It’s baaaaack…

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  • Post
    • February 18, 2015 at 6:44 pm
    Julie in SoCal
    Participant

      Hi there friends!

      Well it seems that I am not a complete responder.  A couple of weeks ago  in late Jan. I found a rice grain size piece of funk near-ish my WLE.  I was pretty sure it was another in-transit met.  I hoped I was wrong and that it was just scar tissue or junk or whatever.  But that grain of rice sized funk is now pea sized funk.  So I'll go see Rock Star Doc next week.

      I hate this disease!  I had so hoped that IPI had kicked mel to the curb.  Alas it isn't completely so.

      Meanwhile, friends and I have created our own 4 day weekend this week and we're going camping.  Imagine sleeping on the beach along the rugged California coast!  I can't wait.  I'm bringing my best friends (a few of them anyway) and a small pile of books.  And I'm planning on laughing, reading, hiking along the beach, and of course having long staring contests with the waves.  I'm grateful for the time and I don't know what I would do without my friends.

      I'll keep you all updated after I hear from the Rock Star.  Thanks for standing with me!

      Shalom,

      Julie

      Stage 3c: WLE, SNB, HD-INF, GM-CSF, IPI, ??

    Viewing 8 reply threads
    • Replies
        • February 18, 2015 at 7:28 pm
        Mat
        Participant

          Julie, sorry to hear.  You may want to review recent posts (January) from Josh F.  I believe that he had a similar issue/concern with a good result.

          • February 18, 2015 at 7:28 pm
          Mat
          Participant

            Julie, sorry to hear.  You may want to review recent posts (January) from Josh F.  I believe that he had a similar issue/concern with a good result.

            • February 18, 2015 at 7:28 pm
            Mat
            Participant

              Julie, sorry to hear.  You may want to review recent posts (January) from Josh F.  I believe that he had a similar issue/concern with a good result.

              • February 19, 2015 at 12:04 am
              Marianne quinn
              Participant

                Julie- so sorry to hear the news. Send good thoughts your way. Marianne

                • February 19, 2015 at 12:04 am
                Marianne quinn
                Participant

                  Julie- so sorry to hear the news. Send good thoughts your way. Marianne

                  • February 19, 2015 at 12:04 am
                  Marianne quinn
                  Participant

                    Julie- so sorry to hear the news. Send good thoughts your way. Marianne

                    • February 19, 2015 at 2:46 am
                    BrianP
                    Participant

                      Oh Julie, I hate to hear that. Hopefully you're wrong but I know sometimes you just have a sense about these things. I know you are in good hands. Hang. In there. 

                      Brian

                      • February 19, 2015 at 2:46 am
                      BrianP
                      Participant

                        Oh Julie, I hate to hear that. Hopefully you're wrong but I know sometimes you just have a sense about these things. I know you are in good hands. Hang. In there. 

                        Brian

                          • February 19, 2015 at 8:41 pm
                          killmel
                          Participant

                            Julie,

                             

                            I am in awe of you because your attitude is very upbeat and positive. When I had my recurrence, I was depressed to face dealing with melanoma again.

                            Good Luck with your doctors visits.

                             

                            • February 19, 2015 at 8:41 pm
                            killmel
                            Participant

                              Julie,

                               

                              I am in awe of you because your attitude is very upbeat and positive. When I had my recurrence, I was depressed to face dealing with melanoma again.

                              Good Luck with your doctors visits.

                               

                              • February 22, 2015 at 8:12 pm
                              killmel
                              Participant

                                Hi Julie,

                                 

                                I am so sorry to hear your news.

                                I am also a stage 3 and have done IPI. So far, no occurences.

                                I have heard that PD1 has been aboved by FDA but for only stage 4 patients and you need to do IPI but Braf if you are braf positive.

                                My doctor would probably give me PD1 "off label" but my insurance would not pay for it because I am stage 3 unless I had a recurrence that went to an organ.

                                I am very interested in what your Rock doctor recommend in your case.

                                Good Luck and please update us after your visit.

                                Shalom back at you

                                 

                                • February 22, 2015 at 8:12 pm
                                killmel
                                Participant

                                  Hi Julie,

                                   

                                  I am so sorry to hear your news.

                                  I am also a stage 3 and have done IPI. So far, no occurences.

                                  I have heard that PD1 has been aboved by FDA but for only stage 4 patients and you need to do IPI but Braf if you are braf positive.

                                  My doctor would probably give me PD1 "off label" but my insurance would not pay for it because I am stage 3 unless I had a recurrence that went to an organ.

                                  I am very interested in what your Rock doctor recommend in your case.

                                  Good Luck and please update us after your visit.

                                  Shalom back at you

                                   

                                  • February 22, 2015 at 8:12 pm
                                  killmel
                                  Participant

                                    Hi Julie,

                                     

                                    I am so sorry to hear your news.

                                    I am also a stage 3 and have done IPI. So far, no occurences.

                                    I have heard that PD1 has been aboved by FDA but for only stage 4 patients and you need to do IPI but Braf if you are braf positive.

                                    My doctor would probably give me PD1 "off label" but my insurance would not pay for it because I am stage 3 unless I had a recurrence that went to an organ.

                                    I am very interested in what your Rock doctor recommend in your case.

                                    Good Luck and please update us after your visit.

                                    Shalom back at you

                                     

                                    • February 19, 2015 at 8:41 pm
                                    killmel
                                    Participant

                                      Julie,

                                       

                                      I am in awe of you because your attitude is very upbeat and positive. When I had my recurrence, I was depressed to face dealing with melanoma again.

                                      Good Luck with your doctors visits.

                                       

                                    • February 19, 2015 at 2:46 am
                                    BrianP
                                    Participant

                                      Oh Julie, I hate to hear that. Hopefully you're wrong but I know sometimes you just have a sense about these things. I know you are in good hands. Hang. In there. 

                                      Brian

                                  Viewing 8 reply threads
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