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Pituitary Gland issues from Yervoy

Forums General Melanoma Community Pituitary Gland issues from Yervoy

  • Post
    Dave from Ormond
    Participant

      I've had some discussions with a few people on here who have had swelling in the Pituitary Gland as a side effect from Yervoy.  I also had swelling which was discovered after 8 days of non-stop headaches from hell.

      Here's my question/issue: My pit gland swelling was back in early October.  I was immediately sent to an Endocrinologist and put on Prednisone, Synthroid, and Andro-Gel for low testosterone.  Here it is 4 months later and there is little or no improvement in the function of my pit gland.  Now my ankles are swollen and painful and I've just been told to stop taking the Andro-Gel and see if the swelling goes down.  So my question is to anyone who has had swelling in the pit gland.  Did yours ever start to function again on its own?  I would hate to think that I'm going to have to take these meds for the rest of my life.  I'm only 48 years old!  Is there anything I can do to help kickstart it back up?

      Any advice or shared experiences would be greatly appreciated.

      Dave

    Viewing 11 reply threads
    • Replies
        tschmith
        Participant

          Hi Dave….This is a shared experience, kind of.  After my second Ipi Infusion, I began to have trouble with my pituitary gland.  While it didn't swell, it did stop making coritisol.  I didn't experience any symptoms such as headaches.  They did do an MRI to make sure there was no swelling.  I also went to an endocronlogist and was put on hydrocortisone 2pills in the morning and 1 at 5.  I don't remember the exact dosage.  Eventually my pituitary gland went back to making cortisol and I no longer need to take medication.  I wish I could have continued Yervoy but Dr. Lipson felt it was not worth the risk of destroying my pituitary gland.

          I don't have any advice but I do have sympathy and also a suspicion that maybe something else could be done to help you.  

          tschmith
          Participant

            Hi Dave….This is a shared experience, kind of.  After my second Ipi Infusion, I began to have trouble with my pituitary gland.  While it didn't swell, it did stop making coritisol.  I didn't experience any symptoms such as headaches.  They did do an MRI to make sure there was no swelling.  I also went to an endocronlogist and was put on hydrocortisone 2pills in the morning and 1 at 5.  I don't remember the exact dosage.  Eventually my pituitary gland went back to making cortisol and I no longer need to take medication.  I wish I could have continued Yervoy but Dr. Lipson felt it was not worth the risk of destroying my pituitary gland.

            I don't have any advice but I do have sympathy and also a suspicion that maybe something else could be done to help you.  

            tschmith
            Participant

              Hi Dave….This is a shared experience, kind of.  After my second Ipi Infusion, I began to have trouble with my pituitary gland.  While it didn't swell, it did stop making coritisol.  I didn't experience any symptoms such as headaches.  They did do an MRI to make sure there was no swelling.  I also went to an endocronlogist and was put on hydrocortisone 2pills in the morning and 1 at 5.  I don't remember the exact dosage.  Eventually my pituitary gland went back to making cortisol and I no longer need to take medication.  I wish I could have continued Yervoy but Dr. Lipson felt it was not worth the risk of destroying my pituitary gland.

              I don't have any advice but I do have sympathy and also a suspicion that maybe something else could be done to help you.  

              JerryfromFauq
              Participant

                Onccce again, varies by person Their web site doesn't give percentaages but does say:  Long-term hormone replacement therapy may be necessary

                Immune-mediated Endocrinopathies:

                • In the pivotal Phase 3 study in YERVOY-treated patients, severe to life-threatening immune-mediated endocrinopathies (requiring hospitalization, urgent medical intervention, or interfering with activities of daily living; Grade 3-4) occurred in 9 (1.8%) patients
                  • All 9 patients had hypopituitarism, and some had additional concomitant endocrinopathies such as adrenal insufficiency, hypogonadism, and hypothyroidism
                  • 6 of the 9 patients were hospitalized for severe endocrinopathies
                • Moderate endocrinopathy (requiring hormone replacement or medical intervention; Grade 2) occurred in 12 (2.3%) YERVOY-treated patients and consisted of hypothyroidism, adrenal insufficiency, hypopituitarism, and 1 case each of hyperthyroidism and Cushing's syndrome
                • Median time to onset of moderate to severe immune-mediated endocrinopathy was 11 weeks and ranged up to 19.3 weeks after the initiation of YERVOY
                • Monitor patients for clinical signs and symptoms of hypophysitis, adrenal insufficiency (including adrenal crisis), and hyper- or hypothyroidism
                  • Patients may present with fatigue, headache, mental status changes, abdominal pain, unusual bowel habits, and hypotension, or nonspecific symptoms which may resemble other causes such as brain metastasis or underlying disease. Unless an alternate etiology has been identified, signs or symptoms should be considered immune-mediated
                  • Monitor thyroid function tests and clinical chemistries at the start of treatment, before each dose, and as clinically indicated based on symptoms. In a limited number of patients, hypophysitis was diagnosed by imaging studies through enlargement of the pituitary gland
                • Withhold YERVOY in symptomatic patients. Initiate systemic corticosteroids (1-2 mg/kg/day of prednisone or equivalent) and initiate appropriate hormone replacement therapy. Long-term hormone replacement therapy may be necessary.

