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273c

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      273c
      Participant

        You want Nivo or Keytruda but right now I am betting they aren't approved for stage IIIB.  I think watch and wait is a good option right now.  Part of what you want to watch for is if Nivo, Keytruda or Ipi gets approved for stage III. 

         

        Of course also go for your scans as recommended and watch for any skin changes. 

        Good Luck,

        Kathy

        273c
        Participant

          You want Nivo or Keytruda but right now I am betting they aren't approved for stage IIIB.  I think watch and wait is a good option right now.  Part of what you want to watch for is if Nivo, Keytruda or Ipi gets approved for stage III. 

           

          Of course also go for your scans as recommended and watch for any skin changes. 

          Good Luck,

          Kathy

          273c
          Participant

            You want Nivo or Keytruda but right now I am betting they aren't approved for stage IIIB.  I think watch and wait is a good option right now.  Part of what you want to watch for is if Nivo, Keytruda or Ipi gets approved for stage III. 

             

            Of course also go for your scans as recommended and watch for any skin changes. 

            Good Luck,

            Kathy

            273c
            Participant

              Could you travel and let them take the samples they want?   

              Kathy

              273c
              Participant

                Could you travel and let them take the samples they want?   

                Kathy

                273c
                Participant

                  Could you travel and let them take the samples they want?   

                  Kathy

                  273c
                  Participant

                    My husband is also stage IV, he had it in a lymph node and another internal tumor.  He had them completely removed by surgery and is now stage IV NED (no evidence of disease). Because there were two sites and because melanoma is what it is, he is on Opdivo to get any of the smaller mets that he might have had that the scans couldn't pick up. 

                     

                    Here's what I know.  First if you go hunting on the internet for statistical prognosis data on Melanoma it is all old and therefore wrong.   The survival rates are going to go way up in the next five year.  There are immunotherapy drugs that got apporved in the past year that are going to dramatically change that prognosis data. 

                    Big THANK YOU to the ratties!!!!yes

                     

                    Now those immunotherapy drugs, because they are new, are not approved for lower stages.  I have to agree I find it a bit odd that your husband is a stage IV with only one site.  But starting an immunotherapy drug like Opdivo or Keytruda might not be an option if he weren't a stage IV.  

                     

                    There is something about the uptake/contrast piece that makes a brain MRI different.  Melanoma shows up because it has a high metabolic rate.  Trouble is so does your brain so to see a brain met on an MRI you need a different contrast or setting or something.

                    Good Luck,

                    Kathy

                    273c
                    Participant

                      My husband is also stage IV, he had it in a lymph node and another internal tumor.  He had them completely removed by surgery and is now stage IV NED (no evidence of disease). Because there were two sites and because melanoma is what it is, he is on Opdivo to get any of the smaller mets that he might have had that the scans couldn't pick up. 

                       

                      Here's what I know.  First if you go hunting on the internet for statistical prognosis data on Melanoma it is all old and therefore wrong.   The survival rates are going to go way up in the next five year.  There are immunotherapy drugs that got apporved in the past year that are going to dramatically change that prognosis data. 

                      Big THANK YOU to the ratties!!!!yes

                       

                      Now those immunotherapy drugs, because they are new, are not approved for lower stages.  I have to agree I find it a bit odd that your husband is a stage IV with only one site.  But starting an immunotherapy drug like Opdivo or Keytruda might not be an option if he weren't a stage IV.  

                       

                      There is something about the uptake/contrast piece that makes a brain MRI different.  Melanoma shows up because it has a high metabolic rate.  Trouble is so does your brain so to see a brain met on an MRI you need a different contrast or setting or something.

                      Good Luck,

                      Kathy

                      273c
                      Participant

                        My husband is also stage IV, he had it in a lymph node and another internal tumor.  He had them completely removed by surgery and is now stage IV NED (no evidence of disease). Because there were two sites and because melanoma is what it is, he is on Opdivo to get any of the smaller mets that he might have had that the scans couldn't pick up. 

                         

                        Here's what I know.  First if you go hunting on the internet for statistical prognosis data on Melanoma it is all old and therefore wrong.   The survival rates are going to go way up in the next five year.  There are immunotherapy drugs that got apporved in the past year that are going to dramatically change that prognosis data. 

