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stuart.mcalpine@westnet.com.au
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      • September 24, 2020 at 12:52 am
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      Participant
        I had two in my brain one in lung(gone now) from melanoma…had craniotomy and sterotactic on two in brain followed by 2 yrs pembro…still going but sterotactic has given me radiation necrosis(confirmed by another craniotomy) which affects me more than tumour(in my cerebellum)….everyone is different…but i am wondering if they really had to irradiate the site where the tumor was…..necrosis didnt turn up for two years…so I would ask the question….its all a bit daunting at the beginning…and you tend to go where they lead you…good luck
        • September 23, 2020 at 12:39 pm
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        Participant
          great to hear that its possible…going through necrosis myself now …and love to here the good news stories..well done
          • September 23, 2020 at 8:34 am
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            hope you beat it…I I am similar melanoma brain mets,craniotomy,srt,keytruda…then another craniotomy, turned out to be radiation necrosis(losing balance now)….I am hoping you beat the RN
            • September 23, 2020 at 8:19 am
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              I sure hope your still kicking that thing…I am stage four two years after 2 craniotomy, srt radiation and pembro…thought I was winning then got radiation necrosis(confirmed with biopsy) losing balance(RN is in cerebellum….taking dex does not help and sea sick pills (does work)..I am hoping you made it…
              • April 10, 2020 at 11:25 pm
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              Participant
                Hi…just to let you know it does not always happen straight away I am on my 24 th dose and have had two in my brain one in my lung…the one in my lung has only started disappearing in last few months and something has started to happen in my brain(had craniotomy on one of them 1 1/2 yr ago) …the keytruda for me has been no big deal and just makes you a bit tired…so hang in there in may not happen straight away.
                cheers
                stuart
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