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Failed Intermittent Zel, onto Merck PD1 hopefully
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Failed Intermittent Zel, onto Merck PD1 hopefully

› Forums › General Melanoma Community › Failed Intermittent Zel, onto Merck PD1 hopefully

  • Post
    • April 16, 2013 at 3:07 pm
    awillett1991
    Participant
      After almost a year on/off Zel I’m off again, having failed it definitely once, I think twice, and also Ipi. CT was clear, 2 brain mets are stable after SRS in Nov with one showing 1 mm edema they “think” UGH!! Cardiac tumor is thriving again but blessed to feel good, have normal heart function, and no growth into the heart muscle still, after a year. Also blessed to have an opening into Merck PD1 trial if I can qualify. Fingers crossed, prayers going up, I will be a lab rat hooked up to a drip, 3 weeks from now. Have another brain MRI next wk which must be stable. Every day is a gift!!

      Amy

    Viewing 8 reply threads
    • Replies
        • April 16, 2013 at 4:36 pm
        Mickey n Jo
        Participant

          Amy, You were always there for us. Wishing you all the best.  My thoughts and many prayers are with you always.

                                                                                               Stay strong,

                                                                                                    Jo

          • April 16, 2013 at 4:36 pm
          Mickey n Jo
          Participant

            Amy, You were always there for us. Wishing you all the best.  My thoughts and many prayers are with you always.

                                                                                                 Stay strong,

                                                                                                      Jo

              • April 17, 2013 at 2:47 am
              awillett1991
              Participant
                Thanks Jo. How are you holding up?
                • April 17, 2013 at 2:47 am
                awillett1991
                Participant
                  Thanks Jo. How are you holding up?
                  • April 17, 2013 at 2:47 am
                  awillett1991
                  Participant
                    Thanks Jo. How are you holding up?
                    • April 19, 2013 at 3:49 am
                    Mickey n Jo
                    Participant

                      Hanging on , but barely.

                      • April 19, 2013 at 3:49 am
                      Mickey n Jo
                      Participant

                        Hanging on , but barely.

                        • April 19, 2013 at 3:49 am
                        Mickey n Jo
                        Participant

                          Hanging on , but barely.

                        • April 16, 2013 at 4:36 pm
                        Mickey n Jo
                        Participant

                          Amy, You were always there for us. Wishing you all the best.  My thoughts and many prayers are with you always.

                                                                                                               Stay strong,

                                                                                                                    Jo

                          • April 17, 2013 at 1:32 am
                          AllyNTAus
                          Participant

                            Amy, wishing you the gift of many many more days, and keeping everything crossed for you that you get onto the PD1 Trial. I would be very keen to hear how the trial goes if you get on it, as we do have the Merck PD1 trial running here in Australia although with very limited openings.

                            All the best,

                            Ally

                              • April 17, 2013 at 2:52 am
                              awillett1991
                              Participant
                                Trying not to get my hopes up too much, and I am grateful for having the last year w my family. Thanks Ally. Lots of sites here w openings, I’m lucky its in my hometown. How are you doing??
                                • April 17, 2013 at 2:52 am
                                awillett1991
                                Participant
                                  Trying not to get my hopes up too much, and I am grateful for having the last year w my family. Thanks Ally. Lots of sites here w openings, I’m lucky its in my hometown. How are you doing??
                                  • April 17, 2013 at 6:05 am
                                  AllyNTAus
                                  Participant

                                    Amy, like you I'm grateful for every moment, seeing my little boy grow up is a daily gift. I'm doing pretty well, back home and back at work now after 5 weeks away starting up on the Novartis BRAF/MEK combination trial, no side effects and disease has stabilised again with no major organ involvement, just scattered lymph nodes and small subq mets.

                                    • April 17, 2013 at 6:05 am
                                    AllyNTAus
                                    Participant

                                      Amy, like you I'm grateful for every moment, seeing my little boy grow up is a daily gift. I'm doing pretty well, back home and back at work now after 5 weeks away starting up on the Novartis BRAF/MEK combination trial, no side effects and disease has stabilised again with no major organ involvement, just scattered lymph nodes and small subq mets.

                                      • April 17, 2013 at 10:33 pm
                                      awillett1991
                                      Participant
                                        Great news Ally! Keep fighting!
                                        • April 17, 2013 at 10:33 pm
                                        awillett1991
                                        Participant
                                          Great news Ally! Keep fighting!
                                          • April 17, 2013 at 10:33 pm
                                          awillett1991
                                          Participant
                                            Great news Ally! Keep fighting!
                                            • April 17, 2013 at 6:05 am
                                            AllyNTAus
                                            Participant

                                              Amy, like you I'm grateful for every moment, seeing my little boy grow up is a daily gift. I'm doing pretty well, back home and back at work now after 5 weeks away starting up on the Novartis BRAF/MEK combination trial, no side effects and disease has stabilised again with no major organ involvement, just scattered lymph nodes and small subq mets.

