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Sad news from Joanne Towens.

Forums General Melanoma Community Sad news from Joanne Towens.

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      Bubbles
      Participant
        Oh, my goodness, I hate to hear that. MarkR here – wasn’t he? He did not go quietly. Bless him and all those who loved him. Thanks for sharing, my friend. c
          ed williams
          Participant
            Hi Celeste, his sister has been a member on the stage 4 group for a long time and shared the news. It is sad for sure and so is the response on the old MRF these days. On the stage 4 site 135 people liked and 73 wrote a response to her post yesterday. It used to be like that here. This is last post from Mark that I could find on the forum. https://forum.melanoma.org/forums/topic/shalom/

          sing123
          Participant
            Very sad about MarkR. His getting treatment in Israel (based in part on his amazing donors, which must have made him feel greatly cared for and supported) sounded so promising. Thinking of his family.
            JudiAU
            Participant
              This is tragic. I don’t recall his posts but to lose a treatment option/need to delay treatments because of covid is awful. I know so many people with significant health needs who have suffered because of covid delays.
              chrispl1974
              Participant
                CutaneousClinical Trial ParticipantNEDMucosal
                Very sad news indeed. I followed his struggle and I wish his family strength during this most difficult time.
                Mark_DC
                Participant
                  Ed – thanks very much for sharing. Am saddened by this, but was wondering why Mark was no longer posting, but hoping for the best. I followed his treatment (and the vagaries of the UK/NHS) closely plus also his decision to try treatment in Israel (but was not aware of all the troubles he went through to get there, incredible persistence to make it through all the checks, and during covid). We share the same name and nationality so I felt close.

                  I dont know what the stage4 group is, are more ideas shared there or is it private? I hope our board will become more active, but I attributed the slowdown maybe to better understanding of the available treatments and fewer recent breakthroughs.

                  Am sorry for this news but thanks for sharing and your many posts too Ed!
                  Best wishes Mark

                    ed williams
                    Participant
                      mark it is a Facebook group that you have to ask to join, since they want to keep it stage 4 focused.Do search on Facebook for stage 4 private melanoma group. home page has “get naked” photo, ask to join, you have to answer a couple of questions. Ashley is admin and she add people every few week in groups of 20 or 30 new members. there are a couple of thousand members with probably 50 very active members with the rest commenting once in awhile. Good overall atmosphere!
                      Mark_DC
                      Participant
                        Ed – thanks very much for the initial post (when Mark R used to post then we would often discuss w each other (aside from trying to give advice; I was thinking through what my life and treatment would be like if I was back in the UK – I do want to go back but honestly think our UK patients are treated terribly, our NHS is amazing but so underfunded and nurses doctors overworked = tragic).

                        Thank you for mentioning the new group. I guess it’s not a bad idea to try to keep the discussion moderated. However, it’s a pity for new patients – it may be hard for them to find. I counted on this forum (and many people here, whether the “experts” or some like Gary from Hawaii whose experience w his graefruit tumour gave me hope). I hope new patients can either post her and get help, or go to the new place.

                        On the bright side for me – I am kind of NED (I really hate to write this as I dont want to jinx it) and never made it to stage IV (I was IIIC or IIID if it exists). Then TVEC (plus pembro) started to turn things around. (I did have a difficult time – was reading my doctor visit reports online this morning, left me quite emotional.) So I dont think I would be eligible to join. Plus I deleted facebook! But it’s great to know this, in case I get a recurrence and then I will probably freak out plus need advice on what to try.

                        I would like to thank everyone here for all the advice and support you give. And your incredible stories.

                        Best wishes Mark

                      ed williams
                      Participant
                        I will try this link for you Mark, I hope it shows the site for you on Facebook. https://www.facebook.com/search/top?q=melanoma%20stage%204%20support%20group
                        jbronicki
                        Participant
                          Wow, that is such incredibly sad news. I haven’t been on the forum in a while and just checked today, devastating news to hear. I still remember Mark’s story of his incredible work in London on the Thames. He was so humble and so nice. Thank you Ed for posting the link, it was nice to see all the pictures of him and his beautiful family. Hard to believe he had to go through all that on top of all the COVID restrictions, etc. That is truly a battle. May he rest in peace, his family clearly adores him and was clearly beloved by so many, so sad for them. No other words that might make sense of any of this.
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