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IPI Side Effects

Forums General Melanoma Community IPI Side Effects

  • Post
    JulieN31
    Participant

      I was diagnosed with Stage 3 Melanoma in 2010 and enrolled into the IPI study. I was "lucky" and was given the drug. I had side effects after the first treatment and they just got worse as the treatments went on. By the time I was about to receive the 3rd treatment my side effects were really bad. I begged for treatment 3 eventhough I had a migrane for 1 week, which just got worse, but didn't have a swollen pituitary gland. Treatment 4 was skipped because side effects were so bad, which was either April or May. In June I couldn't eat and if I did I had excrutiating pain and the only thing I could do to get rid of the pain was to make myself throw up. Throughout the balance of 2010 I was on and off steriods frequently and most times I would go off steriods just to be put back on within a few days. I finally saw an endocronologist in early 2011 and was put on thyroid medicine and hydrocortisone. 

      I have had almost every side effect known to the drug. I hear from my doctor that I am doing better than many of the other people that were involved in the study. 

      My symptoms now are extreme exhaustion. I can only clean or do other things for about 1 1/2 – 2 hours before I feel like I'm going to pass out. My legs are also shot. They hurt most every day and no over the counter pain medication takes it away. It's so bad that on some days I can barely walk. Both my endocronologist and oncologist have said "that's weird" and that there's nothing they do for me. I have 2 small children and can't do much with them. 

      Has anyone else experienced these symptoms? If so, have you or your doctors found a solution? 

      I'm desperate and willing to try anything!!

    Viewing 17 reply threads
    • Replies
        BrianP
        Participant

          Julie,

          I'm sorry to hear about your terrible side effects.  I do seem to recall people on here complaining of severe fatigue but I can't remember many saying it lasted long after the treatment had stopped.  To me it sounds like its an endocriine issue.  I know you are seeing an endocrinologist but you may want to get a second opinion by another endocrinologist.  If that doesn't work you might want to get a consult from a naturopath.  I wish you the best.

          Brian

          BrianP
          Participant

            Julie,

            I'm sorry to hear about your terrible side effects.  I do seem to recall people on here complaining of severe fatigue but I can't remember many saying it lasted long after the treatment had stopped.  To me it sounds like its an endocriine issue.  I know you are seeing an endocrinologist but you may want to get a second opinion by another endocrinologist.  If that doesn't work you might want to get a consult from a naturopath.  I wish you the best.

            Brian

            BrianP
            Participant

              Julie,

              I'm sorry to hear about your terrible side effects.  I do seem to recall people on here complaining of severe fatigue but I can't remember many saying it lasted long after the treatment had stopped.  To me it sounds like its an endocriine issue.  I know you are seeing an endocrinologist but you may want to get a second opinion by another endocrinologist.  If that doesn't work you might want to get a consult from a naturopath.  I wish you the best.

              Brian

                JulieN31
                Participant
                  Thanks Brian.
                  I am calling oncologist and primary doctor tomorrow. Hopefully I will have an answer soon!
                  I guess I’m lucky that my cancer has not come back, but this just isn’t living.
                  JulieN31
                  Participant
                    Thanks Brian.
                    I am calling oncologist and primary doctor tomorrow. Hopefully I will have an answer soon!
                    I guess I’m lucky that my cancer has not come back, but this just isn’t living.
                    JulieN31
                    Participant
                      Thanks Brian.
                      I am calling oncologist and primary doctor tomorrow. Hopefully I will have an answer soon!
                      I guess I’m lucky that my cancer has not come back, but this just isn’t living.
                    Rod
                    Participant

                      Julie, 

                      Sorry to hear about your side effects. I too have had very much the same issues and currently have an appointment with a new edocrinologist as my oncologist believes it's an endocrine problem.

                      The only thing that has helped somewhat has been to change my diet and some mild exercise. It has seemed to make my legs stronger and hurt less.

                      The fatigue is about the same with some minor improvement.

                      Rod

                      Rod
                      Participant

                        Julie, 

                        Sorry to hear about your side effects. I too have had very much the same issues and currently have an appointment with a new edocrinologist as my oncologist believes it's an endocrine problem.

                        The only thing that has helped somewhat has been to change my diet and some mild exercise. It has seemed to make my legs stronger and hurt less.

                        The fatigue is about the same with some minor improvement.

