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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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