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Out of the study
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Out of the study

› Forums › General Melanoma Community › Out of the study

  • Post
    • March 20, 2014 at 6:13 am
    Ninniditti
    Participant

      Hello all!

      I have been in a study nivo/dacarbazine for 12 weeks now. I have hoped that I got nivo but my new MR showed progress so I am out of the study. My MM is in sinus maxillaris and masseter, upper yaw, palatine bone are involved and its growing next to the scullbase. I have had max radiation in this area a few years ago when my MM first started in my nose cavity. So radiation nor surgery is an option. Probably I will get ipi now. I have been told that I will never know which arm I was in. If MM proceed they assume I got dacarbazine. I am quite upset and depressed now but feel a lot of comfort visiting this forum. 

    Viewing 11 reply threads
    • Replies
        • March 20, 2014 at 1:52 pm
        Bubbles
        Participant

          So sorry, Inger. I would feel really sad and upset, too!!  There are many folks on this forum with good results on ipi and I am wishing that for you as well.  Hang in there!  Yours, Celeste

            • March 20, 2014 at 2:17 pm
            tschmith
            Participant

              I too am sorry this has happened to you.  Hopefully the FDA will approve Nivo soon.  I know we're all wishing for that.  Praying that another and better door will open for you.

              Terrie

              • March 20, 2014 at 2:17 pm
              tschmith
              Participant

                I too am sorry this has happened to you.  Hopefully the FDA will approve Nivo soon.  I know we're all wishing for that.  Praying that another and better door will open for you.

                Terrie

                • March 20, 2014 at 2:17 pm
                tschmith
                Participant

                  I too am sorry this has happened to you.  Hopefully the FDA will approve Nivo soon.  I know we're all wishing for that.  Praying that another and better door will open for you.

                  Terrie

                • March 20, 2014 at 1:52 pm
                Bubbles
                Participant

                  So sorry, Inger. I would feel really sad and upset, too!!  There are many folks on this forum with good results on ipi and I am wishing that for you as well.  Hang in there!  Yours, Celeste

                  • March 20, 2014 at 1:52 pm
                  Bubbles
                  Participant

                    So sorry, Inger. I would feel really sad and upset, too!!  There are many folks on this forum with good results on ipi and I am wishing that for you as well.  Hang in there!  Yours, Celeste

                    • March 21, 2014 at 4:17 pm
                    page85
                    Participant

                      Inger, You are right, this support group is TOPS for making one feel better.  I had no idea MM could affect one in the nasal cavity.  Are you in a lot of pain?  Does this affect your breathing?  Are you on an oxygen machine?  You will be in my thoughts and prayers.

                      • March 21, 2014 at 4:17 pm
                      page85
                      Participant

                        Inger, You are right, this support group is TOPS for making one feel better.  I had no idea MM could affect one in the nasal cavity.  Are you in a lot of pain?  Does this affect your breathing?  Are you on an oxygen machine?  You will be in my thoughts and prayers.

                        • March 21, 2014 at 4:17 pm
                        page85
                        Participant

                          Inger, You are right, this support group is TOPS for making one feel better.  I had no idea MM could affect one in the nasal cavity.  Are you in a lot of pain?  Does this affect your breathing?  Are you on an oxygen machine?  You will be in my thoughts and prayers.

                          • March 23, 2014 at 12:51 am
                          Jahendry12
                          Participant

                            We are all here for you. Hang in there and try to stay positive!

                            • March 23, 2014 at 12:51 am
                            Jahendry12
                            Participant

                              We are all here for you. Hang in there and try to stay positive!

                              • March 23, 2014 at 12:51 am
                              Jahendry12
                              Participant

                                We are all here for you. Hang in there and try to stay positive!

                                • March 23, 2014 at 7:43 am
                                Ninniditti
                                Participant

                                  I have mucosal melanoma in my right nosecavity which has spread to my left sinus. I have pain especially in my left upper yaw but all the space from my upper yaw to the eyes can ace. I use painkillers. It was more easy to endure the pain when I was hoping I got PD-1in the study. Now I feel miserable and can't feel much hope but I feel comfort by your answes. 

                                  • March 23, 2014 at 7:43 am
                                  Ninniditti
                                  Participant

                                    I have mucosal melanoma in my right nosecavity which has spread to my left sinus. I have pain especially in my left upper yaw but all the space from my upper yaw to the eyes can ace. I use painkillers. It was more easy to endure the pain when I was hoping I got PD-1in the study. Now I feel miserable and can't feel much hope but I feel comfort by your answes. 

                                    • March 23, 2014 at 7:43 am
                                    Ninniditti
                                    Participant

                                      I have mucosal melanoma in my right nosecavity which has spread to my left sinus. I have pain especially in my left upper yaw but all the space from my upper yaw to the eyes can ace. I use painkillers. It was more easy to endure the pain when I was hoping I got PD-1in the study. Now I feel miserable and can't feel much hope but I feel comfort by your answes. 

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