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How long on Yervoy before you experienced side effects?

Forums General Melanoma Community How long on Yervoy before you experienced side effects?

  • Post
    Jewel
    Participant

      Hi,

      My husband started Yervoy on Wed 11/19. Can you please tell me how long it took for you to experience side effects? Were they able to be contolled by medication? So far my husband feels fine. Thank you so much

      Jewel

    Viewing 23 reply threads
    • Replies
        arthurjedi007
        Participant

          My first side affect was after the 2nd dose. A little bit of rash. A little stomach churning that would come and go. A little fever (101) that would come and go. I also felt like I had a lot more energy. Pretty much same after 3rd dose. After 4th dose just the rash was still happening which was minor. They didn't need to do any medication or anything. So for me it was really a no big deal treatment although I read lots about it before and was sooo scared. Found out later most of what I read was from the trials where they got like triple the dosage and lots more doses and things. So yeah everyone is different but for me it was way easy. They told me to report any side affect that lasts more than 24 hours but you might want to report everything right away especially stomach pains or throwing up. Even at the FDA approved dose it has been known to cause serious problems in some people.

          Artie

           

          arthurjedi007
          Participant

            My first side affect was after the 2nd dose. A little bit of rash. A little stomach churning that would come and go. A little fever (101) that would come and go. I also felt like I had a lot more energy. Pretty much same after 3rd dose. After 4th dose just the rash was still happening which was minor. They didn't need to do any medication or anything. So for me it was really a no big deal treatment although I read lots about it before and was sooo scared. Found out later most of what I read was from the trials where they got like triple the dosage and lots more doses and things. So yeah everyone is different but for me it was way easy. They told me to report any side affect that lasts more than 24 hours but you might want to report everything right away especially stomach pains or throwing up. Even at the FDA approved dose it has been known to cause serious problems in some people.

            Artie

             

              Jewel
              Participant

                Artie,

                Thank you so much for the quick responce, sadly I know Yervoy did little for you. I have been following you and Im glad you are remaining on the Keytruda….so wish my husband could have been on this instead. Best of luck to you!!!

                Jewel

                Jewel
                Participant

                  Artie,

                  Thank you so much for the quick responce, sadly I know Yervoy did little for you. I have been following you and Im glad you are remaining on the Keytruda….so wish my husband could have been on this instead. Best of luck to you!!!

                  Jewel

                  Jewel
                  Participant

                    Artie,

                    Thank you so much for the quick responce, sadly I know Yervoy did little for you. I have been following you and Im glad you are remaining on the Keytruda….so wish my husband could have been on this instead. Best of luck to you!!!

                    Jewel

                  arthurjedi007
                  Participant

                    My first side affect was after the 2nd dose. A little bit of rash. A little stomach churning that would come and go. A little fever (101) that would come and go. I also felt like I had a lot more energy. Pretty much same after 3rd dose. After 4th dose just the rash was still happening which was minor. They didn't need to do any medication or anything. So for me it was really a no big deal treatment although I read lots about it before and was sooo scared. Found out later most of what I read was from the trials where they got like triple the dosage and lots more doses and things. So yeah everyone is different but for me it was way easy. They told me to report any side affect that lasts more than 24 hours but you might want to report everything right away especially stomach pains or throwing up. Even at the FDA approved dose it has been known to cause serious problems in some people.

                    Artie

                     

                    Julie in SoCal
                    Participant

                      Hey Jewel,

                      Trust Ipi will be the cure you and your husband are looking for.

                      For me, I was basically fine after my first and second infusion.  I was a little fatigued and had a slight headache, but over all no significant problems.  After my third infusion, I had GI issues, fatigue, spike through the head-headache, "arthritis-like" pain in small joints and a rash, that my dr and I were easily able to deal with.  Now almost a year later, I don't have any lingering problems.

                      Praying this will work for you too!

                      Julie

                      Stage 3c: WLE; SNB; LND; HD-INF; GM-CSF; IPI = NED

                        Jewel
                        Participant

                          Julie,

                          Thanks so much for the responce. So glad it has made you NED!! It is stories like yours that give me hope!!!

                          Jewel

                          Jewel
                          Participant

                            Julie,

                            Thanks so much for the responce. So glad it has made you NED!! It is stories like yours that give me hope!!!

                            Jewel

                            Jewel
                            Participant

                              Julie,

                              Thanks so much for the responce. So glad it has made you NED!! It is stories like yours that give me hope!!!

