Yervoy side effects
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Yervoy side effects

› Forums › General Melanoma Community › Yervoy side effects

  • Post
    • February 25, 2016 at 1:13 am
    Steve Plasier
    Participant

    I am curious about what side effects are common with patients. I just had all the lymph nodes removed from my right armpit and will start Yervoy soon.

Viewing 29 reply threads
  • Replies
      • February 25, 2016 at 1:44 am
      jennunicorn
      Participant

      Hi Steve, 

      Sorry you have to go through all of this. I just finished 4 rounds of Yervoy myself, I am stage 3b, so it was the 10mg/kg dosage. First off, everyone is different. No one can really predict how their body will react to any kind of treatment or medication. I got through all 4 with very mild side effects. I have had fatigue the whole time, but not too severe. Most people seem to get the rash/itching and intestinal issues (diahrrea.. which for some becomes Colitis). I did not have either of those. I have had eczema for a long time, so it flared up the eczema for me (I use steroid cream to calm it down). I have posts where I updated about how I was feeling after each infusion which you can read if you go into my profile. I won't say that you'll have as easy of a time as I have had, but you'll keep your doctor in the loop during treatment and if any side effect comes up you'll let them know right away and they will help treat it if neccessary. I will say taking a good probiotic may be helpful. (check with your doctor first). Hope it goes smoothly for you!

      All the best,

      Jenn

      • February 25, 2016 at 1:44 am
      jennunicorn
      Participant

      Hi Steve, 

      Sorry you have to go through all of this. I just finished 4 rounds of Yervoy myself, I am stage 3b, so it was the 10mg/kg dosage. First off, everyone is different. No one can really predict how their body will react to any kind of treatment or medication. I got through all 4 with very mild side effects. I have had fatigue the whole time, but not too severe. Most people seem to get the rash/itching and intestinal issues (diahrrea.. which for some becomes Colitis). I did not have either of those. I have had eczema for a long time, so it flared up the eczema for me (I use steroid cream to calm it down). I have posts where I updated about how I was feeling after each infusion which you can read if you go into my profile. I won't say that you'll have as easy of a time as I have had, but you'll keep your doctor in the loop during treatment and if any side effect comes up you'll let them know right away and they will help treat it if neccessary. I will say taking a good probiotic may be helpful. (check with your doctor first). Hope it goes smoothly for you!

      All the best,

      Jenn

      • February 25, 2016 at 1:44 am
      jennunicorn
      Participant

      Hi Steve, 

      Sorry you have to go through all of this. I just finished 4 rounds of Yervoy myself, I am stage 3b, so it was the 10mg/kg dosage. First off, everyone is different. No one can really predict how their body will react to any kind of treatment or medication. I got through all 4 with very mild side effects. I have had fatigue the whole time, but not too severe. Most people seem to get the rash/itching and intestinal issues (diahrrea.. which for some becomes Colitis). I did not have either of those. I have had eczema for a long time, so it flared up the eczema for me (I use steroid cream to calm it down). I have posts where I updated about how I was feeling after each infusion which you can read if you go into my profile. I won't say that you'll have as easy of a time as I have had, but you'll keep your doctor in the loop during treatment and if any side effect comes up you'll let them know right away and they will help treat it if neccessary. I will say taking a good probiotic may be helpful. (check with your doctor first). Hope it goes smoothly for you!

      All the best,

      Jenn

      • February 25, 2016 at 3:06 pm
      Scooby123
      Participant

      Hi Steve ,

      sorry you are dealing with this , I too have had yeryoy and managed with itchy skin, but do agree with jenn all are differentt and your doctor will be on top of side effects if accur. Make sure you let them know of any issues you are getting

      all the best

      scooby123❤️

      • February 25, 2016 at 3:06 pm
      Scooby123
      Participant

      Hi Steve ,

      sorry you are dealing with this , I too have had yeryoy and managed with itchy skin, but do agree with jenn all are differentt and your doctor will be on top of side effects if accur. Make sure you let them know of any issues you are getting

