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  • Post
    • August 4, 2016 at 9:06 pm
    Aaron
    Participant

      Well I guess it's my turn for an mri. I am on the ipi/nivo combo and scheduled to have my fourth treatment next Tuesday. During my third treatment I had a reaction where I broke out in hives during treatment. The about 5-6 days after treatment I developed a low grade fever (99.8) that lasted about 5 days and my forearms were sensitive/sore to the touch. Following my fever days I developed a low grade headache that is barely noticeable but has never gone away. I am now 10 days into this headache roughly and now have a MRI scheduled before my next appt this coming Tuesday. I am sure it is a pituitary issue or something of that sort and am remaining positive that this is is a sign that things are working in my favor.  Just hate that this will probably delay my next treatment as I was hoping to have all 4 done before school/work started back up this fall and would only have the nivo component to deal with. All in good time though. 

    Viewing 5 reply threads
    • Replies
        • August 4, 2016 at 9:20 pm
        BrianP
        Participant

          Aaron,

          That definitely sounds like hypophysitis.  What you describe is exactly what happened to me between my 3rd and 4th Ipi infusion.  Started as mild sinus like headache, after a week was kinda, like an all over headache.  Around the10 day mark it got REAL uncomfortable.  My fourth ipi infusion was canceled and I was put on 60 mg of prednisone.  Within an hour of taking the prednisone the headache was gone.

          If I was in your shoes knowing what I know now I would ask my doctor for prednisone now.  Once that pituitary gland is damaged it is damaged for good. 

          Brian

          • August 4, 2016 at 9:20 pm
          BrianP
          Participant

            Aaron,

            That definitely sounds like hypophysitis.  What you describe is exactly what happened to me between my 3rd and 4th Ipi infusion.  Started as mild sinus like headache, after a week was kinda, like an all over headache.  Around the10 day mark it got REAL uncomfortable.  My fourth ipi infusion was canceled and I was put on 60 mg of prednisone.  Within an hour of taking the prednisone the headache was gone.

            If I was in your shoes knowing what I know now I would ask my doctor for prednisone now.  Once that pituitary gland is damaged it is damaged for good. 

            Brian

            • August 4, 2016 at 9:20 pm
            BrianP
            Participant

              Aaron,

              That definitely sounds like hypophysitis.  What you describe is exactly what happened to me between my 3rd and 4th Ipi infusion.  Started as mild sinus like headache, after a week was kinda, like an all over headache.  Around the10 day mark it got REAL uncomfortable.  My fourth ipi infusion was canceled and I was put on 60 mg of prednisone.  Within an hour of taking the prednisone the headache was gone.

              If I was in your shoes knowing what I know now I would ask my doctor for prednisone now.  Once that pituitary gland is damaged it is damaged for good. 

              Brian

                • August 4, 2016 at 10:12 pm
                Aaron
                Participant

                  I have a standing order of prednisone that I got filled but have not been given the go ahead to take it yet. 

                  • August 4, 2016 at 10:12 pm
                  Aaron
                  Participant

                    I have a standing order of prednisone that I got filled but have not been given the go ahead to take it yet. 

                    • August 4, 2016 at 10:12 pm
                    Aaron
                    Participant

                      I have a standing order of prednisone that I got filled but have not been given the go ahead to take it yet. 

                    • August 10, 2016 at 3:54 pm
                    KAF
                    Participant

                      Hi Aaron – its Karen.  We started off on the same schedule, no side affect and we were both concerned.  Seems like ages ago now.  I'm sorry you got the headaches.  I was afraid of that after we posted a couple of weeks ago about my headaches and you saying you were started to get one.  Its not fun.  I had mine for 5 days and by day 5 it felt like there was a cleaver in my head.  The MRI result came back so quickly the doctor called me with it before I even got home from my appointment.  I've got hyposistis (swollen pituitary) and had to on high dose predinsone as soon as I got off the phone with the doc.  I'm currently being weaned down right now and I'm on 10mg for the next 3 days, then 5mg for the next 3 weeks until my endocrinoligist sees me.  She thinks my pituitary may have permanent damage which means always being on prednisone which I guess means my days of immunotherapy are done.  I'm trying not to get too depressed about this since I don't know what else I can do other than immunotherapy at stage IV.  My oncologist is hopeful that since my lymphnodes have shrunk so much that the 7 weeks I was on the ipi/nivo did enough to also reduce the tumors on my liver as well.  I guess I won't know until the next scans.  I was so cautious about all the other side affects I was told about but it seems like this adrenal/pituitary is far more common than listed on the yervoy website.  In studies I read about it happens in 10% of the people taking it (the study was just on yervoy alone, not the combo) and of those 10%, 90% percent had permanent damage to the pituitary.  Saying I'm bummed/mad that I had stop treatment is an understatement but not much I can do about it.  I'm just hoping there's something I can still do if I'm stuck on the prednisone permanently.  I'm crossing my fingers that you can continue and that what you've already done is doing its job attacking the melanoma!!!!