                https://www.hcp.yervoy.com/Pages/safety-profile/time-to-onset.aspx

                JerryfromFauq
                Participant

                  Onccce again, varies by person Their web site doesn't give percentaages but does say:  Long-term hormone replacement therapy may be necessary

                  Immune-mediated Endocrinopathies:

                  • In the pivotal Phase 3 study in YERVOY-treated patients, severe to life-threatening immune-mediated endocrinopathies (requiring hospitalization, urgent medical intervention, or interfering with activities of daily living; Grade 3-4) occurred in 9 (1.8%) patients
                    • All 9 patients had hypopituitarism, and some had additional concomitant endocrinopathies such as adrenal insufficiency, hypogonadism, and hypothyroidism
                    • 6 of the 9 patients were hospitalized for severe endocrinopathies
                  • Moderate endocrinopathy (requiring hormone replacement or medical intervention; Grade 2) occurred in 12 (2.3%) YERVOY-treated patients and consisted of hypothyroidism, adrenal insufficiency, hypopituitarism, and 1 case each of hyperthyroidism and Cushing's syndrome
                  • Median time to onset of moderate to severe immune-mediated endocrinopathy was 11 weeks and ranged up to 19.3 weeks after the initiation of YERVOY
                  • Monitor patients for clinical signs and symptoms of hypophysitis, adrenal insufficiency (including adrenal crisis), and hyper- or hypothyroidism
                    • Patients may present with fatigue, headache, mental status changes, abdominal pain, unusual bowel habits, and hypotension, or nonspecific symptoms which may resemble other causes such as brain metastasis or underlying disease. Unless an alternate etiology has been identified, signs or symptoms should be considered immune-mediated
                    • Monitor thyroid function tests and clinical chemistries at the start of treatment, before each dose, and as clinically indicated based on symptoms. In a limited number of patients, hypophysitis was diagnosed by imaging studies through enlargement of the pituitary gland
                  • Withhold YERVOY in symptomatic patients. Initiate systemic corticosteroids (1-2 mg/kg/day of prednisone or equivalent) and initiate appropriate hormone replacement therapy. Long-term hormone replacement therapy may be necessary.

                  https://www.hcp.yervoy.com/Pages/safety-profile/time-to-onset.aspx

                  JerryfromFauq
                  Participant

                    Onccce again, varies by person Their web site doesn't give percentaages but does say:  Long-term hormone replacement therapy may be necessary

                    Immune-mediated Endocrinopathies:

                    • In the pivotal Phase 3 study in YERVOY-treated patients, severe to life-threatening immune-mediated endocrinopathies (requiring hospitalization, urgent medical intervention, or interfering with activities of daily living; Grade 3-4) occurred in 9 (1.8%) patients
                      • All 9 patients had hypopituitarism, and some had additional concomitant endocrinopathies such as adrenal insufficiency, hypogonadism, and hypothyroidism
                      • 6 of the 9 patients were hospitalized for severe endocrinopathies
                    • Moderate endocrinopathy (requiring hormone replacement or medical intervention; Grade 2) occurred in 12 (2.3%) YERVOY-treated patients and consisted of hypothyroidism, adrenal insufficiency, hypopituitarism, and 1 case each of hyperthyroidism and Cushing's syndrome
                    • Median time to onset of moderate to severe immune-mediated endocrinopathy was 11 weeks and ranged up to 19.3 weeks after the initiation of YERVOY
                    • Monitor patients for clinical signs and symptoms of hypophysitis, adrenal insufficiency (including adrenal crisis), and hyper- or hypothyroidism
                      • Patients may present with fatigue, headache, mental status changes, abdominal pain, unusual bowel habits, and hypotension, or nonspecific symptoms which may resemble other causes such as brain metastasis or underlying disease. Unless an alternate etiology has been identified, signs or symptoms should be considered immune-mediated
                      • Monitor thyroid function tests and clinical chemistries at the start of treatment, before each dose, and as clinically indicated based on symptoms. In a limited number of patients, hypophysitis was diagnosed by imaging studies through enlargement of the pituitary gland
                    • Withhold YERVOY in symptomatic patients. Initiate systemic corticosteroids (1-2 mg/kg/day of prednisone or equivalent) and initiate appropriate hormone replacement therapy. Long-term hormone replacement therapy may be necessary.

