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Trying to add to my previous post and looking for advice?
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Trying to add to my previous post and looking for advice?

› Forums › General Melanoma Community › Trying to add to my previous post and looking for advice?

  • Post
    • January 20, 2021 at 10:29 am
    Rosiepup
    Participant
      Hi all, sorry I tried to add this to my previous post about brain mets but I couldn’t see what I was typing! I’ve just had a call and I’ve to attend the clinic tomorrow morning to discuss future plans.

      I have got some questions myself but I wondered if any of you could think of anything you’d be asking? Any help would be greatly appreciated, I’m so uptight, I’m probably not thinking straight! My initial post with the information was last Friday ‘Brain mets slow growing…….  If you’re able to help and need more information let me know?

      Thanks so much for listening! Fiona ❤️❤️

    Viewing 10 reply threads
    • Replies
        • January 20, 2021 at 12:05 pm
        Bubbles
        Participant
          Hey Fiona,

          This is a test.  I’m tired of putting effort in responses that never show up!  celeste

          • January 20, 2021 at 12:08 pm
          Bubbles
          Participant
            Test #2 – in case it could help others – this is what I attempted to post for you the other day and shared via email –
            Melanoma is a persistent B!$(%!!!!!  Here are my thoughts –
            1.  Though the lesions have grown, perhaps the continued nivolumab (Opdivo) is keeping them at bay since they have been very slow growing.
            2. Add SRS and carry on!
            3. The more confusing option is that they are not melanoma but some other slow growing tumor type.  In the brain that is very difficult to ascertain given the complexity of biopsy – so you’re probably back to SRS as a treatment option anyway.  Given your history, they are probably melanoma, but melanoma patients can develop other things.
            4. There have been some occasions where ipi/nivo was repeated after a bad response and was tolerated by patients.  Some docs will try the combo again with very close observation and the rapid addition of steroids and other care if needed.  That would require a detailed conversation with your doc and a very clear treatment plan.
            Here are some links that you might find helpful:
            Here are tons of links on brain mets – scroll through to find more recent posts and those you feel are more pertinent:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=brain+mets
            A post with links to others regarding those with a prior adverse reaction or preexisting immune related disease attaining success with mmunotherapy:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/03/patients-with-preexisting-immune.html
            The search bubble on my blog might be helpful.  Hope this bit helps.  I’m sure your docs will help you develop a good treatment plan in the coming week.  Let us know.
            Wishing you my best.  Celeste
            • January 20, 2021 at 12:09 pm
            Bubbles
            Participant
              Well there you go.  I created a meaningful response and it didn’t post!  c
              • January 20, 2021 at 12:23 pm
              Rosiepup
              Participant
                Hi Celeste, sorry but no full response is showing! But your test is. Not sure if that’s good or bad!

                Thanks ❤️

                • January 20, 2021 at 3:30 pm
                Rosiepup
                Participant
                  Thanks Ed, I do worry about the SRS. I meant to say earlier. Especially as the original area that was zapped is still getting bigger, 2 and a quarter years after the STS. Is that unusual? I always thought it was necrosis but because it’s continued to get bigger, roughly 18x16x19mm. Initial lesion 5mm! I now worry it’s something to worry about!  Just generally getting my knickers in a twist! Sorry all! Thanks so much for being there!👍🤩
                  • January 20, 2021 at 3:44 pm
                  Rosiepup
                  Participant
                    Hi thanks so much for that Celeste, it’s attached now 👍❤️
                    • January 20, 2021 at 4:38 pm
                    ljohnston
                    Keymaster
                      Thanks for all your work on assisting with the replies Celeste!
                      • January 20, 2021 at 4:55 pm
                      ed williams
                      Participant
                        Is there anybody out there / I am typing but can’t see if it is working! Test to see if it is worth staying around to help or giving up on this new improoved web site?
                          • January 20, 2021 at 5:00 pm
                          ed williams
                          Participant
                            So that last post was done with no typing showing up, and now on this post I can see what I am writing. I had an old car back in the early 1980’s that I used to have to park on a hill because the batter used to go flat and I would have to jump start it with the clutch. Same feeling with responding to post on the new and improved forum, never sure if it is going to work or not or show up or not or where to find them after the fact!!!
                          • January 20, 2021 at 5:05 pm
                          Rosiepup
                          Participant
                            Hi Ed, yes I can see your test message 👍 I’ve found that if you go down to the very last reply there’s a reply box at the very bottom. And I can see what I’m typing? And hopefully if this posts that works? The only thing is you have to prove your not a robot and then press the submit button which is after the tag list 🤞
                              • January 20, 2021 at 5:25 pm
                              ed williams
                              Participant
                                Yes it seems to work fine when you reply to a comment made after original post but not the original post at top of page. I keep getting blank screen where I can’t see what I am typing in those situations. I also tried creating a new post just to answer a question only to not see it show up. Not sure what one is suppose to do when creating new post to get it to show up in right place or is there some kind of person approving(screening) what gets posted and doesn’t release posts until read???
                              • January 20, 2021 at 7:11 pm
                              Rosiepup
                              Participant
                                Ed sorry but were you possibly adding anything re my clinic appointment tomorrow morning (about 5am for you!😬)  Celeste has been fantastic!👍❤️ But I’m really getting anxious, despite having been here many times before!😒🤞🙏
                                  • January 20, 2021 at 3:12 pm
                                  ed williams
                                  Participant
                                    Sorry Fiona, I did have some thoughts to add to what Celeste has given you. Slow growing over long period of time is positive and watch and wait might be the path they suggest. Using SRS again but in another region is a very reasonable idea and many have had to go back more than once for SRS to hit new tumors that pop up. In another group there is a lady treatment in California that has had more than 20 mets over the years treated by SRS by Dr. Eric Chang who is world expert with this technology and she is doing great years after treatment. I had 3 small 4 to 5mm tumors treated by cyberknife SRS radiation back in 2013 and things have remain stable in my brain up to my last scans in December. I know it might be over kill but I have a video from MD Anderson conference of radiation oncologists and surgeon and at the 1:00 hr mark they get into melanoma specific research in the brain. The whole video is pretty good but if you want to skip over to the melanoma stuff then go right to 1:00hr mark. I have some more brain specific video’s if you are interested in doing some research, just let me know and I will send some more stuff your way. They would be similar to this link I am sending today. Best Wishes!!!Ed https://www.youtube.com/watch?v=TdAv03N3z8U
                                    • January 20, 2021 at 3:35 pm
                                    Rosiepup
                                    Participant
                                      Sorry Ed my reply to you has gone half way up the list of replies! If you can let me know if you can see it? Thanks
                                      • January 20, 2021 at 5:06 pm
                                      Rosiepup
                                      Participant
                                         

                                        Thanks Ed, et al! I’m sorry if you’ve seen this but I’m not sure if it’s shared properly! And I’m getting pre-clinic-uptight!

                                        I do worry about the SRS. I meant to say in my post earlier. Especially as the original area that was zapped is still getting bigger, 2 and a quarter years after the STS. Is that unusual? I always thought it was necrosis but because it’s continued to get bigger, roughly 18x16x19mm. Initial lesion 5mm! I now worry it’s something to worry about! And will the other option be surgery? Just generally getting uptight!  Sorry all! Thanks so much for being there!👍🤩

                                      • January 20, 2021 at 7:48 pm
                                      ljohnston
                                      Keymaster
                                        Hi all- just wanted to let you know that the reply issues will hopefully be fixed by end of today. Sorry for all the trouble!!- Lauren
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