      all the best

      scooby123❤️

        • March 26, 2016 at 2:14 am
        Steve Plasier
        Participant

        Thanks for your imput. So far my face is a little itchy

        • March 26, 2016 at 2:14 am
        Steve Plasier
        Participant

        Thanks for your imput. So far my face is a little itchy

        • March 26, 2016 at 2:14 am
        Steve Plasier
        Participant

        Thanks for your imput. So far my face is a little itchy

      • February 25, 2016 at 3:06 pm
      Scooby123
      Participant

      Hi Steve ,

      sorry you are dealing with this , I too have had yeryoy and managed with itchy skin, but do agree with jenn all are differentt and your doctor will be on top of side effects if accur. Make sure you let them know of any issues you are getting

      all the best

      scooby123❤️

      • February 25, 2016 at 3:09 pm
      Gene_S
      Participant

      Hi Steve,

      My husband was Stage IV and on a Clinical Trial for 10 mg/kg of Ipi (Yervoy) and GMCSF daily injections.  He mostly had the itchy rash, some fatigue, some sore joints for a while, as time went on he had his eyebrows turn white and then some of his beard, he lost pigmentation in his face and neck.  It worked for him and he is now NED if you would like to read more check out his profile.

      Like the other person said everyone is different and gets different side effects.  His 5 year Anniversary for starting the clinical trial is coming up on Mar. 3.  He became NED in Nov. of 2012, continued on the maintenance doses until Dec. 2013.  So he has now been NED for 3 years 4 months.

      Judy (loving wife of Gene Stage IV and now NED for over 3 years.

      • February 25, 2016 at 3:09 pm
      Gene_S
      Participant

      Hi Steve,

      My husband was Stage IV and on a Clinical Trial for 10 mg/kg of Ipi (Yervoy) and GMCSF daily injections.  He mostly had the itchy rash, some fatigue, some sore joints for a while, as time went on he had his eyebrows turn white and then some of his beard, he lost pigmentation in his face and neck.  It worked for him and he is now NED if you would like to read more check out his profile.

      Like the other person said everyone is different and gets different side effects.  His 5 year Anniversary for starting the clinical trial is coming up on Mar. 3.  He became NED in Nov. of 2012, continued on the maintenance doses until Dec. 2013.  So he has now been NED for 3 years 4 months.

      Judy (loving wife of Gene Stage IV and now NED for over 3 years.

        • February 25, 2016 at 4:57 pm
        Scooby123
        Participant

        Hi Gene S

        i often look at your husband profile regarding is tumours and where he had them, I too have liver, lungs, and probably else where , I had ippi but 3 mg 4 doses with 50% reduction but we do not get maintanence dose even thou I have had a response. I am not Braf so would love to have had the chance to have more. I do believe it would have help me more, I know they worry regarding side effects but I only had itchy skin . BM movements some days but meds soon got on top of it. 

        So pleased for your hubby and you and hope next month when I eventually get my scan results more shrinkage or still stable. Praying anyway.

        take care

        scooby123❤️

        • February 25, 2016 at 4:57 pm
        Scooby123
        Participant

        Hi Gene S

        i often look at your husband profile regarding is tumours and where he had them, I too have liver, lungs, and probably else where , I had ippi but 3 mg 4 doses with 50% reduction but we do not get maintanence dose even thou I have had a response. I am not Braf so would love to have had the chance to have more. I do believe it would have help me more, I know they worry regarding side effects but I only had itchy skin . BM movements some days but meds soon got on top of it. 

        So pleased for your hubby and you and hope next month when I eventually get my scan results more shrinkage or still stable. Praying anyway.

        take care

        scooby123❤️

        • February 25, 2016 at 4:57 pm
        Scooby123
        Participant

        Hi Gene S

        i often look at your husband profile regarding is tumours and where he had them, I too have liver, lungs, and probably else where , I had ippi but 3 mg 4 doses with 50% reduction but we do not get maintanence dose even thou I have had a response. I am not Braf so would love to have had the chance to have more. I do believe it would have help me more, I know they worry regarding side effects but I only had itchy skin . BM movements some days but meds soon got on top of it. 

