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mucosal melanoma

› Forums › Mucosal Melanoma Community › mucosal melanoma

  • Post
    • January 15, 2014 at 4:41 pm
    ciphillips
    Participant

      My wife had vaginal mucosal melanoma.  Treated with surgery and 3 rounds of Bio-Chemo at MD Anderson.  It now appears she may have a met to the lung.  Genetically her tumor is NRAS mutation, WT for BRAF.

      I am looking for alternatives for treatment under the following circumstances:  the tumor is not surgically recetible or if it is for adjuvant treatment. 

      I would also be interested in Clinical Trials.

      thank you

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    • Replies
        • January 15, 2014 at 5:38 pm
        JerryfromFauq
        Participant

          I have anal mucosal melanoma of the C-kit variety. Received a 20 month reprieve from IL-2.   Recently NIH released a review study that showed that NRAS mutation patients have had a 47% postitive response to HD IL-2.  The  I will be glad to communicate further.  There are some clinical trials now using IL-2 and vacines that have further increased the odds when using IL-2 as ones immunology treatment.  IL-2 can be tough to do, but is definitely do-able.  There is also a chance (AT least 5%) that IL-2 will cure the across the board melanoma patient.

           

            • January 15, 2014 at 8:46 pm
            Phil S
            Participant

              My husband, Phil also has anal mucosal melanoma.  He also went to Stage 4 with one lung tumor in July 2011, and had surgery in Boston.  However, a few months later the cancer had spread to both lungs, stomach cavity, and brain. Phil had brain surgery, and then went to MDAnderson for six rounds of biochemo and TIL. He has been stable since TIL, which included two full rounds of high dose IL2.  Who really knows what works to stop this disease in its tracks.  I would ask them about removing the tumor for TIL harvest, a great option to have in your back pocket especially since you are at MDAnderson!!  All the best, Valerie (Phil's wife)

              • December 18, 2017 at 2:57 pm
              Kendra23
              Participant

                I am new to this forum and I have some questions regarding Mucosal Melanoma treatments.  Currently I am stage 4 and has metastasized 2 times in 2 years and while on chemo. I am waiting to get into a TIL clinical trial and wondering if anyone knows if this has worked for my kind of cancer

                • January 15, 2014 at 8:46 pm
                Phil S
                Participant

                  My husband, Phil also has anal mucosal melanoma.  He also went to Stage 4 with one lung tumor in July 2011, and had surgery in Boston.  However, a few months later the cancer had spread to both lungs, stomach cavity, and brain. Phil had brain surgery, and then went to MDAnderson for six rounds of biochemo and TIL. He has been stable since TIL, which included two full rounds of high dose IL2.  Who really knows what works to stop this disease in its tracks.  I would ask them about removing the tumor for TIL harvest, a great option to have in your back pocket especially since you are at MDAnderson!!  All the best, Valerie (Phil's wife)

                  • January 15, 2014 at 8:46 pm
                  Phil S
                  Participant

                    My husband, Phil also has anal mucosal melanoma.  He also went to Stage 4 with one lung tumor in July 2011, and had surgery in Boston.  However, a few months later the cancer had spread to both lungs, stomach cavity, and brain. Phil had brain surgery, and then went to MDAnderson for six rounds of biochemo and TIL. He has been stable since TIL, which included two full rounds of high dose IL2.  Who really knows what works to stop this disease in its tracks.  I would ask them about removing the tumor for TIL harvest, a great option to have in your back pocket especially since you are at MDAnderson!!  All the best, Valerie (Phil's wife)

                  • January 15, 2014 at 5:38 pm
                  JerryfromFauq
                  Participant

                    I have anal mucosal melanoma of the C-kit variety. Received a 20 month reprieve from IL-2.   Recently NIH released a review study that showed that NRAS mutation patients have had a 47% postitive response to HD IL-2.  The  I will be glad to communicate further.  There are some clinical trials now using IL-2 and vacines that have further increased the odds when using IL-2 as ones immunology treatment.  IL-2 can be tough to do, but is definitely do-able.  There is also a chance (AT least 5%) that IL-2 will cure the across the board melanoma patient.

                     

                    • January 15, 2014 at 5:38 pm
                    JerryfromFauq
                    Participant

                      I have anal mucosal melanoma of the C-kit variety. Received a 20 month reprieve from IL-2.   Recently NIH released a review study that showed that NRAS mutation patients have had a 47% postitive response to HD IL-2.  The  I will be glad to communicate further.  There are some clinical trials now using IL-2 and vacines that have further increased the odds when using IL-2 as ones immunology treatment.  IL-2 can be tough to do, but is definitely do-able.  There is also a chance (AT least 5%) that IL-2 will cure the across the board melanoma patient.

                       

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