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Anyone out there with pituitary gland damage because of Ipi?

Forums General Melanoma Community Anyone out there with pituitary gland damage because of Ipi?

  • Post
    MoiraM
    Participant

      I've talked to doctors. I have talked to nurses. I really, really want to talk to someone who has long-standing damage to their anterior pituitary caused by ipilimumab-induced hypophysitis.

      I've been dealing with this for a year now. I have made progress. I no longer feel terrible. I no longer feel exhausted. I do, however, have zero tolerance for stress.

      I used to love my stressful job. No longer. I want to check out whether there is a medical reason for my inability to cope with stress and whether it can be tackled. If not, it will be goodbye to the job with its life insurance policy and excellent pension benefits.

    Viewing 8 reply threads
    • Replies
        Scooby123
        Participant

          Hi MoiraM

          When i had ippi mine was effected and they wanted to put me on treatment but i said can i wait to see if it gets better over time. my last bloods was satisfaction so glad i did not go on treatment but this is  year ago too.

          Has yours not improved at all over time.

          Scooby123

          Scooby123
          Participant

            Hi MoiraM

            When i had ippi mine was effected and they wanted to put me on treatment but i said can i wait to see if it gets better over time. my last bloods was satisfaction so glad i did not go on treatment but this is  year ago too.

            Has yours not improved at all over time.

            Scooby123

              MoiraM
              Participant

                My anterior pituitary was very badly damaged. It produces no ATCH, so my body produces no cortisol. If I was not taking replacement steroids I would collapse and end up in hospital.

                There is no sign of any improvement and my consultant says that there is almost no chance of it recovering function.

                I have never been on high dose steroids. I went straight from feeling terrible to barely able to stand up to taking 10 mg prednisiolone and feeling fine within 15 minutes of taking the pills.

                MoiraM
                Participant

                  My anterior pituitary was very badly damaged. It produces no ATCH, so my body produces no cortisol. If I was not taking replacement steroids I would collapse and end up in hospital.

                  There is no sign of any improvement and my consultant says that there is almost no chance of it recovering function.

                  I have never been on high dose steroids. I went straight from feeling terrible to barely able to stand up to taking 10 mg prednisiolone and feeling fine within 15 minutes of taking the pills.

                  MoiraM
                  Participant

                    My anterior pituitary was very badly damaged. It produces no ATCH, so my body produces no cortisol. If I was not taking replacement steroids I would collapse and end up in hospital.

                    There is no sign of any improvement and my consultant says that there is almost no chance of it recovering function.

                    I have never been on high dose steroids. I went straight from feeling terrible to barely able to stand up to taking 10 mg prednisiolone and feeling fine within 15 minutes of taking the pills.

                    Kim K
                    Participant

                      You are describing Addison's disease – No ACTH, same thing one of the Kenndy boys had (Bobby I think).  Yes, stressful situations tax your endocrin fight or flight response, of which cortisol is the key hormone.  In your case, you can't produce enough.

                      Even though you are taking replacement drugs, your stressful job will place periods of time when your meds can't meet the sudden demand for a surge of cortisol so you are going to feel like you did before you started hormone replacement.

                      Kind of like a diabetic taking maintenance insulin but needing a short acting form just before or after a meal.  In your case, you don't have a drug like that for the times you need some extra umpf in the cortisol department.

                      I hope that made sense and why you feel the way you do when stressed.  Your body just isn't able to respond the way a normal functioning one can.  Our bodies do an amazing job of self-regulation.  When those systems crash, we can only hope to come close to what nature does.

                      Talk to your doc about your symptoms, perhaps they can tweak some of your meds?

                      MoiraM
                      Participant

                        It is not quite the same as Addison's disease which, I believe, is due to a faulty adrenal cortex rather than a damaged pituitary, which is upsteam. I have no ACTH though. I also am missing a number of other hormones.

                        What you say would make sense if it wasn't for the fact that every endocrine doctor and endocrine nurse I have spoken to assure me that no level of 'everyday' stress short of a bereavement can affect my requirement for cortisol.

