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Stage IV and in my heart
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Stage IV and in my heart

› Forums › General Melanoma Community › Stage IV and in my heart

  • Post
    • March 24, 2015 at 7:26 pm
    Cathy.Welch46
    Participant

      has anyone else had to experience this and what treatments have you tried.  Do you know someone who had and did not  make it? 

    Viewing 11 reply threads
    • Replies
        • March 25, 2015 at 7:40 am
        Kim K
        Participant

          I forgot but I think it was Gene S from Florida that was treated at Moffit.  He had mel to his aorta.  He was treated using real time cyber knife I think, it got it and he was alive the last I heard.  If that is who it was, he was treated several years ago.  Went through He11 and back but did very well.  They zapped his heart while still beating.  Was experimental as they were testing the computer software to be able to do that kind of thing.

          The scary part was, if too much radiation to the aorta and develops tissue necrosis, it could have ruptured leading to a dramatic and sudden death.  Fortunately that didn't happen.  Carole K and Don W will probably remember better than I, or even Janner.  He may have even had something on his pericardial sac.

          So sorry to hear, but there may be some hope.  Just got to get to the right center.

          • March 25, 2015 at 7:40 am
          Kim K
          Participant

            I forgot but I think it was Gene S from Florida that was treated at Moffit.  He had mel to his aorta.  He was treated using real time cyber knife I think, it got it and he was alive the last I heard.  If that is who it was, he was treated several years ago.  Went through He11 and back but did very well.  They zapped his heart while still beating.  Was experimental as they were testing the computer software to be able to do that kind of thing.

            The scary part was, if too much radiation to the aorta and develops tissue necrosis, it could have ruptured leading to a dramatic and sudden death.  Fortunately that didn't happen.  Carole K and Don W will probably remember better than I, or even Janner.  He may have even had something on his pericardial sac.

            So sorry to hear, but there may be some hope.  Just got to get to the right center.

              • March 26, 2015 at 12:58 am
              Gene_S
              Participant

                It was not Gene S.

                • March 27, 2015 at 8:58 am
                Kim K
                Participant

                  My bad.  I don't know if this new site can pull up the older MPIP posts.  I remember reading about that person prior to my stage IV diagnosis in '09, so it was a few years before then.  Glad you are here though *smile*.

                  • March 27, 2015 at 8:58 am
                  Kim K
                  Participant

                    My bad.  I don't know if this new site can pull up the older MPIP posts.  I remember reading about that person prior to my stage IV diagnosis in '09, so it was a few years before then.  Glad you are here though *smile*.

                    • March 27, 2015 at 8:58 am
                    Kim K
                    Participant

                      My bad.  I don't know if this new site can pull up the older MPIP posts.  I remember reading about that person prior to my stage IV diagnosis in '09, so it was a few years before then.  Glad you are here though *smile*.

                      • March 26, 2015 at 12:58 am
                      Gene_S
                      Participant

                        It was not Gene S.

                        • March 26, 2015 at 12:58 am
                        Gene_S
                        Participant

                          It was not Gene S.

                        • March 25, 2015 at 7:40 am
                        Kim K
                        Participant

                          I forgot but I think it was Gene S from Florida that was treated at Moffit.  He had mel to his aorta.  He was treated using real time cyber knife I think, it got it and he was alive the last I heard.  If that is who it was, he was treated several years ago.  Went through He11 and back but did very well.  They zapped his heart while still beating.  Was experimental as they were testing the computer software to be able to do that kind of thing.

                          The scary part was, if too much radiation to the aorta and develops tissue necrosis, it could have ruptured leading to a dramatic and sudden death.  Fortunately that didn't happen.  Carole K and Don W will probably remember better than I, or even Janner.  He may have even had something on his pericardial sac.

                          So sorry to hear, but there may be some hope.  Just got to get to the right center.

                          • March 25, 2015 at 11:19 pm
                          arthurjedi007
                          Participant

                            I think it was Eva ecc26 who had Mel around the aorta and a lot of other places. I could be remembering wrong but I think so. I also think it was around I dunno about in.

                            But anyway she's doing great as you can see in her post the other day. After trying many things she made it to keytruda which was the one med that worked awesome for her.

                            Artie

                            • March 25, 2015 at 11:19 pm
                            arthurjedi007
                            Participant

                              I think it was Eva ecc26 who had Mel around the aorta and a lot of other places. I could be remembering wrong but I think so. I also think it was around I dunno about in.