                        • August 10, 2016 at 7:22 pm
                        ed williams
                        Participant

                          Hi Karen, take a look at the video in the link which features Dr. Weber talking about giving Nivo to patients that have had to stop Ipi due to side effects. Best Wishes!!!Ed https://www.youtube.com/watch?v=VCOAk7i9kmU

                          • August 10, 2016 at 7:22 pm
                          ed williams
                          Participant

                            Hi Karen, take a look at the video in the link which features Dr. Weber talking about giving Nivo to patients that have had to stop Ipi due to side effects. Best Wishes!!!Ed https://www.youtube.com/watch?v=VCOAk7i9kmU

                            • August 10, 2016 at 7:22 pm
                            ed williams
                            Participant

                              Hi Karen, take a look at the video in the link which features Dr. Weber talking about giving Nivo to patients that have had to stop Ipi due to side effects. Best Wishes!!!Ed https://www.youtube.com/watch?v=VCOAk7i9kmU

                              • August 10, 2016 at 9:36 pm
                              KAF
                              Participant

                                Thanks Ed.  I just looked at the video and feel much better.  Its amazing how much inforamtion is out there and developing and evolving so rapidly.  Its hard to keep up.  I don't even know how the oncologists can have their practices and keep up with all the trials and developments.  Its definitely going to take teamwork to fight this thing including me doing as much research as my doctors are doing.  

                                Aaron – take a look at this and maybe you'll feel better as well that maybe you just hit your ceiling/threshhold for the drug and your body has had enough to make it do what it needs to do.  They say on this video (and from what I've read) that the Yervoy is what causes most of the adrenal issues but that even on prednisone they had patients continue on the Opdivo for maintenance.  I spoke with my doc who checked in with me this morning and she confirmed that even if I'm on maintenance low dose prednisone for my pituitary it doesn't mean that the immunotherapy treatments are done – just may need to be modified. Karen

                                • August 10, 2016 at 9:36 pm
                                KAF
                                Participant

                                  Thanks Ed.  I just looked at the video and feel much better.  Its amazing how much inforamtion is out there and developing and evolving so rapidly.  Its hard to keep up.  I don't even know how the oncologists can have their practices and keep up with all the trials and developments.  Its definitely going to take teamwork to fight this thing including me doing as much research as my doctors are doing.  

                                  Aaron – take a look at this and maybe you'll feel better as well that maybe you just hit your ceiling/threshhold for the drug and your body has had enough to make it do what it needs to do.  They say on this video (and from what I've read) that the Yervoy is what causes most of the adrenal issues but that even on prednisone they had patients continue on the Opdivo for maintenance.  I spoke with my doc who checked in with me this morning and she confirmed that even if I'm on maintenance low dose prednisone for my pituitary it doesn't mean that the immunotherapy treatments are done – just may need to be modified. Karen

                                  • August 10, 2016 at 9:49 pm
                                  ed williams
                                  Participant

                                    Hi Karen, there is another series on Onclive with Dr.Weber and Dr.Jason Luke. Just google search Onclive and when it open pick Melanoma peer exchange link to Melanoma. Best Wishes!!!!Ed

                                    • August 10, 2016 at 9:49 pm
                                    ed williams
                                    Participant

                                      Hi Karen, there is another series on Onclive with Dr.Weber and Dr.Jason Luke. Just google search Onclive and when it open pick Melanoma peer exchange link to Melanoma. Best Wishes!!!!Ed

                                      • August 10, 2016 at 9:49 pm
                                      ed williams
                                      Participant

                                        Hi Karen, there is another series on Onclive with Dr.Weber and Dr.Jason Luke. Just google search Onclive and when it open pick Melanoma peer exchange link to Melanoma. Best Wishes!!!!Ed

                                        • August 10, 2016 at 11:12 pm
                                        BrianP
                                        Participant

                                          Karen,

                                          I haven't watched Ed's recommended video but my case may make you feel better.  I did a sequential nivo then ipi then back to nivo trial.  During the ipi treatment I developed hypophysitis as well.  Skipped the 4th infusion of ipi and picked up with the nivo.  Did an additional 18 months on nivo with no issues.  I'm on about 5 to 7.5 mg of prednisone daily due to adrenal defenciency.  Let's hope you continue to have a great response and don't need anything else in the future but if you do I definitely don't think nivo will be out of the question.

                                          Brian

                                          • August 10, 2016 at 11:12 pm
                                          BrianP
                                          Participant

                                            Karen,

                                            I haven't watched Ed's recommended video but my case may make you feel better.  I did a sequential nivo then ipi then back to nivo trial.  During the ipi treatment I developed hypophysitis as well.  Skipped the 4th infusion of ipi and picked up with the nivo.  Did an additional 18 months on nivo with no issues.  I'm on about 5 to 7.5 mg of prednisone daily due to adrenal defenciency.  Let's hope you continue to have a great response and don't need anything else in the future but if you do I definitely don't think nivo will be out of the question.