                              Jewel

                            Julie in SoCal
                            Participant

                              Hey Jewel,

                              Trust Ipi will be the cure you and your husband are looking for.

                              For me, I was basically fine after my first and second infusion.  I was a little fatigued and had a slight headache, but over all no significant problems.  After my third infusion, I had GI issues, fatigue, spike through the head-headache, "arthritis-like" pain in small joints and a rash, that my dr and I were easily able to deal with.  Now almost a year later, I don't have any lingering problems.

                              Praying this will work for you too!

                              Julie

                              Stage 3c: WLE; SNB; LND; HD-INF; GM-CSF; IPI = NED

                              Julie in SoCal
                              Participant

                                Hey Jewel,

                                Trust Ipi will be the cure you and your husband are looking for.

                                For me, I was basically fine after my first and second infusion.  I was a little fatigued and had a slight headache, but over all no significant problems.  After my third infusion, I had GI issues, fatigue, spike through the head-headache, "arthritis-like" pain in small joints and a rash, that my dr and I were easily able to deal with.  Now almost a year later, I don't have any lingering problems.

                                Praying this will work for you too!

                                Julie

                                Stage 3c: WLE; SNB; LND; HD-INF; GM-CSF; IPI = NED

                                Marianne quinn
                                Participant

                                  My husband developed the rash after the second infusion and the diarrhea after the third. He was on 10 mg ipi as part of a clinical trial. His symptoms were managed with Benadryl and immodium. We modified his diet also. You can read my posts for more specifics. Good luck band it is very manageable 

                                  Marianne quinn
                                  Participant

                                    My husband developed the rash after the second infusion and the diarrhea after the third. He was on 10 mg ipi as part of a clinical trial. His symptoms were managed with Benadryl and immodium. We modified his diet also. You can read my posts for more specifics. Good luck band it is very manageable 

                                    Marianne quinn
                                    Participant

                                      My husband developed the rash after the second infusion and the diarrhea after the third. He was on 10 mg ipi as part of a clinical trial. His symptoms were managed with Benadryl and immodium. We modified his diet also. You can read my posts for more specifics. Good luck band it is very manageable 

                                        Jewel
                                        Participant

                                          When you say benadryl, do you mean pill or cream? Thank you

                                          Jewel

                                          Jewel
                                          Participant

                                            When you say benadryl, do you mean pill or cream? Thank you

                                            Jewel

                                            Jewel
                                            Participant

                                              When you say benadryl, do you mean pill or cream? Thank you

                                              Jewel

                                            RJoeyB
                                            Participant

                                              Everyone will be different, but the most common side effects have been mentioned here:  fatigue, rash and itch, diarrhea; and even so, there's no guarantee that he'll experience any of them or when, could be first dose, last dose, or never.  I had some fatigue that started more after the second dose and was cumulative, i.e. It seemed to be s little worse after each subsequent dose.  But at its worst, it wasn't ever debilitating and lasted a day or two, along with a milder sense of fatigue that was manageable.  By the end, I also had a very mild rash on my torso that didn't require any treatment.  

                                              Based on the potential for the common side-effects, we had Benadryl (pills) and Immodium (pills) on hand, but could have easily run to the store to get them if needed (I didn't).  In other threads, I've read a few recommendations to proactively have a prescription on hand for prednisone — I don't think there's anything wrong with asking your oncologist about that, but at the same time, it's something for which a prescription can easily be filled if needed.  If you're oncologist isn't accessible at certain times or days or a pharmacy is inconvenient because of distance or something, then perhaps having a prescription slip or even a filled prescription on hand just in case is probably worthwhile.

                                              Best wishes for your husband's treatment, Joe

                                               

                                              RJoeyB
                                              Participant

                                                Everyone will be different, but the most common side effects have been mentioned here:  fatigue, rash and itch, diarrhea; and even so, there's no guarantee that he'll experience any of them or when, could be first dose, last dose, or never.  I had some fatigue that started more after the second dose and was cumulative, i.e. It seemed to be s little worse after each subsequent dose.  But at its worst, it wasn't ever debilitating and lasted a day or two, along with a milder sense of fatigue that was manageable.  By the end, I also had a very mild rash on my torso that didn't require any treatment.  

