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Brain Met patients need the experts – help us Celeste and Ed!
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Brain Met patients need the experts – help us Celeste and Ed!

› Forums › General Melanoma Community › Brain Met patients need the experts – help us Celeste and Ed!

  • Post
    • September 11, 2019 at 6:22 pm
    Wicked Witch
    Participant
      We have been discussing over on a stage 4 Facebook group that we in the brain mets club would like to find somewhere to come together to discuss options, you know, since clinical trails exclude us.

      I said I’ll ask two of the experts!

      So . . Bubbles and Mr. Williams . . do you know of somewhere we can join or, can you provide me with some good information and I’ll start a group for those of us battling brain mets and excluded from trials?

      Thank you SO MUCH for everything the two of you do for us.

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    • Replies
        • September 11, 2019 at 7:13 pm
        ed williams
        Participant
          Hi there Wicked Witch, thanks for the Mr. Williams but I prefer Ed. So, if I can give you any ideas for brain mets and groups then I would have suggested MRF or the stage 4 group since you have patients that have been dealing with brain mets or are in trials like checkmate 204 looking at using Ipi+ Nivo for brain mets. I haven’t come across any other groups that are specific to brain mets in melanoma but then again I haven’t been looking lately!!! So, ideas to follow or dr.s to follow when it comes to brain mets would be MD. Anderson and dr. Davies and Dr. Tawbi both are involved in dealing with brain met research. I am sure there are some other good people to follow but anyone involved with checkmate 204 trial or the Australian ABC brain met study which had Dr. Long as one of the experts. Here are a couple of links to help you out. https://meetinglibrary.asco.org/record/147208/abstract https://www.youtube.com/watch?v=gDu3x9xhH-U
          • September 12, 2019 at 3:04 pm
          Bubbles
          Participant
            Hey WW!!! Like Ed noted, I don’t know of any special group for Melanoma brain met peeps! Cool idea though. Like Ed, I try to share all I learn about melanoma….including brain met treatments…here and on my blog. It has been a very long road for all melanoma peeps but those with CNS disease have had an even harder row to hoe (as have those with mucosal and occular mel) due to exclusions from trials – among other things!!! However, hopefully that tide is turning. For some time now, Melanoma Big Dogs have been joining the chorus singing….”Let them in. Let them in!!!!”

            Here is a post from 2015 with additional links within: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/a-really-good-review-of-treatment-data.html

            Here is more than anyone ever wanted to know about the treatment of melanoma brain mets generally: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=brain&max-results=20&by-date=true

            And this recent thread on this forum gives me hope for melanoma peeps with brain mets: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/checkmate-204-update-practice

            Not sure if all this was what you had in mind….but…. I wish you and yours my very best. Celeste

              • September 12, 2019 at 9:51 pm
              Wicked Witch
              Participant
                Celeste you are an angel. Thank you for everything you do.

                Are you alright with me sharing your links and especially your blog over there?

                • September 13, 2019 at 12:59 pm
                Bubbles
                Participant
                  You are more than welcome to share links to my blog if you find them helpful! I wish you my best. c
                  • September 19, 2019 at 7:16 am
                  Dympsd
                  Participant
                    Did u ever form a group for the Brain Mets IV? How can I join?
                  • September 12, 2019 at 4:21 pm
                  MelanomaMike
                  Participant
                    Hi Wicked Witch! Long see no time haha, i know im not Bubbles or Ed but i am Mike!! Haha…if im understanding you right, i think you should start up your own FB Brain Met Club for Melanoma peeps with Brain Activity Only! I believe you know our sister Gin Young? (Or Gini) she to has mets in her brain plus a fairly new one in her jaw area that shes being treated with Radiation to it, i believe shes done now, like 4 blasts of it…I wish the best for you WW, Im in the same boat just different tumor locations….
                      • September 12, 2019 at 4:44 pm
                      ed williams
                      Participant
                        Just to add to what Mike said about all those out there like Gin Young or Celeste, myself included and many others especially since around 40 % of all stage 4 patients will develop brain mets. The problem that I found on the facebook group for stage 4, which I used to post on was that I got tired of fighting with the alternative medicine voices. Just not my cup of tea and to have to fight people pushing alternative shit just wore me down, so I decided to just hang out here on the forum where for the most part science still seems to be the mainstream!!!! I am sure I will hear from Gene, Gene the alternative medicine machine for saying that!!! You might want to talk with Ashley the “Admin” on the stage 4 sight as to how much work is involved with running a group. Best Wishes!!!Ed
                        • September 12, 2019 at 9:49 pm
                        Wicked Witch
                        Participant
                          I KNEW I could count on you guys! The information is so much appreciated!

                          Are you guys all okay with me sharing all of this information over there?

                          And I hear you Ed – the alternative goober make me wanna scream. I can assure you that I don’t and won’t have the patience for that.

                          • September 12, 2019 at 9:52 pm
                          Wicked Witch
                          Participant
                            And I still think that you, Mr. Knowledgeable Ed, should have his own website dedicated to all the melanoma research and information and experience you have. 😉
                            • September 12, 2019 at 9:50 pm
                            Wicked Witch
                            Participant
                              Thanks Mike, I will reach out to Gini. Stay strong brother, I see you got some new hope recently! *hugs*
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