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Progress managing long-term ipi side effects – hurrah!
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Progress managing long-term ipi side effects – hurrah!

› Forums › General Melanoma Community › Progress managing long-term ipi side effects – hurrah!

  • Post
    • September 16, 2016 at 11:42 am
    MoiraM
    Participant

      I had my scan results a week ago – still NED so I am now one-third of the way to that three year milestone.

      I went to see my endcronologist today. (My anterior pituitary gland stopped working on ipi and no one thinks it will recover.)

      I have been trying to get my cortisol replacement dose right for a year now. The 'textbook' replacement dose was too low and my requirement each day varies, even though this is not 'meant' to happen.

      Great news, my consultant has approved what I have been doing – 8 mg prednisolone a day and a 'quarter-up' (e.g. 10 mg) rather than 8 mg on bad days, when I have headaches, muscle pains and feel 'wobbly'.

      Also I have followed up on another clue from someone else and investigated my replacement thyroxine dose. My tests put me in the middle of the acceptable range (my T4 was ~14 pmol/L). He suggested pushing it up to nearer the top of the range. I am now on 75mcg levothyroxine one day and 100 mcg the next, my T4 is ~16 pmol/Land I am less tired. Hopefully the two are connected because I can probably go to 100 mcg everyday, aiming at a T4 of ~18pmol/L, which may mean more staying power.

      At this rate I will be able to keep my job!

      Thanks to everyone on here who were supported when I posted about struggling with being chronically ill. It helped me get my head in the right place for my consultation.

    Viewing 14 reply threads
    • Replies
        • September 16, 2016 at 2:42 pm
        BrianP
        Participant

          Congrats on the scans!  Glad things are getting worked out with the endocrine system.  It definitely seems more like an art than a science with that stuff.  When I first started my prednisone doses I found that 5mg was not enough so I started taking 5 mg in the morning and 2.5 mg in the early afternoon.  I really tried to avoid taking the 2.5 mg after 3pm because it really seemed to effect my sleep if I did.  About 3 months ago I noticed I really didn't need the 2.5 mg in the afternoon anymore.  It got me thinking maybe I had regained some of my adrenal function.  I talked to my endocrinologist who said I could try and stop the prednisone for 3 days and have lab work to see if any function has returned.  I only made it about 48 hours before my headaches, joint aches, and fatigue told me that I definitely hadn't got it back.  Oh well.

          Hope you continue to feel well and kick butt at work.

          Brian

          • September 16, 2016 at 2:42 pm
          BrianP
          Participant

            Congrats on the scans!  Glad things are getting worked out with the endocrine system.  It definitely seems more like an art than a science with that stuff.  When I first started my prednisone doses I found that 5mg was not enough so I started taking 5 mg in the morning and 2.5 mg in the early afternoon.  I really tried to avoid taking the 2.5 mg after 3pm because it really seemed to effect my sleep if I did.  About 3 months ago I noticed I really didn't need the 2.5 mg in the afternoon anymore.  It got me thinking maybe I had regained some of my adrenal function.  I talked to my endocrinologist who said I could try and stop the prednisone for 3 days and have lab work to see if any function has returned.  I only made it about 48 hours before my headaches, joint aches, and fatigue told me that I definitely hadn't got it back.  Oh well.

            Hope you continue to feel well and kick butt at work.

            Brian

            • September 16, 2016 at 2:42 pm
            BrianP
            Participant

              Congrats on the scans!  Glad things are getting worked out with the endocrine system.  It definitely seems more like an art than a science with that stuff.  When I first started my prednisone doses I found that 5mg was not enough so I started taking 5 mg in the morning and 2.5 mg in the early afternoon.  I really tried to avoid taking the 2.5 mg after 3pm because it really seemed to effect my sleep if I did.  About 3 months ago I noticed I really didn't need the 2.5 mg in the afternoon anymore.  It got me thinking maybe I had regained some of my adrenal function.  I talked to my endocrinologist who said I could try and stop the prednisone for 3 days and have lab work to see if any function has returned.  I only made it about 48 hours before my headaches, joint aches, and fatigue told me that I definitely hadn't got it back.  Oh well.

              Hope you continue to feel well and kick butt at work.

              Brian

              • September 16, 2016 at 3:27 pm
              debwray
              Participant

                Hey Moira,

                Great to hear that you feel you are making progress. Hormone replacement seems to be a bit of a dark art and they may have been under doing it in the hope your pituitary might kick in and pick up the slack… Thyroid norms seem to vary a fair bit and some people seem to swear by natural thyroid meds..   think armour is one of the brands..