                                                Based on the potential for the common side-effects, we had Benadryl (pills) and Immodium (pills) on hand, but could have easily run to the store to get them if needed (I didn't).  In other threads, I've read a few recommendations to proactively have a prescription on hand for prednisone — I don't think there's anything wrong with asking your oncologist about that, but at the same time, it's something for which a prescription can easily be filled if needed.  If you're oncologist isn't accessible at certain times or days or a pharmacy is inconvenient because of distance or something, then perhaps having a prescription slip or even a filled prescription on hand just in case is probably worthwhile.

                                                Best wishes for your husband's treatment, Joe

                                                 

                                                RJoeyB
                                                Participant

                                                  Everyone will be different, but the most common side effects have been mentioned here:  fatigue, rash and itch, diarrhea; and even so, there's no guarantee that he'll experience any of them or when, could be first dose, last dose, or never.  I had some fatigue that started more after the second dose and was cumulative, i.e. It seemed to be s little worse after each subsequent dose.  But at its worst, it wasn't ever debilitating and lasted a day or two, along with a milder sense of fatigue that was manageable.  By the end, I also had a very mild rash on my torso that didn't require any treatment.  

                                                  Based on the potential for the common side-effects, we had Benadryl (pills) and Immodium (pills) on hand, but could have easily run to the store to get them if needed (I didn't).  In other threads, I've read a few recommendations to proactively have a prescription on hand for prednisone — I don't think there's anything wrong with asking your oncologist about that, but at the same time, it's something for which a prescription can easily be filled if needed.  If you're oncologist isn't accessible at certain times or days or a pharmacy is inconvenient because of distance or something, then perhaps having a prescription slip or even a filled prescription on hand just in case is probably worthwhile.

                                                  Best wishes for your husband's treatment, Joe

                                                   

                                                    Jewel
                                                    Participant
                                                      Joe, thanks for your reply. Did you get a response from the Yervoy? Hope your doing well! Jewel
                                                      Jewel
                                                      Participant
                                                        Joe, thanks for your reply. Did you get a response from the Yervoy? Hope your doing well! Jewel
                                                        RJoeyB
                                                        Participant

                                                          It's hard to say for sure.  I had Yervoy a couple of months following a craniotomy and CyberKnife stereotactic radiation for a brain tumor, and I had IL-2 and TIL a couple of years prior to that.  Going into Yervoy, my tumor burden was very low, I had a small leg bone met that was stable and had been radiated a few years prior and a small lung met that was also relatively stable but which we eventually decided to radiate.  I've had some complications resulting from earlier metastases and treatments, but I haven't had any new metastases in the 18 months since Yervoy — whether that's the Yervoy or a combination of prior treatments and procedures, we won't ever know for sure.  

                                                           

                                                          RJoeyB
                                                          Participant

                                                            It's hard to say for sure.  I had Yervoy a couple of months following a craniotomy and CyberKnife stereotactic radiation for a brain tumor, and I had IL-2 and TIL a couple of years prior to that.  Going into Yervoy, my tumor burden was very low, I had a small leg bone met that was stable and had been radiated a few years prior and a small lung met that was also relatively stable but which we eventually decided to radiate.  I've had some complications resulting from earlier metastases and treatments, but I haven't had any new metastases in the 18 months since Yervoy — whether that's the Yervoy or a combination of prior treatments and procedures, we won't ever know for sure.  

                                                             

                                                            RJoeyB
                                                            Participant

                                                              It's hard to say for sure.  I had Yervoy a couple of months following a craniotomy and CyberKnife stereotactic radiation for a brain tumor, and I had IL-2 and TIL a couple of years prior to that.  Going into Yervoy, my tumor burden was very low, I had a small leg bone met that was stable and had been radiated a few years prior and a small lung met that was also relatively stable but which we eventually decided to radiate.  I've had some complications resulting from earlier metastases and treatments, but I haven't had any new metastases in the 18 months since Yervoy — whether that's the Yervoy or a combination of prior treatments and procedures, we won't ever know for sure.  

                                                               

                                                              Jewel
                                                              Participant

                                                                Joe,

                                                                Sorry you have had to go through so much to get where your at today. Like you said it is hard to tell which one or combo of therapies have held you stable. Congratulation on 18 months!  My husband went into this with resected disease, I can only hope it works. Best to you

                                                                Jewel

                                                                Jewel
                                                                Participant

                                                                  Joe,

                                                                  Sorry you have had to go through so much to get where your at today. Like you said it is hard to tell which one or combo of therapies have held you stable. Congratulation on 18 months!  My husband went into this with resected disease, I can only hope it works. Best to you

                                                                  Jewel

                                                                  Jewel
                                                                  Participant

