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Found METs in brain
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Found METs in brain

› Forums › General Melanoma Community › Found METs in brain

  • Post
    • May 24, 2019 at 3:16 pm
    Happygal
    Participant
      Well,
      This was not what I was expecting… I had an MRI in January and it was all clear. I had one yesterday as i have been a little disoriented. They found over 20, some inflamed and all throughout.
      They want me to start full brain radiation next week.
      I am so …..
      Don’t even know the words, scared, mad, confused…so at a loss right now
    Viewing 12 reply threads
    • Replies
        • May 24, 2019 at 3:52 pm
        Edwin
        Participant
          I wish this had not happened to you. I hope the radiation helps. Melanoma can be a horrible disease. I would be frightened, if I learned I had brain cancer.
            • May 25, 2019 at 7:52 am
            Happygal
            Participant
              Thank you, yes very aggressive disease!!
              But I won’t give up
            • May 24, 2019 at 3:53 pm
            mandyjill
            Participant
              Tyais,
              So very sorry for this news. But you can do this. Prayers being sent your way.
              • May 24, 2019 at 6:00 pm
              MarkR
              Participant
                I am so sorry to hear this – I really hope the radiation helps you as it has helped so many people
                Best wishes to you
                Mark
                • May 24, 2019 at 8:51 pm
                gopher38
                Participant
                  Ouch. I’d be on the floor, so if you’re not there, you’re doing better than I would. I’m hoping the radiation works for you.
                    • May 25, 2019 at 7:56 am
                    Happygal
                    Participant
                      On the floor, but knowing I need to get back up.
                      Thank you for all the support
                    • May 25, 2019 at 2:17 am
                    jbronicki
                    Participant
                      Oh tyais, I’m so very sorry that is a shock, but I’m praying that radiation works quickly and thoroughly. We are all behind you on this. Many many hugs. Visualize zapping those Mets.
                        • May 25, 2019 at 7:54 am
                        Happygal
                        Participant
                          Thank you, yes zap zap away!! Be gone
                          • May 25, 2019 at 11:17 am
                          caman
                          Participant
                            The human body can do amazing things. Wishing you the best as you go through the process. Keep us posted
                          • May 25, 2019 at 4:55 pm
                          sister of patient
                          Participant
                            Hi Tyais – I am so sorry that you are now having to deal with this kind of progression. I want you to know that my sister’s experience was very similar – a clear MRI in Jan. (2016) and a brain full of mets by May. At that point she’d had 2 rounds of ipi/nivo after being taken off Taf/Mek. She did undergo whole brain radiation and was back on Nivo asap after that. Her brain has been clear for over 2 years now and she is coming up on 2 years NED period!!

                            The radiation treatments were not difficult to take – there was some swelling involved (for her and I believe for most – it’s pretty common) and they usually treat it with steroids. Hopefully, your liver enzyme count will resolve and you can get back on Nivo quickly. The studies definitely show that immuno and radiation in close proximity have a greater effect together than either alone and thank goodness you were able to get in all 4 ipi/nivo combos. Celeste has lots of new info also showing that immuno and radiation simultaneously is absolutely the best way to proceed if possible, so definitely talk to your docs about the amount of steroids they might give you.

                            I just want you to know that you can do this Tyais, you can get through this and get those little monsters out of your head for good!!!! I wish you the very best results and will be pulling for you, as everyone else here is!!! You take care!!

                            Barb

                              • May 27, 2019 at 12:15 am
                              Happygal
                              Participant
                                Wow, that is fantastic positive news.
                                Thank you
                              • May 25, 2019 at 6:42 pm
                              MelanomaMike
                              Participant
                                Aw shoot! or shit if ya dont mind me cussing! Im sorry to hear this right along with you, i have a PET scan coming up wich iv been avoiding for over 2 years now, God only knows what theyll find (fingers crossed) im Mike by the way, stage 4 and in my lungs, currently on Opdivo…
                                • May 25, 2019 at 11:45 pm
                                Bubbles
                                Participant
                                  Oh, Tyais. So very sorry. Melanoma sucks great big green stinky hairy wizard balls! Yes, Barb is correct. There is tons of data that notes when immunotherapy and radiation is combined (and you have certainly had plenty of immunotherapy lately!!!!) the positive response is greater than when either radiation or immunotherapy are used on their own. You can find lots of articles on my blog (use the search bubble) if you are interested. I know you are tough. Hang in there. I will be holding you in my heart. Yours, celeste
                                  • May 26, 2019 at 7:00 pm
                                  Johnjk04
                                  Participant
                                    Happy gal I have seen some amazing stories on this site. You will be in my prayers, that you are the next incredible story.
                                    • May 27, 2019 at 6:05 am
                                    casagrayson
                                    Participant
                                      Tyais, you’ve got this! Zap those buggers, kick this stuff to the curb, and come back and post that you are NED! That’s how I’m planning to envision this going down — we’ll make it happen through positive vibes!
                                        • May 27, 2019 at 11:58 am
                                        Happygal
                                        Participant
                                          Thank you Susan, positivity is one of our best tools. Thank you!!!
                                        • May 28, 2019 at 1:44 pm
                                        sing123
                                        Participant
                                          Tyais, I will be so rooting for you.
                                          • May 28, 2019 at 10:21 pm
                                          GeoTony
                                          Participant
                                            Tyais
                                            I’m so, so sorry to hear you’re news, been away for 10 days before starting another trial and everything changes………. This disease sucks big time, things change so fast, argh!!!
                                            Direct that anger you must be feeling and good luck this week

                                            My thoughts are with you

                                            Tony

                                            • June 10, 2019 at 8:52 pm
                                            Gene_S
                                            Participant
                                              MEET KIM MARGOLIN, M.D.: LEADING THE FIGHT AGAINST MELANOMA – AND WINNING
                                              CURING METASTATIC MELANOMA TO THE BRAIN
                                              “My own particular interest and passion is the treatment of melanoma when it’s metastatic to the brain, which has a very high incidence,” said Margolin.

                                              https://www.cityofhope.org/breakthroughs/kim-margolin-is-leading-the-fight-against-melanoma-and-winning

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