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2nd Yervoy dose side effects

Forums General Melanoma Community 2nd Yervoy dose side effects

  • Post
    bruski1959
    Participant

      Jackie had her 1st two Yervoy dosages on 3 week schedule, but started having intestinal side effects 10 days ago. For the first few days Immodium and clear liquids/bland diet seemed to be tolerable. Then nausea kicked in, and Jackie started dehydrating rapidly. A trip to the ER was necessary to rehdryate Jackie with IV fludis and anti-nausea meds via her port. Also, her potassium level was low, so she had some IV potassium. Got her stabilized and back home 5 hours later. Then she was put on high dose steroids to combat the now more frequent intestinal side effects.

      Jackie had her 1st two Yervoy dosages on 3 week schedule, but started having intestinal side effects 10 days ago. For the first few days Immodium and clear liquids/bland diet seemed to be tolerable. Then nausea kicked in, and Jackie started dehydrating rapidly. A trip to the ER was necessary to rehdryate Jackie with IV fludis and anti-nausea meds via her port. Also, her potassium level was low, so she had some IV potassium. Got her stabilized and back home 5 hours later. Then she was put on high dose steroids to combat the now more frequent intestinal side effects. Jackie has had trouble resting and has had some confusion too. She was advised to take Benadryl in addition to strong sleep aid to help her rest. The Yervoy intestinal side effects subsided, but the side effects of the steroids have been troubling. Tomorrow at Jackie's oncology appointment we expect the steroids to start to be tapered off.

      On another note, a friend of ours daughter has taken two Yervoy doses, and had to discontinue the Yervoy due to the side effects, and has remained on high dose steroids and bland diet. But the Yervoy has stimulated her immune system enough to shrink the melanoma tumors in her liver.

      Not sure what the plan is yet, but for now Jackie's 3rd Yervoy dose originally scheduled for March 16th has been postponed. Will see what the oncologist recommends and what Jackie wants to do. She hasn't been herself at all these last 10 days, and I think it would be hard for her to make any decisions tomorrow. I think we will need to let her taper off the steroids a bit, get caught up on some rest, do her weekly blood tests, and take it from there.

      We finally got the Explanation of Beneifts for the first Yervoy treatment. The charge was $36,000, the negotiated rate was a little over $22,000. Since Jackie has already met her deductible and 2012 annual maximum out of pocket, our cost was $0!

      Appreciate any feedback anybody has on their experiences with Yervoy side effects, steroids side effects, stopping Yervoy treatment after 2 doses, and continuing on with 3rd Yervoy treatment.

      These last 10 days have been challenging, to say the least.

      Thanks,
      Bruce and Jacie

    Viewing 11 reply threads
    • Replies
        WendyPam
        Participant

          Hi Bruce and Jackie,

          My Mother is on a reinduction of Yervoy and we are exactly in the same place as you after 2 infusions.  We had a lot of issues with diarrehea and my Mom is now on Prednisone and Nexium. The nausea has been a major issue for us. We are scheduled for infusion #3 this Tuesday. However that will definitly not be happening. I did take my Mom to our Dr last week and he did put her on an IV for hydration, potassium and  anti-nausea. We left with a 7 day patch that worked great the first time, but know doesn't seem to be helping much.

          I did speak with a melanoma Dr today in New York that is not our Dr, but a leading expert on Yervoy. He told me my Mother must continue on Prednisone and to put infusion #3 on hold. He said she might not need 3 and 4. I understand what you are saying by Jackie not being herself. The steriod are hard on a person. My Mother is depressed and miserable on them. Immodium is hardly helping my Mom. The Dr that I spoke with today told me the fact of the diarrehea the immune system is being stimulated some what, right.

          Bruce, I hope that maybe 2 treatments did the trick for Jackie, I wish you the best of luck. Have you considered looking at changing over to an Anti-pd1 trial. We are going to talk to our Dr about this. Yale and Sloan are doing a trial of both Yervoy and Anti-pd1 together so moving onto an Anti-pd1 trial in some ways would be like the trial. However, like everything I know that they have a wash period before you can move on. Something to think about. Anti-pd1 they say is so much less toxic.