        So pleased for your hubby and you and hope next month when I eventually get my scan results more shrinkage or still stable. Praying anyway.

        take care

        scooby123❤️

        • February 25, 2016 at 4:57 pm
        Scooby123
        Participant

        Hi Gene S

        i often look at your husband profile regarding is tumours and where he had them, I too have liver, lungs, and probably else where , I had ippi but 3 mg 4 doses with 50% reduction but we do not get maintanence dose even thou I have had a response. I am not Braf so would love to have had the chance to have more. I do believe it would have help me more, I know they worry regarding side effects but I only had itchy skin . BM movements some days but meds soon got on top of it. 

        So pleased for your hubby and you and hope next month when I eventually get my scan results more shrinkage or still stable. Praying anyway.

        take care

        scooby123❤️

        • February 25, 2016 at 4:57 pm
        Scooby123
        Participant

        Hi Gene S

        i often look at your husband profile regarding is tumours and where he had them, I too have liver, lungs, and probably else where , I had ippi but 3 mg 4 doses with 50% reduction but we do not get maintanence dose even thou I have had a response. I am not Braf so would love to have had the chance to have more. I do believe it would have help me more, I know they worry regarding side effects but I only had itchy skin . BM movements some days but meds soon got on top of it. 

        So pleased for your hubby and you and hope next month when I eventually get my scan results more shrinkage or still stable. Praying anyway.

        take care

        scooby123❤️

        • February 25, 2016 at 4:57 pm
        Scooby123
        Participant

        Hi Gene S

        i often look at your husband profile regarding is tumours and where he had them, I too have liver, lungs, and probably else where , I had ippi but 3 mg 4 doses with 50% reduction but we do not get maintanence dose even thou I have had a response. I am not Braf so would love to have had the chance to have more. I do believe it would have help me more, I know they worry regarding side effects but I only had itchy skin . BM movements some days but meds soon got on top of it. 

        So pleased for your hubby and you and hope next month when I eventually get my scan results more shrinkage or still stable. Praying anyway.

        take care

        scooby123❤️

      • February 25, 2016 at 3:09 pm
      Gene_S
      Participant

      Hi Steve,

      My husband was Stage IV and on a Clinical Trial for 10 mg/kg of Ipi (Yervoy) and GMCSF daily injections.  He mostly had the itchy rash, some fatigue, some sore joints for a while, as time went on he had his eyebrows turn white and then some of his beard, he lost pigmentation in his face and neck.  It worked for him and he is now NED if you would like to read more check out his profile.

      Like the other person said everyone is different and gets different side effects.  His 5 year Anniversary for starting the clinical trial is coming up on Mar. 3.  He became NED in Nov. of 2012, continued on the maintenance doses until Dec. 2013.  So he has now been NED for 3 years 4 months.

      Judy (loving wife of Gene Stage IV and now NED for over 3 years.

      • February 25, 2016 at 7:21 pm
      MoiraM
      Participant

      After the first treatment there were no side effects. After the second I had some diarrhoea that was easily controlled with Imodium and a small amount of rash – so little that my doctor was not sure it was due to the Yervoy and it quickly faded away. After the third I had more mild rash which, for me was on my arms and thighs and was symetrical and more diarrhoea.I also started to feel tired and my appetite decreased. However my bloods were normal at theis stage and I was cleared for the 4th treatment.

      It was after my fourth treatment that things started to happen, although they crept up on me quite gradually and I did not realise that I was in trouble for some time. I felt tired again, the rash was a proper 'ipi rash' and I did not have any appetite. The importanr indicators that I missed was I had side of neck pain, extreme triedness and my diarrhoea stopped.

      Went for a blood test and discovered that my anterior pitiutary gand had packed up. Bad news, it will never recover. Good news, it isn't the end of the world – I have to take daily replacement doses of thyroxine and prednisolone. More good news, I am a responder and my tumours shrunk.

      • February 25, 2016 at 7:21 pm
      MoiraM
      Participant

      After the first treatment there were no side effects. After the second I had some diarrhoea that was easily controlled with Imodium and a small amount of rash – so little that my doctor was not sure it was due to the Yervoy and it quickly faded away. After the third I had more mild rash which, for me was on my arms and thighs and was symetrical and more diarrhoea.I also started to feel tired and my appetite decreased. However my bloods were normal at theis stage and I was cleared for the 4th treatment.

      It was after my fourth treatment that things started to happen, although they crept up on me quite gradually and I did not realise that I was in trouble for some time. I felt tired again, the rash was a proper 'ipi rash' and I did not have any appetite. The importanr indicators that I missed was I had side of neck pain, extreme triedness and my diarrhoea stopped.

