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Forum activity has virtually ceased and MRF does not seem to care

Forums General Melanoma Community Forum activity has virtually ceased and MRF does not seem to care

  • This topic has 10 replies, 9 voices, and was last updated 4 months ago by MMH.
  • Post
    chrispl1974
    Participant
      Dear fellow melanoma fighters,

      I joined this forum at the beginning of 2019 to seek advice and support after having been diagnosed with melanoma stage IIIa.

      The responses and the empathy shown by others was overwhelming and I am eternally grateful to many of you. Bubble was my support during those difficult month of targeted therapy and I will never forget here words of support and comfort.

      The daily posts and the vivid discussions helped me to better understand this disease.

      However, since the MRF IT team decided to switch to a new format, activity on this forum has virtually ceased. Also all of the background/bio information of the people on this forum has been deleted.

      I have written emails to the MRF team in the past, but I never got an answer.

      As a result, I get the impression nobody really cares and maybe the motives of running this forum are different from what we believe. (I worked for a couple of  years in Africa and I have seen my fair share of NGOs ,whose org. culture would make a hedge fund look like the salvation army).

      To cut a long story short, I feelvery sorry for Bubbles and others, who have put their heart into this and I dont know why no other user speaks up !

      Take care

      Christian

    Viewing 8 reply threads
    • Replies
        JudiAU
        Participant
          Well I’m here. I happen just happen to be alive (yeah) and in a treatment pause (yeah) so I haven’t really posted.

           

          I don’t have strong feeling about the new format but I miss the patient information. That was really helpful.

          gopher38
          Participant
            I’ve had some issue logging in and posting in the past, but that’s not why I’ve been silent recently; I’ve just had nothing to report.  Waiting for next scan.  If that’s bad, I suppose I’ll be back quickly looking for sympathy and advice on next steps.
            Mark_DC
            Participant
              I am here too – was wondering too why no one was posting // thought maybe the website had gone down

              I dont like the new format and the loss of profiles (maybe you can put them back), but not sure this is the reason it has gone quiet. Seems just fewer patients are posting. Also perhaps less news as there are fewer treatment breakthroughs. We do count on Bubbles and Ed, among others, to help out.

              For me this forum has been an incredible resource: I assumed other cancer patients had similar resources but I am not sure this is true. I received excellent advice and support. For me adding TVEC to pembro seemed to make the difference, but I think I read a recent ASCO paper claiming that adding TVEC was no better than pembro alone, and yet when I “know” that it defeated my tumour (when pembro alone had failed). And I have stopped treatment now for I think almost two years.

              Like gopher, I am in between scans – just did mine Saturday – my left leg MRI takes 1 hour 10 minutes to scan so that means 1 1/2 hours lying flat on the table and trying not to move. I hope it and my CT went well, will find out Wednesday. If so, then I will be grateful to my oncologist and surgeon, TVEC, and yes to God (I hope).

              Best wishes and good luck to everyone

              Mark

              Mark

              Bubbles
              Participant
                Hey Chris,

                I am so very glad that you found comfort here when you needed it most.  I am hopeful that others in need still do.

                Yes, the new format is very disappointing.  A group of us were “consulted” about the change.  Sadly, our main recommendations – improved ease of use, SPAM control, maintenance of profiles – were NOT adhered to.  Since implementation, many of us have communicated our concerns about the lack of those very things – along with complaints regarding the cluttered nature of the page; ridiculous badges and emojis; endless, unnecessary tags and categories of posts; and ironically, given all that, the uselessness of the current ‘search’ option; via emails as well as actually posts on the forum.  I admit I am dismayed by the outcome.  It seems that MRF has zero concept or interest in what actually works for patients, preferring to put their energies into fund raising and supporting those who lend their name and dollars, rather than in a direct effort to help those for whom this forum is important.  Mind you, I am a huge proponent of melanoma research, but concrete steps to help melanoma ratties is also essential!  I am terribly sorry that you were given no response to your email.  Sadly, we lost a great resource when MRF lost Shelby Moneer.  Oh, well.  I still hold out hope that the page will be improved.

                More importantly – you needn’t feel sorry for me.  Yes, I have put a great deal of personal effort into this forum (as have many others) over the past ten years.  However, I didn’t do it for MRF.  I did it in hopes of helping those who come here with questions and fears.  It is my way of sharing access and understanding that I have had the good fortune of experiencing with those who otherwise might not be so lucky.  Further, my blog is still available, updated with the latest melanoma data fairly regularly.

                I also hope that the diminished traffic on the forum has a lot to do with the fact that over time, local oncs have become more knowledgeable about the use and availability of both targeted and immunotherapy for melanoma patients and patients no longer face the desperate search for resources that I did.  Whatever the case, take hope.  We are all still here for one another and newbies as they drift in – no matter the sad state of the page itself.

                Much love and hope to you.  celeste

                Threefitty
                Participant
                  It has been quiet. So a good reminder this board benefits from all levels and perspectives of questions and interests.

                  Never be shy!

                  (also between scans at the moment)

                  So many emojis to choose from!

                  Emojis are exciting!

                  Christinad
                  Participant
                    I found this forum in 2014 when I was diagnosed with stage III. I didn’t post much back then or reply to posts but I read everyone else’s posts or searched for specific things I was personally interested in. I relied on this forum a lot for information related to my diagnosis. At that time it seemed like there were many more people on the site.  As time went on and each year passed I visited the sight less and less. Now that I’m stage IV I’m back and login daily to see if there are new posts I can learn something from but I agree the forum is quiet these days compared to previous years. I’m hoping that is because folks are having good success with Immunotherapy and are out living their lives.
                    chrispl1974
                    Participant
                      Dear all,

                      Thanks for the replies. In the meantime, I received an email from MRF staff . I will answer in due course.

                      I think we all agree that the activity has subsided since the new format was adopted.

                      Also, I agree with some of you that the most annoying aspect of new forum format is the fact that all PROFILE INFORMATION has been lost.

                      In my message to the MRF I will again ask if they somehow can restore this functionality.

                      Take good care and all the best to each and everyone of you.

                      Christian

                      Mark_DC
                      Participant
                        Thanks Christian and Christina,

                        I think Christina may be right in that nowadays as long as you find a melanoma specialist then their advice should be good and centered around immunotherapy. Back in 2016 Stage III i was being offered a trial of interferon vs. ipi (I think), making agonizing decisions and hoping you would get into the right trial, now I think you would be treqted with ipi nivo or pembro.

                        Where we can be of use is helping people through diagnosis, the right kind of biopsy, surgery (I had two and forgot how bad thet were), and in dificult cases where treatment does not work – what new options to consider. For me it was TVEC that made a difference but without this Board and my second opinion doctor, plus an oncologist here who wanted to try it (I had to switch doctor and hospital) I may not have made it. Now it seems to be TILs (reallt useful accounts of this on the board I think from Tim) and new combo treatments. But nothing radically new.

                        i try to log in in case i can help, and i hope each of you will too, have received great advice and support here 👍

                        best wishes Mark

                        MMH
                        Participant
                          I am here, and perhaps I am more of a lurker than a poster lately. That said, I have an underarm ultrasound scheduled and my panic level is high so I find great comfort knowing that whatever the outcome I can come here to find information and kindness. Thanks to all of the “constants” in this group. You are so appreciated.
                          ed williams
                          Participant
                            Why do I find this funny, “spam” landing on this specific thread about how MRF doesn’t care about how they destroyed the forum when they made changes and buried it where no one can find it!!!
                        Viewing 8 reply threads
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