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Having a bad week with Yervoy Side Effects
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Having a bad week with Yervoy Side Effects

› Forums › General Melanoma Community › Having a bad week with Yervoy Side Effects

  • Post
    • October 3, 2011 at 9:59 pm
    AlanM
    Participant

      I was scheduled to have my 3rd infusion of Yervoy this past Wednesday. Instead on was on an escalating dose of prednisone due to colitus symptoms. By Friday they were full blown and I was admitted to the hospital for an infusion of Remicade and fluids. The Remicade has stopped the bleeding and drastically reduced the frequency so at this point hoping to back off on the 100mg that I am taking daily. I am sure there are others here that have experienced colitus from  Yervoy. How long has it taken to get things back under control?

      I was scheduled to have my 3rd infusion of Yervoy this past Wednesday. Instead on was on an escalating dose of prednisone due to colitus symptoms. By Friday they were full blown and I was admitted to the hospital for an infusion of Remicade and fluids. The Remicade has stopped the bleeding and drastically reduced the frequency so at this point hoping to back off on the 100mg that I am taking daily. I am sure there are others here that have experienced colitus from  Yervoy. How long has it taken to get things back under control?

      I was only able to work one day last week and today I am just exhausted from the weekend in the hospital, all the predisone, etc. This is really starting to affect my sleep and ability to focus. Any helpful hints from somebody who has "been there" would be helpful. 

      Alan

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    • Replies
        • October 3, 2011 at 11:14 pm
        mombase
        Participant

          I am not quite there be could be very easily. I had my first infusion a week ago and have to live on imodium-d. I have also had flu-like symptoms, tunnel vision, and just a general "loopy" feeling. I am not really looking forward to see what the second infusion brings!

          How long did it take for your colitis symptoms to begin? I am quite confused with Yervoy…I know that it is a slow acting infusion, but are the side effects slow to begin and long lasting? I see my onc tomorrow, but I am the first person in the NorCal VA system to receive Yervoy, so I am just kind of the guinea pig here!

          Cristy,  Stage IV

            • October 4, 2011 at 12:33 am
            AlanM
            Participant

              The only thing  noticed with my first infusion was a few stomach grumbles….but they went away. About a week after my second they came back and by the end of that week  I started steroids to try and control the colitus.  I was also having night chills and fevers. After a week and a haf  of escalating the steriod doses with increasing symptoms I was admitted to the hospital to get it under control. The good news is the doctor I am seeing administered the trials in my area so he knew how to handle it! Now I just have to taper off the steriods and hope the symptoms continue to subside. I just don't know how long that will take and the steriods are taking a toll on my ability to sleep.  

              Alan

              • October 4, 2011 at 12:33 am
              AlanM
              Participant

                The only thing  noticed with my first infusion was a few stomach grumbles….but they went away. About a week after my second they came back and by the end of that week  I started steroids to try and control the colitus.  I was also having night chills and fevers. After a week and a haf  of escalating the steriod doses with increasing symptoms I was admitted to the hospital to get it under control. The good news is the doctor I am seeing administered the trials in my area so he knew how to handle it! Now I just have to taper off the steriods and hope the symptoms continue to subside. I just don't know how long that will take and the steriods are taking a toll on my ability to sleep.  

                Alan

                • October 4, 2011 at 12:52 am
                mombase
                Participant

                  If you don't mind answering, what were your symptoms of colitis, and how long after your second infusion did they begin? I hate the thought of taking decadron, or any kind of steroids…I  hallucinate  when I try to shut my eyes to sleep, and they are definitely not good hallucinations!!

                  Cristy, Stage IV

                  • October 4, 2011 at 12:52 am
                  mombase
                  Participant

                    If you don't mind answering, what were your symptoms of colitis, and how long after your second infusion did they begin? I hate the thought of taking decadron, or any kind of steroids…I  hallucinate  when I try to shut my eyes to sleep, and they are definitely not good hallucinations!!

                    Cristy, Stage IV

                    • October 4, 2011 at 12:49 am
                    lhaley
                    Participant

                      Cristy,

                      You shouldn't be taking imodium unless the Dr tells you. You need to call the Dr as soon as you have diarhea and they will prescribe you for specific steroids to deal with this. 

                      I'm not on Yervoy but when they thought they were going on me a few months ago my Oncologist explained me that I was to call immediately when their were colitis. I know you should first eat bland when you have issues to help.  I have heard others on the board that have found that their Dr responds quickly when there is a problem.

                      Good luck!

                      Linda

                      • October 4, 2011 at 12:49 am
                      lhaley
                      Participant

                        Cristy,

                        You shouldn't be taking imodium unless the Dr tells you. You need to call the Dr as soon as you have diarhea and they will prescribe you for specific steroids to deal with this. 

                        I'm not on Yervoy but when they thought they were going on me a few months ago my Oncologist explained me that I was to call immediately when their were colitis. I know you should first eat bland when you have issues to help.  I have heard others on the board that have found that their Dr responds quickly when there is a problem.

                        Good luck!