                        Rod

                          jogo
                          Participant

                            Where is your fatigue? What part of your body?   I developed tendonitis especially in my Achilles tendons.  I get very tired after walking over 15 minutes.  I saw a foot surgeon who said this was possibly due to the large amounts of prednisone I took for a fairly long time after I developed a toxic form of colitis after 2 (3 mg/K) infusions of Yervoy.  When I was finally weaned, the "prednisone honeymoon" was over and, everything began to ache.  My oncologist leaned towards hypophysitis and adrenal insufficiency.  The endocrinologist increased my synthroid but was and is reluctant to have me back on prednisone or hydrocortisone since the lab tests and blood work indicate I am producing cortisol on a sufficient level.  The physical therapist the foot surgeon referred my to gave me strengthening exercises and told me to cardio exercise gradually to increase my stamina.

                            jogo
                            Participant

                              Where is your fatigue? What part of your body?   I developed tendonitis especially in my Achilles tendons.  I get very tired after walking over 15 minutes.  I saw a foot surgeon who said this was possibly due to the large amounts of prednisone I took for a fairly long time after I developed a toxic form of colitis after 2 (3 mg/K) infusions of Yervoy.  When I was finally weaned, the "prednisone honeymoon" was over and, everything began to ache.  My oncologist leaned towards hypophysitis and adrenal insufficiency.  The endocrinologist increased my synthroid but was and is reluctant to have me back on prednisone or hydrocortisone since the lab tests and blood work indicate I am producing cortisol on a sufficient level.  The physical therapist the foot surgeon referred my to gave me strengthening exercises and told me to cardio exercise gradually to increase my stamina.

                              jogo
                              Participant

                                Where is your fatigue? What part of your body?   I developed tendonitis especially in my Achilles tendons.  I get very tired after walking over 15 minutes.  I saw a foot surgeon who said this was possibly due to the large amounts of prednisone I took for a fairly long time after I developed a toxic form of colitis after 2 (3 mg/K) infusions of Yervoy.  When I was finally weaned, the "prednisone honeymoon" was over and, everything began to ache.  My oncologist leaned towards hypophysitis and adrenal insufficiency.  The endocrinologist increased my synthroid but was and is reluctant to have me back on prednisone or hydrocortisone since the lab tests and blood work indicate I am producing cortisol on a sufficient level.  The physical therapist the foot surgeon referred my to gave me strengthening exercises and told me to cardio exercise gradually to increase my stamina.

                              Rod
                              Participant

                                Julie, 

                                Sorry to hear about your side effects. I too have had very much the same issues and currently have an appointment with a new edocrinologist as my oncologist believes it's an endocrine problem.

                                The only thing that has helped somewhat has been to change my diet and some mild exercise. It has seemed to make my legs stronger and hurt less.

                                The fatigue is about the same with some minor improvement.

                                Rod

                                Squash
                                Participant

                                  I am sorry for your problem.

                                  I would be looking to avoid all drugs and try and get my system healthy again if i was you.

                                   

                                   

                                    katie1
                                    Participant

                                      If you have been diagnosed with hypophysitis and have continuing hormonal insufficiency (cortisol or thyroid), you will require hormonal replacement.  Your endocrinologist/oncologist should be monitoring your levels and replacing them if necessary.  In my husband's case the dose required has changed over the year plus since he developed hypophysitis. Long term adrenal insufficiency seems to be common in people who developed hypophysitis.

                                      katie1
                                      Participant

                                        If you have been diagnosed with hypophysitis and have continuing hormonal insufficiency (cortisol or thyroid), you will require hormonal replacement.  Your endocrinologist/oncologist should be monitoring your levels and replacing them if necessary.  In my husband's case the dose required has changed over the year plus since he developed hypophysitis. Long term adrenal insufficiency seems to be common in people who developed hypophysitis.

                                        katie1
                                        Participant

                                          If you have been diagnosed with hypophysitis and have continuing hormonal insufficiency (cortisol or thyroid), you will require hormonal replacement.  Your endocrinologist/oncologist should be monitoring your levels and replacing them if necessary.  In my husband's case the dose required has changed over the year plus since he developed hypophysitis. Long term adrenal insufficiency seems to be common in people who developed hypophysitis.

                                        Squash
                                        Participant

                                          I am sorry for your problem.

