2 year anniversary anne-Louise

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  • Post
    • August 13, 2016 at 11:38 pm
    Jubes
    Participant

      Hi all

      i have not posted for a while as (fortunately) not much has changed 

      however my 2 yr anniversary of stage 4 diagnosis had just past and I have gone back to work and so happy

      if it helps anyone, pembro did the trick for me

      i did 9 months worth but had terrible inflammation through my whole body so I couldn't move so I had to stop

      as the tumour in my lung had shrunk down from 9 to 3 cm stable the doctors were happy to stop. We tried various drug combos for the ankylosis spondolytis symptoms but nothing worked until I started infliximab (remicade) in April. I have done a course of 4 infusions and have almost weaned off steroids now. Now we will decide if it is worth doing the maintenance doses but either way I am functioning fine for now and so very happy and grateful to all of you Celeste, Ed mat josh and not forgetting dear Artie 

      anne-Louise 

    Viewing 5 reply threads
    • Replies
        • August 14, 2016 at 4:55 am
        Bubbles
        Participant

          I had almost posted a question….How's my Jubes!!??…just the other day! So glad to hear that your disease is stable and your arthralgias are under control. You are still gonna have to play that fiddle for me!  Even if you have to utube it! Thanks for the update. Much love, c

          • August 14, 2016 at 4:55 am
          Bubbles
          Participant

            I had almost posted a question….How's my Jubes!!??…just the other day! So glad to hear that your disease is stable and your arthralgias are under control. You are still gonna have to play that fiddle for me!  Even if you have to utube it! Thanks for the update. Much love, c

            • August 14, 2016 at 4:55 am
            Bubbles
            Participant

              I had almost posted a question….How's my Jubes!!??…just the other day! So glad to hear that your disease is stable and your arthralgias are under control. You are still gonna have to play that fiddle for me!  Even if you have to utube it! Thanks for the update. Much love, c

                • August 15, 2016 at 5:49 am
                Jubes
                Participant

                  Xxxxxxxx

                  • August 15, 2016 at 5:49 am
                  Jubes
                  Participant

                    Xxxxxxxx

                    • August 15, 2016 at 5:49 am
                    Jubes
                    Participant

                      Xxxxxxxx

                    • August 14, 2016 at 2:24 pm
                    Mamapegela
                    Participant

                      Thanks for posting positive stage 4 news!  I am afraid that I am joining the group.. I have to go in for a PET scan tomorrow after my CT last week showed growing and new nodules.  The impression of the CT read included : consistent with metastatic disease.  

                      So it is really really great to hear stories talking in terms of anniversaries and success.  So happy for you and wishes for your continued good health.

                      Peggy

                        • August 15, 2016 at 5:49 am
                        Jubes
                        Participant

                          Hang in there Peggy!! They have lots of things to try. Make sure you get the very best melanoma oncologist and good luck and prayers for your options working. Medical science is marvelous! A-L 

                          • August 15, 2016 at 5:49 am
                          Jubes
                          Participant

                            Hang in there Peggy!! They have lots of things to try. Make sure you get the very best melanoma oncologist and good luck and prayers for your options working. Medical science is marvelous! A-L 

                            • August 15, 2016 at 5:49 am
                            Jubes
                            Participant

                              Hang in there Peggy!! They have lots of things to try. Make sure you get the very best melanoma oncologist and good luck and prayers for your options working. Medical science is marvelous! A-L 

                            • August 14, 2016 at 2:24 pm
                            Mamapegela
                            Participant

                              Thanks for posting positive stage 4 news!  I am afraid that I am joining the group.. I have to go in for a PET scan tomorrow after my CT last week showed growing and new nodules.  The impression of the CT read included : consistent with metastatic disease.  

                              So it is really really great to hear stories talking in terms of anniversaries and success.  So happy for you and wishes for your continued good health.

                              Peggy

                              • August 14, 2016 at 2:24 pm
                              Mamapegela
                              Participant

                                Thanks for posting positive stage 4 news!  I am afraid that I am joining the group.. I have to go in for a PET scan tomorrow after my CT last week showed growing and new nodules.  The impression of the CT read included : consistent with metastatic disease.  

                                So it is really really great to hear stories talking in terms of anniversaries and success.  So happy for you and wishes for your continued good health.

                                Peggy

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