                        Big THANK YOU to the ratties!!!!yes

                         

                        Now those immunotherapy drugs, because they are new, are not approved for lower stages.  I have to agree I find it a bit odd that your husband is a stage IV with only one site.  But starting an immunotherapy drug like Opdivo or Keytruda might not be an option if he weren't a stage IV.  

                         

                        There is something about the uptake/contrast piece that makes a brain MRI different.  Melanoma shows up because it has a high metabolic rate.  Trouble is so does your brain so to see a brain met on an MRI you need a different contrast or setting or something.

                        Good Luck,

                        Kathy

                        273c
                        Participant

                          Get a port!

                          My husband's doc is an Opdivo guy.  He had some reason about amount of supporting research but as best I can figure Ketruda and Opdivo are about the same.   IIRC his belief was that Opdivo had been looking at it long enough that they had better data on all the dosage recommendations.  Not sure that is true, frankly I am not even sure I am remember it correctly because in that meeting we were talking about all sorts of things.  

                          We went with just the Opdivo and if anything pops then we might start the yervoy. 

                          My husband is stage IV NED and so far, first scans after the surgery (3months) he is still NED.   The big side effects are itching and fatigue.

                          Kathy

                          273c
                          Participant

                            Get a port!

                            My husband's doc is an Opdivo guy.  He had some reason about amount of supporting research but as best I can figure Ketruda and Opdivo are about the same.   IIRC his belief was that Opdivo had been looking at it long enough that they had better data on all the dosage recommendations.  Not sure that is true, frankly I am not even sure I am remember it correctly because in that meeting we were talking about all sorts of things.  

                            We went with just the Opdivo and if anything pops then we might start the yervoy. 

                            My husband is stage IV NED and so far, first scans after the surgery (3months) he is still NED.   The big side effects are itching and fatigue.

                            Kathy

                            273c
                            Participant

                              Get a port!

                              My husband's doc is an Opdivo guy.  He had some reason about amount of supporting research but as best I can figure Ketruda and Opdivo are about the same.   IIRC his belief was that Opdivo had been looking at it long enough that they had better data on all the dosage recommendations.  Not sure that is true, frankly I am not even sure I am remember it correctly because in that meeting we were talking about all sorts of things.  

                              We went with just the Opdivo and if anything pops then we might start the yervoy. 

                              My husband is stage IV NED and so far, first scans after the surgery (3months) he is still NED.   The big side effects are itching and fatigue.

                              Kathy

                              273c
                              Participant

                                It does sound farmilar.  Our docs wouldn't stage it until they got the results, after the surgery, from the second tumor.

                                We considered the wait and watch but with two sites it was obviously on the move.  A few months ago I did all sorts of research and I know what you mean about them looking bad if you don't really anaylize where those number come from. 

                                 

                                I don't see anything in the pathology report about epidermal component. 

                                 

                                I am hoping the immunotherapy knocks out anything left floating around.   I suspect my husband had a primary site a few years ago that his body dealt with.  

                                Kathy 

                                273c
                                Participant

                                  It does sound farmilar.  Our docs wouldn't stage it until they got the results, after the surgery, from the second tumor.

                                  We considered the wait and watch but with two sites it was obviously on the move.  A few months ago I did all sorts of research and I know what you mean about them looking bad if you don't really anaylize where those number come from. 

                                   

                                  I don't see anything in the pathology report about epidermal component. 

                                   

                                  I am hoping the immunotherapy knocks out anything left floating around.   I suspect my husband had a primary site a few years ago that his body dealt with.  

                                  Kathy 

                                  273c
                                  Participant

                                    It does sound farmilar.  Our docs wouldn't stage it until they got the results, after the surgery, from the second tumor.

                                    We considered the wait and watch but with two sites it was obviously on the move.  A few months ago I did all sorts of research and I know what you mean about them looking bad if you don't really anaylize where those number come from. 

                                     

                                    I don't see anything in the pathology report about epidermal component. 

                                     

                                    I am hoping the immunotherapy knocks out anything left floating around.   I suspect my husband had a primary site a few years ago that his body dealt with.  

                                    Kathy 

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