          Best of luck to you both!

           

          Wendy

          WendyPam
          Participant

            Hi Bruce and Jackie,

            My Mother is on a reinduction of Yervoy and we are exactly in the same place as you after 2 infusions.  We had a lot of issues with diarrehea and my Mom is now on Prednisone and Nexium. The nausea has been a major issue for us. We are scheduled for infusion #3 this Tuesday. However that will definitly not be happening. I did take my Mom to our Dr last week and he did put her on an IV for hydration, potassium and  anti-nausea. We left with a 7 day patch that worked great the first time, but know doesn't seem to be helping much.

            I did speak with a melanoma Dr today in New York that is not our Dr, but a leading expert on Yervoy. He told me my Mother must continue on Prednisone and to put infusion #3 on hold. He said she might not need 3 and 4. I understand what you are saying by Jackie not being herself. The steriod are hard on a person. My Mother is depressed and miserable on them. Immodium is hardly helping my Mom. The Dr that I spoke with today told me the fact of the diarrehea the immune system is being stimulated some what, right.

            Bruce, I hope that maybe 2 treatments did the trick for Jackie, I wish you the best of luck. Have you considered looking at changing over to an Anti-pd1 trial. We are going to talk to our Dr about this. Yale and Sloan are doing a trial of both Yervoy and Anti-pd1 together so moving onto an Anti-pd1 trial in some ways would be like the trial. However, like everything I know that they have a wash period before you can move on. Something to think about. Anti-pd1 they say is so much less toxic.

            Best of luck to you both!

             

            Wendy

              bruski1959
              Participant

                Hi WendyPam,

                Jackie had a good visit at the oncologist this morning. Lungs were good, blood pressure, pulse, temperature all good too. Didn't have the prednisone or heavy sleep aid or benadryl yesterday. Jackie didn't have the confusion or concentration issues today, but also didn't rest well last night. She will taper off the steroids and heavy sleep aid, and remove the benadryl. Will transition back to normal diet. Third Yervory dose being ordered for Friday or Saturday infusion, whatever can be worked out.

                Jackie has been stage 4 since November, and is not really eligible for most treatment trials I have looked at as she has other underlying health issues such as a rare lung disease, and an indolent islet cell cancer on the head of her pancreas.

                Seems like the prednisone put the brakes on the Yervoy enough so that she wasn't having the intestinal side effects or nausea since Wednesday. Hopefully as she tapers off the steroids, sleep aid, and stops the benadryl, she will continue to improve on the confusion and concentration.

                The way that Jackie's oncologist described some of the Yervoy side effects is like host vs graft disease in transplant patients. All the places where epithelial cells are located, which many of these are where melanoma spreads to, are reacting to the Yervoy, the immune system is being stimulated to have the white cells attack some of the bodies own cells. Such as skin, lining of the intestines, lining of the lungs, the liver, etc. So yes, many of the Yervoy side effects are in essence a sign that the Yervoy is doing its job.

                Thanks,
                Bruce

                bruski1959
                Participant

                  Hi WendyPam,

                  Jackie had a good visit at the oncologist this morning. Lungs were good, blood pressure, pulse, temperature all good too. Didn't have the prednisone or heavy sleep aid or benadryl yesterday. Jackie didn't have the confusion or concentration issues today, but also didn't rest well last night. She will taper off the steroids and heavy sleep aid, and remove the benadryl. Will transition back to normal diet. Third Yervory dose being ordered for Friday or Saturday infusion, whatever can be worked out.

                  Jackie has been stage 4 since November, and is not really eligible for most treatment trials I have looked at as she has other underlying health issues such as a rare lung disease, and an indolent islet cell cancer on the head of her pancreas.

                  Seems like the prednisone put the brakes on the Yervoy enough so that she wasn't having the intestinal side effects or nausea since Wednesday. Hopefully as she tapers off the steroids, sleep aid, and stops the benadryl, she will continue to improve on the confusion and concentration.

