove the cancerous cells.  I don't think it's correct to say once you have had melanoma, you always have melanoma in your body somewhere.  If that were the case, there's no way you'd have survival rates for early stages in the 90s%.

                                                            JC
                                                            Participant

                                                              "Once you have been Dx with melanoma at any stage, you will always have it."

                                                               

                                                              I think that is an unfounded statement.  I think for the majority of Stage I patients, the surgery is curative in the sense that it is likely the melanoma is gone.  That doesn't mean you should not pay attention or be vigilant, but you should not have the mentality that there are melanoma cells floating around in your body dormant that might become a problem someday.  I think for most Stage 1 cases, the biopsy and/or surgery remove the cancerous cells.  I don't think it's correct to say once you have had melanoma, you always have melanoma in your body somewhere.  If that were the case, there's no way you'd have survival rates for early stages in the 90s%.

                                                            killmel
                                                            Participant

                                                              In my opinion statistics are meaningless. You are an individual & not a number. When it comes to melanoma, there are exceptions for every argument and statement regarding melanoma .

                                                              Once you have been Dx with melanoma at any stage, you will always have it. There is NO CURE! As someone else has already stated, it can come back 20 yrs out after remaining dormant.

                                                              I think that you need to face reality and hope that your melanoma remains dormant.Even if your surgeon get "Clear margins" from your WLE, you will never know if microscopic cancer cells are outside the margins and floating around. That happened to me, I started at stage 1 and now I am fighting for my life in a clinical trial for stage 4 melanoma patients.

                                                              There at many people that stay at stage 1 maybe with prayer and luck, you might never have to deal with Melanoma again. However, the trick is not to think about it everyday and then you perhaps can have a normal life.

                                                              Once dx with melanoma, life is just never the same because you MUST get on a routine to have yourself checked out regularly. With those check-ups, come anxiety with hopes that melanoma does not return. I am sorry that you are facing this problen because you are so young. I was 55 when I was first dx.

                                                               

                                                              killmel
                                                              Participant

                                                                In my opinion statistics are meaningless. You are an individual & not a number. When it comes to melanoma, there are exceptions for every argument and statement regarding melanoma .

                                                                Once you have been Dx with melanoma at any stage, you will always have it. There is NO CURE! As someone else has already stated, it can come back 20 yrs out after remaining dormant.

                                                                I think that you need to face reality and hope that your melanoma remains dormant.Even if your surgeon get "Clear margins" from your WLE, you will never know if microscopic cancer cells are outside the margins and floating around. That happened to me, I started at stage 1 and now I am fighting for my life in a clinical trial for stage 4 melanoma patients.

                                                                There at many people that stay at stage 1 maybe with prayer and luck, you might never have to deal with Melanoma again. However, the trick is not to think about it everyday and then you perhaps can have a normal life.

                                                                Once dx with melanoma, life is just never the same because you MUST get on a routine to have yourself checked out regularly. With those check-ups, come anxiety with hopes that melanoma does not return. I am sorry that you are facing this problen because you are so young. I was 55 when I was first dx.

                                                                 

                                                                Momrn5
                                                                Participant

                                                                  The majority of 1b melanomas are cured with surgery.  Heck, the majority of 3a is cured with surgery, if you believe the stats.  You Are talking to a minority of people here on this forum who have been in the unlucky minority to progress.  Your melanoma was not really deep.  You have everything on your side in relation to not progressing.  Over 90% do not progress at 1b.  Now, no one can tell you if you will be in the unlucky minority, but as they said, be vigilant as if you do progress, there are many treatment options now available.  Go live your life and don't let that 10 percent odds control it!  That being said, it is still a very scary diagnosis but you will come to terms with it in time. Good luck and Best Wishes. 

                                                                  Momrn5
                                                                  Participant

                                                                    The majority of 1b melanomas are cured with surgery.  Heck, the majority of 3a is cured with surgery, if you believe the stats.  You Are talking to a minority of people here on this forum who have been in the unlucky minority to progress.  Your melanoma was not really deep.  You have everything on your side in relation to not progressing.  Over 90% do not progress at 1b.  Now, no one can tell you if you will be in the unlucky minority, but as they said, be vigilant as if you do progress, there are many treatment options now available.  Go live your life and don't let that 10 percent odds control it!  That being said, it is still a very scary diagnosis but you will come to terms with it in time. Good luck and Best Wishes. 