                    https://www.hcp.yervoy.com/Pages/safety-profile/time-to-onset.aspx

                    heiditemple
                    Participant

                      If you don't mind me asking, what were your symptoms when you found out that you were having issues with your pituitary gland?  I just began my course of Yervoy and I already have thyroid issues, so I'm trying to keep a close eye on everything in that area.  Thank you!

                        Dave from Ormond
                        Participant

                          I had a major headache for 8 days straight.  It felt like my brain was trying to escape from my skull.  It felt like no other headache I've ever had, including post-concussion headaches.  It was not influenced by light or dark, noise or quiet.  It was just there and throbbing like you can't even imagine, until you have one.

                          Good luck to you!

                           

                          Dave from Ormond
                          Participant

                            I had a major headache for 8 days straight.  It felt like my brain was trying to escape from my skull.  It felt like no other headache I've ever had, including post-concussion headaches.  It was not influenced by light or dark, noise or quiet.  It was just there and throbbing like you can't even imagine, until you have one.

                            Good luck to you!

                             

                            Dave from Ormond
                            Participant

                              I had a major headache for 8 days straight.  It felt like my brain was trying to escape from my skull.  It felt like no other headache I've ever had, including post-concussion headaches.  It was not influenced by light or dark, noise or quiet.  It was just there and throbbing like you can't even imagine, until you have one.

                              Good luck to you!

                               

                            heiditemple
                            Participant

                              If you don't mind me asking, what were your symptoms when you found out that you were having issues with your pituitary gland?  I just began my course of Yervoy and I already have thyroid issues, so I'm trying to keep a close eye on everything in that area.  Thank you!

                              heiditemple
                              Participant

                                If you don't mind me asking, what were your symptoms when you found out that you were having issues with your pituitary gland?  I just began my course of Yervoy and I already have thyroid issues, so I'm trying to keep a close eye on everything in that area.  Thank you!

                                Brendan
                                Participant

                                  Hi Dave,

                                  I don't have any advice for you; but I will share my experience.  

                                  I had a swollen pituitary after my third dose of ipi (Jan 2012).  I explained the pain as a "Bugs Bunny" headache-I felt like my eyes were bursting out of my head.  I was on Synthroid for a short time, I do not remember the duration (two months maybe?).  I did not need the Andro-Gel, sorry to hear about your ankles.  

                                  My cortisol levels are still low and I am on 5mg prednisone daily (the dosage fluctuates, but it's been at 5 for a while). I think it's here to stay and I still see my endocrinologist regularly.  I understand the frustration of daily meds (I began the prednisone when I was 39).  However, the longer I last at stage IV the less I care about the daily meds.  

                                  Good luck.

                                  Brendan

                                   

                                   

                                   

                                  Brendan
                                  Participant

                                    Hi Dave,

                                    I don't have any advice for you; but I will share my experience.  

                                    I had a swollen pituitary after my third dose of ipi (Jan 2012).  I explained the pain as a "Bugs Bunny" headache-I felt like my eyes were bursting out of my head.  I was on Synthroid for a short time, I do not remember the duration (two months maybe?).  I did not need the Andro-Gel, sorry to hear about your ankles.  

                                    My cortisol levels are still low and I am on 5mg prednisone daily (the dosage fluctuates, but it's been at 5 for a while). I think it's here to stay and I still see my endocrinologist regularly.  I understand the frustration of daily meds (I began the prednisone when I was 39).  However, the longer I last at stage IV the less I care about the daily meds.  

                                    Good luck.

                                    Brendan

                                     

                                     

                                     

                                    Brendan
                                    Participant

                                      Hi Dave,

                                      I don't have any advice for you; but I will share my experience.  

                                      I had a swollen pituitary after my third dose of ipi (Jan 2012).  I explained the pain as a "Bugs Bunny" headache-I felt like my eyes were bursting out of my head.  I was on Synthroid for a short time, I do not remember the duration (two months maybe?).  I did not need the Andro-Gel, sorry to hear about your ankles.  