                        Physical shock is different. If that happens (e.g. physical injury, operation or an infection) I will go into crisis without extra cortosol.

                        MoiraM
                        Participant

                          It is not quite the same as Addison's disease which, I believe, is due to a faulty adrenal cortex rather than a damaged pituitary, which is upsteam. I have no ACTH though. I also am missing a number of other hormones.

                          What you say would make sense if it wasn't for the fact that every endocrine doctor and endocrine nurse I have spoken to assure me that no level of 'everyday' stress short of a bereavement can affect my requirement for cortisol.

                          Physical shock is different. If that happens (e.g. physical injury, operation or an infection) I will go into crisis without extra cortosol.

                          MoiraM
                          Participant

                            It is not quite the same as Addison's disease which, I believe, is due to a faulty adrenal cortex rather than a damaged pituitary, which is upsteam. I have no ACTH though. I also am missing a number of other hormones.

                            What you say would make sense if it wasn't for the fact that every endocrine doctor and endocrine nurse I have spoken to assure me that no level of 'everyday' stress short of a bereavement can affect my requirement for cortisol.

                            Physical shock is different. If that happens (e.g. physical injury, operation or an infection) I will go into crisis without extra cortosol.

                            Kim K
                            Participant

                              You are describing Addison's disease – No ACTH, same thing one of the Kenndy boys had (Bobby I think).  Yes, stressful situations tax your endocrin fight or flight response, of which cortisol is the key hormone.  In your case, you can't produce enough.

                              Even though you are taking replacement drugs, your stressful job will place periods of time when your meds can't meet the sudden demand for a surge of cortisol so you are going to feel like you did before you started hormone replacement.

                              Kind of like a diabetic taking maintenance insulin but needing a short acting form just before or after a meal.  In your case, you don't have a drug like that for the times you need some extra umpf in the cortisol department.

                              I hope that made sense and why you feel the way you do when stressed.  Your body just isn't able to respond the way a normal functioning one can.  Our bodies do an amazing job of self-regulation.  When those systems crash, we can only hope to come close to what nature does.

                              Talk to your doc about your symptoms, perhaps they can tweak some of your meds?

                              Kim K
                              Participant

                                You are describing Addison's disease – No ACTH, same thing one of the Kenndy boys had (Bobby I think).  Yes, stressful situations tax your endocrin fight or flight response, of which cortisol is the key hormone.  In your case, you can't produce enough.

                                Even though you are taking replacement drugs, your stressful job will place periods of time when your meds can't meet the sudden demand for a surge of cortisol so you are going to feel like you did before you started hormone replacement.

                                Kind of like a diabetic taking maintenance insulin but needing a short acting form just before or after a meal.  In your case, you don't have a drug like that for the times you need some extra umpf in the cortisol department.

                                I hope that made sense and why you feel the way you do when stressed.  Your body just isn't able to respond the way a normal functioning one can.  Our bodies do an amazing job of self-regulation.  When those systems crash, we can only hope to come close to what nature does.

                                Talk to your doc about your symptoms, perhaps they can tweak some of your meds?

                              Scooby123
                              Participant

                                Hi MoiraM

                                When i had ippi mine was effected and they wanted to put me on treatment but i said can i wait to see if it gets better over time. my last bloods was satisfaction so glad i did not go on treatment but this is  year ago too.

                                Has yours not improved at all over time.

                                Scooby123

                                sister of patient
                                Participant

                                  Hello Moira,

                                  Other than stress, I hope you are reasonably OK. I can't comment on the pituitary and effects of stress as I (thank God every day) don't have those problems. Just wanted to mention that if you do decide to leave work, you should be able to take your life insurance with you – it's called "conversion" to a personal policy. Definitely ask your employer – it's usually a "right" of the coverage.

                                  Best of luck and I wish you some relief from the "load."

