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Cutaneous met or mucosal?
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Cutaneous met or mucosal?

› Forums › Cutaneous Melanoma Community › Cutaneous met or mucosal?

  • Post
    • March 5, 2014 at 1:00 am
    mau
    Participant

      My primary and subsequent subq tumors were cutaneous. Initial diagnosis superficial spreading melanoma in situ. 5 years later groin node 4cm tumor. Fast forward to 10 years later and melanoma found in fibroid in uterus. Is this a cutaneous met or mucosal?  Does it matter in terms of treatment?  I am BRAF and cKit neg .  But not sure which tumor sample was used for testing (subq from arm or fibroid?) so am going to ask new oncologist to retest from fibroid sample if possible. Side question, can such testing be done a year post surgery?

      i had hysterectomy with fibroids removed but had new tumor in same place and on vaginal cuff last summer. Have completed pd1, ipi ,and radiation. Tumor stable but looking for next step so want to know if cutaneous or mucosal for possible options.

       

      Thanks for for any knowledge you have to pass on to me.  

    Viewing 11 reply threads
    • Replies
        • March 5, 2014 at 6:41 am
        JerryfromFauq
        Participant

          Have they checked for NRAS mutations?

          • March 5, 2014 at 6:41 am
          JerryfromFauq
          Participant

            Have they checked for NRAS mutations?

              • March 5, 2014 at 4:10 pm
              mau
              Participant

                I haven't heard of this. I have to ask my onc for such things and I will. What treatment option would this provide?

                thanks. 

                 

                • March 5, 2014 at 4:10 pm
                mau
                Participant

                  I haven't heard of this. I have to ask my onc for such things and I will. What treatment option would this provide?

                  thanks. 

                   

                  • March 5, 2014 at 4:10 pm
                  mau
                  Participant

                    I haven't heard of this. I have to ask my onc for such things and I will. What treatment option would this provide?

                    thanks. 

                     

                    • March 8, 2014 at 10:01 pm
                    maria d
                    Participant

                      Hi Jerry

                      I am new to the site, so excuse me if I don't follow Protocol, as I on't know all the rules.

                      I have Mucosal Rectal Melanoma.  The Tumor was resected January 2, and I am BRAF and CKIT Mutation free.

                      The Oncologists tried to enroll me in a clinical trial, but I was declined – NOT METASTATIC, yet.

                      So, they are jut monitoring me, for now.  What can you tell me abou this dreadful disease?

                      Thanks

                      Maria D

                       

                      • March 8, 2014 at 10:01 pm
                      maria d
                      Participant

                        Hi Jerry

                        I am new to the site, so excuse me if I don't follow Protocol, as I on't know all the rules.

                        I have Mucosal Rectal Melanoma.  The Tumor was resected January 2, and I am BRAF and CKIT Mutation free.

                        The Oncologists tried to enroll me in a clinical trial, but I was declined – NOT METASTATIC, yet.

                        So, they are jut monitoring me, for now.  What can you tell me abou this dreadful disease?

                        Thanks

                        Maria D

                         

                        • March 8, 2014 at 10:01 pm
                        maria d
                        Participant

                          Hi Jerry

                          I am new to the site, so excuse me if I don't follow Protocol, as I on't know all the rules.

                          I have Mucosal Rectal Melanoma.  The Tumor was resected January 2, and I am BRAF and CKIT Mutation free.

                          The Oncologists tried to enroll me in a clinical trial, but I was declined – NOT METASTATIC, yet.

                          So, they are jut monitoring me, for now.  What can you tell me abou this dreadful disease?

                          Thanks

                          Maria D

                           

                        • March 5, 2014 at 6:41 am
                        JerryfromFauq
                        Participant

                          Have they checked for NRAS mutations?

                          • March 5, 2014 at 1:10 pm
                          JC
                          Participant

                            The groin node was from the in situ 5 years earlier?

                              • March 5, 2014 at 4:13 pm
                              mau
                              Participant

                                That has been the thought. 

                                Unusual to progress so if you were diagnosed in situ don't panic. My version of the disease is not typical. 

                                • March 5, 2014 at 4:13 pm
                                mau
                                Participant

                                  That has been the thought. 

                                  Unusual to progress so if you were diagnosed in situ don't panic. My version of the disease is not typical. 

                                  • March 5, 2014 at 4:13 pm
                                  mau
                                  Participant

                                    That has been the thought. 