                  The way that Jackie's oncologist described some of the Yervoy side effects is like host vs graft disease in transplant patients. All the places where epithelial cells are located, which many of these are where melanoma spreads to, are reacting to the Yervoy, the immune system is being stimulated to have the white cells attack some of the bodies own cells. Such as skin, lining of the intestines, lining of the lungs, the liver, etc. So yes, many of the Yervoy side effects are in essence a sign that the Yervoy is doing its job.

                  Thanks,
                  Bruce

                  bruski1959
                  Participant

                    Hi WendyPam,

                    Jackie had a good visit at the oncologist this morning. Lungs were good, blood pressure, pulse, temperature all good too. Didn't have the prednisone or heavy sleep aid or benadryl yesterday. Jackie didn't have the confusion or concentration issues today, but also didn't rest well last night. She will taper off the steroids and heavy sleep aid, and remove the benadryl. Will transition back to normal diet. Third Yervory dose being ordered for Friday or Saturday infusion, whatever can be worked out.

                    Jackie has been stage 4 since November, and is not really eligible for most treatment trials I have looked at as she has other underlying health issues such as a rare lung disease, and an indolent islet cell cancer on the head of her pancreas.

                    Seems like the prednisone put the brakes on the Yervoy enough so that she wasn't having the intestinal side effects or nausea since Wednesday. Hopefully as she tapers off the steroids, sleep aid, and stops the benadryl, she will continue to improve on the confusion and concentration.

                    The way that Jackie's oncologist described some of the Yervoy side effects is like host vs graft disease in transplant patients. All the places where epithelial cells are located, which many of these are where melanoma spreads to, are reacting to the Yervoy, the immune system is being stimulated to have the white cells attack some of the bodies own cells. Such as skin, lining of the intestines, lining of the lungs, the liver, etc. So yes, many of the Yervoy side effects are in essence a sign that the Yervoy is doing its job.

                    Thanks,
                    Bruce

                  WendyPam
                  Participant

                    Hi Bruce and Jackie,

                    My Mother is on a reinduction of Yervoy and we are exactly in the same place as you after 2 infusions.  We had a lot of issues with diarrehea and my Mom is now on Prednisone and Nexium. The nausea has been a major issue for us. We are scheduled for infusion #3 this Tuesday. However that will definitly not be happening. I did take my Mom to our Dr last week and he did put her on an IV for hydration, potassium and  anti-nausea. We left with a 7 day patch that worked great the first time, but know doesn't seem to be helping much.

                    I did speak with a melanoma Dr today in New York that is not our Dr, but a leading expert on Yervoy. He told me my Mother must continue on Prednisone and to put infusion #3 on hold. He said she might not need 3 and 4. I understand what you are saying by Jackie not being herself. The steriod are hard on a person. My Mother is depressed and miserable on them. Immodium is hardly helping my Mom. The Dr that I spoke with today told me the fact of the diarrehea the immune system is being stimulated some what, right.

                    Bruce, I hope that maybe 2 treatments did the trick for Jackie, I wish you the best of luck. Have you considered looking at changing over to an Anti-pd1 trial. We are going to talk to our Dr about this. Yale and Sloan are doing a trial of both Yervoy and Anti-pd1 together so moving onto an Anti-pd1 trial in some ways would be like the trial. However, like everything I know that they have a wash period before you can move on. Something to think about. Anti-pd1 they say is so much less toxic.

                    Best of luck to you both!

                     

                    Wendy

                    Mandi0280
                    Participant

                      Hi…my husband had the same reaction after his second dose of Yervoy. He was having severe diarrhea and some vomiting that would not quit along with body aches and fever. On about day 3 of this I took him to the ER where they admitted him and kept him there for 6 days. His potassium got very low and they were giving him that IV along with fluids for dehydration. They also wanted to do a colonoscopy and endo to check for colitis since this is a common side effect of Yervoy. The test came back positive for colitis. He was also started on a steroid and the Dr is tapering him off of these. I didn't really see any steroid side effects as he was already so sick he couldn't even get out of the bed most days.The biggest side effect of the steroid that his Dr told us about would be weight gain. Althought I wasn't worried about that because he had lost about 25 pounds from being so sick. I'm guessing the steroids are working since most side effects are gone…he is still have nausea and some stomach pain but no diarrhea. The Dr called after we were home from the hospital and said that he could not continue the Veroy due to the colitis being a severe 3 out of 5. So 2 doses is all he was able to recieve. The Dr has offered to start the interferon treatment in a couple of weeks and now my husband has to make a decision about that.