                Bet you can fine tune it even more as time goes on…so things could still improve.

                Delighted that you can see a way to keep working and that the scan was OK..really nice to see a solution for a change.

                Have a good weekend

                Deb

                 

                 

                • September 16, 2016 at 3:27 pm
                debwray
                Participant

                  Hey Moira,

                  Great to hear that you feel you are making progress. Hormone replacement seems to be a bit of a dark art and they may have been under doing it in the hope your pituitary might kick in and pick up the slack… Thyroid norms seem to vary a fair bit and some people seem to swear by natural thyroid meds..   think armour is one of the brands..

                  Bet you can fine tune it even more as time goes on…so things could still improve.

                  Delighted that you can see a way to keep working and that the scan was OK..really nice to see a solution for a change.

                  Have a good weekend

                  Deb

                   

                   

                  • September 16, 2016 at 3:27 pm
                  debwray
                  Participant

                    Hey Moira,

                    Great to hear that you feel you are making progress. Hormone replacement seems to be a bit of a dark art and they may have been under doing it in the hope your pituitary might kick in and pick up the slack… Thyroid norms seem to vary a fair bit and some people seem to swear by natural thyroid meds..   think armour is one of the brands..

                    Bet you can fine tune it even more as time goes on…so things could still improve.

                    Delighted that you can see a way to keep working and that the scan was OK..really nice to see a solution for a change.

                    Have a good weekend

                    Deb

                     

                     

                    • September 16, 2016 at 6:52 pm
                    Polymath
                    Participant

                      Hi Moira,

                      Yours seemed like about the crappiest side-effect one could imagine from ipi.  But thankfully you were a responder (lose a battle but win the war).  We're very happy that things seem to moving in the right direction now.  Much of the battle is in our heads, and you sound strong, and ready to do what you have to do to succeed.  Well done!

                      Gary

                      • September 16, 2016 at 6:52 pm
                      Polymath
                      Participant

                        Hi Moira,

                        Yours seemed like about the crappiest side-effect one could imagine from ipi.  But thankfully you were a responder (lose a battle but win the war).  We're very happy that things seem to moving in the right direction now.  Much of the battle is in our heads, and you sound strong, and ready to do what you have to do to succeed.  Well done!

                        Gary

                        • September 16, 2016 at 6:52 pm
                        Polymath
                        Participant

                          Hi Moira,

                          Yours seemed like about the crappiest side-effect one could imagine from ipi.  But thankfully you were a responder (lose a battle but win the war).  We're very happy that things seem to moving in the right direction now.  Much of the battle is in our heads, and you sound strong, and ready to do what you have to do to succeed.  Well done!

                          Gary

                          • September 16, 2016 at 7:11 pm
                          dmturner
                          Participant

                            That is good news.  I know you were one of the first people to respond on not doing the CLND of my right groin which I opt out and have now had my 2nd infusion of Yervoy.

                            My onc test for thyroid everytime and told me if anything even minor to let them know.  I did have a case of the itchies on Sunday and Monday but fine now.

                            Good luck!!

                            • September 16, 2016 at 7:11 pm
                            dmturner
                            Participant

                              That is good news.  I know you were one of the first people to respond on not doing the CLND of my right groin which I opt out and have now had my 2nd infusion of Yervoy.

                              My onc test for thyroid everytime and told me if anything even minor to let them know.  I did have a case of the itchies on Sunday and Monday but fine now.

                              Good luck!!

                              • September 16, 2016 at 7:11 pm
                              dmturner
                              Participant

                                That is good news.  I know you were one of the first people to respond on not doing the CLND of my right groin which I opt out and have now had my 2nd infusion of Yervoy.

                                My onc test for thyroid everytime and told me if anything even minor to let them know.  I did have a case of the itchies on Sunday and Monday but fine now.

                                Good luck!!

                                • September 16, 2016 at 8:19 pm
                                WithinMySkin
                                Participant
                                  Woohoo! Go Moira, go! Great job on persevering through an incredibly hard time and advocating for yourself every step of the way!
                                  • September 16, 2016 at 8:19 pm
                                  WithinMySkin
                                  Participant
                                    Woohoo! Go Moira, go! Great job on persevering through an incredibly hard time and advocating for yourself every step of the way!
                                    • September 16, 2016 at 8:19 pm
                                    WithinMySkin
                                    Participant
                                      Woohoo! Go Moira, go! Great job on persevering through an incredibly hard time and advocating for yourself every step of the way!
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