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Yervoy side effects

Forums General Melanoma Community Yervoy side effects

  • Post
    Steve Plasier
    Participant

      I am curious about what side effects are common with patients. I just had all the lymph nodes removed from my right armpit and will start Yervoy soon.

    Viewing 29 reply threads
    • Replies
        jennunicorn
        Participant

          Hi Steve, 

          Sorry you have to go through all of this. I just finished 4 rounds of Yervoy myself, I am stage 3b, so it was the 10mg/kg dosage. First off, everyone is different. No one can really predict how their body will react to any kind of treatment or medication. I got through all 4 with very mild side effects. I have had fatigue the whole time, but not too severe. Most people seem to get the rash/itching and intestinal issues (diahrrea.. which for some becomes Colitis). I did not have either of those. I have had eczema for a long time, so it flared up the eczema for me (I use steroid cream to calm it down). I have posts where I updated about how I was feeling after each infusion which you can read if you go into my profile. I won't say that you'll have as easy of a time as I have had, but you'll keep your doctor in the loop during treatment and if any side effect comes up you'll let them know right away and they will help treat it if neccessary. I will say taking a good probiotic may be helpful. (check with your doctor first). Hope it goes smoothly for you!

          All the best,

          Jenn

          jennunicorn
          Participant

            Hi Steve, 

            Sorry you have to go through all of this. I just finished 4 rounds of Yervoy myself, I am stage 3b, so it was the 10mg/kg dosage. First off, everyone is different. No one can really predict how their body will react to any kind of treatment or medication. I got through all 4 with very mild side effects. I have had fatigue the whole time, but not too severe. Most people seem to get the rash/itching and intestinal issues (diahrrea.. which for some becomes Colitis). I did not have either of those. I have had eczema for a long time, so it flared up the eczema for me (I use steroid cream to calm it down). I have posts where I updated about how I was feeling after each infusion which you can read if you go into my profile. I won't say that you'll have as easy of a time as I have had, but you'll keep your doctor in the loop during treatment and if any side effect comes up you'll let them know right away and they will help treat it if neccessary. I will say taking a good probiotic may be helpful. (check with your doctor first). Hope it goes smoothly for you!

            All the best,

            Jenn

            jennunicorn
            Participant

              Hi Steve, 

              Sorry you have to go through all of this. I just finished 4 rounds of Yervoy myself, I am stage 3b, so it was the 10mg/kg dosage. First off, everyone is different. No one can really predict how their body will react to any kind of treatment or medication. I got through all 4 with very mild side effects. I have had fatigue the whole time, but not too severe. Most people seem to get the rash/itching and intestinal issues (diahrrea.. which for some becomes Colitis). I did not have either of those. I have had eczema for a long time, so it flared up the eczema for me (I use steroid cream to calm it down). I have posts where I updated about how I was feeling after each infusion which you can read if you go into my profile. I won't say that you'll have as easy of a time as I have had, but you'll keep your doctor in the loop during treatment and if any side effect comes up you'll let them know right away and they will help treat it if neccessary. I will say taking a good probiotic may be helpful. (check with your doctor first). Hope it goes smoothly for you!

              All the best,

              Jenn

              Scooby123
              Participant

                Hi Steve ,

                sorry you are dealing with this , I too have had yeryoy and managed with itchy skin, but do agree with jenn all are differentt and your doctor will be on top of side effects if accur. Make sure you let them know of any issues you are getting

                all the best

                scooby123❤️

                  Steve Plasier
                  Participant

                    Thanks for your imput. So far my face is a little itchy

                    Steve Plasier
                    Participant

                      Thanks for your imput. So far my face is a little itchy

                      Steve Plasier
                      Participant

                        Thanks for your imput. So far my face is a little itchy

                      Scooby123
                      Participant

                        Hi Steve ,

                        sorry you are dealing with this , I too have had yeryoy and managed with itchy skin, but do agree with jenn all are differentt and your doctor will be on top of side effects if accur. Make sure you let them know of any issues you are getting

                        all the best

                        scooby123❤️

                        Scooby123
                        Participant

                          Hi Steve ,

                          sorry you are dealing with this , I too have had yeryoy and managed with itchy skin, but do agree with jenn all are differentt and your doctor will be on top of side effects if accur. Make sure you let them know of any issues you are getting

                          all the best

                          scooby123❤️

                          Gene_S
                          Participant

                            Hi Steve,

                            My husband was Stage IV and on a Clinical Trial for 10 mg/kg of Ipi (Yervoy) and GMCSF daily injections.  He mostly had the itchy rash, some fatigue, some sore joints for a while, as time went on he had his eyebrows turn white and then some of his beard, he lost pigmentation in his face and neck.  It worked for him and he is now NED if you would like to read more check out his profile.