                       My husband is a stage 3b…what stage is Jackie? I am assuming that she is stage 4 unless she was taking Yervoy on a trial like my husband was.  I can't really give an opinion about stopping since we were not given a choice to continue. Although, if he had not had the colitis i probably would have wanted him to continue due to the high risk of the melanoma coming back. I don't know if Jackie had any colitis since u didn't metion she was tested for it. Colitis can be a very severe side effect and Dr says if you have it during one treatment then chances are you will just have it again after the next one.  Hopefully after the next visit to the oncologist Jackie's doctor will guide you guys in the right direction as far as continuing treatment. All of these drugs can have such severe side effects and you can't stand to see the ppl you love going through it!

                       

                      Good Luck with decisions,

                      Mandi

                        bruski1959
                        Participant

                          Hi Mandi020,

                          Jackie has not had colitis that we are aware of, and Jackie is aware of the symptoms of colitis, since she had an ex-husband who eventually died from the side effects of colitis, and my sister has had bouts of colitis as well. She has not been tested for colitis, but I am sure she will be tested if deemed necessary. She has a very good GI doctor in town that could take care of her in that case.

                          Jackie hasn't had any massive weight loss or weight gain. She lost a few pounds from the days she was having the intestinal side effects and nausea, but has stabilized since that stopped. Jackie is stage 4 since November with liver tumors confirmed as melanoma, lung tumors observed on PET scan, and melanoma recurrance in lymph nodes observed on PET scan.

                          Decisions sure can be hard to wrestle with. Praying for wisdom and discrenment about decisions to be made.

                          Thanks,
                          Bruce

                          bruski1959
                          Participant

                            Hi Mandi020,

                            Jackie has not had colitis that we are aware of, and Jackie is aware of the symptoms of colitis, since she had an ex-husband who eventually died from the side effects of colitis, and my sister has had bouts of colitis as well. She has not been tested for colitis, but I am sure she will be tested if deemed necessary. She has a very good GI doctor in town that could take care of her in that case.

                            Jackie hasn't had any massive weight loss or weight gain. She lost a few pounds from the days she was having the intestinal side effects and nausea, but has stabilized since that stopped. Jackie is stage 4 since November with liver tumors confirmed as melanoma, lung tumors observed on PET scan, and melanoma recurrance in lymph nodes observed on PET scan.

                            Decisions sure can be hard to wrestle with. Praying for wisdom and discrenment about decisions to be made.

                            Thanks,
                            Bruce

                            bruski1959
                            Participant

                              Hi Mandi020,

                              Jackie has not had colitis that we are aware of, and Jackie is aware of the symptoms of colitis, since she had an ex-husband who eventually died from the side effects of colitis, and my sister has had bouts of colitis as well. She has not been tested for colitis, but I am sure she will be tested if deemed necessary. She has a very good GI doctor in town that could take care of her in that case.

                              Jackie hasn't had any massive weight loss or weight gain. She lost a few pounds from the days she was having the intestinal side effects and nausea, but has stabilized since that stopped. Jackie is stage 4 since November with liver tumors confirmed as melanoma, lung tumors observed on PET scan, and melanoma recurrance in lymph nodes observed on PET scan.

                              Decisions sure can be hard to wrestle with. Praying for wisdom and discrenment about decisions to be made.