                                                                    Joe,

                                                                    Sorry you have had to go through so much to get where your at today. Like you said it is hard to tell which one or combo of therapies have held you stable. Congratulation on 18 months!  My husband went into this with resected disease, I can only hope it works. Best to you

                                                                    Jewel

                                                                    Jewel
                                                                    Participant
                                                                      Joe, thanks for your reply. Did you get a response from the Yervoy? Hope your doing well! Jewel
                                                                    ConstructionCM
                                                                    Participant

                                                                      Jewel,

                                                                      I had rash two weeks after the first infusion.  I actually thought it was poison oak but it was a side effect from the Yervoy.  The Dr. said it was a good sign showing the medicine is working in making the immune system hypersensitive which creates the rash.  I had 4 infusions of Yervoy and that was my only side effect.  

                                                                      I hope this helps and keep strong!

                                                                      Chris 

                                                                      ConstructionCM
                                                                      Participant

                                                                        Jewel,

                                                                        I had rash two weeks after the first infusion.  I actually thought it was poison oak but it was a side effect from the Yervoy.  The Dr. said it was a good sign showing the medicine is working in making the immune system hypersensitive which creates the rash.  I had 4 infusions of Yervoy and that was my only side effect.  

                                                                        I hope this helps and keep strong!

                                                                        Chris 

                                                                        ConstructionCM
                                                                        Participant

                                                                          Jewel,

                                                                          I had rash two weeks after the first infusion.  I actually thought it was poison oak but it was a side effect from the Yervoy.  The Dr. said it was a good sign showing the medicine is working in making the immune system hypersensitive which creates the rash.  I had 4 infusions of Yervoy and that was my only side effect.  

                                                                          I hope this helps and keep strong!

                                                                          Chris 

                                                                            Jewel
                                                                            Participant

                                                                              Chris,

                                                                              Very happy to hear you tolerated the Yervoy well, did it help you? Did you take benadryl for the rash? Thanks for your help! Keep strong yourself!

                                                                              Jewel

                                                                               

                                                                              Jewel
                                                                              Participant

                                                                                Chris,

                                                                                Very happy to hear you tolerated the Yervoy well, did it help you? Did you take benadryl for the rash? Thanks for your help! Keep strong yourself!

                                                                                Jewel

                                                                                 

                                                                                Jewel
                                                                                Participant

                                                                                  Chris,

                                                                                  Very happy to hear you tolerated the Yervoy well, did it help you? Did you take benadryl for the rash? Thanks for your help! Keep strong yourself!

                                                                                  Jewel

                                                                                   

                                                                                Ginger8888
                                                                                Participant

                                                                                  I didn't have any but maybe some fatigue and that might have been from the interferon i did before Yervoy..Good luck, i finished Aug 13, scans in sept. so far it's working, scans again in Dec..Good luck

                                                                                    Jewel
                                                                                    Participant

                                                                                      Ginger8888,

                                                                                      Thrilled it's working for you!

                                                                                      Jewel

                                                                                      Jewel
                                                                                      Participant

                                                                                        Ginger8888,

                                                                                        Thrilled it's working for you!

                                                                                        Jewel

                                                                                        Jewel
                                                                                        Participant

                                                                                          Ginger8888,

                                                                                          Thrilled it's working for you!

                                                                                          Jewel

                                                                                        Ginger8888
                                                                                        Participant

                                                                                          I didn't have any but maybe some fatigue and that might have been from the interferon i did before Yervoy..Good luck, i finished Aug 13, scans in sept. so far it's working, scans again in Dec..Good luck

                                                                                          Ginger8888
                                                                                          Participant

                                                                                            I didn't have any but maybe some fatigue and that might have been from the interferon i did before Yervoy..Good luck, i finished Aug 13, scans in sept. so far it's working, scans again in Dec..Good luck

                                                                                            eturner
                                                                                            Participant

                                                                                              Hi Jewel 

                                                                                              My husband just finished IPI two weeks ago, he had no side effect from the treatment at all. Best of luck and god bless ๐Ÿ™‚

                                                                                              Emily

                                                                                              eturner
                                                                                              Participant

                                                                                                Hi Jewel 

                                                                                                My husband just finished IPI two weeks ago, he had no side effect from the treatment at all. Best of luck and god bless ๐Ÿ™‚

                                                                                                Emily

                                                                                                eturner
                                                                                                Participant

                                                                                                  Hi Jewel 

                                                                                                  My husband just finished IPI two weeks ago, he had no side effect from the treatment at all. Best of luck and god bless ๐Ÿ™‚

                                                                                                  Emily

                                                                                                  _Paul_
                                                                                                  Participant

                                                                                                    Hi Jewel,

                                                                                                    Right after my first dose my wife and I took off for Hawaii for a week. I am sure one of the Dr.'s told me to avoid sun but I never heard it. Yeah I slathered up with 110 spf (although at this point that seems kind of silly) and stayed in the shade a lot. But by the end of the trip I was itching badly. I called my onc who said something like: "Hmm, your in Hawaii right, are you staying out of the sun?". Oops. Itching went away once I strarted behaving myself.