                            Like the other person said everyone is different and gets different side effects.  His 5 year Anniversary for starting the clinical trial is coming up on Mar. 3.  He became NED in Nov. of 2012, continued on the maintenance doses until Dec. 2013.  So he has now been NED for 3 years 4 months.

                            Judy (loving wife of Gene Stage IV and now NED for over 3 years.

                            Gene_S
                            Participant

                              Hi Steve,

                              My husband was Stage IV and on a Clinical Trial for 10 mg/kg of Ipi (Yervoy) and GMCSF daily injections.  He mostly had the itchy rash, some fatigue, some sore joints for a while, as time went on he had his eyebrows turn white and then some of his beard, he lost pigmentation in his face and neck.  It worked for him and he is now NED if you would like to read more check out his profile.

                              Like the other person said everyone is different and gets different side effects.  His 5 year Anniversary for starting the clinical trial is coming up on Mar. 3.  He became NED in Nov. of 2012, continued on the maintenance doses until Dec. 2013.  So he has now been NED for 3 years 4 months.

                              Judy (loving wife of Gene Stage IV and now NED for over 3 years.

                                Scooby123
                                Participant

                                  Hi Gene S

                                  i often look at your husband profile regarding is tumours and where he had them, I too have liver, lungs, and probably else where , I had ippi but 3 mg 4 doses with 50% reduction but we do not get maintanence dose even thou I have had a response. I am not Braf so would love to have had the chance to have more. I do believe it would have help me more, I know they worry regarding side effects but I only had itchy skin . BM movements some days but meds soon got on top of it. 

                                  So pleased for your hubby and you and hope next month when I eventually get my scan results more shrinkage or still stable. Praying anyway.

                                  take care

                                  scooby123❤️

                                  Scooby123
                                  Participant

                                    Hi Gene S

                                    i often look at your husband profile regarding is tumours and where he had them, I too have liver, lungs, and probably else where , I had ippi but 3 mg 4 doses with 50% reduction but we do not get maintanence dose even thou I have had a response. I am not Braf so would love to have had the chance to have more. I do believe it would have help me more, I know they worry regarding side effects but I only had itchy skin . BM movements some days but meds soon got on top of it. 

                                    So pleased for your hubby and you and hope next month when I eventually get my scan results more shrinkage or still stable. Praying anyway.

                                    take care

                                    scooby123❤️

                                    Scooby123
                                    Participant

                                      Hi Gene S

                                      i often look at your husband profile regarding is tumours and where he had them, I too have liver, lungs, and probably else where , I had ippi but 3 mg 4 doses with 50% reduction but we do not get maintanence dose even thou I have had a response. I am not Braf so would love to have had the chance to have more. I do believe it would have help me more, I know they worry regarding side effects but I only had itchy skin . BM movements some days but meds soon got on top of it. 

                                      So pleased for your hubby and you and hope next month when I eventually get my scan results more shrinkage or still stable. Praying anyway.

                                      take care

                                      scooby123❤️

                                      Scooby123
                                      Participant

                                        Hi Gene S

                                        i often look at your husband profile regarding is tumours and where he had them, I too have liver, lungs, and probably else where , I had ippi but 3 mg 4 doses with 50% reduction but we do not get maintanence dose even thou I have had a response. I am not Braf so would love to have had the chance to have more. I do believe it would have help me more, I know they worry regarding side effects but I only had itchy skin . BM movements some days but meds soon got on top of it. 

                                        So pleased for your hubby and you and hope next month when I eventually get my scan results more shrinkage or still stable. Praying anyway.

                                        take care

                                        scooby123❤️

                                        Scooby123
                                        Participant

                                          Hi Gene S

                                          i often look at your husband profile regarding is tumours and where he had them, I too have liver, lungs, and probably else where , I had ippi but 3 mg 4 doses with 50% reduction but we do not get maintanence dose even thou I have had a response. I am not Braf so would love to have had the chance to have more. I do believe it would have help me more, I know they worry regarding side effects but I only had itchy skin . BM movements some days but meds soon got on top of it. 

                                          So pleased for your hubby and you and hope next month when I eventually get my scan results more shrinkage or still stable. Praying anyway.