                                          I would be looking to avoid all drugs and try and get my system healthy again if i was you.

                                           

                                           

                                          Squash
                                          Participant

                                            I am sorry for your problem.

                                            I would be looking to avoid all drugs and try and get my system healthy again if i was you.

                                             

                                             

                                            JoshF
                                            Participant

                                              Julie-

                                              I had thyroid issues that began with 2nd infusion and by 3rd infusion I was put on synthroid. Start at small dose and now at 125mcg. My oncologist said that this was response to drug. Outside of that, I had some mild fatigue and mild cramping. I hope everything gets better with you, sounds terrible. Wishing you the best.

                                               

                                              Josh

                                              JoshF
                                              Participant

                                                Julie-

                                                I had thyroid issues that began with 2nd infusion and by 3rd infusion I was put on synthroid. Start at small dose and now at 125mcg. My oncologist said that this was response to drug. Outside of that, I had some mild fatigue and mild cramping. I hope everything gets better with you, sounds terrible. Wishing you the best.

                                                 

                                                Josh

                                                JoshF
                                                Participant

                                                  Julie-

                                                  I had thyroid issues that began with 2nd infusion and by 3rd infusion I was put on synthroid. Start at small dose and now at 125mcg. My oncologist said that this was response to drug. Outside of that, I had some mild fatigue and mild cramping. I hope everything gets better with you, sounds terrible. Wishing you the best.

                                                   

                                                  Josh

                                                  JoshF
                                                  Participant

                                                    Julie-

                                                    I had thyroid issues that began with 2nd infusion and by 3rd infusion I was put on synthroid. Start at small dose and now at 125mcg. My oncologist said that this was response to drug. Outside of that, I had some mild fatigue and mild cramping. I hope everything gets better with you, sounds terrible. Wishing you the best.

                                                     

                                                    Josh

                                                    JoshF
                                                    Participant

                                                      Julie-

                                                      I had thyroid issues that began with 2nd infusion and by 3rd infusion I was put on synthroid. Start at small dose and now at 125mcg. My oncologist said that this was response to drug. Outside of that, I had some mild fatigue and mild cramping. I hope everything gets better with you, sounds terrible. Wishing you the best.

                                                       

                                                      Josh

                                                      JoshF
                                                      Participant

                                                        Julie-

                                                        I had thyroid issues that began with 2nd infusion and by 3rd infusion I was put on synthroid. Start at small dose and now at 125mcg. My oncologist said that this was response to drug. Outside of that, I had some mild fatigue and mild cramping. I hope everything gets better with you, sounds terrible. Wishing you the best.

                                                         

                                                        Josh

                                                        PhyllisH
                                                        Participant
                                                          Hi Julie, Ive been having the exact same problems. I was on high dose Ippilumimab and devolped hypophysitis and hypothyriodism. It is permant and Ive been on replacement medication for nearly 2 years. I still get terrible headaches, severe fatugue and leg and joint pains. I feel like Im going to pass out sometimes when standing and have a lot of muscle weakness. The Dr.s think its weird too and dont know whats wrong with me or what to do. Are you still having these issues or did you get on other treatments? I’m finding it very hard to continue trying to go back to a “normal” life.
                                                          PhyllisH
                                                          Participant
                                                            Hi Julie, Ive been having the exact same problems. I was on high dose Ippilumimab and devolped hypophysitis and hypothyriodism. It is permant and Ive been on replacement medication for nearly 2 years. I still get terrible headaches, severe fatugue and leg and joint pains. I feel like Im going to pass out sometimes when standing and have a lot of muscle weakness. The Dr.s think its weird too and dont know whats wrong with me or what to do. Are you still having these issues or did you get on other treatments? I’m finding it very hard to continue trying to go back to a “normal” life.
                                                            PhyllisH
                                                            Participant
                                                              Hi Julie, Ive been having the exact same problems. I was on high dose Ippilumimab and devolped hypophysitis and hypothyriodism. It is permant and Ive been on replacement medication for nearly 2 years. I still get terrible headaches, severe fatugue and leg and joint pains. I feel like Im going to pass out sometimes when standing and have a lot of muscle weakness. The Dr.s think its weird too and dont know whats wrong with me or what to do. Are you still having these issues or did you get on other treatments? I’m finding it very hard to continue trying to go back to a “normal” life.
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