      Went for a blood test and discovered that my anterior pitiutary gand had packed up. Bad news, it will never recover. Good news, it isn't the end of the world – I have to take daily replacement doses of thyroxine and prednisolone. More good news, I am a responder and my tumours shrunk.

      • February 25, 2016 at 7:21 pm
      MoiraM
      Participant

      After the first treatment there were no side effects. After the second I had some diarrhoea that was easily controlled with Imodium and a small amount of rash – so little that my doctor was not sure it was due to the Yervoy and it quickly faded away. After the third I had more mild rash which, for me was on my arms and thighs and was symetrical and more diarrhoea.I also started to feel tired and my appetite decreased. However my bloods were normal at theis stage and I was cleared for the 4th treatment.

      It was after my fourth treatment that things started to happen, although they crept up on me quite gradually and I did not realise that I was in trouble for some time. I felt tired again, the rash was a proper 'ipi rash' and I did not have any appetite. The importanr indicators that I missed was I had side of neck pain, extreme triedness and my diarrhoea stopped.

      Went for a blood test and discovered that my anterior pitiutary gand had packed up. Bad news, it will never recover. Good news, it isn't the end of the world – I have to take daily replacement doses of thyroxine and prednisolone. More good news, I am a responder and my tumours shrunk.

      • February 25, 2016 at 8:05 pm
      Squash
      Participant

      I am starting yervoy today.

      My dosage is only 1mg but I was told all the research stated that this was just as effective as the higher dosages but obviously with less side effects.

      I am hoping it works as I didnt have any luck with Permbro and I am hoping i dont get gastro issues which i am prone to get.

      How long for side effects to kick in on the yervoy?

       

       

      • February 25, 2016 at 8:05 pm
      Squash
      Participant

      I am starting yervoy today.

      My dosage is only 1mg but I was told all the research stated that this was just as effective as the higher dosages but obviously with less side effects.

      I am hoping it works as I didnt have any luck with Permbro and I am hoping i dont get gastro issues which i am prone to get.

      How long for side effects to kick in on the yervoy?

       

       

      • February 25, 2016 at 8:05 pm
      Squash
      Participant

      I am starting yervoy today.

      My dosage is only 1mg but I was told all the research stated that this was just as effective as the higher dosages but obviously with less side effects.

      I am hoping it works as I didnt have any luck with Permbro and I am hoping i dont get gastro issues which i am prone to get.

      How long for side effects to kick in on the yervoy?

       

       

        • February 25, 2016 at 9:46 pm
        MoiraM
        Participant

        I was on 3mg/kg. My diarrhoea started 2 weeks after the secnd dose, so five weeks in.

        • February 25, 2016 at 9:46 pm
        MoiraM
        Participant

        I was on 3mg/kg. My diarrhoea started 2 weeks after the secnd dose, so five weeks in.

        • February 25, 2016 at 9:46 pm
        MoiraM
        Participant

        I was on 3mg/kg. My diarrhoea started 2 weeks after the secnd dose, so five weeks in.

      • February 25, 2016 at 8:28 pm
      Steve Plasier
      Participant

      Thanks everyone for the information. I don't know what strength of Yervoy or just when yet. I see my Cancer Doctor March 2, 2016.

      • February 25, 2016 at 8:28 pm
      Steve Plasier
      Participant

      Thanks everyone for the information. I don't know what strength of Yervoy or just when yet. I see my Cancer Doctor March 2, 2016.

      • February 25, 2016 at 8:28 pm
      Steve Plasier
      Participant

      Thanks everyone for the information. I don't know what strength of Yervoy or just when yet. I see my Cancer Doctor March 2, 2016.

        • March 26, 2016 at 2:27 am
        Steve Plasier
        Participant

        I did my first infusion March 23rd. so far my face is a little itchy.

        • March 26, 2016 at 2:27 am
        Steve Plasier
        Participant

        I did my first infusion March 23rd. so far my face is a little itchy.

        • March 26, 2016 at 2:27 am
        Steve Plasier
        Participant

        I did my first infusion March 23rd. so far my face is a little itchy.