                                          take care

                                          scooby123❤️

                                          Scooby123
                                          Participant

                                            Hi Gene S

                                            i often look at your husband profile regarding is tumours and where he had them, I too have liver, lungs, and probably else where , I had ippi but 3 mg 4 doses with 50% reduction but we do not get maintanence dose even thou I have had a response. I am not Braf so would love to have had the chance to have more. I do believe it would have help me more, I know they worry regarding side effects but I only had itchy skin . BM movements some days but meds soon got on top of it. 

                                            So pleased for your hubby and you and hope next month when I eventually get my scan results more shrinkage or still stable. Praying anyway.

                                            take care

                                            scooby123❤️

                                          Gene_S
                                          Participant

                                            Hi Steve,

                                            My husband was Stage IV and on a Clinical Trial for 10 mg/kg of Ipi (Yervoy) and GMCSF daily injections.  He mostly had the itchy rash, some fatigue, some sore joints for a while, as time went on he had his eyebrows turn white and then some of his beard, he lost pigmentation in his face and neck.  It worked for him and he is now NED if you would like to read more check out his profile.

                                            Like the other person said everyone is different and gets different side effects.  His 5 year Anniversary for starting the clinical trial is coming up on Mar. 3.  He became NED in Nov. of 2012, continued on the maintenance doses until Dec. 2013.  So he has now been NED for 3 years 4 months.

                                            Judy (loving wife of Gene Stage IV and now NED for over 3 years.

                                            MoiraM
                                            Participant

                                              After the first treatment there were no side effects. After the second I had some diarrhoea that was easily controlled with Imodium and a small amount of rash – so little that my doctor was not sure it was due to the Yervoy and it quickly faded away. After the third I had more mild rash which, for me was on my arms and thighs and was symetrical and more diarrhoea.I also started to feel tired and my appetite decreased. However my bloods were normal at theis stage and I was cleared for the 4th treatment.

                                              It was after my fourth treatment that things started to happen, although they crept up on me quite gradually and I did not realise that I was in trouble for some time. I felt tired again, the rash was a proper 'ipi rash' and I did not have any appetite. The importanr indicators that I missed was I had side of neck painextreme triedness and my diarrhoea stopped.

                                              Went for a blood test and discovered that my anterior pitiutary gand had packed up. Bad news, it will never recover. Good news, it isn't the end of the world – I have to take daily replacement doses of thyroxine and prednisolone. More good news, I am a responder and my tumours shrunk.

                                              MoiraM
                                              Participant

                                                After the first treatment there were no side effects. After the second I had some diarrhoea that was easily controlled with Imodium and a small amount of rash – so little that my doctor was not sure it was due to the Yervoy and it quickly faded away. After the third I had more mild rash which, for me was on my arms and thighs and was symetrical and more diarrhoea.I also started to feel tired and my appetite decreased. However my bloods were normal at theis stage and I was cleared for the 4th treatment.

                                                It was after my fourth treatment that things started to happen, although they crept up on me quite gradually and I did not realise that I was in trouble for some time. I felt tired again, the rash was a proper 'ipi rash' and I did not have any appetite. The importanr indicators that I missed was I had side of neck painextreme triedness and my diarrhoea stopped.

                                                Went for a blood test and discovered that my anterior pitiutary gand had packed up. Bad news, it will never recover. Good news, it isn't the end of the world – I have to take daily replacement doses of thyroxine and prednisolone. More good news, I am a responder and my tumours shrunk.

                                                MoiraM
                                                Participant

                                                  After the first treatment there were no side effects. After the second I had some diarrhoea that was easily controlled with Imodium and a small amount of rash – so little that my doctor was not sure it was due to the Yervoy and it quickly faded away. After the third I had more mild rash which, for me was on my arms and thighs and was symetrical and more diarrhoea.I also started to feel tired and my appetite decreased. However my bloods were normal at theis stage and I was cleared for the 4th treatment.

                                                  It was after my fourth treatment that things started to happen, although they crept up on me quite gradually and I did not realise that I was in trouble for some time. I felt tired again, the rash was a proper 'ipi rash' and I did not have any appetite. The importanr indicators that I missed was I had side of neck painextreme triedness and my diarrhoea stopped.

                                                  Went for a blood test and discovered that my anterior pitiutary gand had packed up. Bad news, it will never recover. Good news, it isn't the end of the world – I have to take daily replacement doses of thyroxine and prednisolone. More good news, I am a responder and my tumours shrunk.

                                                  Squash
                                                  Participant

                                                    I am starting yervoy today.

