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poppymac

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      poppymac
      Participant
        i had 4 infusions of pembro in late 2018
        it was stopped because a braimn met showed up on scan
        oncologists was quick to point out i had no side effects
        i only one treatment of srs on brain met and nothing since
        so not sure if pembro worked
        poppymac
        Participant
          hi,anything you find strenuous like running or lifting  if muscle or nerves are inflamed they might show uptake on pet scan,i was told i had melanoma in bowel and appendix it turned out to be false alarm

           

           

          poppymac
          Participant
            hi Amy I too am from northern Ireland and had SRS on a brain met at royal Victoria hospital in dec 2018, I do remember the doctor saying she was prepared to do 3 mets that day if they had appeared from last scan thankfully they hadn’t
            I’ve been NED ever since
            I was reading your earlier post did u have any luck finding melanoma specialist
            best of luck with your dad and all my prayers
            poppymac
            Participant
              hi, I started on pembro in sep 18 but it was stopped because of progression on 30 nov 18
              brain met on right frontal lobe showed up in ct scan
              SRS surgery which lasted about 20 minutes on 27 dec 2018 and no treatment since
              poppymac
              Participant
                hi,i’m from ireland too i doubt the oncologists would started ipi/nivo without further evidence as scans especially pet scan can be wrong i was i had melamoma in bowel and appendix 2 years ago and on further investigation it was in neither,imagine if i had been started on ipi/nivo straight away

                 

                poppymac
                Participant
                  hi,Celeste, thankyou for your as usual expert reply, i like many others here see you as an expert oncolgist on this forum

                  happy holidays to you and yours

                  fergal

                  poppymac
                  Participant
                    hi.i was told in jan 2019 after a pet scan that i had melanoma in appendix and bowel though small in both it turned out to be in neither
                    poppymac
                    Participant
                      thankyou for your very informative reply melanie i wonder why they havn’t moved to stage 3 with melanoma vaccine maybe outside financial pressure
                      poppymac
                      Participant
                        in nhs england they initially agreed a big price but then when they saw results the cut it,in southern ireland they wanted to pay by success but that didn’t happen as only 1 in 5 had a good response
                        poppymac
                        Participant
                          do u mean insurance pays 9500 of the 19000 and if so who pays the remainder
                          poppymac
                          Participant
                            in southern ireland i’ve heard pembro is 7000 euros per dose and as low as 4000 in uk
                            poppymac
                            Participant
                              thankyou for your kind words celeste
                              poppymac
                              Participant
                                hi,i had an aunt died when I was 6 from what I thought was breast cancer I only learned a couple of years ago it was melanoma and another aunt had a malignant mole removed from sole of her foot at 75 it returned in same place when she was 85 she’s now 90 and ok
                                I attributed to hers age
                                poppymac
                                Participant
                                  thank u for your imput ed,
                                  i had scan the previous august which was ned and had 4 treatment of pembro before nov 30 scan
                                  as the disease as my oncologist calls it had been very intense in my neck area I think pembro must have did something
                                  also is SRS enough for brain met on it’s own
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