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Very frustrated – plus message for Mat
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Very frustrated – plus message for Mat

› Forums › General Melanoma Community › Very frustrated – plus message for Mat

  • Post
    • October 23, 2018 at 8:22 am
    Bubbles
    Participant

      So…  vkshastri in all the numerical iterations….can post all sorts of crap and have it stay up for days.  I on the other hand try to reach out to Mat on his most recent post with some needed support and information and my post gets this pop-up:  

      "Your comment has been queued for review by site administrators and will be published after approval."

      If that is how things roll now….I guess that's okay.  Only thing is, last time this happened, no admins that I could find knew anything about it and no mechanism was set up to review anything!!!  Perhaps it is different now.  I have sent an email to Shelby and Adam. But to all MPIP managers:

      Melanoma doesn't wait.  We don't have time to waste on this kind of mess.  MRF has money.  Put some of it toward fixing this board.  It is a valuable asset to melanoma patients and a large part of the value of MRF!!!!

      To Mat:  I am so sorry, sweetie.  I will try to get my post up for you. It is clear that targeted and immuotherapy work in the brain.  Both tend to work better when combined with radiation, though I don't know if that is an option for you currently. There is a report on BRAFTOVI/MEKTOVI on my blog, as well as reports on BRAF for brain/CNS, and intrathecal treatment of LMD.  You can use the search bubble if you are interested.

      Rob (Adriana Cooper) may chime in and have useful information as well.

      Hang in there.  Much love, celeste

    Viewing 3 reply threads
    • Replies
        • October 23, 2018 at 11:04 am
        Mat
        Participant

          Thanks Celeste—much appreciated.  If it’s any consolation, I had to do about 10 CATCHPA puzzles in order to make my original post.  Crackerjack system they have hear at MRF.

            • October 25, 2018 at 8:41 pm
            Prd10
            Participant

              Hi Mat, 

              i didn't read all your previous posts sorry.  I did do the intrathecal trial for LMD though.  I was only able to tolerate one injection but we think based on symptons that it's done some good.  If you have questions feel free to fire away

              Caitlin 

            • October 24, 2018 at 3:58 pm
            Momofjake
            Participant

              Thank you! I am in desperate need of good information RIGHT NOW for Jake. We are in need of something and the doors keep closing! This board is so important and so often I cannot post! It’s impossible!!!!! When there’s no one to trust and we aren’t sure where to turn….I turn here. People who have done the trial, or treatment, or have studied for themselves or their loved one. We need this place. 

              Thanks. Hope you are feeling a little better and that you are finding your answers. 

              Kerri

              • October 24, 2018 at 7:40 pm
              MelanomaMike
              Participant
                Hi Bubbles, i feel your distress or better yet, your “sadness” of how MRF is conducting their website, i know its not an easy task to run such a large website with (most likely) very few “Able Body” workers (tech saavy folk).
                Nevertheless, to the guy Mat you spoke of, I Wish You Well Mat!! Hang in there buddy!…take care sister Celeste, and to MRF: Hire another Tech Person!! Iv noticed “Spam Saturday’s” are gettin better though! Not as many “Hodji” Snake Oil scam post’s!!…
                • November 15, 2018 at 11:28 am
                Jubes
                Participant

                  Hi les. Just wondering how you’re going?  I do hope you are getting stronger and closer to the Italy trip!  Love Anne-Louise xx

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