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Vulvar Melanoma

› Forums › General Melanoma Community › Vulvar Melanoma

  • Post
    • November 20, 2013 at 4:32 am
    Alli
    Participant

      Anybody still out there?? It's been a while.

    Viewing 6 reply threads
    • Replies
        • November 23, 2013 at 12:30 am
        Everymoment
        Participant

          Yep, I'm still kicking. About 5 years out now. How are you? 

            • November 25, 2013 at 2:05 pm
            mary1233
            Participant

              I have mucosal melanoma originating in the vagina (close) and am almost one year post surgry. I went six rounds of chemo with temodar and cisplatin and they tell me I am in remission although they can't tell me if the chemo was at all beneficial.

               

              Considering an average four year survival – I think you are my role model at the moment.

               

              Are you following the immunotherapy research?  

               

              Good luck to all.

              Anna

              • November 25, 2013 at 2:05 pm
              mary1233
              Participant

                I have mucosal melanoma originating in the vagina (close) and am almost one year post surgry. I went six rounds of chemo with temodar and cisplatin and they tell me I am in remission although they can't tell me if the chemo was at all beneficial.

                 

                Considering an average four year survival – I think you are my role model at the moment.

                 

                Are you following the immunotherapy research?  

                 

                Good luck to all.

                Anna

                • November 25, 2013 at 2:05 pm
                mary1233
                Participant

                  I have mucosal melanoma originating in the vagina (close) and am almost one year post surgry. I went six rounds of chemo with temodar and cisplatin and they tell me I am in remission although they can't tell me if the chemo was at all beneficial.

                   

                  Considering an average four year survival – I think you are my role model at the moment.

                   

                  Are you following the immunotherapy research?  

                   

                  Good luck to all.

                  Anna

                • November 23, 2013 at 12:30 am
                Everymoment
                Participant

                  Yep, I'm still kicking. About 5 years out now. How are you? 

                  • November 23, 2013 at 12:30 am
                  Everymoment
                  Participant

                    Yep, I'm still kicking. About 5 years out now. How are you? 

                    • November 25, 2013 at 11:09 pm
                    Mary-E
                    Participant

                      I'm almost 4 years out from Vulvar stage 3…no treatment other than surgery.  Feeling very lucky!

                      • November 25, 2013 at 11:09 pm
                      Mary-E
                      Participant

                        I'm almost 4 years out from Vulvar stage 3…no treatment other than surgery.  Feeling very lucky!

                        • November 25, 2013 at 11:09 pm
                        Mary-E
                        Participant

                          I'm almost 4 years out from Vulvar stage 3…no treatment other than surgery.  Feeling very lucky!

                          • October 12, 2020 at 1:42 pm
                          LB in Seattle
                          Participant
                            Just joined this forum. My primary was on my left labia minora; had a partial radical vulvectomy and clean sentinel nodes in January 2019, just had a recurrent in my lymph nodes a year and a half later, surgery to dissect them out three weeks ago.. About to start some kind of immune therapy- discussion with doc on 10/27, probably Opdivo. Was staged at 1B at time of initial diagnosis, and doc says that because this was considered a local recurrence rather than a met that my staging hasn’t changed- but the risk of a met has now gone up.

                            So it’s good to find other women who’ve had vulvar melanoma, given its rarity. My father died of this disease before there were immune therapies. Do any of you also have a parent who had melanoma? My doc thinks that mine must be genetic given the site, but I don’t test positive for any of the known genetic factors.

                        Viewing 6 reply threads
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