                              Thanks,
                              Bruce

                            Mandi0280
                            Participant

                              Hi…my husband had the same reaction after his second dose of Yervoy. He was having severe diarrhea and some vomiting that would not quit along with body aches and fever. On about day 3 of this I took him to the ER where they admitted him and kept him there for 6 days. His potassium got very low and they were giving him that IV along with fluids for dehydration. They also wanted to do a colonoscopy and endo to check for colitis since this is a common side effect of Yervoy. The test came back positive for colitis. He was also started on a steroid and the Dr is tapering him off of these. I didn't really see any steroid side effects as he was already so sick he couldn't even get out of the bed most days.The biggest side effect of the steroid that his Dr told us about would be weight gain. Althought I wasn't worried about that because he had lost about 25 pounds from being so sick. I'm guessing the steroids are working since most side effects are gone…he is still have nausea and some stomach pain but no diarrhea. The Dr called after we were home from the hospital and said that he could not continue the Veroy due to the colitis being a severe 3 out of 5. So 2 doses is all he was able to recieve. The Dr has offered to start the interferon treatment in a couple of weeks and now my husband has to make a decision about that.

                               My husband is a stage 3b…what stage is Jackie? I am assuming that she is stage 4 unless she was taking Yervoy on a trial like my husband was.  I can't really give an opinion about stopping since we were not given a choice to continue. Although, if he had not had the colitis i probably would have wanted him to continue due to the high risk of the melanoma coming back. I don't know if Jackie had any colitis since u didn't metion she was tested for it. Colitis can be a very severe side effect and Dr says if you have it during one treatment then chances are you will just have it again after the next one.  Hopefully after the next visit to the oncologist Jackie's doctor will guide you guys in the right direction as far as continuing treatment. All of these drugs can have such severe side effects and you can't stand to see the ppl you love going through it!

                               

                              Good Luck with decisions,

                              Mandi

                              Mandi0280
                              Participant

                                Hi…my husband had the same reaction after his second dose of Yervoy. He was having severe diarrhea and some vomiting that would not quit along with body aches and fever. On about day 3 of this I took him to the ER where they admitted him and kept him there for 6 days. His potassium got very low and they were giving him that IV along with fluids for dehydration. They also wanted to do a colonoscopy and endo to check for colitis since this is a common side effect of Yervoy. The test came back positive for colitis. He was also started on a steroid and the Dr is tapering him off of these. I didn't really see any steroid side effects as he was already so sick he couldn't even get out of the bed most days.The biggest side effect of the steroid that his Dr told us about would be weight gain. Althought I wasn't worried about that because he had lost about 25 pounds from being so sick. I'm guessing the steroids are working since most side effects are gone…he is still have nausea and some stomach pain but no diarrhea. The Dr called after we were home from the hospital and said that he could not continue the Veroy due to the colitis being a severe 3 out of 5. So 2 doses is all he was able to recieve. The Dr has offered to start the interferon treatment in a couple of weeks and now my husband has to make a decision about that.

                                 My husband is a stage 3b…what stage is Jackie? I am assuming that she is stage 4 unless she was taking Yervoy on a trial like my husband was.  I can't really give an opinion about stopping since we were not given a choice to continue. Although, if he had not had the colitis i probably would have wanted him to continue due to the high risk of the melanoma coming back. I don't know if Jackie had any colitis since u didn't metion she was tested for it. Colitis can be a very severe side effect and Dr says if you have it during one treatment then chances are you will just have it again after the next one.  Hopefully after the next visit to the oncologist Jackie's doctor will guide you guys in the right direction as far as continuing treatment. All of these drugs can have such severe side effects and you can't stand to see the ppl you love going through it!

                                 

                                Good Luck with decisions,

                                Mandi

                                Roxy1453
                                Participant
                                  Hi Bruce and Jackie,

                                  I have had 2 treatments and ended up with a bad case of colitis. This has been going on since my second treatment Dec. 29. I was in the hospital Jan 2 for 3 days. I have been on steroids ever since. I am almost done and will go back next Tues. for a PET scan. If all is ok I will have my third treatment. He can not asure me I will not get colitis again. I am not looking forward to that! He did tell me it has boosted my immune system. I am stage 4 with only one spot right now behind my knee.

                                  Prayers to you both!

                                  Nancy

                                  Roxy1453
                                  Participant
                                    Hi Bruce and Jackie,

                                    I have had 2 treatments and ended up with a bad case of colitis. This has been going on since my second treatment Dec. 29. I was in the hospital Jan 2 for 3 days. I have been on steroids ever since. I am almost done and will go back next Tues. for a PET scan. If all is ok I will have my third treatment. He can not asure me I will not get colitis again. I am not looking forward to that! He did tell me it has boosted my immune system. I am stage 4 with only one spot right now behind my knee.

