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Looking for information and support

Forums Ocular Melanoma Community Looking for information and support

  • Post
    smorse
    Participant

      My husband was diagnosed with Stage 4 metastatic ocular (uveal) melanoma in Dec 2011. By the time he was diangnosed it had affected a large part of his liver but was not in any other area of his body. He started seeing Dr. Richard Carvajal at MSKCC in NYC in January and began a trial medication in February – AZD 6244 in February. He began to feel better almost immediately – the pain disappreared, better appetite, more energy – but in subsequent scans the tumor was not shrinking so three weeks ago they took him off the med and since then he is declining rapidly. The reason they took him offf the trial med is because the criteria for testing was tumor shrinkage so it almost didn't matter that he felt better. He is due to start Yervoy this coming Tuesday and we are hopeful that may have some good results. I have also done some reading about the combination of Yervoy and radiation which has been in the news recently and there is hope there – although I haven't asked the Dr. about that yet.. Anyway, is there anyone out there who is also struggling with this type of melanoma – the ocular one that my husband Neil has? That has metastasized to the liver? Does anyone know about the combination of Yervoy and radiation or another treatments that we could look into? I would so apprecaite hearing back from you. This disease is a terrifying monster and I so want to find something tthat will help him.  Susan Morse

    Viewing 8 reply threads
    • Replies
        James from Sydney
        Participant

          Has your Doctor checked to see if your husband's Tumor has the CKIT Mutation, it is most commonly found in Mucosal areas but can be found in Uveal Melanoma as well. If he has the mutation then he can start Gleevec. I hope you see a turnaround soon.

           

          best wishes

          James

          James from Sydney
          Participant

            Has your Doctor checked to see if your husband's Tumor has the CKIT Mutation, it is most commonly found in Mucosal areas but can be found in Uveal Melanoma as well. If he has the mutation then he can start Gleevec. I hope you see a turnaround soon.

             

            best wishes

            James

            James from Sydney
            Participant

              Has your Doctor checked to see if your husband's Tumor has the CKIT Mutation, it is most commonly found in Mucosal areas but can be found in Uveal Melanoma as well. If he has the mutation then he can start Gleevec. I hope you see a turnaround soon.

               

              best wishes

              James

                smorse
                Participant

                  James, Thank you for responding.  i will ask the Dr. about that mutation and Gleevec.  I know his tumor was checked for other mutations that we required in order for him to receive the ADZ trial med he was given.  I appreicate you suggestion and good wishes.  Susan

                  smorse
                  Participant

                    James, Thank you for responding.  i will ask the Dr. about that mutation and Gleevec.  I know his tumor was checked for other mutations that we required in order for him to receive the ADZ trial med he was given.  I appreicate you suggestion and good wishes.  Susan

                    smorse
                    Participant

                      James, Thank you for responding.  i will ask the Dr. about that mutation and Gleevec.  I know his tumor was checked for other mutations that we required in order for him to receive the ADZ trial med he was given.  I appreicate you suggestion and good wishes.  Susan

                    WendyPam
                    Participant

                      Hi Susan,

                       

                      My Mother has mucosal melanoma of a different type. Have you spoken to your Dr about he combination of both Yervoy and Ant-pd1? They do have trials like this available and are saying it's a good combination.

                      Best of luck to you and your husband!

                       

                      Wendy

                      WendyPam
                      Participant

                        Hi Susan,

                         

                        My Mother has mucosal melanoma of a different type. Have you spoken to your Dr about he combination of both Yervoy and Ant-pd1? They do have trials like this available and are saying it's a good combination.

                        Best of luck to you and your husband!

                         

                        Wendy

                        WendyPam
                        Participant

                          Hi Susan,

                           

                          My Mother has mucosal melanoma of a different type. Have you spoken to your Dr about he combination of both Yervoy and Ant-pd1? They do have trials like this available and are saying it's a good combination.

                          Best of luck to you and your husband!

                           

                          Wendy

                            smorse
                            Participant

                              Wendy,

                              Thanks for your response.  I have just been reading about pd1 and plan to talk to the Dr. on Tuesday when Neil is scheduled to start yervoy.  I appreciate your good wishes.  Susan

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                               

                              smorse
                              Participant

                                Wendy,

                                Thanks for your response.  I have just been reading about pd1 and plan to talk to the Dr. on Tuesday when Neil is scheduled to start yervoy.  I appreciate your good wishes.  Susan

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                 

                                smorse
                                Participant

                                  Wendy,

                                  Thanks for your response.  I have just been reading about pd1 and plan to talk to the Dr. on Tuesday when Neil is scheduled to start yervoy.  I appreciate your good wishes.  Susan

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                   

                                Janner
                                Participant

                                  There is a separate ocular melanoma board on this site.  Go to: 

                                  http://www.melanoma.org/community/mpip-melanoma-patients-information-page/looking-information-and-support

                                  You might find more information specific to OM there as well.

                                  Best wishes,

                                  Janner

                                  Janner
                                  Participant

                                    There is a separate ocular melanoma board on this site.  Go to: 

                                    http://www.melanoma.org/community/mpip-melanoma-patients-information-page/looking-information-and-support

                                    You might find more information specific to OM there as well.

                                    Best wishes,

                                    Janner

                                    Janner
                                    Participant

                                      There is a separate ocular melanoma board on this site.  Go to: 

                                      http://www.melanoma.org/community/mpip-melanoma-patients-information-page/looking-information-and-support

                                      You might find more information specific to OM there as well.

                                      Best wishes,

                                      Janner

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