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GI side effects with Yervoy

Forums General Melanoma Community GI side effects with Yervoy

  • Post
    lna426
    Participant

      Hi all – 

      In between my first and second treatments I developed really bad colitis (intestinal inflammation that makes me look like I'm pregnant). Four weeks after my last infusion and I'm still the size of a house!

      I'm wondering if anyone treated with Yervoy had a similar experience, and, if so, how long it lasted. I know every person reacts to the drug differently, but any insight would help.

      Thanks!

      Hi all – 

      In between my first and second treatments I developed really bad colitis (intestinal inflammation that makes me look like I'm pregnant). Four weeks after my last infusion and I'm still the size of a house!

      I'm wondering if anyone treated with Yervoy had a similar experience, and, if so, how long it lasted. I know every person reacts to the drug differently, but any insight would help.

      Thanks!

    Viewing 17 reply threads
    • Replies
        Gene_S
        Participant

          Hi, Just wondering what your doctor (oncologist) has to say about your colitis?

          My doctor gave me his cell phone number with instructions to call him with any

          problems , especially colitis.

          Best Wishes,

          Gene (Stage IV)

            lna426
            Participant

              HI Gene – 

               

              Thank you for your response. My doctor said the inflammation is a bi-product of the Yervoy and has had patients who have experienced this before. Because of how the drug works, she unfortunatley could not provide any insight as to how long the colitis might persist, which is why I'm reaching out to the community.

              I'm taking a low-dose of steroids to help with the inflammation, but it hasn't solved the problem. I'm curious as to how long your colitis lasted and if anything helped.

              lna426
              Participant

                HI Gene – 

                 

                Thank you for your response. My doctor said the inflammation is a bi-product of the Yervoy and has had patients who have experienced this before. Because of how the drug works, she unfortunatley could not provide any insight as to how long the colitis might persist, which is why I'm reaching out to the community.

                I'm taking a low-dose of steroids to help with the inflammation, but it hasn't solved the problem. I'm curious as to how long your colitis lasted and if anything helped.

                lna426
                Participant

                  HI Gene – 

                   

                  Thank you for your response. My doctor said the inflammation is a bi-product of the Yervoy and has had patients who have experienced this before. Because of how the drug works, she unfortunatley could not provide any insight as to how long the colitis might persist, which is why I'm reaching out to the community.

                  I'm taking a low-dose of steroids to help with the inflammation, but it hasn't solved the problem. I'm curious as to how long your colitis lasted and if anything helped.

                Gene_S
                Participant

                  Hi, Just wondering what your doctor (oncologist) has to say about your colitis?

                  My doctor gave me his cell phone number with instructions to call him with any

                  problems , especially colitis.

                  Best Wishes,

                  Gene (Stage IV)

                  Gene_S
                  Participant

                    Hi, Just wondering what your doctor (oncologist) has to say about your colitis?

                    My doctor gave me his cell phone number with instructions to call him with any

                    problems , especially colitis.

                    Best Wishes,

                    Gene (Stage IV)

                    Roxy1453
                    Participant
                      My colitis started 2 days before my second Ipi treatment. I was on steroids for three weeks. I took the last one yesterday. I had a PET scan today and was to have my 3 treatment. The scan showed my colitis wasn’t gone so I didn’t get to have the next treatment. I’m waiting to hear from my Dr on what to do. We weren’t for sure it was back until I got home and the diarrhea started again. I am scheduled to go in Thurs for my treatment. But I’m thinking that won’t happen now.

                      The good thing is there was no new cancer on the scan. The one spot I do have has grown a little but I think that is not unusual.

                      Hang in there I’m sure they can fix us!

                      Nancy

                      Roxy1453
                      Participant
                        My colitis started 2 days before my second Ipi treatment. I was on steroids for three weeks. I took the last one yesterday. I had a PET scan today and was to have my 3 treatment. The scan showed my colitis wasn’t gone so I didn’t get to have the next treatment. I’m waiting to hear from my Dr on what to do. We weren’t for sure it was back until I got home and the diarrhea started again. I am scheduled to go in Thurs for my treatment. But I’m thinking that won’t happen now.

                        The good thing is there was no new cancer on the scan. The one spot I do have has grown a little but I think that is not unusual.

                        Hang in there I’m sure they can fix us!

