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Yervoy 10mg side effects and how long do they last?

Forums General Melanoma Community Yervoy 10mg side effects and how long do they last?

  • Post
    slh4448
    Participant

      Hey everyone,

      i know that there are several people who have been or are currently on Yervoy 10mg. I was just curious if you could share anything about the side effects and how long side effects lasted? I have my first infusion tomorrow morning.

      Thanks all,

      Stacy

    Viewing 23 reply threads
    • Replies
        jennunicorn
        Participant

          First thing to remember is that side effects are not a given. Everyone will react differently to the same drug and could have completely different side effects from others. Most people don't get much in the way of side effects until after the 3rd infusion, but some have only gotten through one or two infusions. For myself, the 2 side effects that have bothered me the most have been fatigue and joint pain. I have had fatigue since the first infusion, usually worse the week after then gradually my energy levels get better over time until the next infusion. Joint pain started after my 3rd infusion and got worse and has kind of leveled out and hurt pretty much every day and I have no clue if it will go away or go down, just have to wait and see on that. Just be aware of things like having more than a couple diarrhea in a day, let your onc know and if you develop a bad headache or are so fatigued that you can't get out of bed, things like that, let your onc know right away so they can rule out anything serious or treat anything that needs treating. Best thing to do is not let anything linger, not like you might under normal health circumstances. I know for myself I was never one to go to the doctor or make an appointment when I wasn't feeling well until it didn't get better after a couple of weeks. Now, if I have a couple loose stools and anything sort of off comes up, I email my onc's office right away, because it's best to keep them in the loop and they can get to the bottom of anything before it becomes too serious. 

          Best of luck, hopefully it goes smoothly for you.

          jennunicorn
          Participant

            First thing to remember is that side effects are not a given. Everyone will react differently to the same drug and could have completely different side effects from others. Most people don't get much in the way of side effects until after the 3rd infusion, but some have only gotten through one or two infusions. For myself, the 2 side effects that have bothered me the most have been fatigue and joint pain. I have had fatigue since the first infusion, usually worse the week after then gradually my energy levels get better over time until the next infusion. Joint pain started after my 3rd infusion and got worse and has kind of leveled out and hurt pretty much every day and I have no clue if it will go away or go down, just have to wait and see on that. Just be aware of things like having more than a couple diarrhea in a day, let your onc know and if you develop a bad headache or are so fatigued that you can't get out of bed, things like that, let your onc know right away so they can rule out anything serious or treat anything that needs treating. Best thing to do is not let anything linger, not like you might under normal health circumstances. I know for myself I was never one to go to the doctor or make an appointment when I wasn't feeling well until it didn't get better after a couple of weeks. Now, if I have a couple loose stools and anything sort of off comes up, I email my onc's office right away, because it's best to keep them in the loop and they can get to the bottom of anything before it becomes too serious. 

            Best of luck, hopefully it goes smoothly for you.

            jennunicorn
            Participant

              First thing to remember is that side effects are not a given. Everyone will react differently to the same drug and could have completely different side effects from others. Most people don't get much in the way of side effects until after the 3rd infusion, but some have only gotten through one or two infusions. For myself, the 2 side effects that have bothered me the most have been fatigue and joint pain. I have had fatigue since the first infusion, usually worse the week after then gradually my energy levels get better over time until the next infusion. Joint pain started after my 3rd infusion and got worse and has kind of leveled out and hurt pretty much every day and I have no clue if it will go away or go down, just have to wait and see on that. Just be aware of things like having more than a couple diarrhea in a day, let your onc know and if you develop a bad headache or are so fatigued that you can't get out of bed, things like that, let your onc know right away so they can rule out anything serious or treat anything that needs treating. Best thing to do is not let anything linger, not like you might under normal health circumstances. I know for myself I was never one to go to the doctor or make an appointment when I wasn't feeling well until it didn't get better after a couple of weeks. Now, if I have a couple loose stools and anything sort of off comes up, I email my onc's office right away, because it's best to keep them in the loop and they can get to the bottom of anything before it becomes too serious. 