                                                                      Happy_girl
                                                                      Participant

                                                                        Thank you so very much! Time to live and be positive! I don't know how others on this board or you feel about this….. But I have been praying for people on this board too! πŸ™‚

                                                                        Happy_girl
                                                                        Participant

                                                                          Thank you so very much! Time to live and be positive! I don't know how others on this board or you feel about this….. But I have been praying for people on this board too! πŸ™‚

                                                                          Happy_girl
                                                                          Participant

                                                                            Thank you so very much! Time to live and be positive! I don't know how others on this board or you feel about this….. But I have been praying for people on this board too! πŸ™‚

                                                                          Momrn5
                                                                          Participant

                                                                            The majority of 1b melanomas are cured with surgery.  Heck, the majority of 3a is cured with surgery, if you believe the stats.  You Are talking to a minority of people here on this forum who have been in the unlucky minority to progress.  Your melanoma was not really deep.  You have everything on your side in relation to not progressing.  Over 90% do not progress at 1b.  Now, no one can tell you if you will be in the unlucky minority, but as they said, be vigilant as if you do progress, there are many treatment options now available.  Go live your life and don't let that 10 percent odds control it!  That being said, it is still a very scary diagnosis but you will come to terms with it in time. Good luck and Best Wishes. 

                                                                            JerryfromFauq
                                                                            Participant

                                                                              I find all  the above comments very interesting.  The only times I have heard the word CURE related to melanoma made by all the Melanoma specialists I have read has been in the articles/comments that have said that they have never seen a melanoma patient be a complete responder to the immunotherapy treatment of IL-2 and that then remained as a complete responder for over 30 months.  I  personally know people that have in excess of 20 years of complete response to IL-2 and no longer worry about Melanoma. 

                                                                              ARE THEY CURED?  Many IL-2 melanoma oncologists say yes.  Do they have any melanoma cells in isolated small numbers in their bodies that the immune system keeps in check, quite possibly. 

                                                                              I was mis-diagnosed for 3 1/2 years by a GP, and went to Stage IV within 8 months of initial diagnosis.  Even at Stage IV, back when IL-2 was the only likely treatment to have even a slight chance of helping inoperatable Stage IV patients,  I refused (well after a few WHY ME's,) to accept all that I read and even being told by one General Oncologist that I only had between 30 and 180 days to remain earthbound.  Yes, I still have innumerable lung tumors living in both of my lungs.  If you want to compare statistics between your Stage I statistics and my Stage IV statistics, go ahead.  When you do this, review who/what statistics actual refer refer to.  

                                                                                  I am an individual/  I am still living, I have another 1/2 dozen new grandchildren and 3 Greatgrandkids that I was not supposed to be here to pester.  I do not know when, nor what I will die because of or from.  YES, I pay much attention to melanoma and have for the SEVEN years since I was supposed to have  been dead at STAGE IV.

                                                                                  Should you be concerned?  YES!

                                                                                  Should you be paranoid?  Only if you want Melanoma to have already won and taken your life away whjile you are still living. 

                                                                                  You will have a new reality, live for your family and your joy.  While your statistics based on the 1.9 are not as low as the people with a depth of < 1.  The statistics iin 2007 said I had about a 5% chance of being alive now.  Those statistical numbers were based on people from the past at Stage IV.  The Stage IV numbers have now reached the point that in many trials 45-80% of even Stage IV people are still alive 2 years later.  I expect those number to increase.  As our numbers get better they will learn how to use the newly developed and still develipng treatments to help the lower stage people thru adjuvant treatments. 

                                                                                  It would be interesting to ask how many people still hang around this board that have not progressed beyound stage I, especially how many that have not had additional primaries.  They are out living life and seldem, if ever, drop back in. 

                                                                                   Janner has a email group that would be a better representtion and not scare you as much as we do.  She only allows Stage 1 participants.  You can contact her from her contact point on her user profile.

                                                                                 Be vigilant, not paranoid.   Don't sweat it when people tell you that you are CURED and have nothing to worry about.  It takes about a year for the terror to ease (not disappear) so that you can more enjoy the new reality of your position.

                                                                                 LOOK up:    The Things I Wish I Were Told When I Was Diagnosed With Cancer
                                                                              http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
                                                                               

                                                                               

                                                                              JerryfromFauq
                                                                              Participant

                                                                                I find all  the above comments very interesting.  The only times I have heard the word CURE related to melanoma made by all the Melanoma specialists I have read has been in the articles/comments that have said that they have never seen a melanoma patient be a complete responder to the immunotherapy treatment of IL-2 and that then remained as a complete responder for over 30 months.  I  personally know people that have in excess of 20 years of complete response to IL-2 and no longer worry about Melanoma. 