                              But anyway she's doing great as you can see in her post the other day. After trying many things she made it to keytruda which was the one med that worked awesome for her.

                              Artie

                              • March 25, 2015 at 11:19 pm
                              arthurjedi007
                              Participant

                                I think it was Eva ecc26 who had Mel around the aorta and a lot of other places. I could be remembering wrong but I think so. I also think it was around I dunno about in.

                                But anyway she's doing great as you can see in her post the other day. After trying many things she made it to keytruda which was the one med that worked awesome for her.

                                Artie

                                • March 26, 2015 at 2:42 pm
                                sweetaugust
                                Participant

                                  I had melanoma in the nodes wrapped around my heart.  Also in the nodes in both arm pits and behind my chest wall, and a mass on my liver.  But the Keytruda took over and did it's thing before anything worse happened there. 

                                  All my best to you, Laurie

                                  • March 26, 2015 at 2:42 pm
                                  sweetaugust
                                  Participant

                                    I had melanoma in the nodes wrapped around my heart.  Also in the nodes in both arm pits and behind my chest wall, and a mass on my liver.  But the Keytruda took over and did it's thing before anything worse happened there. 

                                    All my best to you, Laurie

                                    • March 26, 2015 at 2:42 pm
                                    sweetaugust
                                    Participant

                                      I had melanoma in the nodes wrapped around my heart.  Also in the nodes in both arm pits and behind my chest wall, and a mass on my liver.  But the Keytruda took over and did it's thing before anything worse happened there. 

                                      All my best to you, Laurie

                                      • March 30, 2015 at 7:07 pm
                                      buffcody
                                      Participant

                                        This is a link to a blog written by Amy Willett whom members of this group may remember from over a year go.  Amy not only waged a brave war against her Stage IV melanoma, but she shared her journey, her successes and failures, her deep faith and her wondrous writing ability and her deep faity with all on her blog, nashvegasmom, for five years before passing away a little more than a year ago.  I had the great privilege of knowing Amy from this site, and we kept up a regular email exchange for over a year.  Amy did have melanoma in the heart. The first discovery of it is described in this blog dating to 2012.  Unfortunately, it's development did play a major role in the melanoma progression.  I hope this is not the case when any of you.  

                                         

                                        I don't know what the access is to those of you who are not "friends" of hers on Facebook, but it is still a pleasure for me to see pictures of this courageous, loving woman and her family

                                         

                                        https://nashvegasmom2012.wordpress.com/

                                         

                                        Frank 

                                        • March 30, 2015 at 7:07 pm
                                        buffcody
                                        Participant

                                          This is a link to a blog written by Amy Willett whom members of this group may remember from over a year go.  Amy not only waged a brave war against her Stage IV melanoma, but she shared her journey, her successes and failures, her deep faith and her wondrous writing ability and her deep faity with all on her blog, nashvegasmom, for five years before passing away a little more than a year ago.  I had the great privilege of knowing Amy from this site, and we kept up a regular email exchange for over a year.  Amy did have melanoma in the heart. The first discovery of it is described in this blog dating to 2012.  Unfortunately, it's development did play a major role in the melanoma progression.  I hope this is not the case when any of you.  

                                           

                                          I don't know what the access is to those of you who are not "friends" of hers on Facebook, but it is still a pleasure for me to see pictures of this courageous, loving woman and her family

                                           

                                          https://nashvegasmom2012.wordpress.com/

                                           

                                          Frank 

                                          • March 30, 2015 at 7:07 pm
                                          buffcody
                                          Participant

                                            This is a link to a blog written by Amy Willett whom members of this group may remember from over a year go.  Amy not only waged a brave war against her Stage IV melanoma, but she shared her journey, her successes and failures, her deep faith and her wondrous writing ability and her deep faity with all on her blog, nashvegasmom, for five years before passing away a little more than a year ago.  I had the great privilege of knowing Amy from this site, and we kept up a regular email exchange for over a year.  Amy did have melanoma in the heart. The first discovery of it is described in this blog dating to 2012.  Unfortunately, it's development did play a major role in the melanoma progression.  I hope this is not the case when any of you.  

                                             

                                            I don't know what the access is to those of you who are not "friends" of hers on Facebook, but it is still a pleasure for me to see pictures of this courageous, loving woman and her family

                                             

                                            https://nashvegasmom2012.wordpress.com/

                                             

                                            Frank 

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