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Meeting today to discuss planned treatments for brain mets
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Meeting today to discuss planned treatments for brain mets

› Forums › General Melanoma Community › Meeting today to discuss planned treatments for brain mets

  • Post
    • January 29, 2021 at 8:11 pm
    Rosiepup
    Participant
      I sent an email to my oncologist on Tuesday and got a Call to come to clinic to discuss my thoughts today.
      Good news from today  – CT body scan results from Tuesday are in and good 🙌🎉💞
      The Not so good news – my consultant is not going to change my treatment plan😒. For ipi mono and no SRS at the moment.  But I need to trust it’s good enough! She said she will speak to the neuro oncologist for a more in-depth explanation of why not radiotherapy. Although thinking it is because they feel the lesion zapped 2 years ago is not just necrosis but tumour and no point at the moment zapping the other 4 just now!
      Just in processing mode at the moment 🙄but very pleased with CT❤️xx

      But any thoughts hugely appreciated!❤️💞😘

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        • January 30, 2021 at 8:06 pm
        Rosiepup
        Participant
          Sorry I know I’m probably being a pain but I’m struggling so much more this time after all these years!

          I thought I was dead in 2015! Mets spleen and liver plus lymph nodes! Being a nurse I was nailing the coffin! But it was fantastic results from Braf/mek, then my brain mets. Been up and down mentally but always positive. Until now!
          Brain. The more I research the worse it looks!  Two and a half years since first SRS and ipi/nivo doses. Not good results from either apparently for me!  Struggling big time mentally!

          • January 30, 2021 at 9:53 pm
          Mark_DC
          Participant
            Hi Rosie

            Am not sure I can help you much – I think I know how you feel since a couple of weeks ago I had a bit of a shock at the dermatologist and I couldnt handle it! (I think its OK actually and not melanoma0

            In the old days we had patient profiles which made it easier to comment on people’s cases. I could not see yours but not sure these work any more. I was too scared to put mine up but if you do then it is easier.

            My questions would be:

            why not SRS (just because one two years ago may not have been fully zapped does not mean they cant zap the rest or rezap the first one)

            you can do ipi for a while and then SRS – is that the plan? But then whats the trigger point for SRS?

            why not ipi/nivo or nivo since ipi is more toxic?

            Would need full case history to understand better, but I would write up your case history and then ask for a second opinion at the Royal Marsden. Also is your oncologist a melanoma specialist??? Super important!!! She should be able to explain the treatment plan to you! I thnk you are in Scotland and the NHS, so I do hope you are seeing a melanoma specialist because melanoma is different, and immunotherapy has its own peculiarities

            your body is clear, just the brain mets – I think you just need a plan to get rid of them, so please do not be too down!!!!

            Good luck Mark

              • January 31, 2021 at 1:49 pm
              Rosiepup
              Participant
                Thanks for this Mark👍
                my oncologist is a very good melanoma specialist and I do trust her! I’m  just struggling, as I thought I’d at least get the SRS? But that’s the neuro team’s decision?

                I’m not sure where the patient profile is? The only thing I could find has very basic information space? Might be me though!🙄😬

                I was going to start another post with maybe more relevant information than I posted before. I looked at recent scan info again and had forgotten some details!😳🙄 Thanks again and I hope you and others, don’t mind looking over the next post??❤️

              • February 2, 2021 at 2:12 pm
              Canadian melanoma wife
              Participant
                Hey Rosiepup I know sometimes when it comes back you want to hit it with everything you got but that radiation is just bad stuff on the brain. My husband is NED for the last 2 two years but was fighting stage IV this last occurrence with Brain Mets. He wasn’t eligible for SRS and ended up having to have a couple whole brain radiation treatments. He had the ipi nivo combination afterwards and the immunotherapy did more for the brain met than the radiation did in the end. These immunotherapy drugs are amazing and I wish you so much luck with them. They work miracles.
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