                        Nancy

                        Roxy1453
                        Participant
                          My colitis started 2 days before my second Ipi treatment. I was on steroids for three weeks. I took the last one yesterday. I had a PET scan today and was to have my 3 treatment. The scan showed my colitis wasn’t gone so I didn’t get to have the next treatment. I’m waiting to hear from my Dr on what to do. We weren’t for sure it was back until I got home and the diarrhea started again. I am scheduled to go in Thurs for my treatment. But I’m thinking that won’t happen now.

                          The good thing is there was no new cancer on the scan. The one spot I do have has grown a little but I think that is not unusual.

                          Hang in there I’m sure they can fix us!

                          Nancy

                          Roxy1453
                          Participant
                            My colitis started 2 days before my second Ipi treatment. I was on steroids for three weeks. I took the last one yesterday. I had a PET scan today and was to have my 3 treatment. The scan showed my colitis wasn’t gone so I didn’t get to have the next treatment. I’m waiting to hear from my Dr on what to do. We weren’t for sure it was back until I got home and the diarrhea started again. I am scheduled to go in Thurs for my treatment. But I’m thinking that won’t happen now.

                            The good thing is there was no new cancer on the scan. The one spot I do have has grown a little but I think that is not unusual.

                            Hang in there I’m sure they can fix us!

                            Nancy

                            Roxy1453
                            Participant
                              My colitis started 2 days before my second Ipi treatment. I was on steroids for three weeks. I took the last one yesterday. I had a PET scan today and was to have my 3 treatment. The scan showed my colitis wasn’t gone so I didn’t get to have the next treatment. I’m waiting to hear from my Dr on what to do. We weren’t for sure it was back until I got home and the diarrhea started again. I am scheduled to go in Thurs for my treatment. But I’m thinking that won’t happen now.

                              The good thing is there was no new cancer on the scan. The one spot I do have has grown a little but I think that is not unusual.

                              Hang in there I’m sure they can fix us!

                              Nancy

                                lna426
                                Participant

                                  Nancy – 

                                  Please take what I'm about to say with a grain of salt…

                                  I'm not trying to play doctor, but if your liver, thyroid, and blood work are normal I would try and have your next treatment. My colitis didn't get better or worse as I continued with my treatments. I spoke to my doctor about it because I was concerned that the colitis may be damaging my intestines and have been told that people live with colitis for years and that it's OK from a safety stand point and will one day subside.

                                  Granted, every patient is different, but if you can have you treatment I say go for it! The side effects will come and go, and as we're finding out this drug takes us on a roller coaster ride with them.

                                  Congrats on the scan! What your scan showed is not normal. This drug will latch on to anything it thinks is cancer and blow it up like a balloon (it's the inflammatory nature of the t-cells attacking). I'm having my first post-treatment exam next week and am curious to see what this drug did. I was also told that the first scans can show some funky stuff so I'm expecting the worst and hoping for the best.

                                  Stay strong 🙂

                                  Lauren

                                  lna426
                                  Participant

                                    Nancy – 

                                    Please take what I'm about to say with a grain of salt…

                                    I'm not trying to play doctor, but if your liver, thyroid, and blood work are normal I would try and have your next treatment. My colitis didn't get better or worse as I continued with my treatments. I spoke to my doctor about it because I was concerned that the colitis may be damaging my intestines and have been told that people live with colitis for years and that it's OK from a safety stand point and will one day subside.

                                    Granted, every patient is different, but if you can have you treatment I say go for it! The side effects will come and go, and as we're finding out this drug takes us on a roller coaster ride with them.

                                    Congrats on the scan! What your scan showed is not normal. This drug will latch on to anything it thinks is cancer and blow it up like a balloon (it's the inflammatory nature of the t-cells attacking). I'm having my first post-treatment exam next week and am curious to see what this drug did. I was also told that the first scans can show some funky stuff so I'm expecting the worst and hoping for the best.

                                    Stay strong 🙂

                                    Lauren

                                    lna426
                                    Participant

                                      Nancy – 

                                      Please take what I'm about to say with a grain of salt…

                                      I'm not trying to play doctor, but if your liver, thyroid, and blood work are normal I would try and have your next treatment. My colitis didn't get better or worse as I continued with my treatments. I spoke to my doctor about it because I was concerned that the colitis may be damaging my intestines and have been told that people live with colitis for years and that it's OK from a safety stand point and will one day subside.

                                      Granted, every patient is different, but if you can have you treatment I say go for it! The side effects will come and go, and as we're finding out this drug takes us on a roller coaster ride with them.

