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Looking for information and support

› Forums › Ocular Melanoma Community › Looking for information and support

  • Post
    • April 14, 2012 at 8:52 pm
    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
      • April 14, 2012 at 9:55 pm
      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

      • April 14, 2012 at 9:55 pm
      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

      • April 14, 2012 at 9:55 pm
      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

        • April 15, 2012 at 11:33 am
        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

        • April 15, 2012 at 11:33 am
        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

        • April 15, 2012 at 11:33 am
        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

      • April 14, 2012 at 10:39 pm
      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

      • April 14, 2012 at 10:39 pm
      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

      • April 14, 2012 at 10:39 pm
      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

        • April 15, 2012 at 11:41 am
        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

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

        • April 15, 2012 at 11:41 am
        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

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

        • April 15, 2012 at 11:41 am
        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

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

         

      • April 14, 2012 at 11:21 pm
      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

      • April 14, 2012 at 11:21 pm
      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

      • April 14, 2012 at 11:21 pm
      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

Viewing 8 reply threads

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