                                                                                ARE THEY CURED?  Many IL-2 melanoma oncologists say yes.  Do they have any melanoma cells in isolated small numbers in their bodies that the immune system keeps in check, quite possibly. 

                                                                                I was mis-diagnosed for 3 1/2 years by a GP, and went to Stage IV within 8 months of initial diagnosis.  Even at Stage IV, back when IL-2 was the only likely treatment to have even a slight chance of helping inoperatable Stage IV patients,  I refused (well after a few WHY ME's,) to accept all that I read and even being told by one General Oncologist that I only had between 30 and 180 days to remain earthbound.  Yes, I still have innumerable lung tumors living in both of my lungs.  If you want to compare statistics between your Stage I statistics and my Stage IV statistics, go ahead.  When you do this, review who/what statistics actual refer refer to.  

                                                                                    I am an individual/  I am still living, I have another 1/2 dozen new grandchildren and 3 Greatgrandkids that I was not supposed to be here to pester.  I do not know when, nor what I will die because of or from.  YES, I pay much attention to melanoma and have for the SEVEN years since I was supposed to have  been dead at STAGE IV.

                                                                                    Should you be concerned?  YES!

                                                                                    Should you be paranoid?  Only if you want Melanoma to have already won and taken your life away whjile you are still living. 

                                                                                    You will have a new reality, live for your family and your joy.  While your statistics based on the 1.9 are not as low as the people with a depth of < 1.  The statistics iin 2007 said I had about a 5% chance of being alive now.  Those statistical numbers were based on people from the past at Stage IV.  The Stage IV numbers have now reached the point that in many trials 45-80% of even Stage IV people are still alive 2 years later.  I expect those number to increase.  As our numbers get better they will learn how to use the newly developed and still develipng treatments to help the lower stage people thru adjuvant treatments. 

                                                                                    It would be interesting to ask how many people still hang around this board that have not progressed beyound stage I, especially how many that have not had additional primaries.  They are out living life and seldem, if ever, drop back in. 

                                                                                     Janner has a email group that would be a better representtion and not scare you as much as we do.  She only allows Stage 1 participants.  You can contact her from her contact point on her user profile.

                                                                                   Be vigilant, not paranoid.   Don't sweat it when people tell you that you are CURED and have nothing to worry about.  It takes about a year for the terror to ease (not disappear) so that you can more enjoy the new reality of your position.

                                                                                   LOOK up:    The Things I Wish I Were Told When I Was Diagnosed With Cancer
                                                                                http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
                                                                                 

                                                                                 

                                                                                  Happy_girl
                                                                                  Participant

                                                                                    Jerry~ 

                                                                                    thank you so much for the perspective.  You have made many great points.  It is so helpful to hear people talk who know what I'm going through- like the others on here too.  I do need to live and not worry as much.  Life with  my little family still awaits!   I will also look into janners group.  I hope any stage 1 can join.   Thank you for perspective! 

                                                                                    Happy_girl
                                                                                    Participant

                                                                                      Jerry~ 

                                                                                      thank you so much for the perspective.  You have made many great points.  It is so helpful to hear people talk who know what I'm going through- like the others on here too.  I do need to live and not worry as much.  Life with  my little family still awaits!   I will also look into janners group.  I hope any stage 1 can join.   Thank you for perspective! 

                                                                                      Happy_girl
                                                                                      Participant

                                                                                        Jerry~ 

                                                                                        thank you so much for the perspective.  You have made many great points.  It is so helpful to hear people talk who know what I'm going through- like the others on here too.  I do need to live and not worry as much.  Life with  my little family still awaits!   I will also look into janners group.  I hope any stage 1 can join.   Thank you for perspective! 

                                                                                        Swanee
                                                                                        Participant

                                                                                          Just a big "LIKE'" for you Jerry, thanks for taking the time to share what so many of us are feeling who are stage IV and living…..not just surviving!   

                                                                                          Swanee

                                                                                          Swanee
                                                                                          Participant

                                                                                            Just a big "LIKE'" for you Jerry, thanks for taking the time to share what so many of us are feeling who are stage IV and living…..not just surviving!   

                                                                                            Swanee

                                                                                            Swanee
                                                                                            Participant

                                                                                              Just a big "LIKE'" for you Jerry, thanks for taking the time to share what so many of us are feeling who are stage IV and living…..not just surviving!   

                                                                                              Swanee

                                                                                            JerryfromFauq
                                                                                            Participant

                                                                                              I find all  the above comments very interesting.  The only times I have heard the word CURE related to melanoma made by all the Melanoma specialists I have read has been in the articles/comments that have said that they have never seen a melanoma patient be a complete responder to the immunotherapy treatment of IL-2 and that then remained as a complete responder for over 30 months.  I  personally know people that have in excess of 20 years of complete response to IL-2 and no longer worry about Melanoma. 

