Lupus and Melanoma

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    • September 16, 2015 at 4:57 pm
    peppi
    Participant

      I have both Lupus and Melanoma and am finding it difficult ot find treatment options other then surgery as my oncologists will not give me immunotherapy due to the Lupus. Does any one know of other treatment options or trials for those with both Lupus and Melanoma? I am stage iv with my 2nd wide excision on July 11th 2015. My treatment plan is to repeat ct in two weeks with close monitor. I had mets to one node under my right armpit. The idea of monitor and wait to see is not comforting. Any suggestions?

       

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    • Replies
        • September 17, 2015 at 12:54 am
        vivian
        Participant

          Peppi,

          i do not have Lupus, but I did have a bone marrow transplant 13 years ago in treatment for myelodysplastic syndrome .  Melanoma oncologists have similar fear about immunotherapy for me, because it could cause a rejection of my immune system. I have been stage 4 since 2012 with surgery only as treatment for the primary, lymph nodes, one in-transit, and two lung mets.  I am BRAF positive and understand that one of the BRAF therapies would be an option if surgery is no longer possible. Have you had that testing done?  In addition, I believe I read on the MIF site about someone with Lupus who was having some success with immunotherapy. Perhaps you can inquire there as well.

          I wish you the best in your search of options.. Please keep us informed!

          Lear

          • September 17, 2015 at 12:54 am
          vivian
          Participant

            Peppi,

            i do not have Lupus, but I did have a bone marrow transplant 13 years ago in treatment for myelodysplastic syndrome .  Melanoma oncologists have similar fear about immunotherapy for me, because it could cause a rejection of my immune system. I have been stage 4 since 2012 with surgery only as treatment for the primary, lymph nodes, one in-transit, and two lung mets.  I am BRAF positive and understand that one of the BRAF therapies would be an option if surgery is no longer possible. Have you had that testing done?  In addition, I believe I read on the MIF site about someone with Lupus who was having some success with immunotherapy. Perhaps you can inquire there as well.

            I wish you the best in your search of options.. Please keep us informed!

            Lear

              • September 19, 2015 at 6:19 pm
              peppi
              Participant

                They are testing the braf mutation. No results yet. They said they would not give immuno therapy unless I were terminal.

                 

                • September 19, 2015 at 6:19 pm
                peppi
                Participant

                  They are testing the braf mutation. No results yet. They said they would not give immuno therapy unless I were terminal.

                   

                  • September 19, 2015 at 6:19 pm
                  peppi
                  Participant

                    They are testing the braf mutation. No results yet. They said they would not give immuno therapy unless I were terminal.

                     

                  • September 17, 2015 at 12:54 am
                  vivian
                  Participant

                    Peppi,

                    i do not have Lupus, but I did have a bone marrow transplant 13 years ago in treatment for myelodysplastic syndrome .  Melanoma oncologists have similar fear about immunotherapy for me, because it could cause a rejection of my immune system. I have been stage 4 since 2012 with surgery only as treatment for the primary, lymph nodes, one in-transit, and two lung mets.  I am BRAF positive and understand that one of the BRAF therapies would be an option if surgery is no longer possible. Have you had that testing done?  In addition, I believe I read on the MIF site about someone with Lupus who was having some success with immunotherapy. Perhaps you can inquire there as well.

                    I wish you the best in your search of options.. Please keep us informed!

                    Lear

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