                                              • April 17, 2013 at 2:52 am
                                              awillett1991
                                              Participant
                                                Trying not to get my hopes up too much, and I am grateful for having the last year w my family. Thanks Ally. Lots of sites here w openings, I’m lucky its in my hometown. How are you doing??
                                              • April 17, 2013 at 1:32 am
                                              AllyNTAus
                                              Participant

                                                Amy, wishing you the gift of many many more days, and keeping everything crossed for you that you get onto the PD1 Trial. I would be very keen to hear how the trial goes if you get on it, as we do have the Merck PD1 trial running here in Australia although with very limited openings.

                                                All the best,

                                                Ally

                                                • April 17, 2013 at 1:32 am
                                                AllyNTAus
                                                Participant

                                                  Amy, wishing you the gift of many many more days, and keeping everything crossed for you that you get onto the PD1 Trial. I would be very keen to hear how the trial goes if you get on it, as we do have the Merck PD1 trial running here in Australia although with very limited openings.

                                                  All the best,

                                                  Ally

                                                  • April 17, 2013 at 10:29 pm
                                                  Tina D
                                                  Participant

                                                    Absolutely hating this news, but also thankful for the fact that your heart function is normal inspite of it all! Praying you can qualify for the PD1 trial. Lots of prayer sgoing up for you from here.

                                                    Tina

                                                    • April 17, 2013 at 10:29 pm
                                                    Tina D
                                                    Participant

                                                      Absolutely hating this news, but also thankful for the fact that your heart function is normal inspite of it all! Praying you can qualify for the PD1 trial. Lots of prayer sgoing up for you from here.

                                                      Tina

                                                      • April 17, 2013 at 10:29 pm
                                                      Tina D
                                                      Participant

                                                        Absolutely hating this news, but also thankful for the fact that your heart function is normal inspite of it all! Praying you can qualify for the PD1 trial. Lots of prayer sgoing up for you from here.

                                                        Tina

                                                          • April 17, 2013 at 10:35 pm
                                                          awillett1991
                                                          Participant
                                                            Thanks so much Tina.
                                                            • April 17, 2013 at 10:35 pm
                                                            awillett1991
                                                            Participant
                                                              Thanks so much Tina.
                                                              • April 18, 2013 at 10:00 pm
                                                              NYKaren
                                                              Participant

                                                                Hello Amy,

                                                                I sincerely you get to be a lab rat.  Our lives are about hanging on until the next best thing comes along…I was really out of good options until my BRAF status changed to positive, now I'm all about hanging on until the BRAF combo drugs are approved.  Then if I respond to them, it will be hanging on until PD1 is approved or if before then, that I have measurable disease at the time a trial is recruiting. 

                                                                I believe these drugs fail us, we don't fail them.

                                                                Fingers crossed for you,

                                                                karen

                                                                • April 18, 2013 at 10:00 pm
                                                                NYKaren
                                                                Participant

                                                                  Hello Amy,

                                                                  I sincerely you get to be a lab rat.  Our lives are about hanging on until the next best thing comes along…I was really out of good options until my BRAF status changed to positive, now I'm all about hanging on until the BRAF combo drugs are approved.  Then if I respond to them, it will be hanging on until PD1 is approved or if before then, that I have measurable disease at the time a trial is recruiting. 

                                                                  I believe these drugs fail us, we don't fail them.

                                                                  Fingers crossed for you,

                                                                  karen

                                                                  • April 18, 2013 at 10:00 pm
                                                                  NYKaren
                                                                  Participant

                                                                    Hello Amy,

                                                                    I sincerely you get to be a lab rat.  Our lives are about hanging on until the next best thing comes along…I was really out of good options until my BRAF status changed to positive, now I'm all about hanging on until the BRAF combo drugs are approved.  Then if I respond to them, it will be hanging on until PD1 is approved or if before then, that I have measurable disease at the time a trial is recruiting. 

                                                                    I believe these drugs fail us, we don't fail them.

                                                                    Fingers crossed for you,

                                                                    karen

                                                                    • April 17, 2013 at 10:35 pm
                                                                    awillett1991
                                                                    Participant
                                                                      Thanks so much Tina.
                                                                Viewing 8 reply threads
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