                                                                                              ARE THEY CURED?  Many IL-2 melanoma oncologists say yes.  Do they have any melanoma cells in isolated small numbers in their bodies that the immune system keeps in check, quite possibly. 

                                                                                              I was mis-diagnosed for 3 1/2 years by a GP, and went to Stage IV within 8 months of initial diagnosis.  Even at Stage IV, back when IL-2 was the only likely treatment to have even a slight chance of helping inoperatable Stage IV patients,  I refused (well after a few WHY ME's,) to accept all that I read and even being told by one General Oncologist that I only had between 30 and 180 days to remain earthbound.  Yes, I still have innumerable lung tumors living in both of my lungs.  If you want to compare statistics between your Stage I statistics and my Stage IV statistics, go ahead.  When you do this, review who/what statistics actual refer refer to.  

                                                                                                  I am an individual/  I am still living, I have another 1/2 dozen new grandchildren and 3 Greatgrandkids that I was not supposed to be here to pester.  I do not know when, nor what I will die because of or from.  YES, I pay much attention to melanoma and have for the SEVEN years since I was supposed to have  been dead at STAGE IV.

                                                                                                  Should you be concerned?  YES!

                                                                                                  Should you be paranoid?  Only if you want Melanoma to have already won and taken your life away whjile you are still living. 

                                                                                                  You will have a new reality, live for your family and your joy.  While your statistics based on the 1.9 are not as low as the people with a depth of < 1.  The statistics iin 2007 said I had about a 5% chance of being alive now.  Those statistical numbers were based on people from the past at Stage IV.  The Stage IV numbers have now reached the point that in many trials 45-80% of even Stage IV people are still alive 2 years later.  I expect those number to increase.  As our numbers get better they will learn how to use the newly developed and still develipng treatments to help the lower stage people thru adjuvant treatments. 

                                                                                                  It would be interesting to ask how many people still hang around this board that have not progressed beyound stage I, especially how many that have not had additional primaries.  They are out living life and seldem, if ever, drop back in. 

                                                                                                   Janner has a email group that would be a better representtion and not scare you as much as we do.  She only allows Stage 1 participants.  You can contact her from her contact point on her user profile.

                                                                                                 Be vigilant, not paranoid.   Don't sweat it when people tell you that you are CURED and have nothing to worry about.  It takes about a year for the terror to ease (not disappear) so that you can more enjoy the new reality of your position.

                                                                                                 LOOK up:    The Things I Wish I Were Told When I Was Diagnosed With Cancer
                                                                                              http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
                                                                                               

                                                                                               

                                                                                              Bubbles
                                                                                              Participant

                                                                                                To the original anon….

                                                                                                Yes, like Jerry I've read all these comments and have not known what to say to you all.  One point that often gets lost is this:

                                                                                                Definitions to keep in mind:
                                                                                                Thickness (Breslow) – actual thickest part of a slice of the tumor…remembering that the lesion can rise above the level of your skin.
                                                                                                Clark level – a description of how deeply the tumor penetrated the layers of your skin.

                                                                                                However, even then…researchers are having a hard time determining whether mitotic rate, size of lesion…in any diminsion…age, tumor location, etc….is THE factor that makes one person have a positive node (or not) and progress (or not).  There is no specific answer.  Nor is there any known answer as to why some progress quickly or others progress many years down the road.

                                                                                                Cure is a very tricky word.  But as Jerry noted in regard to IL2, some docs have begun to use the word with caution in relation to patients having been treated with ipi….an article came out in September of 2013….and are now 10 years out with no progression.  With even more caution, given the shorter time span since its use was begun in clinical trials, they have murmured the word regarding some patients treated with anti-PD1, who are now more than 4 years out.  And while this is all good news in terms of melanoma treatment….hopefully, this treatment data will never apply to you, as you have a good chance that you will not need them.

                                                                                                Vigilence would be wise.  Living life every minute to the best of our abilitity is also wise….for all of us. 

                                                                                                Wishing you my best.  Celeste

                                                                                                 

                                                                                                 

                                                                                                Bubbles
                                                                                                Participant

                                                                                                  To the original anon….

                                                                                                  Yes, like Jerry I've read all these comments and have not known what to say to you all.  One point that often gets lost is this:

                                                                                                  Definitions to keep in mind:
                                                                                                  Thickness (Breslow) – actual thickest part of a slice of the tumor…remembering that the lesion can rise above the level of your skin.
                                                                                                  Clark level – a description of how deeply the tumor penetrated the layers of your skin.

