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What’s next? Can anyone give me info?
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What’s next? Can anyone give me info?

› Forums › General Melanoma Community › What’s next? Can anyone give me info?

  • Post
    • October 21, 2010 at 6:58 pm
    LynnLuc
    Participant

      I have a question maybe someone can help me with…Plans! You know…plan A, Plan B, etc etc…I have been going through mine and now I am stumped!

      I know some people would say not to stress it…but it's melanoma and somehow I don't see an end to my plan making…Yes I am stage 4 NED…but the beast is a tough one to slay.

      I am currently in a MDX 1106 (anti PD-1 ) trial plus injections of  proteins/peptides…my wish is that it keeps me NED…HOWEVER…given the current trend  of Melanoma …I need more plans…

      I have a question maybe someone can help me with…Plans! You know…plan A, Plan B, etc etc…I have been going through mine and now I am stumped!

      I know some people would say not to stress it…but it's melanoma and somehow I don't see an end to my plan making…Yes I am stage 4 NED…but the beast is a tough one to slay.

      I am currently in a MDX 1106 (anti PD-1 ) trial plus injections of  proteins/peptides…my wish is that it keeps me NED…HOWEVER…given the current trend  of Melanoma …I need more plans…

      Currently the trials out there appear to exclude anyone who has used other immunotherapies…so what future options can I look at?? I think I am exhausted of reading studies and trials etc etc…no rest for the weary! -Lynn

    Viewing 1 reply thread
    • Replies
        • October 21, 2010 at 8:29 pm
        jim Breitfeller
        Participant

          Lynn,  Stay the course with Anti-PD-1 therapy. Ipilimumab will most likely get FDA approval on December 2nd.

            • October 21, 2010 at 9:02 pm
            LynnLuc
            Participant

              Hey buddy! Long time no see in Inspire! I am doing fine on the trial thus far and Dr Weber says its promising!

              But you know we can't stop running out the options…I forgot all about the IPI approval in December! Brain drain!

              I have hot hard lumps in my thighs and Dr Weber saying its memory…and a good thing…but is it the vaccine therapy comprising gp100:209-217(210M) peptide, MART-1:26-35(27L) peptide, gp100:280-288(288V) peptide, NY-ESO-1 peptide, and Montanide ISA 51 VG subcutaneously …

              I get that in 6 single injections in the same thigh and then the following treatment in the 6 opposite thigh…and an IV of escalating doses of  MDX 1106

              Until the 2nd treatment I had no lumps…now I have lumps in both…now my question is- is it the vaccine that has memory or is it the MDX 1106 causing them to lump- what's actually remembering? The T cells or the peptides or what?

              I know MDX 1106 is getting great results and I hope it does it's trick on me…If I remain NED I  go thru another 12 weeks and if I am still NED I will get booster MDX 1106 in IV every 3 months for  at least 2 years….

              • October 21, 2010 at 9:02 pm
              LynnLuc
              Participant

                Hey buddy! Long time no see in Inspire! I am doing fine on the trial thus far and Dr Weber says its promising!

                But you know we can't stop running out the options…I forgot all about the IPI approval in December! Brain drain!

                I have hot hard lumps in my thighs and Dr Weber saying its memory…and a good thing…but is it the vaccine therapy comprising gp100:209-217(210M) peptide, MART-1:26-35(27L) peptide, gp100:280-288(288V) peptide, NY-ESO-1 peptide, and Montanide ISA 51 VG subcutaneously …

                I get that in 6 single injections in the same thigh and then the following treatment in the 6 opposite thigh…and an IV of escalating doses of  MDX 1106

                Until the 2nd treatment I had no lumps…now I have lumps in both…now my question is- is it the vaccine that has memory or is it the MDX 1106 causing them to lump- what's actually remembering? The T cells or the peptides or what?

                I know MDX 1106 is getting great results and I hope it does it's trick on me…If I remain NED I  go thru another 12 weeks and if I am still NED I will get booster MDX 1106 in IV every 3 months for  at least 2 years….

                • October 21, 2010 at 9:04 pm
                LynnLuc
                Participant

                  PS I forgot to tell you ..at the MRF symposium last staurday DR Weber said within the next month all stage 4 patients will also have their tissue samples checked for 3 mutations( one is B raf) as standard…and then they will do the stage 3…as SOP!

                  • October 22, 2010 at 9:41 am
                  jim Breitfeller
                  Participant

                    Lynn, What are the other two mutations?

                    BRAF

                    c-Kit

                    ?

                    Take care

                    Jimmy B

                    • October 22, 2010 at 9:59 am
                    LynnLuc
                    Participant

                      I can't even remember…he was so excited because they were getting the needed stuff to add it to their lab,,,said it would save time by doing the testing themselves, as with most places they currently send it off…I will ask another person who attended or maybe I will just e mail my nurse…I see him on wednesday if I don't get a response before. I think it's a wave that's coming though…

                      • October 22, 2010 at 9:59 am
                      LynnLuc
                      Participant

                        I can't even remember…he was so excited because they were getting the needed stuff to add it to their lab,,,said it would save time by doing the testing themselves, as with most places they currently send it off…I will ask another person who attended or maybe I will just e mail my nurse…I see him on wednesday if I don't get a response before. I think it's a wave that's coming though…

                        • October 22, 2010 at 9:41 am
                        jim Breitfeller
                        Participant

                          Lynn, What are the other two mutations?

                          BRAF

                          c-Kit

                          ?

                          Take care

                          Jimmy B

                          • October 21, 2010 at 9:04 pm
                          LynnLuc
                          Participant

                            PS I forgot to tell you ..at the MRF symposium last staurday DR Weber said within the next month all stage 4 patients will also have their tissue samples checked for 3 mutations( one is B raf) as standard…and then they will do the stage 3…as SOP!

                          • October 21, 2010 at 8:29 pm
                          jim Breitfeller
                          Participant

                            Lynn,  Stay the course with Anti-PD-1 therapy. Ipilimumab will most likely get FDA approval on December 2nd.

                        Viewing 1 reply thread
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