                                      Congrats on the scan! What your scan showed is not normal. This drug will latch on to anything it thinks is cancer and blow it up like a balloon (it's the inflammatory nature of the t-cells attacking). I'm having my first post-treatment exam next week and am curious to see what this drug did. I was also told that the first scans can show some funky stuff so I'm expecting the worst and hoping for the best.

                                      Stay strong 🙂

                                      Lauren

                                    Roxy1453
                                    Participant
                                      My colitis started 2 days before my second Ipi treatment. I was on steroids for three weeks. I took the last one yesterday. I had a PET scan today and was to have my 3 treatment. The scan showed my colitis wasn’t gone so I didn’t get to have the next treatment. I’m waiting to hear from my Dr on what to do. We weren’t for sure it was back until I got home and the diarrhea started again. I am scheduled to go in Thurs for my treatment. But I’m thinking that won’t happen now.

                                      The good thing is there was no new cancer on the scan. The one spot I do have has grown a little but I think that is not unusual.

                                      Hang in there I’m sure they can fix us!

                                      Nancy

                                      audgator
                                      Participant

                                        I guess that makes my rash seem not so bad though its driving me nuts. Someone opined that he thinks that means the med is working. Sure hope so! I've had no other side effects. Best wishes.

                                        audgator
                                        Participant

                                          I guess that makes my rash seem not so bad though its driving me nuts. Someone opined that he thinks that means the med is working. Sure hope so! I've had no other side effects. Best wishes.

                                            Roxy1453
                                            Participant
                                              I’ve got rash and itching too. I asked my Dr if it meant it was working and he said there was no way to know. That having side effects didn’t make any difference.
                                              Roxy1453
                                              Participant
                                                I’ve got rash and itching too. I asked my Dr if it meant it was working and he said there was no way to know. That having side effects didn’t make any difference.
                                                Roxy1453
                                                Participant
                                                  I’ve got rash and itching too. I asked my Dr if it meant it was working and he said there was no way to know. That having side effects didn’t make any difference.
                                                  lna426
                                                  Participant

                                                    From how my doctor expalined it – having side effects means that  your immune system is responding to the drug, which is a good thing. So – as annoying as the rash (and in my case, colitis) is, it's a sign that our bodies are taking to the drug.

                                                    lna426
                                                    Participant

                                                      From how my doctor expalined it – having side effects means that  your immune system is responding to the drug, which is a good thing. So – as annoying as the rash (and in my case, colitis) is, it's a sign that our bodies are taking to the drug.

                                                      lna426
                                                      Participant

                                                        From how my doctor expalined it – having side effects means that  your immune system is responding to the drug, which is a good thing. So – as annoying as the rash (and in my case, colitis) is, it's a sign that our bodies are taking to the drug.

                                                      audgator
                                                      Participant

                                                        I guess that makes my rash seem not so bad though its driving me nuts. Someone opined that he thinks that means the med is working. Sure hope so! I've had no other side effects. Best wishes.

                                                        mzeigler
                                                        Participant

                                                          Hang in there.  The problem is caused by your immune system being ramped up.  Hopefully this also means it is starting to attack the melanoma cells.

                                                          Mike

                                                          mzeigler
                                                          Participant

                                                            Hang in there.  The problem is caused by your immune system being ramped up.  Hopefully this also means it is starting to attack the melanoma cells.

                                                            Mike

                                                            mzeigler
                                                            Participant

                                                              Hang in there.  The problem is caused by your immune system being ramped up.  Hopefully this also means it is starting to attack the melanoma cells.

                                                              Mike

                                                              Rona
                                                              Participant

                                                                This really shows me that every ONC is different. My ONC stressed the importance of informing her of Colitis. She said it was a deal breaker for me. If I did develope colitis I would be put on steroids and taken off the Yervoy. 

                                                                Rona

                                                                Rona
                                                                Participant

                                                                  This really shows me that every ONC is different. My ONC stressed the importance of informing her of Colitis. She said it was a deal breaker for me. If I did develope colitis I would be put on steroids and taken off the Yervoy. 

                                                                  Rona

                                                                  Rona
                                                                  Participant

                                                                    This really shows me that every ONC is different. My ONC stressed the importance of informing her of Colitis. She said it was a deal breaker for me. If I did develope colitis I would be put on steroids and taken off the Yervoy. 

                                                                    Rona

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