                                                                                                  However, even then…researchers are having a hard time determining whether mitotic rate, size of lesion…in any diminsion…age, tumor location, etc….is THE factor that makes one person have a positive node (or not) and progress (or not).  There is no specific answer.  Nor is there any known answer as to why some progress quickly or others progress many years down the road.

                                                                                                  Cure is a very tricky word.  But as Jerry noted in regard to IL2, some docs have begun to use the word with caution in relation to patients having been treated with ipi….an article came out in September of 2013….and are now 10 years out with no progression.  With even more caution, given the shorter time span since its use was begun in clinical trials, they have murmured the word regarding some patients treated with anti-PD1, who are now more than 4 years out.  And while this is all good news in terms of melanoma treatment….hopefully, this treatment data will never apply to you, as you have a good chance that you will not need them.

                                                                                                  Vigilence would be wise.  Living life every minute to the best of our abilitity is also wise….for all of us. 

                                                                                                  Wishing you my best.  Celeste

                                                                                                   

                                                                                                   

                                                                                                    Happy_girl
                                                                                                    Participant

                                                                                                      Thanks Celeste!  I also pray that I will not have to use them.  I know the word cure is tricky…. And probably not really used due to the mysteriousness of melanoma.  Thank you for taking your time to encourage a newbie like me!  I hope all is going well for you and everyone who had commented on this thread right now too! 

                                                                                                      Happy_girl
                                                                                                      Participant

                                                                                                        Thanks Celeste!  I also pray that I will not have to use them.  I know the word cure is tricky…. And probably not really used due to the mysteriousness of melanoma.  Thank you for taking your time to encourage a newbie like me!  I hope all is going well for you and everyone who had commented on this thread right now too! 

                                                                                                        Happy_girl
                                                                                                        Participant

                                                                                                          Thanks Celeste!  I also pray that I will not have to use them.  I know the word cure is tricky…. And probably not really used due to the mysteriousness of melanoma.  Thank you for taking your time to encourage a newbie like me!  I hope all is going well for you and everyone who had commented on this thread right now too! 

                                                                                                        Bubbles
                                                                                                        Participant

                                                                                                          To the original anon….

                                                                                                          Yes, like Jerry I've read all these comments and have not known what to say to you all.  One point that often gets lost is this:

                                                                                                          Definitions to keep in mind:
                                                                                                          Thickness (Breslow) – actual thickest part of a slice of the tumor…remembering that the lesion can rise above the level of your skin.
                                                                                                          Clark level – a description of how deeply the tumor penetrated the layers of your skin.

                                                                                                          However, even then…researchers are having a hard time determining whether mitotic rate, size of lesion…in any diminsion…age, tumor location, etc….is THE factor that makes one person have a positive node (or not) and progress (or not).  There is no specific answer.  Nor is there any known answer as to why some progress quickly or others progress many years down the road.

                                                                                                          Cure is a very tricky word.  But as Jerry noted in regard to IL2, some docs have begun to use the word with caution in relation to patients having been treated with ipi….an article came out in September of 2013….and are now 10 years out with no progression.  With even more caution, given the shorter time span since its use was begun in clinical trials, they have murmured the word regarding some patients treated with anti-PD1, who are now more than 4 years out.  And while this is all good news in terms of melanoma treatment….hopefully, this treatment data will never apply to you, as you have a good chance that you will not need them.

                                                                                                          Vigilence would be wise.  Living life every minute to the best of our abilitity is also wise….for all of us. 

                                                                                                          Wishing you my best.  Celeste

                                                                                                           

                                                                                                           

                                                                                                          braunerk
                                                                                                          Participant

                                                                                                            I was stage 2a in 2007 and went 6 years before 3b diagnosis. My doctor thought I would go along time before continuing on but a year later I am stage 4 with mets in my belly and my lung. So moving along can happen. The new treatments make me sure that even though I have progressed I will be here for a long time. I am strating ippi this week and hope to get into PD-1 compasionate use to treat this beast. 

                                                                                                            braunerk
                                                                                                            Participant

                                                                                                              I was stage 2a in 2007 and went 6 years before 3b diagnosis. My doctor thought I would go along time before continuing on but a year later I am stage 4 with mets in my belly and my lung. So moving along can happen. The new treatments make me sure that even though I have progressed I will be here for a long time. I am strating ippi this week and hope to get into PD-1 compasionate use to treat this beast. 

