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Where is my profile?
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Where is my profile?

› Forums › General Melanoma Community › Where is my profile?

  • Post
    • October 29, 2019 at 6:13 am
    DZnDef
    Participant
      Hi all, I’ve been off the board for quite a while and now find the site is totally different and my profile is gone. What gives? Does your profile get deleted if you don’t post for a certain amount of time? Oddly feels like someone decided .I didn’t make it. Do I need to recreate my profile from scratch?
      Glad to see many familiar usernames posting. Still dealing with brain mets myself.
      Cheers!
      Maggie
    Viewing 2 reply threads
    • Replies
        • October 29, 2019 at 6:22 am
        DZnDef
        Participant
          Very strange, my profile appears to be back now (I need to update it). Why is MPIP part of MRF now?
            • October 29, 2019 at 8:30 am
            Christiane29
            Participant
              Are you on active treatment for the brain mets? How are you doing? Wishing you all the best!
              • October 29, 2019 at 10:27 pm
              DZnDef
              Participant
                Hi Christiane,
                I will be having gamma knife on Halloween. 2019. My current systemic treatment is Yervoy (too soon to know if it is helping elsewhere). I might be looking for a trial next but not sure if I would qualify for anything having gone through lots of treatments and having an active brain met. We shall see..
                • October 30, 2019 at 6:52 pm
                sister of patient
                Participant
                  Hi Maggie – I’m always so glad to read your posts no matter how often (or not) they appear 🙂 I am never “far” from the board either and am a “lurker” now more often than not. I want to wish you the best for tomorrow though – will be thinking of how those magic gamma rads will be kicking butt for you!!! I did see your post too on the recent questions I asked – thanks so much for talking about craniotomies – not an easy subject!!! You take care!! Best, always,

                  Barb

                • October 29, 2019 at 11:56 am
                Bubbles
                Participant
                  Hi Maggie,

                  MPIP has always been the forum for the MRF organization. They did upgrade the site in an attempt to make it more accessible but most importantly to deal with spammers. I haven’t heard that others “lost” their profiles. When I click on your log-in “name” I can see it, though it doesn’t look as though it has been updated since 2015. I think if you click on your own DZnDEF name, you should see it. When you do that there should be an “edit” tab above your profile should you wish to use it. I wish you my best. celeste

                    • October 29, 2019 at 10:34 pm
                    DZnDef
                    Participant
                      Hi Celeste! I am thrilled to see that you continue to be active helping people out. We have not always agreed on some issues but I have a huge amount of respect for your passion to help others and your phenomenal knowledge on treatments. I expect you are done with your treatment of the other cancer you had to deal with. Is there a link you could provide t a recap of your experience? I hope you are doing well.
                      Cheers!
                      Maggie
                    • October 29, 2019 at 9:44 pm
                    Julie in SoCal
                    Participant
                      Awesome! So glad to see you here Maggie! Glad you don’t have to resurrect your profile either!

                      Brain mets stink though!
                      Julie

                        • October 29, 2019 at 11:01 pm
                        DZnDef
                        Participant
                          Hey, Julie! Great to see that you continue to be active here. Rock star doc has done well by me as I am still kicking.. Running low on options if my current treatment plan (Yervoy) doesn’t pan out. But it will. Even so, It’s nice to have a backup plan ready to go in case (thanks to Artie for that idea). Just provides some piece of mind as not every treatment works for every patient. Rock Star doc and all my team have done a great job keeping me around long enough to try “the next thing”. And the next thing might do the trick for me. My NED is out there, I just need to hang around long enough to find it. Kudos to my team for keeping me in the game. Special shout out to Christine, NP, for keeping me going when RS Doc is out of town. They make a great team. My whole team is great as my longevity would indicate. I need to update my profile so it is clear who all that is. Keep conquering the beasts!
                          Cheers!
                          Maggie
                          • October 30, 2019 at 1:04 am
                          Julie in SoCal
                          Participant
                            Good news for sure! So good that you have a plan and a back up!!!

                            Yes Christine is the best!!!! Although she did give me herpes (hehehe).

                            I hope to my path results from my bronchoscopy and get a plan tomorrow. Seems I’m complicated with both active mel and active lung cancer. RS Doc said he would need to burn some brain cells to come up with a plan. I’m sure he has a few to spare.

                            So good to hear you’re still hanging in there!
                            Julie

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