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YERVOY SIDE EFFECTS- NOW AND LATER

Forums General Melanoma Community YERVOY SIDE EFFECTS- NOW AND LATER

  • Post
    j.m.l.
    Participant

      I'll be starting on Yervoy next week. I know everyone is different but could you give me some idea of what to expect right after dose 1 and also later on. I am worried about the serious stomach problems.

      I'll be starting on Yervoy next week. I know everyone is different but could you give me some idea of what to expect right after dose 1 and also later on. I am worried about the serious stomach problems.

    Viewing 7 reply threads
    • Replies
        Lisa13
        Participant

          It's been a week after my second dose of ipi and I've yet to have any symptoms.  Not getting any symptoms is making me wonder if I'm even getting an immune response.

          Lisa13
          Participant

            It's been a week after my second dose of ipi and I've yet to have any symptoms.  Not getting any symptoms is making me wonder if I'm even getting an immune response.

              mygirlmaddy
              Participant

                My husband took Ipi, first as a trial (we are fairly confident he received the placebo) and then as compassionate use.  He did not have any of the more common side effects, but did end up in the hospital with a severe headache.  After some testing, it was determined that his pituitary gland had swollen (medical term is Hypofecitis).  It left him with permanent damage and he is required to take steroids, thyroid medication and testosterone forever.  This excludes him from almost all of the available clinical trials.  Unfortunately for us, his disease is beginning to progress, so the point is moot, but I would advise anyone taking ipi to tell their doctor of ANYTHING that is not normal no matter how small.  We waited too long to seek help for the headache and the damage was done.  That said, be excited that you have this opportunity and go into it with a positive attitude.  This is a gift that many people did not have a chance to receive.  Best wishes to you.

                mygirlmaddy
                Participant

                  My husband took Ipi, first as a trial (we are fairly confident he received the placebo) and then as compassionate use.  He did not have any of the more common side effects, but did end up in the hospital with a severe headache.  After some testing, it was determined that his pituitary gland had swollen (medical term is Hypofecitis).  It left him with permanent damage and he is required to take steroids, thyroid medication and testosterone forever.  This excludes him from almost all of the available clinical trials.  Unfortunately for us, his disease is beginning to progress, so the point is moot, but I would advise anyone taking ipi to tell their doctor of ANYTHING that is not normal no matter how small.  We waited too long to seek help for the headache and the damage was done.  That said, be excited that you have this opportunity and go into it with a positive attitude.  This is a gift that many people did not have a chance to receive.  Best wishes to you.

                  j.m.l.
                  Participant

                    thank you for your response. Given the fact that you suffered severe damage and so have other people, do you think the risk is worth it. I start ipi next week and am very scared. My mela. is not operable this time. I had 4 other operations and dr. said I really need to do something systemic. Would you agree even though there are dangers in the drugs. Jml

                    j.m.l.
                    Participant

                      thank you for your response. Given the fact that you suffered severe damage and so have other people, do you think the risk is worth it. I start ipi next week and am very scared. My mela. is not operable this time. I had 4 other operations and dr. said I really need to do something systemic. Would you agree even though there are dangers in the drugs. Jml

                      Lisa13
                      Participant

                        There are dangers to any drug, but the majority of severe symptoms occur in a small percentage of people.   There arn't alot of options when it comes to treatment, so you either do the ipi or try something more toxic like IL-2 or enter into clinical trials.  The risk is very much worth it in my opinion, especially if it buys time or eliminates your cancer.

                        I started ipi almost 5 weeks ago and havn't experienced anything.  You have to go into treatment hoping that it's going to work for your melanoma rather than worry about side effects which may or may not happen.  Besides, even if you get side effects, just notify your Dr and they'll be treated right away.

                        Lisa13
                        Participant

                          There are dangers to any drug, but the majority of severe symptoms occur in a small percentage of people.   There arn't alot of options when it comes to treatment, so you either do the ipi or try something more toxic like IL-2 or enter into clinical trials.  The risk is very much worth it in my opinion, especially if it buys time or eliminates your cancer.