                                                    My dosage is only 1mg but I was told all the research stated that this was just as effective as the higher dosages but obviously with less side effects.

                                                    I am hoping it works as I didnt have any luck with Permbro and I am hoping i dont get gastro issues which i am prone to get.

                                                    How long for side effects to kick in on the yervoy?

                                                     

                                                     

                                                    Squash
                                                    Participant

                                                      I am starting yervoy today.

                                                      My dosage is only 1mg but I was told all the research stated that this was just as effective as the higher dosages but obviously with less side effects.

                                                      I am hoping it works as I didnt have any luck with Permbro and I am hoping i dont get gastro issues which i am prone to get.

                                                      How long for side effects to kick in on the yervoy?

                                                       

                                                       

                                                      Squash
                                                      Participant

                                                        I am starting yervoy today.

                                                        My dosage is only 1mg but I was told all the research stated that this was just as effective as the higher dosages but obviously with less side effects.

                                                        I am hoping it works as I didnt have any luck with Permbro and I am hoping i dont get gastro issues which i am prone to get.

                                                        How long for side effects to kick in on the yervoy?

                                                         

                                                         

                                                          MoiraM
                                                          Participant

                                                            I was on 3mg/kg. My diarrhoea started 2 weeks after the secnd dose, so five weeks in.

                                                            MoiraM
                                                            Participant

                                                              I was on 3mg/kg. My diarrhoea started 2 weeks after the secnd dose, so five weeks in.

                                                              MoiraM
                                                              Participant

                                                                I was on 3mg/kg. My diarrhoea started 2 weeks after the secnd dose, so five weeks in.

                                                              Steve Plasier
                                                              Participant

                                                                Thanks everyone for the information. I don't know what strength of Yervoy or just when yet. I see my Cancer Doctor March 2, 2016.

                                                                Steve Plasier
                                                                Participant

                                                                  Thanks everyone for the information. I don't know what strength of Yervoy or just when yet. I see my Cancer Doctor March 2, 2016.

                                                                    Steve Plasier
                                                                    Participant

                                                                      I did my first infusion March 23rd. so far my face is a little itchy.

                                                                      Steve Plasier
                                                                      Participant

                                                                        I did my first infusion March 23rd. so far my face is a little itchy.

                                                                        Steve Plasier
                                                                        Participant

                                                                          I did my first infusion March 23rd. so far my face is a little itchy.

                                                                        Steve Plasier
                                                                        Participant

                                                                          Thanks everyone for the information. I don't know what strength of Yervoy or just when yet. I see my Cancer Doctor March 2, 2016.

                                                                          ed williams
                                                                          Participant

                                                                            Steve, if you want to spend some time listening to a webcast by Dr. Weber and Dr. Agarwala two leaders in the field of melanoma talk about what oncologist are seeing as far as side effects with Immunotherapy drugs. You can go to " Omedlive" you have to sign up, no cost and no junk mail afterwards. If you click at the top row of choices you will find presentations, then choose Melanoma and you will find a webinar presentation titled " A team based approach to optimizing outcomes in melanoma. Hope this helps!!! Ed

                                                                            ed williams
                                                                            Participant

                                                                              Steve, if you want to spend some time listening to a webcast by Dr. Weber and Dr. Agarwala two leaders in the field of melanoma talk about what oncologist are seeing as far as side effects with Immunotherapy drugs. You can go to " Omedlive" you have to sign up, no cost and no junk mail afterwards. If you click at the top row of choices you will find presentations, then choose Melanoma and you will find a webinar presentation titled " A team based approach to optimizing outcomes in melanoma. Hope this helps!!! Ed

                                                                                Steve Plasier
                                                                                Participant

                                                                                  Thanks Ed,  I will check it out

                                                                                  Steve Plasier
                                                                                  Participant

                                                                                    Thanks Ed,  I will check it out

                                                                                    Steve Plasier
                                                                                    Participant

                                                                                      Thanks Ed,  I will check it out

                                                                                    ed williams
                                                                                    Participant

                                                                                      Steve, if you want to spend some time listening to a webcast by Dr. Weber and Dr. Agarwala two leaders in the field of melanoma talk about what oncologist are seeing as far as side effects with Immunotherapy drugs. You can go to " Omedlive" you have to sign up, no cost and no junk mail afterwards. If you click at the top row of choices you will find presentations, then choose Melanoma and you will find a webinar presentation titled " A team based approach to optimizing outcomes in melanoma. Hope this helps!!! Ed

                                                                                      gregor913
                                                                                      Participant
                                                                                        I finished my third infusion of yervoy. My skin itched for two days with mild fatigue then went away. I’m on the 10mg dose and have one more infusion in march. Just did my bloods and got the all clear for 4th. Good luck in your treatment. Tips drink lots of water. At least 8 cups a day. I was on a probiotic and used a different soap. I used goat milk soap that seems to have helped with the itching.