                                                                                                                killmel
                                                                                                                Participant

                                                                                                                  To original anon

                                                                                                                   

                                                                                                                  I know that you are freightened but It sounds like you only "'thank"  & comment to those who left you "positive" comments. Those who told you their stories of not being "cured" moving to stage 4,etc. are trying to help you realize the "reality of being DX with Melanomo. Face it, your life has CHANGED!!!!!!

                                                                                                                  It sounds like you just want to put your "head in the sand"and want to only hear what you want to hear. I hope that you do not progress because it appears you have a problem facing reality. My advice to you, is just stay  vigilant, try to live life to the fullest and hope & pray you do not progress. There are no "guarantees" with melanoma and melanoma is totally unpredictable. NO ONE is going to guarantee that surgery got all the cancer cells. It will all come down to how effective is your immune system!  I was dx stage 1 with a depth of .9mm and now I am stage 4. Such is life,living with a melanoma diagnosis.

                                                                                                                  killmel
                                                                                                                  Participant

                                                                                                                    To original anon

                                                                                                                     

                                                                                                                    I know that you are freightened but It sounds like you only "'thank"  & comment to those who left you "positive" comments. Those who told you their stories of not being "cured" moving to stage 4,etc. are trying to help you realize the "reality of being DX with Melanomo. Face it, your life has CHANGED!!!!!!

                                                                                                                    It sounds like you just want to put your "head in the sand"and want to only hear what you want to hear. I hope that you do not progress because it appears you have a problem facing reality. My advice to you, is just stay  vigilant, try to live life to the fullest and hope & pray you do not progress. There are no "guarantees" with melanoma and melanoma is totally unpredictable. NO ONE is going to guarantee that surgery got all the cancer cells. It will all come down to how effective is your immune system!  I was dx stage 1 with a depth of .9mm and now I am stage 4. Such is life,living with a melanoma diagnosis.

                                                                                                                    JC
                                                                                                                    Participant

                                                                                                                      There are no guarantees with anything, melanoma is not unique to that.  No guarantees with heart health, other cancer types, driving a car, riding a bike, swimming……  I think sometimes melanoma is given this mystical power of unpredictability in the melanoma community, but that is not unique to melanoma, that is life.

                                                                                                                      JC
                                                                                                                      Participant

                                                                                                                        There are no guarantees with anything, melanoma is not unique to that.  No guarantees with heart health, other cancer types, driving a car, riding a bike, swimming……  I think sometimes melanoma is given this mystical power of unpredictability in the melanoma community, but that is not unique to melanoma, that is life.

                                                                                                                        JC
                                                                                                                        Participant

                                                                                                                          "statistics are meaningless. You are an individual & not a number."

                                                                                                                           

                                                                                                                          I'm not sure why stats are given such a bad rap.  It's not like these numbers are pulled out of thin air, they are based on large group analysis of real cases over time, studied and analyzed by realy smart people.  I get that survival stats from a long time ago before these recent treatments don't have as much meaning, but the stats such as 90% of stage 1b not progressing, why is that meaningless?  That is not real, not based on tens of thousands of cases? 

                                                                                                                          JC
                                                                                                                          Participant

                                                                                                                            "statistics are meaningless. You are an individual & not a number."

                                                                                                                             

                                                                                                                            I'm not sure why stats are given such a bad rap.  It's not like these numbers are pulled out of thin air, they are based on large group analysis of real cases over time, studied and analyzed by realy smart people.  I get that survival stats from a long time ago before these recent treatments don't have as much meaning, but the stats such as 90% of stage 1b not progressing, why is that meaningless?  That is not real, not based on tens of thousands of cases? 

                                                                                                                            Momrn5
                                                                                                                            Participant

                                                                                                                              Exactly!  I find it quite irritating that people say that Melanoma can't be cured.  It can. My husband is living proof.  He was dx. With Melanoma at 35 and has a large skin graft to show for it. He is now 60.  I call that surgery curative for him.  I had a long discussion with my doctor about stats.  Though I think they could be better. Did you know that the stats for melanoma do not take into account whether or not the person died from melanoma?  The person could get killed in a car accident 4 years after a melanoma dx. And he goes down as a  death stat for melanoma.  From the American Cancer Society. "The following survival rates are based on nearly 60,000 patients who were part of the 2008 AJCC Melanoma Staging Database. These are observed survival rates. They include some people diagnosed with melanoma who may have later died from other causes, such as heart disease. Therefore, the percentage of people surviving the melanoma itself may be higher."  