                                      My cortisol levels are still low and I am on 5mg prednisone daily (the dosage fluctuates, but it's been at 5 for a while). I think it's here to stay and I still see my endocrinologist regularly.  I understand the frustration of daily meds (I began the prednisone when I was 39).  However, the longer I last at stage IV the less I care about the daily meds.  

                                      Good luck.

                                      Brendan

                                       

                                       

                                       

                                        BrianP
                                        Participant

                                          Dave,

                                          My experiences are similar to Brendan's.  I started experiencing headaches about a week after my 3rd infusion.  Mine started mild and stayed that way for a while but as I got ready for my 4th infusion they got pretty bad.  My 4th infusion was canceled and I was immediately put on 60mg a day of prednisone.  Stayed on that for about a week.  Went to 40mg for about a week.  Then the third week I ramped down to 20, then 10 then nothing.  Trial sponsor wanted me off the prednisone before having my next infusion of nivo.  I was fine for a few days but headaches came back and I went back on 5mg a day which has been keeping the headaches at bay.  All my numbers have rebounded pretty nicely with the exception of my cortisol which is slightly low.  I actually have my first endocrinologist appointment on wednesday which is probably about a month too late but those guys are in high demand and are tough to schedule.  I'm anxious to hear her opinion as to my outlook for future requirements for the cortisol. 

                                          From my reading I think the real danger with the hypophysitis (pituitary swelling) is that the swelling can cause permanent structural damage to the pituitary gland and if that happens I think you can count on needing some type of supplementation for the rest of your life.  I think oncologist need to make this side effect more clear to patients at the onset.  Most are pretty good at telling patients about the need to stay on top of the GI effects but I had no idea about this side effect until after the fact.  Like the GI side effect, this side effect can easily be squashed in the early stages and prevent any long term damages if only the patient is aware that this is a possible side effect and that they should let their oncologist know if they have a persistent headache lasting more than a couple days.

                                          Brian

                                          BrianP
                                          Participant

                                            Dave,

                                            My experiences are similar to Brendan's.  I started experiencing headaches about a week after my 3rd infusion.  Mine started mild and stayed that way for a while but as I got ready for my 4th infusion they got pretty bad.  My 4th infusion was canceled and I was immediately put on 60mg a day of prednisone.  Stayed on that for about a week.  Went to 40mg for about a week.  Then the third week I ramped down to 20, then 10 then nothing.  Trial sponsor wanted me off the prednisone before having my next infusion of nivo.  I was fine for a few days but headaches came back and I went back on 5mg a day which has been keeping the headaches at bay.  All my numbers have rebounded pretty nicely with the exception of my cortisol which is slightly low.  I actually have my first endocrinologist appointment on wednesday which is probably about a month too late but those guys are in high demand and are tough to schedule.  I'm anxious to hear her opinion as to my outlook for future requirements for the cortisol. 

                                            From my reading I think the real danger with the hypophysitis (pituitary swelling) is that the swelling can cause permanent structural damage to the pituitary gland and if that happens I think you can count on needing some type of supplementation for the rest of your life.  I think oncologist need to make this side effect more clear to patients at the onset.  Most are pretty good at telling patients about the need to stay on top of the GI effects but I had no idea about this side effect until after the fact.  Like the GI side effect, this side effect can easily be squashed in the early stages and prevent any long term damages if only the patient is aware that this is a possible side effect and that they should let their oncologist know if they have a persistent headache lasting more than a couple days.

                                            Brian

                                            Dave from Ormond
                                            Participant

                                              Thanks Brian.

                                              First, I'm very confused as to why everyone who has had the Pituitary swelling has been stopped from getting additional doses of Yervoy except me.  I will say this on my Oncologists behalf, he called Yervoy and they put him in touch with Dr. Jeffrey Weber.  Apparently this Dr. was very involved in the development and clinical trials of the drug.  Dr. Weber said that it was fine for me to continue doses after the swelling was down. So I got the final two doses, barely, but I got them.  I had some other issues that almost kept me from getting my fourth dose.  Almost!

                                              Second, my initial consultation when my Melanoma came back was with my Surgical Oncologist.  He's a great doctor and great guy, Dr. Christopher Windham, in Ormond Beach.  When he decided to refer me to my Medical Oncologist, he told me that he had read that up to 30% of Yervoy patients were suffering from hypophysitis.  He told me that if I should start having some weird headaches after dosing to let my Dr. know immediately.  My other Oncologist also clearly stated that this was one of the risks and that he had read the same thing.  So knowing what I knew, I called my Dr. after 24 hours of this monster headache and told him I had to be seen.  I was seen the next day and then sent for a Brain MRI.  The results from the Brain MRI were negative so then he set me up for a CT Scan the following Monday which showed the swelling.  I guess I was lucky in that aspect.