                          I started ipi almost 5 weeks ago and havn't experienced anything.  You have to go into treatment hoping that it's going to work for your melanoma rather than worry about side effects which may or may not happen.  Besides, even if you get side effects, just notify your Dr and they'll be treated right away.

                          Vermont_Donna
                          Participant

                            Hi,

                            I participated in an Ipi clinical trial, in Dec 2010 to Feb 2011…..3mg/kg…really relatively few side effects…some nausea, some fatigue..I am a complete responder…read my profile for more details….if you do Ipi, report any symptoms to your oncologists immediately!

                            Vermont_Donna, stage 3a, NED x 6 months now

                            Vermont_Donna
                            Participant

                              Hi,

                              I participated in an Ipi clinical trial, in Dec 2010 to Feb 2011…..3mg/kg…really relatively few side effects…some nausea, some fatigue..I am a complete responder…read my profile for more details….if you do Ipi, report any symptoms to your oncologists immediately!

                              Vermont_Donna, stage 3a, NED x 6 months now

                              mygirlmaddy
                              Participant

                                It's definitely worth the risk.  You have a chance to be cured.  All of the side effects can be managed if you report them immediately to your doctor. 

                                mygirlmaddy
                                Participant

                                  It's definitely worth the risk.  You have a chance to be cured.  All of the side effects can be managed if you report them immediately to your doctor. 

                                  Saturn
                                  Participant

                                    HI

                                            After hearing that I am very scared of the drug.  Have third stage, had some surgeries on my ear and

                                    nodes and neck.  Interfueron treatment  was interrupted to take remove mass on my neck.   Then the surgeron said I should have radiation which is now.  He said after he would recommend Yervoy.

                                         But so far scans are negative. My oncologist said I will have a scan after radiation.  I feel if is negative I don't know if I want to take that drug because i suffered immensely with interfueron and  am 70

                                         Sam

                                    Saturn
                                    Participant

                                      HI

                                              After hearing that I am very scared of the drug.  Have third stage, had some surgeries on my ear and

                                      nodes and neck.  Interfueron treatment  was interrupted to take remove mass on my neck.   Then the surgeron said I should have radiation which is now.  He said after he would recommend Yervoy.

                                           But so far scans are negative. My oncologist said I will have a scan after radiation.  I feel if is negative I don't know if I want to take that drug because i suffered immensely with interfueron and  am 70

                                           Sam

                                      Saturn
                                      Participant

                                        HI

                                                After hearing that I am very scared of the drug.  Have third stage, had some surgeries on my ear and

                                        nodes and neck.  Interfueron treatment  was interrupted to take remove mass on my neck.   Then the surgeron said I should have radiation which is now.  He said after he would recommend Yervoy.

                                             But so far scans are negative. My oncologist said I will have a scan after radiation.  I feel if is negative I don't know if I want to take that drug because i suffered immensely with interfueron and  am 70

                                             Sam

                                      Ashykay
                                      Participant

                                        Hi there!

                                        My Mum is about to start Yervoy and I have the same concerns. The immunologist was very blatent to Mum when she asked about side effects – he gave her a brochure containing all the details of the drug including any minor and major complications and side effects. He also said that those who had serious complications as a result of the side effects were those who felt someone was wrong and "sat on it", and didn't inform their doctors abotu it immediately. He said that Mum needs to speak to him as SOON as she feels something is different as a result of the drug.

                                        I completely agree that there are many side effects with all types of drugs..but Yervoy being so important to a lot of people, I think all you can do is go for it and manage the side effects smartly by informing your doctor as soon as you suspect something isn't quite right.

                                        All the best – please keep in touch with your progress!

                                        Ashley

                                        Ashykay
                                        Participant

                                          Hi there!

                                          My Mum is about to start Yervoy and I have the same concerns. The immunologist was very blatent to Mum when she asked about side effects – he gave her a brochure containing all the details of the drug including any minor and major complications and side effects. He also said that those who had serious complications as a result of the side effects were those who felt someone was wrong and "sat on it", and didn't inform their doctors abotu it immediately. He said that Mum needs to speak to him as SOON as she feels something is different as a result of the drug.

                                          I completely agree that there are many side effects with all types of drugs..but Yervoy being so important to a lot of people, I think all you can do is go for it and manage the side effects smartly by informing your doctor as soon as you suspect something isn't quite right.