                                                                                                                              Momrn5
                                                                                                                              Participant

                                                                                                                                Exactly!  I find it quite irritating that people say that Melanoma can't be cured.  It can. My husband is living proof.  He was dx. With Melanoma at 35 and has a large skin graft to show for it. He is now 60.  I call that surgery curative for him.  I had a long discussion with my doctor about stats.  Though I think they could be better. Did you know that the stats for melanoma do not take into account whether or not the person died from melanoma?  The person could get killed in a car accident 4 years after a melanoma dx. And he goes down as a  death stat for melanoma.  From the American Cancer Society. "The following survival rates are based on nearly 60,000 patients who were part of the 2008 AJCC Melanoma Staging Database. These are observed survival rates. They include some people diagnosed with melanoma who may have later died from other causes, such as heart disease. Therefore, the percentage of people surviving the melanoma itself may be higher."  

                                                                                                                                JC
                                                                                                                                Participant

                                                                                                                                  "He was dx. With Melanoma at 35 and has a large skin graft to show for it. He is now 60.  I call that surgery curative for him"

                                                                                                                                   

                                                                                                                                  these are the stories we need to hear more of!

                                                                                                                                  Happy_girl
                                                                                                                                  Participant

                                                                                                                                    I feel that way too!  It helps with the anxiety.

                                                                                                                                    Happy_girl
                                                                                                                                    Participant

                                                                                                                                      I feel that way too!  It helps with the anxiety.

                                                                                                                                      Happy_girl
                                                                                                                                      Participant

                                                                                                                                        I feel that way too!  It helps with the anxiety.

                                                                                                                                        Silva
                                                                                                                                        Participant

                                                                                                                                          I do agree with you. People who post the worse outcome are scarring the newly diagnosed. Talk to your doctor and the best thing to do is stay off these sites . It will give you anxiety and depression. Not good.

                                                                                                                                           

                                                                                                                                          thanks for your positive input. 

                                                                                                                                          Silva
                                                                                                                                          Participant

                                                                                                                                            I do agree with you. People who post the worse outcome are scarring the newly diagnosed. Talk to your doctor and the best thing to do is stay off these sites . It will give you anxiety and depression. Not good.

                                                                                                                                             

                                                                                                                                            thanks for your positive input. 

                                                                                                                                            Silva
                                                                                                                                            Participant

                                                                                                                                              I do agree with you. People who post the worse outcome are scarring the newly diagnosed. Talk to your doctor and the best thing to do is stay off these sites . It will give you anxiety and depression. Not good.

                                                                                                                                               

                                                                                                                                              thanks for your positive input. 

                                                                                                                                              JC
                                                                                                                                              Participant

                                                                                                                                                "He was dx. With Melanoma at 35 and has a large skin graft to show for it. He is now 60.  I call that surgery curative for him"

                                                                                                                                                 

                                                                                                                                                these are the stories we need to hear more of!

                                                                                                                                                JC
                                                                                                                                                Participant

                                                                                                                                                  "He was dx. With Melanoma at 35 and has a large skin graft to show for it. He is now 60.  I call that surgery curative for him"

                                                                                                                                                   

                                                                                                                                                  these are the stories we need to hear more of!

                                                                                                                                                  Momrn5
                                                                                                                                                  Participant

                                                                                                                                                    Exactly!  I find it quite irritating that people say that Melanoma can't be cured.  It can. My husband is living proof.  He was dx. With Melanoma at 35 and has a large skin graft to show for it. He is now 60.  I call that surgery curative for him.  I had a long discussion with my doctor about stats.  Though I think they could be better. Did you know that the stats for melanoma do not take into account whether or not the person died from melanoma?  The person could get killed in a car accident 4 years after a melanoma dx. And he goes down as a  death stat for melanoma.  From the American Cancer Society. "The following survival rates are based on nearly 60,000 patients who were part of the 2008 AJCC Melanoma Staging Database. These are observed survival rates. They include some people diagnosed with melanoma who may have later died from other causes, such as heart disease. Therefore, the percentage of people surviving the melanoma itself may be higher."  

                                                                                                                                                    JC
                                                                                                                                                    Participant

                                                                                                                                                      "statistics are meaningless. You are an individual & not a number."

                                                                                                                                                       

                                                                                                                                                      I'm not sure why stats are given such a bad rap.  It's not like these numbers are pulled out of thin air, they are based on large group analysis of real cases over time, studied and analyzed by realy smart people.  I get that survival stats from a long time ago before these recent treatments don't have as much meaning, but the stats such as 90% of stage 1b not progressing, why is that meaningless?  That is not real, not based on tens of thousands of cases? 

                                                                                                                                                      Happy_girl
                                                                                                                                                      Participant

                                                                                                                                                        Very true! 

                                                                                                                                                        Happy_girl
                                                                                                                                                        Participant

                                                                                                                                                          Very true! 