                                              Thanks again.

                                              Dave

                                               

                                              Dave from Ormond
                                              Participant

                                                Thanks Brian.

                                                First, I'm very confused as to why everyone who has had the Pituitary swelling has been stopped from getting additional doses of Yervoy except me.  I will say this on my Oncologists behalf, he called Yervoy and they put him in touch with Dr. Jeffrey Weber.  Apparently this Dr. was very involved in the development and clinical trials of the drug.  Dr. Weber said that it was fine for me to continue doses after the swelling was down. So I got the final two doses, barely, but I got them.  I had some other issues that almost kept me from getting my fourth dose.  Almost!

                                                Second, my initial consultation when my Melanoma came back was with my Surgical Oncologist.  He's a great doctor and great guy, Dr. Christopher Windham, in Ormond Beach.  When he decided to refer me to my Medical Oncologist, he told me that he had read that up to 30% of Yervoy patients were suffering from hypophysitis.  He told me that if I should start having some weird headaches after dosing to let my Dr. know immediately.  My other Oncologist also clearly stated that this was one of the risks and that he had read the same thing.  So knowing what I knew, I called my Dr. after 24 hours of this monster headache and told him I had to be seen.  I was seen the next day and then sent for a Brain MRI.  The results from the Brain MRI were negative so then he set me up for a CT Scan the following Monday which showed the swelling.  I guess I was lucky in that aspect.

                                                Thanks again.

                                                Dave

                                                 

                                                Dave from Ormond
                                                Participant

                                                  Thanks Brian.

                                                  First, I'm very confused as to why everyone who has had the Pituitary swelling has been stopped from getting additional doses of Yervoy except me.  I will say this on my Oncologists behalf, he called Yervoy and they put him in touch with Dr. Jeffrey Weber.  Apparently this Dr. was very involved in the development and clinical trials of the drug.  Dr. Weber said that it was fine for me to continue doses after the swelling was down. So I got the final two doses, barely, but I got them.  I had some other issues that almost kept me from getting my fourth dose.  Almost!

                                                  Second, my initial consultation when my Melanoma came back was with my Surgical Oncologist.  He's a great doctor and great guy, Dr. Christopher Windham, in Ormond Beach.  When he decided to refer me to my Medical Oncologist, he told me that he had read that up to 30% of Yervoy patients were suffering from hypophysitis.  He told me that if I should start having some weird headaches after dosing to let my Dr. know immediately.  My other Oncologist also clearly stated that this was one of the risks and that he had read the same thing.  So knowing what I knew, I called my Dr. after 24 hours of this monster headache and told him I had to be seen.  I was seen the next day and then sent for a Brain MRI.  The results from the Brain MRI were negative so then he set me up for a CT Scan the following Monday which showed the swelling.  I guess I was lucky in that aspect.

                                                  Thanks again.

                                                  Dave

                                                   

                                                  BrianP
                                                  Participant

                                                    Dave,

                                                    My experiences are similar to Brendan's.  I started experiencing headaches about a week after my 3rd infusion.  Mine started mild and stayed that way for a while but as I got ready for my 4th infusion they got pretty bad.  My 4th infusion was canceled and I was immediately put on 60mg a day of prednisone.  Stayed on that for about a week.  Went to 40mg for about a week.  Then the third week I ramped down to 20, then 10 then nothing.  Trial sponsor wanted me off the prednisone before having my next infusion of nivo.  I was fine for a few days but headaches came back and I went back on 5mg a day which has been keeping the headaches at bay.  All my numbers have rebounded pretty nicely with the exception of my cortisol which is slightly low.  I actually have my first endocrinologist appointment on wednesday which is probably about a month too late but those guys are in high demand and are tough to schedule.  I'm anxious to hear her opinion as to my outlook for future requirements for the cortisol. 

                                                    From my reading I think the real danger with the hypophysitis (pituitary swelling) is that the swelling can cause permanent structural damage to the pituitary gland and if that happens I think you can count on needing some type of supplementation for the rest of your life.  I think oncologist need to make this side effect more clear to patients at the onset.  Most are pretty good at telling patients about the need to stay on top of the GI effects but I had no idea about this side effect until after the fact.  Like the GI side effect, this side effect can easily be squashed in the early stages and prevent any long term damages if only the patient is aware that this is a possible side effect and that they should let their oncologist know if they have a persistent headache lasting more than a couple days.

                                                    Brian

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