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Reviewing stage 4 treatment options
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Reviewing stage 4 treatment options

› Forums › General Melanoma Community › Reviewing stage 4 treatment options

  • Post
    • January 27, 2017 at 2:18 pm
    David McCaw
    Participant

      I moved from stage 3c with unresectable melanoma in transits to stage 4 with  mets in lungs and liver. I will be receiving combo #4 today nivo / ipi  Unfortunately my immune is not responding according to med onc after 8 weeks and 3 combos with CT scan.  The plans 1) Army 1 – continue with immunatherapy for today, 3 nivo wks, 5 wks nivo, CT scan at 6 weeks , if progression 2)  Different Army with Targeted therapy – Cotellic & Zelboraf 3) Investigating Adoptive T-cell Therapy at Princess Margaret hospital.  Any other suggestions. 

      also note,my braf mutation is k601n.  I live in Ottawa, Canadaand will be seeing  Ed Williams today.

      Thanks,

      David

       

    Viewing 5 reply threads
    • Replies
        • January 27, 2017 at 3:53 pm
        Bubbles
        Participant

          1.  Not clear exactly what your docs are seeing but here is a report that covers many of the treatment options by two melanoma experts:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html

          2.  Here, the same docs note: "Be patient with the patient.":  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

          more below…..

          • January 27, 2017 at 3:53 pm
          Bubbles
          Participant

            1.  Not clear exactly what your docs are seeing but here is a report that covers many of the treatment options by two melanoma experts:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html

            2.  Here, the same docs note: "Be patient with the patient.":  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

            more below…..

            • January 27, 2017 at 3:53 pm
            Bubbles
            Participant

              1.  Not clear exactly what your docs are seeing but here is a report that covers many of the treatment options by two melanoma experts:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html

              2.  Here, the same docs note: "Be patient with the patient.":  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

              more below…..

              • January 27, 2017 at 9:00 pm
              debwray
              Participant

                Hi David,

                Just been posting about my similar lack of response on ipi nivo at 12 weeks. Some take more time to respond .. have a look at this http://meetinglibrary.asco.org/content/109615?media=vm 

                The majority or responders showed evidence by 10-12 weeks BUT others responded at between 18 and 40 weeks…so giving it a minimum of 12 weeks  looks sensible ..although your oncologist is probably looking at expected responses in the blood tests too….and the percentage of late responders is low.

                Just thought the evidence of late response might be encouraging.

                • January 27, 2017 at 9:00 pm
                debwray
                Participant

                  Hi David,

                  Just been posting about my similar lack of response on ipi nivo at 12 weeks. Some take more time to respond .. have a look at this http://meetinglibrary.asco.org/content/109615?media=vm 

                  The majority or responders showed evidence by 10-12 weeks BUT others responded at between 18 and 40 weeks…so giving it a minimum of 12 weeks  looks sensible ..although your oncologist is probably looking at expected responses in the blood tests too….and the percentage of late responders is low.

                  Just thought the evidence of late response might be encouraging.

                  • January 27, 2017 at 9:00 pm
                  debwray
                  Participant

                    Hi David,

                    Just been posting about my similar lack of response on ipi nivo at 12 weeks. Some take more time to respond .. have a look at this http://meetinglibrary.asco.org/content/109615?media=vm 

                    The majority or responders showed evidence by 10-12 weeks BUT others responded at between 18 and 40 weeks…so giving it a minimum of 12 weeks  looks sensible ..although your oncologist is probably looking at expected responses in the blood tests too….and the percentage of late responders is low.

                    Just thought the evidence of late response might be encouraging.

                      • January 27, 2017 at 9:33 pm
                      David McCaw
                      Participant

                        Anon, i just finished my last combo,  so 3 more weeks to start 3 mg/kg nivo.  Hopefully by week 15, i will have a better response.  I am in the bms expanded trial, but allowed to continue unless progression onnext scan. I have also inquired about a mri for brain. Which week are you into for nivo maintenance 

                        • January 27, 2017 at 9:33 pm
                        David McCaw
                        Participant

                          Anon, i just finished my last combo,  so 3 more weeks to start 3 mg/kg nivo.  Hopefully by week 15, i will have a better response.  I am in the bms expanded trial, but allowed to continue unless progression onnext scan. I have also inquired about a mri for brain. Which week are you into for nivo maintenance 

                          • January 27, 2017 at 9:33 pm
                          David McCaw
                          Participant

                            Anon, i just finished my last combo,  so 3 more weeks to start 3 mg/kg nivo.  Hopefully by week 15, i will have a better response.  I am in the bms expanded trial, but allowed to continue unless progression onnext scan. I have also inquired about a mri for brain. Which week are you into for nivo maintenance 

                            • January 27, 2017 at 9:52 pm
                            debwray
                            Participant

                              Have had 3 doses of ipi nivo but had to delay due to side effects and steroids- so have had 12 week scan but only measuring impact of two doses pf the combo. Also ref CT scan was about 5 weeks before start of treatment- so disease could have progressed before start of treatment….points of measurement will make a difference like your onc says…am BRAF wildtype so that reduces choices…guess i just need to sit tight for a little while,

                              • January 27, 2017 at 9:52 pm
                              debwray
                              Participant

                                Have had 3 doses of ipi nivo but had to delay due to side effects and steroids- so have had 12 week scan but only measuring impact of two doses pf the combo. Also ref CT scan was about 5 weeks before start of treatment- so disease could have progressed before start of treatment….points of measurement will make a difference like your onc says…am BRAF wildtype so that reduces choices…guess i just need to sit tight for a little while,

                                • January 27, 2017 at 9:52 pm
                                debwray
                                Participant

                                  Have had 3 doses of ipi nivo but had to delay due to side effects and steroids- so have had 12 week scan but only measuring impact of two doses pf the combo. Also ref CT scan was about 5 weeks before start of treatment- so disease could have progressed before start of treatment….points of measurement will make a difference like your onc says…am BRAF wildtype so that reduces choices…guess i just need to sit tight for a little while,

                                  • January 27, 2017 at 11:12 pm
                                  David McCaw
                                  Participant

                                    Good luck with # 4.combo. My reference ct scan was a week zero and 8 after 3 combos.  Although there were new mets, they are small , 1 to 10 mm.  Only less than 10% of liver. Wake up immune system!   So far only fatigue.  My blood work is good so now just play the waiting game. I have intransits so i can feel them hopefully shrink very soon or be stable. my braf mutation is different,  k601n,  back pocket option.  Hang tight, we are all pulling together to be free ofthis beast. 

                                    • January 27, 2017 at 11:12 pm
                                    David McCaw
                                    Participant

                                      Good luck with # 4.combo. My reference ct scan was a week zero and 8 after 3 combos.  Although there were new mets, they are small , 1 to 10 mm.  Only less than 10% of liver. Wake up immune system!   So far only fatigue.  My blood work is good so now just play the waiting game. I have intransits so i can feel them hopefully shrink very soon or be stable. my braf mutation is different,  k601n,  back pocket option.  Hang tight, we are all pulling together to be free ofthis beast. 

                                      • January 27, 2017 at 11:12 pm
                                      David McCaw
                                      Participant

                                        Good luck with # 4.combo. My reference ct scan was a week zero and 8 after 3 combos.  Although there were new mets, they are small , 1 to 10 mm.  Only less than 10% of liver. Wake up immune system!   So far only fatigue.  My blood work is good so now just play the waiting game. I have intransits so i can feel them hopefully shrink very soon or be stable. my braf mutation is different,  k601n,  back pocket option.  Hang tight, we are all pulling together to be free ofthis beast. 

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