                                            Brian

                                            • August 10, 2016 at 11:12 pm
                                            BrianP
                                            Participant

                                              Karen,

                                              I haven't watched Ed's recommended video but my case may make you feel better.  I did a sequential nivo then ipi then back to nivo trial.  During the ipi treatment I developed hypophysitis as well.  Skipped the 4th infusion of ipi and picked up with the nivo.  Did an additional 18 months on nivo with no issues.  I'm on about 5 to 7.5 mg of prednisone daily due to adrenal defenciency.  Let's hope you continue to have a great response and don't need anything else in the future but if you do I definitely don't think nivo will be out of the question.

                                              Brian

                                              • August 10, 2016 at 9:36 pm
                                              KAF
                                              Participant

                                                Thanks Ed.  I just looked at the video and feel much better.  Its amazing how much inforamtion is out there and developing and evolving so rapidly.  Its hard to keep up.  I don't even know how the oncologists can have their practices and keep up with all the trials and developments.  Its definitely going to take teamwork to fight this thing including me doing as much research as my doctors are doing.  

                                                Aaron – take a look at this and maybe you'll feel better as well that maybe you just hit your ceiling/threshhold for the drug and your body has had enough to make it do what it needs to do.  They say on this video (and from what I've read) that the Yervoy is what causes most of the adrenal issues but that even on prednisone they had patients continue on the Opdivo for maintenance.  I spoke with my doc who checked in with me this morning and she confirmed that even if I'm on maintenance low dose prednisone for my pituitary it doesn't mean that the immunotherapy treatments are done – just may need to be modified. Karen

                                              • August 10, 2016 at 3:54 pm
                                              KAF
                                              Participant

                                                Hi Aaron – its Karen.  We started off on the same schedule, no side affect and we were both concerned.  Seems like ages ago now.  I'm sorry you got the headaches.  I was afraid of that after we posted a couple of weeks ago about my headaches and you saying you were started to get one.  Its not fun.  I had mine for 5 days and by day 5 it felt like there was a cleaver in my head.  The MRI result came back so quickly the doctor called me with it before I even got home from my appointment.  I've got hyposistis (swollen pituitary) and had to on high dose predinsone as soon as I got off the phone with the doc.  I'm currently being weaned down right now and I'm on 10mg for the next 3 days, then 5mg for the next 3 weeks until my endocrinoligist sees me.  She thinks my pituitary may have permanent damage which means always being on prednisone which I guess means my days of immunotherapy are done.  I'm trying not to get too depressed about this since I don't know what else I can do other than immunotherapy at stage IV.  My oncologist is hopeful that since my lymphnodes have shrunk so much that the 7 weeks I was on the ipi/nivo did enough to also reduce the tumors on my liver as well.  I guess I won't know until the next scans.  I was so cautious about all the other side affects I was told about but it seems like this adrenal/pituitary is far more common than listed on the yervoy website.  In studies I read about it happens in 10% of the people taking it (the study was just on yervoy alone, not the combo) and of those 10%, 90% percent had permanent damage to the pituitary.  Saying I'm bummed/mad that I had stop treatment is an understatement but not much I can do about it.  I'm just hoping there's something I can still do if I'm stuck on the prednisone permanently.  I'm crossing my fingers that you can continue and that what you've already done is doing its job attacking the melanoma!!!!

                                                • August 10, 2016 at 3:54 pm
                                                KAF
                                                Participant

                                                  Hi Aaron – its Karen.  We started off on the same schedule, no side affect and we were both concerned.  Seems like ages ago now.  I'm sorry you got the headaches.  I was afraid of that after we posted a couple of weeks ago about my headaches and you saying you were started to get one.  Its not fun.  I had mine for 5 days and by day 5 it felt like there was a cleaver in my head.  The MRI result came back so quickly the doctor called me with it before I even got home from my appointment.  I've got hyposistis (swollen pituitary) and had to on high dose predinsone as soon as I got off the phone with the doc.  I'm currently being weaned down right now and I'm on 10mg for the next 3 days, then 5mg for the next 3 weeks until my endocrinoligist sees me.  She thinks my pituitary may have permanent damage which means always being on prednisone which I guess means my days of immunotherapy are done.  I'm trying not to get too depressed about this since I don't know what else I can do other than immunotherapy at stage IV.  My oncologist is hopeful that since my lymphnodes have shrunk so much that the 7 weeks I was on the ipi/nivo did enough to also reduce the tumors on my liver as well.  I guess I won't know until the next scans.  I was so cautious about all the other side affects I was told about but it seems like this adrenal/pituitary is far more common than listed on the yervoy website.  In studies I read about it happens in 10% of the people taking it (the study was just on yervoy alone, not the combo) and of those 10%, 90% percent had permanent damage to the pituitary.  Saying I'm bummed/mad that I had stop treatment is an understatement but not much I can do about it.  I'm just hoping there's something I can still do if I'm stuck on the prednisone permanently.  I'm crossing my fingers that you can continue and that what you've already done is doing its job attacking the melanoma!!!!

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