                                                                                        Cheers Greg

                                                                                        gregor913
                                                                                        Participant
                                                                                          I finished my third infusion of yervoy. My skin itched for two days with mild fatigue then went away. I’m on the 10mg dose and have one more infusion in march. Just did my bloods and got the all clear for 4th. Good luck in your treatment. Tips drink lots of water. At least 8 cups a day. I was on a probiotic and used a different soap. I used goat milk soap that seems to have helped with the itching.

                                                                                          Cheers Greg

                                                                                            Steve Plasier
                                                                                            Participant

                                                                                              I did my first infusion March 23rd and my face has been alittle itchy today. The soap is a good idea

                                                                                              Steve Plasier
                                                                                              Participant

                                                                                                I did my first infusion March 23rd and my face has been alittle itchy today. The soap is a good idea

                                                                                                Steve Plasier
                                                                                                Participant

                                                                                                  I did my first infusion March 23rd and my face has been alittle itchy today. The soap is a good idea

                                                                                                gregor913
                                                                                                Participant
                                                                                                  I finished my third infusion of yervoy. My skin itched for two days with mild fatigue then went away. I’m on the 10mg dose and have one more infusion in march. Just did my bloods and got the all clear for 4th. Good luck in your treatment. Tips drink lots of water. At least 8 cups a day. I was on a probiotic and used a different soap. I used goat milk soap that seems to have helped with the itching.

                                                                                                  Cheers Greg

                                                                                                  keepthefaith11
                                                                                                  Participant
                                                                                                    My dad did his first infusion 2 weeks ago and has not felt anything. We are keeping fingers crossed that he will keep feeling well, like so many on here have. He is taking probiotics as well.

                                                                                                    Also he is doing radiation simultaneously and just finished week 1 of 4.

                                                                                                    keepthefaith11
                                                                                                    Participant
                                                                                                      My dad did his first infusion 2 weeks ago and has not felt anything. We are keeping fingers crossed that he will keep feeling well, like so many on here have. He is taking probiotics as well.

                                                                                                      Also he is doing radiation simultaneously and just finished week 1 of 4.

                                                                                                      keepthefaith11
                                                                                                      Participant
                                                                                                        My dad did his first infusion 2 weeks ago and has not felt anything. We are keeping fingers crossed that he will keep feeling well, like so many on here have. He is taking probiotics as well.

                                                                                                        Also he is doing radiation simultaneously and just finished week 1 of 4.

                                                                                                        snoopyinoc
                                                                                                        Participant

                                                                                                          Hi Steve. My husband is on ipi/nivo (we were told this is more effective than Yervoy alone) combo and his side effects started after the 3rd infusion were extreme fatigue, rashes, and severe headaches, along with mild diahrea and nausia. He completed 3 rounds of the ipi/nivo combo and was a responder. His tumors shrank which we are very happy about. He will contintue the nvo only regiment every two weeks.

                                                                                                          To help with his side effects he is currenlty on steriods.

                                                                                                          Best wishes to you!

                                                                                                           

                                                                                                          snoopyinoc
                                                                                                          Participant

                                                                                                            Hi Steve. My husband is on ipi/nivo (we were told this is more effective than Yervoy alone) combo and his side effects started after the 3rd infusion were extreme fatigue, rashes, and severe headaches, along with mild diahrea and nausia. He completed 3 rounds of the ipi/nivo combo and was a responder. His tumors shrank which we are very happy about. He will contintue the nvo only regiment every two weeks.

                                                                                                            To help with his side effects he is currenlty on steriods.

                                                                                                            Best wishes to you!

                                                                                                             

                                                                                                            snoopyinoc
                                                                                                            Participant

                                                                                                              Hi Steve. My husband is on ipi/nivo (we were told this is more effective than Yervoy alone) combo and his side effects started after the 3rd infusion were extreme fatigue, rashes, and severe headaches, along with mild diahrea and nausia. He completed 3 rounds of the ipi/nivo combo and was a responder. His tumors shrank which we are very happy about. He will contintue the nvo only regiment every two weeks.

                                                                                                              To help with his side effects he is currenlty on steriods.

                                                                                                              Best wishes to you!

                                                                                                               

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