                                  Barb

                                   

                                  sister of patient
                                  Participant

                                    Hello Moira,

                                    Other than stress, I hope you are reasonably OK. I can't comment on the pituitary and effects of stress as I (thank God every day) don't have those problems. Just wanted to mention that if you do decide to leave work, you should be able to take your life insurance with you – it's called "conversion" to a personal policy. Definitely ask your employer – it's usually a "right" of the coverage.

                                    Best of luck and I wish you some relief from the "load."

                                    Barb

                                     

                                    sister of patient
                                    Participant

                                      Hello Moira,

                                      Other than stress, I hope you are reasonably OK. I can't comment on the pituitary and effects of stress as I (thank God every day) don't have those problems. Just wanted to mention that if you do decide to leave work, you should be able to take your life insurance with you – it's called "conversion" to a personal policy. Definitely ask your employer – it's usually a "right" of the coverage.

                                      Best of luck and I wish you some relief from the "load."

                                      Barb

                                       

                                        MoiraM
                                        Participant

                                          Thanks for your good wishes, I am in the UK. I asked and as soon as I leave I lose the life insurance.

                                          MoiraM
                                          Participant

                                            Thanks for your good wishes, I am in the UK. I asked and as soon as I leave I lose the life insurance.

                                            MoiraM
                                            Participant

                                              Thanks for your good wishes, I am in the UK. I asked and as soon as I leave I lose the life insurance.

                                              JohnA
                                              Participant

                                                Regardingthe life insurance, many employers offer the option to take it with you (and you pay much more than normal, of course).  Ask if the life insurance is 'portable'. I'd suggest calling the life insurance company, especially if your employer says it is not portable, I'd call the insurance co and double check.

                                                Good luck!

                                                JohnA
                                                Participant

                                                  Regardingthe life insurance, many employers offer the option to take it with you (and you pay much more than normal, of course).  Ask if the life insurance is 'portable'. I'd suggest calling the life insurance company, especially if your employer says it is not portable, I'd call the insurance co and double check.

                                                  Good luck!

                                                  JohnA
                                                  Participant

                                                    Regardingthe life insurance, many employers offer the option to take it with you (and you pay much more than normal, of course).  Ask if the life insurance is 'portable'. I'd suggest calling the life insurance company, especially if your employer says it is not portable, I'd call the insurance co and double check.

                                                    Good luck!

                                                    sister of patient
                                                    Participant

                                                      Yes, Moira, I second what JohnA has written. Do ask the insurer – it may be that your benefit administrator is just not that knowledgeable and doesn't realize this is possible. I'm in Canada but insurance laws here are very close to UK law. When the employer says you leave and that's the end of it, it is the end from their perspective, in so much as they are no longer responsible for ensuring the coverage is provided and paid for. For sure call them!! Fingers crossed for you!!!

                                                      Barb

                                                      sister of patient
                                                      Participant

                                                        Yes, Moira, I second what JohnA has written. Do ask the insurer – it may be that your benefit administrator is just not that knowledgeable and doesn't realize this is possible. I'm in Canada but insurance laws here are very close to UK law. When the employer says you leave and that's the end of it, it is the end from their perspective, in so much as they are no longer responsible for ensuring the coverage is provided and paid for. For sure call them!! Fingers crossed for you!!!

                                                        Barb

                                                        sister of patient
                                                        Participant

                                                          Yes, Moira, I second what JohnA has written. Do ask the insurer – it may be that your benefit administrator is just not that knowledgeable and doesn't realize this is possible. I'm in Canada but insurance laws here are very close to UK law. When the employer says you leave and that's the end of it, it is the end from their perspective, in so much as they are no longer responsible for ensuring the coverage is provided and paid for. For sure call them!! Fingers crossed for you!!!

                                                          Barb

                                                        Rod
                                                        Participant

                                                          Yes, 2 years out from last ippi treatment. 

                                                          I have pituitary failure with pretty much same symptoms you described. 

                                                          Rod
                                                          Participant

                                                            Yes, 2 years out from last ippi treatment. 

                                                            I have pituitary failure with pretty much same symptoms you described. 