              Best of luck, hopefully it goes smoothly for you.

                slh4448
                Participant

                  Thanks so much Jenn!! I really appreciate you sharing your experience with me. I'll post how it goes tomorrow ๐Ÿ™‚

                  Stacy

                  slh4448
                  Participant

                    Thanks so much Jenn!! I really appreciate you sharing your experience with me. I'll post how it goes tomorrow ๐Ÿ™‚

                    Stacy

                    slh4448
                    Participant

                      Thanks so much Jenn!! I really appreciate you sharing your experience with me. I'll post how it goes tomorrow ๐Ÿ™‚

                      Stacy

                    Lee Parlier
                    Participant

                      I finished my last 10 mg infusion 4 weeks ago. I didn't have much in the way of side effects through 3 treatments. Fatigue, nausea, stomach cramps and some in transit cancer popping out. For the most part, things went smooth. But I hit a wall after my 4th infusion. It has kicked my tail with nausea, fatigue, some diahrea, just a bad general overall feeling. So a month after my last infusion, I am still battling side effects. At least I was able to finish my 4 treatments, but feeling pretty rough the last month. We are all different but I did okay for the most part on the original 3 treatments. The last one is a different story.

                      Lee Parlier
                      Participant

                        I finished my last 10 mg infusion 4 weeks ago. I didn't have much in the way of side effects through 3 treatments. Fatigue, nausea, stomach cramps and some in transit cancer popping out. For the most part, things went smooth. But I hit a wall after my 4th infusion. It has kicked my tail with nausea, fatigue, some diahrea, just a bad general overall feeling. So a month after my last infusion, I am still battling side effects. At least I was able to finish my 4 treatments, but feeling pretty rough the last month. We are all different but I did okay for the most part on the original 3 treatments. The last one is a different story.

                        Lee Parlier
                        Participant

                          I finished my last 10 mg infusion 4 weeks ago. I didn't have much in the way of side effects through 3 treatments. Fatigue, nausea, stomach cramps and some in transit cancer popping out. For the most part, things went smooth. But I hit a wall after my 4th infusion. It has kicked my tail with nausea, fatigue, some diahrea, just a bad general overall feeling. So a month after my last infusion, I am still battling side effects. At least I was able to finish my 4 treatments, but feeling pretty rough the last month. We are all different but I did okay for the most part on the original 3 treatments. The last one is a different story.

                            slh4448
                            Participant

                              Thanks Lee for also sharing your experience and I'm glad to hear that you made it through those initial four doses. Hopefully your feeling better every day!

                              Stacy

                              slh4448
                              Participant

                                Thanks Lee for also sharing your experience and I'm glad to hear that you made it through those initial four doses. Hopefully your feeling better every day!

                                Stacy

                                slh4448
                                Participant

                                  Thanks Lee for also sharing your experience and I'm glad to hear that you made it through those initial four doses. Hopefully your feeling better every day!

                                  Stacy

                                MoiraM
                                Participant

                                  I was on 3mg/kg, but I am not convinced that it makes any difference. If the Ipi triggers a T cell response some of that respense may be agianst your normal cells.

                                  I had one infusion every 3 weeks.

                                  My side effects were:

                                  Infusion 1: Nothing

                                  Infusion 2: Diarrhoea (easily controlled with Imodium), a small amount of rash – both gone by infusion 3.

                                  Infusion 3:: Diarrhoea (easily controlled with Imodium), more severe rash (treated with hydrocortisone cream) – both gone by infusion 4.

                                  Infusion 4: Diarrhoea (still controlled with Imodium), rash (treated with hydrocortisone cream) and, then, increasing fatigue, headaches, loss of appetite, swollen ankles, inability to stand for long periods of time – diagnosed with hypophititis (inflamation of the pituitary gland). Rash and diarrhoea resolved, pituitary damage did not.

                                  Two months after my last infusion: more rash, more diarrhoea and uncontrollable wind. This bout of diarrhoea (with vast amounts of intestinal gas) lasted forty days before I decided that it was more like IBS and modified my diet.

                                  One year later:

                                  My anterior pituitary gland no longer works and I am on replacement doses of the absolutely essential hormones (cortisol and thyroxine).

                                  My gut has never been the same. If I eat what I used to eat I have diarrhoea and uncontrollable wind. After a year of experimentation I have worked out a diet, including some dietary supplements, that works most of the time.

                                  MoiraM
                                  Participant

                                    I was on 3mg/kg, but I am not convinced that it makes any difference. If the Ipi triggers a T cell response some of that respense may be agianst your normal cells.

                                    I had one infusion every 3 weeks.

                                    My side effects were:

                                    Infusion 1: Nothing

                                    Infusion 2: Diarrhoea (easily controlled with Imodium), a small amount of rash – both gone by infusion 3.

                                    Infusion 3:: Diarrhoea (easily controlled with Imodium), more severe rash (treated with hydrocortisone cream) – both gone by infusion 4.

                                    Infusion 4: Diarrhoea (still controlled with Imodium), rash (treated with hydrocortisone cream) and, then, increasing fatigue, headaches, loss of appetite, swollen ankles, inability to stand for long periods of time – diagnosed with hypophititis (inflamation of the pituitary gland). Rash and diarrhoea resolved, pituitary damage did not.