                                    Prayers to you both!

                                    Nancy

                                    Roxy1453
                                    Participant
                                      Hi Bruce and Jackie,

                                      I have had 2 treatments and ended up with a bad case of colitis. This has been going on since my second treatment Dec. 29. I was in the hospital Jan 2 for 3 days. I have been on steroids ever since. I am almost done and will go back next Tues. for a PET scan. If all is ok I will have my third treatment. He can not asure me I will not get colitis again. I am not looking forward to that! He did tell me it has boosted my immune system. I am stage 4 with only one spot right now behind my knee.

                                      Prayers to you both!

                                      Nancy

                                        bruski1959
                                        Participant

                                          Hi Roxy1453 (Nancy),

                                          Wow I thought that they tried to give the Yervoy in a 12-16 week timeframe from start to finish of the 4 treatments to try to maintain a Yervoy serum level. I guess everybody responds differently to treatments and has different side effects. We tried to keep Jackie out of the hospital with the side effects but finally she got to the point where nothing was staying in either end. I guess I see how things will go as Jackie tapers off of the steroids. She is normally on a low dose of steroids due to complications of her lung disease (LAM), so we are trying to get her back down to that maintenance dose by Friday. The colitis is not fun. The decsions we have to make are hard, kind of the lesser of two evils.

                                          I like your quote with the signature of Phil 4:13. That was my father-in-law's favorite bible verse! ๐Ÿ™‚

                                          Thanks,
                                          Bruce and Jackie

                                          bruski1959
                                          Participant

                                            Hi Roxy1453 (Nancy),

                                            Wow I thought that they tried to give the Yervoy in a 12-16 week timeframe from start to finish of the 4 treatments to try to maintain a Yervoy serum level. I guess everybody responds differently to treatments and has different side effects. We tried to keep Jackie out of the hospital with the side effects but finally she got to the point where nothing was staying in either end. I guess I see how things will go as Jackie tapers off of the steroids. She is normally on a low dose of steroids due to complications of her lung disease (LAM), so we are trying to get her back down to that maintenance dose by Friday. The colitis is not fun. The decsions we have to make are hard, kind of the lesser of two evils.

                                            I like your quote with the signature of Phil 4:13. That was my father-in-law's favorite bible verse! ๐Ÿ™‚

                                            Thanks,
                                            Bruce and Jackie

                                            bruski1959
                                            Participant

                                              Hi Roxy1453 (Nancy),

                                              Wow I thought that they tried to give the Yervoy in a 12-16 week timeframe from start to finish of the 4 treatments to try to maintain a Yervoy serum level. I guess everybody responds differently to treatments and has different side effects. We tried to keep Jackie out of the hospital with the side effects but finally she got to the point where nothing was staying in either end. I guess I see how things will go as Jackie tapers off of the steroids. She is normally on a low dose of steroids due to complications of her lung disease (LAM), so we are trying to get her back down to that maintenance dose by Friday. The colitis is not fun. The decsions we have to make are hard, kind of the lesser of two evils.

                                              I like your quote with the signature of Phil 4:13. That was my father-in-law's favorite bible verse! ๐Ÿ™‚

                                              Thanks,
                                              Bruce and Jackie

                                            Kurenai
                                            Participant
                                              I just had my second treatment only side effect I’ve had so far is some itching. Diarrhea nothing abnormal as I have no gallbladder so we used to it. Doc said normally if your going to get side effects it’s after the first dose.
                                              Kurenai
                                              Participant
                                                I just had my second treatment only side effect I’ve had so far is some itching. Diarrhea nothing abnormal as I have no gallbladder so we used to it. Doc said normally if your going to get side effects it’s after the first dose.
                                                Kurenai
                                                Participant
                                                  I just had my second treatment only side effect I’ve had so far is some itching. Diarrhea nothing abnormal as I have no gallbladder so we used to it. Doc said normally if your going to get side effects it’s after the first dose.
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