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.

Adrenal Insufficiency.

Forums General Melanoma Community Adrenal Insufficiency.

  • Post
    jogo
    Participant

      One year NED as of D-day (June 6th).  Ipilimumab (3 mg/kg body weight) was stopped after second infusion in clinical trial E1609 due to an irAE that was off the charts.  Inflammatory ulcerative colitis seems to have been taken care of thanks to 2 infusions of infleximab (Remicade).  Still careful about diet.  Still waiting for hair to grow back.  Now I'm told that while the MRI did not show hypophisitis, I do have AI, adrenal insufficiency.  My Medic Alert medallion now will have to be the size of a hub cap.  I have anaphylaxis to peanuts and all tree nuts and their oils.  I will have to add information about my adrenal insufficiency.  This is important in an ER situation. I obviously need information and instruction on how to deal with this new development.  Florinef, prednisone, and epi-pens, oh my!  One NED day at a time sounds good to me.smiley

    Viewing 2 reply threads
    • Replies
        Tina D
        Participant

          Congratulations on your 1 year NED! I also have adrenal insuf. Just saw an endocrinologist who gave me lots of helpful info on how to "stress dose". Your endo should have similar info for you. Mine was also sue to ipi. Am havingan adrenal stimulation test end of June to further evaluate. Remain on 5 mg prednisone currently.

          I agree… one day at a time and manage the side effects with continued gratitude for neing alive ๐Ÿ™‚

          Tina

            jogo
            Participant

              Thanks Tina.  While dealing with ipi induced ulcerative colitis in the hospital, I developed orthostatic hypotension (allegedly from the massive doses of prednisone 100 mg).  In the hospital, I was given Florinef 0.1 mg b.i.d. to deal with the adrenal inactivity.  Back home, when I was down to 5 mg prednisone, I had the ACTH test.   My adrenal glands produced cortisol and so my endo took me off the prednisone and the prednisone.  A few days later, I was exhausted by the afternoon.  My endo put me back on the 5 mg prednisone and 0.1 mg florinef both once a day.  She wants to get me off the prednisone and florinef will do do another wait and see in September.  Massive wedding in July with in-law family whom I haven't seen in years.  My husband has told me he intends to tell them about my adventures with metastatic melanoma.  I will talk to my endo on how to stress dose ASAP.  I am so thankful for every day.smiley

              jogo
              Participant

                Thanks Tina.  While dealing with ipi induced ulcerative colitis in the hospital, I developed orthostatic hypotension (allegedly from the massive doses of prednisone 100 mg).  In the hospital, I was given Florinef 0.1 mg b.i.d. to deal with the adrenal inactivity.  Back home, when I was down to 5 mg prednisone, I had the ACTH test.   My adrenal glands produced cortisol and so my endo took me off the prednisone and the prednisone.  A few days later, I was exhausted by the afternoon.  My endo put me back on the 5 mg prednisone and 0.1 mg florinef both once a day.  She wants to get me off the prednisone and florinef will do do another wait and see in September.  Massive wedding in July with in-law family whom I haven't seen in years.  My husband has told me he intends to tell them about my adventures with metastatic melanoma.  I will talk to my endo on how to stress dose ASAP.  I am so thankful for every day.smiley

                jogo
                Participant

                  Thanks Tina.  While dealing with ipi induced ulcerative colitis in the hospital, I developed orthostatic hypotension (allegedly from the massive doses of prednisone 100 mg).  In the hospital, I was given Florinef 0.1 mg b.i.d. to deal with the adrenal inactivity.  Back home, when I was down to 5 mg prednisone, I had the ACTH test.   My adrenal glands produced cortisol and so my endo took me off the prednisone and the prednisone.  A few days later, I was exhausted by the afternoon.  My endo put me back on the 5 mg prednisone and 0.1 mg florinef both once a day.  She wants to get me off the prednisone and florinef will do do another wait and see in September.  Massive wedding in July with in-law family whom I haven't seen in years.  My husband has told me he intends to tell them about my adventures with metastatic melanoma.  I will talk to my endo on how to stress dose ASAP.  I am so thankful for every day.smiley

                Tina D
                Participant

                  Congratulations on your 1 year NED! I also have adrenal insuf. Just saw an endocrinologist who gave me lots of helpful info on how to "stress dose". Your endo should have similar info for you. Mine was also sue to ipi. Am havingan adrenal stimulation test end of June to further evaluate. Remain on 5 mg prednisone currently.

                  I agree… one day at a time and manage the side effects with continued gratitude for neing alive ๐Ÿ™‚

                  Tina

                  Tina D
                  Participant

                    Congratulations on your 1 year NED! I also have adrenal insuf. Just saw an endocrinologist who gave me lots of helpful info on how to "stress dose". Your endo should have similar info for you. Mine was also sue to ipi. Am havingan adrenal stimulation test end of June to further evaluate. Remain on 5 mg prednisone currently.

                    I agree… one day at a time and manage the side effects with continued gratitude for neing alive ๐Ÿ™‚

                    Tina

                Viewing 2 reply threads
                • 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 byย MRF posting policies.

                Popular Topics