                                    Two months after my last infusion: more rash, more diarrhoea and uncontrollable wind. This bout of diarrhoea (with vast amounts of intestinal gas) lasted forty days before I decided that it was more like IBS and modified my diet.

                                    One year later:

                                    My anterior pituitary gland no longer works and I am on replacement doses of the absolutely essential hormones (cortisol and thyroxine).

                                    My gut has never been the same. If I eat what I used to eat I have diarrhoea and uncontrollable wind. After a year of experimentation I have worked out a diet, including some dietary supplements, that works most of the time.

                                    MoiraM
                                    Participant

                                      I was on 3mg/kg, but I am not convinced that it makes any difference. If the Ipi triggers a T cell response some of that respense may be agianst your normal cells.

                                      I had one infusion every 3 weeks.

                                      My side effects were:

                                      Infusion 1: Nothing

                                      Infusion 2: Diarrhoea (easily controlled with Imodium), a small amount of rash – both gone by infusion 3.

                                      Infusion 3:: Diarrhoea (easily controlled with Imodium), more severe rash (treated with hydrocortisone cream) – both gone by infusion 4.

                                      Infusion 4: Diarrhoea (still controlled with Imodium), rash (treated with hydrocortisone cream) and, then, increasing fatigue, headaches, loss of appetite, swollen ankles, inability to stand for long periods of time – diagnosed with hypophititis (inflamation of the pituitary gland). Rash and diarrhoea resolved, pituitary damage did not.

                                      Two months after my last infusion: more rash, more diarrhoea and uncontrollable wind. This bout of diarrhoea (with vast amounts of intestinal gas) lasted forty days before I decided that it was more like IBS and modified my diet.

                                      One year later:

                                      My anterior pituitary gland no longer works and I am on replacement doses of the absolutely essential hormones (cortisol and thyroxine).

                                      My gut has never been the same. If I eat what I used to eat I have diarrhoea and uncontrollable wind. After a year of experimentation I have worked out a diet, including some dietary supplements, that works most of the time.

                                      keepthefaith11
                                      Participant
                                        My father got through two treatments before having to discontinue. After the first treatment he had absolutely no symptoms. It was after the second treatment he started running fever of 104 that lasted a couple of days. Then his liver enzymes shot through the roof. He had to discontinue at that point. They put him on steroids and within a couple of weeks his liver enzymes were back to normal and have stayed that way. It all depends on how you will react to treatment. Some get through it just fine, some have mild side effects and some have to discontinue. Still, getting through one or two treatments is better than nothing.

                                        Annie

                                        keepthefaith11
                                        Participant
                                          My father got through two treatments before having to discontinue. After the first treatment he had absolutely no symptoms. It was after the second treatment he started running fever of 104 that lasted a couple of days. Then his liver enzymes shot through the roof. He had to discontinue at that point. They put him on steroids and within a couple of weeks his liver enzymes were back to normal and have stayed that way. It all depends on how you will react to treatment. Some get through it just fine, some have mild side effects and some have to discontinue. Still, getting through one or two treatments is better than nothing.

                                          Annie

                                          keepthefaith11
                                          Participant
                                            My father got through two treatments before having to discontinue. After the first treatment he had absolutely no symptoms. It was after the second treatment he started running fever of 104 that lasted a couple of days. Then his liver enzymes shot through the roof. He had to discontinue at that point. They put him on steroids and within a couple of weeks his liver enzymes were back to normal and have stayed that way. It all depends on how you will react to treatment. Some get through it just fine, some have mild side effects and some have to discontinue. Still, getting through one or two treatments is better than nothing.

                                            Annie

                                              JulesFout
                                              Participant
                                                I had the same as your father. I was treated fall of 2017. I am 6 months from my last infusion and still having some GI and lung issues. All minor as of right now. Did your father have any long lasting effects??
                                              miaka618
                                              Participant
                                                I had my first infusion of 10mg ipi a week ago and so far so good. A little wore out the second day, but then again, I took my boys to the fair and that is always an exhausting experience. Lol I too am curious as to how I will handle the rest of them.
                                                miaka618
                                                Participant
                                                  I had my first infusion of 10mg ipi a week ago and so far so good. A little wore out the second day, but then again, I took my boys to the fair and that is always an exhausting experience. Lol I too am curious as to how I will handle the rest of them.
                                                  miaka618
                                                  Participant
                                                    I had my first infusion of 10mg ipi a week ago and so far so good. A little wore out the second day, but then again, I took my boys to the fair and that is always an exhausting experience. Lol I too am curious as to how I will handle the rest of them.
                                                    Gene_S
                                                    Participant

                                                      Hello,

                                                      My husband was on 10 mg/kg of Ipi and GMCSF which he started in a clinical trial in Mar. 2011.  He had the Ipi itch and some joint discomfort and did his first 12 weeks of 4 infusions and then went to the maintenance phase until Dec. 2013 with one infusion every 12 weeks.  The GMCSF was daily injections which we did for 14 days and then 7 days off and kept that regiment for the full time until Dec. 2013.