                        Linda

                        • October 4, 2011 at 12:57 am
                        mombase
                        Participant

                          Hi Linda,

                          The oncology nurse told me to take imodium, and everything I have read says to make sure that the diarrhea is taken care of right away so that it does not turn in to colitis. I see the doc tomorrow so hopefully we can get this straightened out.  Not that the melanoma isn't bad enough, we have to worry about colitis, too???  frown

                           

                          Cristy, Stage IV

                          • October 4, 2011 at 12:57 am
                          mombase
                          Participant

                            Hi Linda,

                            The oncology nurse told me to take imodium, and everything I have read says to make sure that the diarrhea is taken care of right away so that it does not turn in to colitis. I see the doc tomorrow so hopefully we can get this straightened out.  Not that the melanoma isn't bad enough, we have to worry about colitis, too???  frown

                             

                            Cristy, Stage IV

                            • October 4, 2011 at 1:31 am
                            lhaley
                            Participant

                              Cristy,

                              Colitis is one of the dangerous side effects of Yervoy.  I'm including a link to a post from Karen (hope she doesn't mind) that gives info about diarrhea. I'm sure if you contact her she could give you some info.  It so happens that her post is right above this post!  Just make sure to be an honest discussion with your onc tomorrow about the side effects your having. 

                              http://www.melanoma.org/community/mpip-melanoma-patients-information-page/ipi-journey-continues-long

                              Linda

                              • October 4, 2011 at 1:31 am
                              lhaley
                              Participant

                                Cristy,

                                Colitis is one of the dangerous side effects of Yervoy.  I'm including a link to a post from Karen (hope she doesn't mind) that gives info about diarrhea. I'm sure if you contact her she could give you some info.  It so happens that her post is right above this post!  Just make sure to be an honest discussion with your onc tomorrow about the side effects your having. 

                                http://www.melanoma.org/community/mpip-melanoma-patients-information-page/ipi-journey-continues-long

                                Linda

                                • October 4, 2011 at 2:08 am
                                mombase
                                Participant

                                  Thanks, Linda. I have printed out Karen's response so I can remember the information.

                                  Cristy

                                  • October 4, 2011 at 2:08 am
                                  mombase
                                  Participant

                                    Thanks, Linda. I have printed out Karen's response so I can remember the information.

                                    Cristy

                                    • October 4, 2011 at 11:36 am
                                    Lisa13
                                    Participant

                                      I'm also on Yervoy and my Dr. was very specific in terms of bowel movements. If I had more than 2 a day, I had to take the steroids he perscribed me. He said that if it was mild and only 1 a day, immodium would be sufficient. He had 1 patient die in his trial, so he's VERY cautious when it comes to any symptoms whatsoever.

                                      Alan, I believe if the stomach issues are controlled through steroids, they continue on with ipi. If they can't control them at all, then they ahve to stop treatment for a while.

                                      Best of luck to all of you!

                                      Lisa

                                      • October 4, 2011 at 11:36 am
                                      Lisa13
                                      Participant

                                        I'm also on Yervoy and my Dr. was very specific in terms of bowel movements. If I had more than 2 a day, I had to take the steroids he perscribed me. He said that if it was mild and only 1 a day, immodium would be sufficient. He had 1 patient die in his trial, so he's VERY cautious when it comes to any symptoms whatsoever.

                                        Alan, I believe if the stomach issues are controlled through steroids, they continue on with ipi. If they can't control them at all, then they ahve to stop treatment for a while.

                                        Best of luck to all of you!

                                        Lisa

                                        • October 4, 2011 at 4:11 pm
                                        mombase
                                        Participant

                                          Thanks, Lisa. I appreciate the information. I wouldn't even considered these as bowel movements. Okay, I guess they were, but it was just like water (gross). Anyway, as soon as I took the imodium, they stopped and I have not had a problem since that first day. I am going to make sure that I ask him about the steroid though. I don't like steroids, but I think I would like them better than death!! angel

                                          I have an afternoon appointment with him today…lots to talk about, at least from my perspective!

                                          Take care!

                                          Cristy, Stage IV

                                          • October 4, 2011 at 4:11 pm
                                          mombase
                                          Participant

                                            Thanks, Lisa. I appreciate the information. I wouldn't even considered these as bowel movements. Okay, I guess they were, but it was just like water (gross). Anyway, as soon as I took the imodium, they stopped and I have not had a problem since that first day. I am going to make sure that I ask him about the steroid though. I don't like steroids, but I think I would like them better than death!! angel

                                            I have an afternoon appointment with him today…lots to talk about, at least from my perspective!

                                            Take care!

                                            Cristy, Stage IV

                                          • October 3, 2011 at 11:14 pm
                                          mombase
                                          Participant

                                            I am not quite there be could be very easily. I had my first infusion a week ago and have to live on imodium-d. I have also had flu-like symptoms, tunnel vision, and just a general "loopy" feeling. I am not really looking forward to see what the second infusion brings!

                                            How long did it take for your colitis symptoms to begin? I am quite confused with Yervoy…I know that it is a slow acting infusion, but are the side effects slow to begin and long lasting? I see my onc tomorrow, but I am the first person in the NorCal VA system to receive Yervoy, so I am just kind of the guinea pig here!

                                            Cristy,  Stage IV

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