                                                                                                    After the second bag I started getting headaches. For the first few weeks I was ok with ibuprofin, but eventually they got constant and I requried oxycodone. My testosterone dropped to 5% of normal and my onc ordered a brain MRI which revealed an inflamed pituitary. Apparently 17% of the people who received ipi in a clinical trial experienced such inflamation. I started prednisone treatment today to see if it helps. That required that both my onc and endocrinologist work together, since I am a diabetic and steroids cause diabetic's blood sugars to skyrocket. I have been lightheaded and a little dizzy today, but the headache has been gone all day without any meds.

                                                                                                    I get my fourth and final bag of ipi tomorrow.

                                                                                                      chipgoodhue
                                                                                                      Participant
                                                                                                        My Wife Rose may have been a poster child for Ipi side effects. After 3rd dose of combined Nivo/IPI, she had:
                                                                                                        Full body rashes
                                                                                                        Searing headaches/inflamed pituitary
                                                                                                        Sudden onset motor and cognitive deficits, eventually traced to immumo-induced CSF inflammation/meningitis (this part was scary, lumbar punctures, long waits to rule out leptomeningeal melanoma, which aint good).
                                                                                                        Liver inflammation/hepatitis

                                                                                                        Good news is her docs were all over this and manged these side effects well.

                                                                                                        She never had the 4th dose. Her tumors progressed throughout the treatment, but after switching to BRAF/MEK, there is some indication now that perhaps she is seeing a delayed Nivo/IPp response.

                                                                                                      _Paul_
                                                                                                      Participant

                                                                                                        Hi Jewel,

                                                                                                        Right after my first dose my wife and I took off for Hawaii for a week. I am sure one of the Dr.'s told me to avoid sun but I never heard it. Yeah I slathered up with 110 spf (although at this point that seems kind of silly) and stayed in the shade a lot. But by the end of the trip I was itching badly. I called my onc who said something like: "Hmm, your in Hawaii right, are you staying out of the sun?". Oops. Itching went away once I strarted behaving myself.

                                                                                                        After the second bag I started getting headaches. For the first few weeks I was ok with ibuprofin, but eventually they got constant and I requried oxycodone. My testosterone dropped to 5% of normal and my onc ordered a brain MRI which revealed an inflamed pituitary. Apparently 17% of the people who received ipi in a clinical trial experienced such inflamation. I started prednisone treatment today to see if it helps. That required that both my onc and endocrinologist work together, since I am a diabetic and steroids cause diabetic's blood sugars to skyrocket. I have been lightheaded and a little dizzy today, but the headache has been gone all day without any meds.

                                                                                                        I get my fourth and final bag of ipi tomorrow.

                                                                                                        _Paul_
                                                                                                        Participant

                                                                                                          Hi Jewel,

                                                                                                          Right after my first dose my wife and I took off for Hawaii for a week. I am sure one of the Dr.'s told me to avoid sun but I never heard it. Yeah I slathered up with 110 spf (although at this point that seems kind of silly) and stayed in the shade a lot. But by the end of the trip I was itching badly. I called my onc who said something like: "Hmm, your in Hawaii right, are you staying out of the sun?". Oops. Itching went away once I strarted behaving myself.

                                                                                                          After the second bag I started getting headaches. For the first few weeks I was ok with ibuprofin, but eventually they got constant and I requried oxycodone. My testosterone dropped to 5% of normal and my onc ordered a brain MRI which revealed an inflamed pituitary. Apparently 17% of the people who received ipi in a clinical trial experienced such inflamation. I started prednisone treatment today to see if it helps. That required that both my onc and endocrinologist work together, since I am a diabetic and steroids cause diabetic's blood sugars to skyrocket. I have been lightheaded and a little dizzy today, but the headache has been gone all day without any meds.

                                                                                                          I get my fourth and final bag of ipi tomorrow.

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