                                                      He has an adrenal gland that is not producing any cortison which means he takes 5 mg per day but when first diagnosed he was on 7.5 mg a day.  This was diagnosed as he had bad mood swings but his temperature would flux really badly and with no warning.

                                                      When he first started IPI he had lesions in his liver, lungs and one unresectable lesion at the cervical spine C1 C2 area and 4 sub q's at the unresectable site.  We literally watched those shrink and go away in months and by his first scans was down in size by around 40% overall.  He became NED in July 2012 and he decided by Dec. 2013 if scans showed NED then he was going to go off of the trial and did.

                                                      If you would like to read more about his journey you can read his profile.

                                                      Judy (loving wife of Gene Stage IV and now NED for over 4 years.

                                                        dmturner
                                                        Participant

                                                          I did my first treatment of 10 mg last Wednesday.  No side effects.  I did notice when I went to followmyhealth.  That they also had put in with the Yervoy, antihistamine, etc for itching and rashes I assume.

                                                          Next treatment is September 7th.

                                                          Good Luck!!

                                                          Donna

                                                          dmturner
                                                          Participant

                                                            I did my first treatment of 10 mg last Wednesday.  No side effects.  I did notice when I went to followmyhealth.  That they also had put in with the Yervoy, antihistamine, etc for itching and rashes I assume.

                                                            Next treatment is September 7th.

                                                            Good Luck!!

                                                            Donna

                                                            Marianne quinn
                                                            Participant

                                                              My husband had his last treatment of yervoy 10 mg in March 2014. Side effects were controlled with Imodium for diarrhea, change of diet, Benadryl and lotion for the itching. HIs skin is more sensitive in that things like sawdust make him itch. He has to use lactaid milk and cannot eat whole wheat bread. 

                                                              Marianne quinn
                                                              Participant

                                                                My husband had his last treatment of yervoy 10 mg in March 2014. Side effects were controlled with Imodium for diarrhea, change of diet, Benadryl and lotion for the itching. HIs skin is more sensitive in that things like sawdust make him itch. He has to use lactaid milk and cannot eat whole wheat bread. 

                                                                Marianne quinn
                                                                Participant

                                                                  My husband had his last treatment of yervoy 10 mg in March 2014. Side effects were controlled with Imodium for diarrhea, change of diet, Benadryl and lotion for the itching. HIs skin is more sensitive in that things like sawdust make him itch. He has to use lactaid milk and cannot eat whole wheat bread. 

                                                                  dmturner
                                                                  Participant

                                                                    I did my first treatment of 10 mg last Wednesday.  No side effects.  I did notice when I went to followmyhealth.  That they also had put in with the Yervoy, antihistamine, etc for itching and rashes I assume.

                                                                    Next treatment is September 7th.

                                                                    Good Luck!!

                                                                    Donna

                                                                  Gene_S
                                                                  Participant

                                                                    Hello,

                                                                    My husband was on 10 mg/kg of Ipi and GMCSF which he started in a clinical trial in Mar. 2011.  He had the Ipi itch and some joint discomfort and did his first 12 weeks of 4 infusions and then went to the maintenance phase until Dec. 2013 with one infusion every 12 weeks.  The GMCSF was daily injections which we did for 14 days and then 7 days off and kept that regiment for the full time until Dec. 2013.

                                                                    He has an adrenal gland that is not producing any cortison which means he takes 5 mg per day but when first diagnosed he was on 7.5 mg a day.  This was diagnosed as he had bad mood swings but his temperature would flux really badly and with no warning.

                                                                    When he first started IPI he had lesions in his liver, lungs and one unresectable lesion at the cervical spine C1 C2 area and 4 sub q's at the unresectable site.  We literally watched those shrink and go away in months and by his first scans was down in size by around 40% overall.  He became NED in July 2012 and he decided by Dec. 2013 if scans showed NED then he was going to go off of the trial and did.

                                                                    If you would like to read more about his journey you can read his profile.

                                                                    Judy (loving wife of Gene Stage IV and now NED for over 4 years.

