MRF-Logo2019-Horizontal-RGB
2 years, 21 months since start of Ipi (3mg) Adjuvant trial– NED
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

2 years, 21 months since start of Ipi (3mg) Adjuvant trial– NED

› Forums › Ocular Melanoma Community › 2 years, 21 months since start of Ipi (3mg) Adjuvant trial– NED

  • Post
    • March 19, 2015 at 11:03 pm
    katie1
    Participant

      My husband (IIIC-11 mm amelanotic nodular melanoma) is participating in the Ipi vs Interferon adjuvant trial.  He received all the induction infusions (3mg arm) but did not receive any maitenance doses due to toxic side effects (grade 4 hypophysitis).  He had many side effects from the Ipilimumab (dermatologic, ocular, neurologic, gastro-intestinal and endocrine). All have mostly resolved except that he has permanent adrenal insufficiency.  He remains NED.  Hoping this might give hope to those who may have started the trial more recently.

      Kate

    Viewing 2 reply threads
    • Replies
        • March 20, 2015 at 12:25 am
        Squash
        Participant

          That was a big melanoma, 11mm amelanotic nodular melanoma!

          Mine was also amelanotic nodular 6.5mm.

          The doctors didnt expect me to be around for very long.

          It just goes to show how unpredictable melanoma can be.

          People can have much smaller ones and end up with worse disease.

          Congratulations on NED status.

          I am 18 months out and going quite well. I havent done any treatments at all because i am afraid of all the side effects like your husband has gone thru.

          Good luck for the future.

           

           

           

           

           

          • March 20, 2015 at 12:25 am
          Squash
          Participant

            That was a big melanoma, 11mm amelanotic nodular melanoma!

            Mine was also amelanotic nodular 6.5mm.

            The doctors didnt expect me to be around for very long.

            It just goes to show how unpredictable melanoma can be.

            People can have much smaller ones and end up with worse disease.

            Congratulations on NED status.

            I am 18 months out and going quite well. I havent done any treatments at all because i am afraid of all the side effects like your husband has gone thru.

            Good luck for the future.

             

             

             

             

             

            • March 20, 2015 at 12:25 am
            Squash
            Participant

              That was a big melanoma, 11mm amelanotic nodular melanoma!

              Mine was also amelanotic nodular 6.5mm.

              The doctors didnt expect me to be around for very long.

              It just goes to show how unpredictable melanoma can be.

              People can have much smaller ones and end up with worse disease.

              Congratulations on NED status.

              I am 18 months out and going quite well. I havent done any treatments at all because i am afraid of all the side effects like your husband has gone thru.

              Good luck for the future.

               

               

               

               

               

          Viewing 2 reply threads

          Tagged: ,

          • You must be logged in to reply to this topic.
          About the MRF Patient Forum

          The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

          The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.