                                                                                                                                                          Happy_girl
                                                                                                                                                          Participant

                                                                                                                                                            Very true! 

                                                                                                                                                            Happy_girl
                                                                                                                                                            Participant

                                                                                                                                                              Very true!

                                                                                                                                                              Happy_girl
                                                                                                                                                              Participant

                                                                                                                                                                Very true!

                                                                                                                                                                Happy_girl
                                                                                                                                                                Participant

                                                                                                                                                                  Very true!

                                                                                                                                                                  JC
                                                                                                                                                                  Participant

                                                                                                                                                                    There are no guarantees with anything, melanoma is not unique to that.  No guarantees with heart health, other cancer types, driving a car, riding a bike, swimming……  I think sometimes melanoma is given this mystical power of unpredictability in the melanoma community, but that is not unique to melanoma, that is life.

                                                                                                                                                                    Happy_girl
                                                                                                                                                                    Participant

                                                                                                                                                                      Don't worry…. I completely understand that my life has changed.  I like to believe that I'm not putting my head in the sand as you stated- but hoping.  I do appreciate the stories of the others too, I just didn't jnow how to comment.  Thank you for pointing out my error and giving another perspective. 

                                                                                                                                                                      Happy_girl
                                                                                                                                                                      Participant

                                                                                                                                                                        Don't worry…. I completely understand that my life has changed.  I like to believe that I'm not putting my head in the sand as you stated- but hoping.  I do appreciate the stories of the others too, I just didn't jnow how to comment.  Thank you for pointing out my error and giving another perspective. 

                                                                                                                                                                        Happy_girl
                                                                                                                                                                        Participant

                                                                                                                                                                          Sorry- meant to post this about 3 comments up- lol

                                                                                                                                                                          Happy_girl
                                                                                                                                                                          Participant

                                                                                                                                                                            Sorry- meant to post this about 3 comments up- lol

                                                                                                                                                                            Happy_girl
                                                                                                                                                                            Participant

                                                                                                                                                                              Sorry- meant to post this about 3 comments up- lol

                                                                                                                                                                              Happy_girl
                                                                                                                                                                              Participant

                                                                                                                                                                                Don't worry…. I completely understand that my life has changed.  I like to believe that I'm not putting my head in the sand as you stated- but hoping.  I do appreciate the stories of the others too, I just didn't jnow how to comment.  Thank you for pointing out my error and giving another perspective. 

                                                                                                                                                                                Happy_girl
                                                                                                                                                                                Participant

                                                                                                                                                                                  Sorry- I did reply to this, but I put it at the wrong spot ( about 3 comments down.). I appreciate your honesty- thank you!

                                                                                                                                                                                  Happy_girl
                                                                                                                                                                                  Participant

                                                                                                                                                                                    Sorry- I did reply to this, but I put it at the wrong spot ( about 3 comments down.). I appreciate your honesty- thank you!

                                                                                                                                                                                    Happy_girl
                                                                                                                                                                                    Participant

                                                                                                                                                                                      Sorry- I did reply to this, but I put it at the wrong spot ( about 3 comments down.). I appreciate your honesty- thank you!

                                                                                                                                                                                      killmel
                                                                                                                                                                                      Participant

                                                                                                                                                                                        To original anon

                                                                                                                                                                                         

                                                                                                                                                                                        I know that you are freightened but It sounds like you only "'thank"  & comment to those who left you "positive" comments. Those who told you their stories of not being "cured" moving to stage 4,etc. are trying to help you realize the "reality of being DX with Melanomo. Face it, your life has CHANGED!!!!!!

                                                                                                                                                                                        It sounds like you just want to put your "head in the sand"and want to only hear what you want to hear. I hope that you do not progress because it appears you have a problem facing reality. My advice to you, is just stay  vigilant, try to live life to the fullest and hope & pray you do not progress. There are no "guarantees" with melanoma and melanoma is totally unpredictable. NO ONE is going to guarantee that surgery got all the cancer cells. It will all come down to how effective is your immune system!  I was dx stage 1 with a depth of .9mm and now I am stage 4. Such is life,living with a melanoma diagnosis.

                                                                                                                                                                                      braunerk
                                                                                                                                                                                      Participant

                                                                                                                                                                                        I was stage 2a in 2007 and went 6 years before 3b diagnosis. My doctor thought I would go along time before continuing on but a year later I am stage 4 with mets in my belly and my lung. So moving along can happen. The new treatments make me sure that even though I have progressed I will be here for a long time. I am strating ippi this week and hope to get into PD-1 compasionate use to treat this beast. 

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