                                          All the best – please keep in touch with your progress!

                                          Ashley

                                          Jim M.
                                          Participant

                                            I was on Yervoy from 3/08 to10/08. It was a clinical trial and I received a dose of 10mg/kg. I'm sure there are more side effects at this dose than at 3mg/kg which you will probably receive. I didn't start to have any side effects until 3 weeks after the first infusion. Then over time I had a mild rash that didn't itch, mild fatigue, assorted small pains in the stomach, sweats. Once I had chest pain that I went to the ER for. Before the 5th infusion I had major headaches. An MRI revealed hypophysitis (swelling of the pituitary gland). I'm on a steroid for that.

                                             It takes awhile for Yervoy to build up your immune system so you may not have side effects right away. Others have had early side effects. I wrote down all my side effects and gave them to my oncologist. I thought I was going to develop diarrhea twice and I contacted my onc. immediately. I had the prescriptions on hand but never had to use them. Your doctor should have a similar protocol where you can reach him at any time or someone else on your treatment team.

                                             God Bless,

                                             Jim M.

                                            Jim M.
                                            Participant

                                              I was on Yervoy from 3/08 to10/08. It was a clinical trial and I received a dose of 10mg/kg. I'm sure there are more side effects at this dose than at 3mg/kg which you will probably receive. I didn't start to have any side effects until 3 weeks after the first infusion. Then over time I had a mild rash that didn't itch, mild fatigue, assorted small pains in the stomach, sweats. Once I had chest pain that I went to the ER for. Before the 5th infusion I had major headaches. An MRI revealed hypophysitis (swelling of the pituitary gland). I'm on a steroid for that.

                                               It takes awhile for Yervoy to build up your immune system so you may not have side effects right away. Others have had early side effects. I wrote down all my side effects and gave them to my oncologist. I thought I was going to develop diarrhea twice and I contacted my onc. immediately. I had the prescriptions on hand but never had to use them. Your doctor should have a similar protocol where you can reach him at any time or someone else on your treatment team.

                                               God Bless,

                                               Jim M.

                                              trojansurvivor
                                              Participant

                                                I was originally diagnosed with stage 4 about 8.5 years ago, with tumors in my liver, spine, liver and s;leen.  I went through biochemo and miraculously went into remission for a year, but had a maintenance program for a year of high dose interleuiin-2 once a month. After about a year in remission, I started to get tumors in my soft tissue in my groin and leg.  After about 4 or 5 surgeries to remove the tumors, over the next year, I had six tumors in my thigh and groin area appear.   I was one of the early ipi trial participants over 6 years ago.  I had 4 infusions 6.5 years ago and then another 4 two years later.  My side effects were primarily a rash on my abdomen and the back of my legs, and some fatique. 

                                                4 of my tumors shrank fairly quickly, and then disappeared within a year but one started growing a year after my second infusion and had to be surgically removed.  My last tumor then disappeared shortly after my surgery, and I have had clear scans for the last 3.5 years. I have also not had any new tumors appear since I started the IPI trial.

                                                IPI has saved my life !!!!

                                                trojansurvivor
                                                Participant

                                                  I was originally diagnosed with stage 4 about 8.5 years ago, with tumors in my liver, spine, liver and s;leen.  I went through biochemo and miraculously went into remission for a year, but had a maintenance program for a year of high dose interleuiin-2 once a month. After about a year in remission, I started to get tumors in my soft tissue in my groin and leg.  After about 4 or 5 surgeries to remove the tumors, over the next year, I had six tumors in my thigh and groin area appear.   I was one of the early ipi trial participants over 6 years ago.  I had 4 infusions 6.5 years ago and then another 4 two years later.  My side effects were primarily a rash on my abdomen and the back of my legs, and some fatique. 

                                                  4 of my tumors shrank fairly quickly, and then disappeared within a year but one started growing a year after my second infusion and had to be surgically removed.  My last tumor then disappeared shortly after my surgery, and I have had clear scans for the last 3.5 years. I have also not had any new tumors appear since I started the IPI trial.

                                                  IPI has saved my life !!!!

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