                                                            Rod
                                                            Participant

                                                              Yes, 2 years out from last ippi treatment. 

                                                              I have pituitary failure with pretty much same symptoms you described. 

                                                                MoiraM
                                                                Participant

                                                                  Hi Rob

                                                                  Thank you for replying.

                                                                  Can I ask what cortisol-replacement you are on? I have stuck with prednisolone because that was what I started on and it took so long to persuade my endocrine team that I needed 8mg to be functional rather than between 5mg and 7.5mg. I take 8mg at 7 am and that's it for the day.

                                                                  My ability to deal with everyday stress has plumented. I have been assured that this is nothing to do with the damage to my pituitary because my hormone replacement is adequate. However, there is this niggling doubt because my team has only treated one other person whose pituitary was damaged by ipi and his was not as badly damaged as mine. Also, they are fixated on not giving their patients (most of them have Addisons) an excuse to take more steroids. I don't want to take more steroids, I want to find out why I can't do the job I used to do!

                                                                  MoiraM
                                                                  Participant

                                                                    Hi Rob

                                                                    Thank you for replying.

                                                                    Can I ask what cortisol-replacement you are on? I have stuck with prednisolone because that was what I started on and it took so long to persuade my endocrine team that I needed 8mg to be functional rather than between 5mg and 7.5mg. I take 8mg at 7 am and that's it for the day.

                                                                    My ability to deal with everyday stress has plumented. I have been assured that this is nothing to do with the damage to my pituitary because my hormone replacement is adequate. However, there is this niggling doubt because my team has only treated one other person whose pituitary was damaged by ipi and his was not as badly damaged as mine. Also, they are fixated on not giving their patients (most of them have Addisons) an excuse to take more steroids. I don't want to take more steroids, I want to find out why I can't do the job I used to do!

                                                                    MoiraM
                                                                    Participant

                                                                      Hi Rob

                                                                      Thank you for replying.

                                                                      Can I ask what cortisol-replacement you are on? I have stuck with prednisolone because that was what I started on and it took so long to persuade my endocrine team that I needed 8mg to be functional rather than between 5mg and 7.5mg. I take 8mg at 7 am and that's it for the day.

                                                                      My ability to deal with everyday stress has plumented. I have been assured that this is nothing to do with the damage to my pituitary because my hormone replacement is adequate. However, there is this niggling doubt because my team has only treated one other person whose pituitary was damaged by ipi and his was not as badly damaged as mine. Also, they are fixated on not giving their patients (most of them have Addisons) an excuse to take more steroids. I don't want to take more steroids, I want to find out why I can't do the job I used to do!

                                                                      Rod
                                                                      Participant

                                                                        I take 20mg of Hydrocortisone a day. 15mg in morning and 5mg at 5PM.

                                                                        100 mcg Levothyroxine in the AM for my thyroid.

                                                                         

                                                                        Also I am on Testoserone therapy.

                                                                        I was went into adrenal crisis in the Oncology office when getting blood drawn for my 3rd Ipi treatment so I know about drug therapy a must.

                                                                        My Endocrinologist has told me damage is permanent.

                                                                        If it helps I had a physical job for over 30 years that I can longer do.

                                                                        Rod
                                                                        Participant

                                                                          I take 20mg of Hydrocortisone a day. 15mg in morning and 5mg at 5PM.

                                                                          100 mcg Levothyroxine in the AM for my thyroid.

                                                                           

                                                                          Also I am on Testoserone therapy.

                                                                          I was went into adrenal crisis in the Oncology office when getting blood drawn for my 3rd Ipi treatment so I know about drug therapy a must.

                                                                          My Endocrinologist has told me damage is permanent.

                                                                          If it helps I had a physical job for over 30 years that I can longer do.

                                                                          Rod
                                                                          Participant

                                                                            I take 20mg of Hydrocortisone a day. 15mg in morning and 5mg at 5PM.

                                                                            100 mcg Levothyroxine in the AM for my thyroid.