                                                                    Gene_S
                                                                    Participant

                                                                      Hello,

                                                                      My husband was on 10 mg/kg of Ipi and GMCSF which he started in a clinical trial in Mar. 2011.  He had the Ipi itch and some joint discomfort and did his first 12 weeks of 4 infusions and then went to the maintenance phase until Dec. 2013 with one infusion every 12 weeks.  The GMCSF was daily injections which we did for 14 days and then 7 days off and kept that regiment for the full time until Dec. 2013.

                                                                      He has an adrenal gland that is not producing any cortison which means he takes 5 mg per day but when first diagnosed he was on 7.5 mg a day.  This was diagnosed as he had bad mood swings but his temperature would flux really badly and with no warning.

                                                                      When he first started IPI he had lesions in his liver, lungs and one unresectable lesion at the cervical spine C1 C2 area and 4 sub q's at the unresectable site.  We literally watched those shrink and go away in months and by his first scans was down in size by around 40% overall.  He became NED in July 2012 and he decided by Dec. 2013 if scans showed NED then he was going to go off of the trial and did.

                                                                      If you would like to read more about his journey you can read his profile.

                                                                      Judy (loving wife of Gene Stage IV and now NED for over 4 years.

                                                                      slh4448
                                                                      Participant

                                                                        Hi all and thanks for all of your comments sharing your experiences. I had my first Yervoy 10mg infusion last Thursday. Basically uneventful yet I know that it could get worse from here??? I had a small bit of nausea but I had a rx for zofram. Next infusion is going to be on September 20th, not exactly 3 weeks but I'm traveling to a meeting when I would have my second scheduled infusion but doctor is certainly fine with that. 

                                                                        So I am to be on Yervoy for 3 years as long as I tolerate it and if my scans comes back clear. Is there anyone else out there that has  been on Yervoy 10mg for longer than 4 doses and up to 3 years?? If so, I'd love to hear how things have gone, etc.

                                                                        Best,

                                                                        Stacy

                                                                         

                                                                        slh4448
                                                                        Participant

                                                                          Hi all and thanks for all of your comments sharing your experiences. I had my first Yervoy 10mg infusion last Thursday. Basically uneventful yet I know that it could get worse from here??? I had a small bit of nausea but I had a rx for zofram. Next infusion is going to be on September 20th, not exactly 3 weeks but I'm traveling to a meeting when I would have my second scheduled infusion but doctor is certainly fine with that. 

                                                                          So I am to be on Yervoy for 3 years as long as I tolerate it and if my scans comes back clear. Is there anyone else out there that has  been on Yervoy 10mg for longer than 4 doses and up to 3 years?? If so, I'd love to hear how things have gone, etc.

                                                                          Best,

                                                                          Stacy

                                                                           

                                                                          slh4448
                                                                          Participant

                                                                            Hi all and thanks for all of your comments sharing your experiences. I had my first Yervoy 10mg infusion last Thursday. Basically uneventful yet I know that it could get worse from here??? I had a small bit of nausea but I had a rx for zofram. Next infusion is going to be on September 20th, not exactly 3 weeks but I'm traveling to a meeting when I would have my second scheduled infusion but doctor is certainly fine with that. 

                                                                            So I am to be on Yervoy for 3 years as long as I tolerate it and if my scans comes back clear. Is there anyone else out there that has  been on Yervoy 10mg for longer than 4 doses and up to 3 years?? If so, I'd love to hear how things have gone, etc.

                                                                            Best,

                                                                            Stacy

                                                                             

                                                                            Stlmag
                                                                            Participant

                                                                              My husband had one dose Yervoy Dec. 2015 Severe itching and entire body  rash. No more meds.

                                                                              Stlmag
                                                                              Participant

                                                                                My husband had one dose Yervoy Dec. 2015 Severe itching and entire body  rash. No more meds.

                                                                                Stlmag
                                                                                Participant

                                                                                  My husband had one dose Yervoy Dec. 2015 Severe itching and entire body  rash. No more meds.

                                                                                    slh4448
                                                                                    Participant

                                                                                      Sorry to hear that regarding your husband's experience. I'm trying not to think about side effects done the road after a few infusions. But it will be what it will be, right? 

                                                                                      slh4448
                                                                                      Participant

                                                                                        Sorry to hear that regarding your husband's experience. I'm trying not to think about side effects done the road after a few infusions. But it will be what it will be, right? 

                                                                                        slh4448
                                                                                        Participant

                                                                                          Sorry to hear that regarding your husband's experience. I'm trying not to think about side effects done the road after a few infusions. But it will be what it will be, right? 

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