                                    Unusual to progress so if you were diagnosed in situ don't panic. My version of the disease is not typical. 

                                  • March 5, 2014 at 1:10 pm
                                  JC
                                  Participant

                                    The groin node was from the in situ 5 years earlier?

                                    • March 5, 2014 at 1:10 pm
                                    JC
                                    Participant

                                      The groin node was from the in situ 5 years earlier?

                                      • March 5, 2014 at 1:18 pm
                                      Phil S
                                      Participant

                                        Looks like your melanoma history was cutaneous, so likely your tumors are also cutaneous.  However, really your focus should be coming up with another treatment plan.  My husband has mucosal melanoma and has been offered and done the following treatment, interferon, radiation, surgery, biochemo, and TILS, all treatments offered to both cutaneous and mucosal patients.  Pretty sure once the melanoma has spread they are treated exactly the same, especially since you are CKit negative.  Wishing you all the best, my husband is still doing well over 4 years in the battle.   Valerie (Phil's wife)

                                        • March 5, 2014 at 1:18 pm
                                        Phil S
                                        Participant

                                          Looks like your melanoma history was cutaneous, so likely your tumors are also cutaneous.  However, really your focus should be coming up with another treatment plan.  My husband has mucosal melanoma and has been offered and done the following treatment, interferon, radiation, surgery, biochemo, and TILS, all treatments offered to both cutaneous and mucosal patients.  Pretty sure once the melanoma has spread they are treated exactly the same, especially since you are CKit negative.  Wishing you all the best, my husband is still doing well over 4 years in the battle.   Valerie (Phil's wife)

                                          • March 5, 2014 at 1:18 pm
                                          Phil S
                                          Participant

                                            Looks like your melanoma history was cutaneous, so likely your tumors are also cutaneous.  However, really your focus should be coming up with another treatment plan.  My husband has mucosal melanoma and has been offered and done the following treatment, interferon, radiation, surgery, biochemo, and TILS, all treatments offered to both cutaneous and mucosal patients.  Pretty sure once the melanoma has spread they are treated exactly the same, especially since you are CKit negative.  Wishing you all the best, my husband is still doing well over 4 years in the battle.   Valerie (Phil's wife)

                                            • March 7, 2014 at 8:56 pm
                                            JerryfromFauq
                                            Participant

                                              NIH released a report at the end of last year that NRAS mutation melanoma patients have a 47% positive response to HD IL-2.  Have heard a statistical breakout of how the other immunotherapies work against the NRAS mutations.  This is one of the few biomarkers to date as to what IL-2 works the best on.  The other item is that if one has a very high LDH this reduces the effectiveness of IL-2.    Slowly sneaking up on what to try for whom!

                                              • March 7, 2014 at 8:56 pm
                                              JerryfromFauq
                                              Participant

                                                NIH released a report at the end of last year that NRAS mutation melanoma patients have a 47% positive response to HD IL-2.  Have heard a statistical breakout of how the other immunotherapies work against the NRAS mutations.  This is one of the few biomarkers to date as to what IL-2 works the best on.  The other item is that if one has a very high LDH this reduces the effectiveness of IL-2.    Slowly sneaking up on what to try for whom!

                                                  • March 10, 2014 at 10:02 am
                                                  JerryfromFauq
                                                  Participant

                                                    Lost the word NOT:  Have NOT heard a statistical breakout of how the other immunotherapies work against the NRAS mutations.

                                                    • March 10, 2014 at 10:02 am
                                                    JerryfromFauq
                                                    Participant

                                                      Lost the word NOT:  Have NOT heard a statistical breakout of how the other immunotherapies work against the NRAS mutations.

                                                      • March 10, 2014 at 10:02 am
                                                      JerryfromFauq
                                                      Participant

                                                        Lost the word NOT:  Have NOT heard a statistical breakout of how the other immunotherapies work against the NRAS mutations.

                                                      • March 7, 2014 at 8:56 pm
                                                      JerryfromFauq
                                                      Participant

                                                        NIH released a report at the end of last year that NRAS mutation melanoma patients have a 47% positive response to HD IL-2.  Have heard a statistical breakout of how the other immunotherapies work against the NRAS mutations.  This is one of the few biomarkers to date as to what IL-2 works the best on.  The other item is that if one has a very high LDH this reduces the effectiveness of IL-2.    Slowly sneaking up on what to try for whom!

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