                                                                             

                                                                            Also I am on Testoserone therapy.

                                                                            I was went into adrenal crisis in the Oncology office when getting blood drawn for my 3rd Ipi treatment so I know about drug therapy a must.

                                                                            My Endocrinologist has told me damage is permanent.

                                                                            If it helps I had a physical job for over 30 years that I can longer do.

                                                                            MoiraM
                                                                            Participant

                                                                              Thanks for your reply.

                                                                              I am also on 75 mcg levothyroxine.

                                                                              I am too old for them to replace my missing female hormones – I am 56.

                                                                              After my fourth Ipi infusion, I felt worse and worse until I was barely able to walk. That was when they decided they should have an extra blood test. They came back at once, telling me to take some prednisolone. I did avoid the crisis.

                                                                              Did the Ipi help with your melanoma?

                                                                               

                                                                              MoiraM
                                                                              Participant

                                                                                Thanks for your reply.

                                                                                I am also on 75 mcg levothyroxine.

                                                                                I am too old for them to replace my missing female hormones – I am 56.

                                                                                After my fourth Ipi infusion, I felt worse and worse until I was barely able to walk. That was when they decided they should have an extra blood test. They came back at once, telling me to take some prednisolone. I did avoid the crisis.

                                                                                Did the Ipi help with your melanoma?

                                                                                 

                                                                                MoiraM
                                                                                Participant

                                                                                  Thanks for your reply.

                                                                                  I am also on 75 mcg levothyroxine.

                                                                                  I am too old for them to replace my missing female hormones – I am 56.

                                                                                  After my fourth Ipi infusion, I felt worse and worse until I was barely able to walk. That was when they decided they should have an extra blood test. They came back at once, telling me to take some prednisolone. I did avoid the crisis.

                                                                                  Did the Ipi help with your melanoma?

                                                                                   

                                                                                  Rod
                                                                                  Participant

                                                                                    I was a participant in the adjuvant drug trial for ipi vs interferon. I had a left neck disection before starting the ipi.

                                                                                    I was only given 2 infusions of 10 mg ipi before the adrenal crisis and knocked out of the trial.

                                                                                    March 2015 was my 2 year anniversary with NED.

                                                                                     

                                                                                    Rod
                                                                                    Participant

                                                                                      I was a participant in the adjuvant drug trial for ipi vs interferon. I had a left neck disection before starting the ipi.

                                                                                      I was only given 2 infusions of 10 mg ipi before the adrenal crisis and knocked out of the trial.

                                                                                      March 2015 was my 2 year anniversary with NED.

                                                                                       

                                                                                      Rod
                                                                                      Participant

                                                                                        I was a participant in the adjuvant drug trial for ipi vs interferon. I had a left neck disection before starting the ipi.

                                                                                        I was only given 2 infusions of 10 mg ipi before the adrenal crisis and knocked out of the trial.

                                                                                        March 2015 was my 2 year anniversary with NED.

                                                                                         

                                                                                        MoiraM
                                                                                        Participant

                                                                                          I had four infusions of 3 mg/kg. I had tumours in my right axilla. They were not removed bacuse of my extreme phobia of doctors and hospitals. They shrank after the Ipi and no longer show on a CT scan.

                                                                                          I guess I am NED since my second post-ipi scan, which was in December 2015.

                                                                                          MoiraM
                                                                                          Participant

                                                                                            I had four infusions of 3 mg/kg. I had tumours in my right axilla. They were not removed bacuse of my extreme phobia of doctors and hospitals. They shrank after the Ipi and no longer show on a CT scan.

                                                                                            I guess I am NED since my second post-ipi scan, which was in December 2015.

                                                                                            MoiraM
                                                                                            Participant

                                                                                              I had four infusions of 3 mg/kg. I had tumours in my right axilla. They were not removed bacuse of my extreme phobia of doctors and hospitals. They shrank after the Ipi and no longer show on a CT scan.

                                                                                              I guess I am NED since my second post-ipi scan, which was in December 2015.

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