      • February 25, 2016 at 9:39 pm
      ed williams
      Participant

      Steve, if you want to spend some time listening to a webcast by Dr. Weber and Dr. Agarwala two leaders in the field of melanoma talk about what oncologist are seeing as far as side effects with Immunotherapy drugs. You can go to " Omedlive" you have to sign up, no cost and no junk mail afterwards. If you click at the top row of choices you will find presentations, then choose Melanoma and you will find a webinar presentation titled " A team based approach to optimizing outcomes in melanoma. Hope this helps!!! Ed

        • March 26, 2016 at 2:18 am
        Steve Plasier
        Participant

        Thanks Ed,  I will check it out

        • March 26, 2016 at 2:18 am
        Steve Plasier
        Participant

        Thanks Ed,  I will check it out

        • March 26, 2016 at 2:18 am
        Steve Plasier
        Participant

        Thanks Ed,  I will check it out

      • February 25, 2016 at 9:39 pm
      ed williams
      Participant

      Steve, if you want to spend some time listening to a webcast by Dr. Weber and Dr. Agarwala two leaders in the field of melanoma talk about what oncologist are seeing as far as side effects with Immunotherapy drugs. You can go to " Omedlive" you have to sign up, no cost and no junk mail afterwards. If you click at the top row of choices you will find presentations, then choose Melanoma and you will find a webinar presentation titled " A team based approach to optimizing outcomes in melanoma. Hope this helps!!! Ed

      • February 25, 2016 at 9:39 pm
      ed williams
      Participant

      Steve, if you want to spend some time listening to a webcast by Dr. Weber and Dr. Agarwala two leaders in the field of melanoma talk about what oncologist are seeing as far as side effects with Immunotherapy drugs. You can go to " Omedlive" you have to sign up, no cost and no junk mail afterwards. If you click at the top row of choices you will find presentations, then choose Melanoma and you will find a webinar presentation titled " A team based approach to optimizing outcomes in melanoma. Hope this helps!!! Ed

      • February 26, 2016 at 6:22 pm
      gregor913
      Participant
      I finished my third infusion of yervoy. My skin itched for two days with mild fatigue then went away. I’m on the 10mg dose and have one more infusion in march. Just did my bloods and got the all clear for 4th. Good luck in your treatment. Tips drink lots of water. At least 8 cups a day. I was on a probiotic and used a different soap. I used goat milk soap that seems to have helped with the itching.

      Cheers Greg

      • February 26, 2016 at 6:22 pm
      gregor913
      Participant
      I finished my third infusion of yervoy. My skin itched for two days with mild fatigue then went away. I’m on the 10mg dose and have one more infusion in march. Just did my bloods and got the all clear for 4th. Good luck in your treatment. Tips drink lots of water. At least 8 cups a day. I was on a probiotic and used a different soap. I used goat milk soap that seems to have helped with the itching.

      Cheers Greg

        • March 26, 2016 at 2:24 am
        Steve Plasier
        Participant

        I did my first infusion March 23rd and my face has been alittle itchy today. The soap is a good idea

        • March 26, 2016 at 2:24 am
        Steve Plasier
        Participant

        I did my first infusion March 23rd and my face has been alittle itchy today. The soap is a good idea

        • March 26, 2016 at 2:24 am
        Steve Plasier
        Participant

        I did my first infusion March 23rd and my face has been alittle itchy today. The soap is a good idea

      • February 26, 2016 at 6:22 pm
      gregor913
      Participant
      I finished my third infusion of yervoy. My skin itched for two days with mild fatigue then went away. I’m on the 10mg dose and have one more infusion in march. Just did my bloods and got the all clear for 4th. Good luck in your treatment. Tips drink lots of water. At least 8 cups a day. I was on a probiotic and used a different soap. I used goat milk soap that seems to have helped with the itching.

      Cheers Greg

      • February 27, 2016 at 1:08 am
      keepthefaith11
      Participant
      My dad did his first infusion 2 weeks ago and has not felt anything. We are keeping fingers crossed that he will keep feeling well, like so many on here have. He is taking probiotics as well.

      Also he is doing radiation simultaneously and just finished week 1 of 4.

      • February 27, 2016 at 1:08 am
      keepthefaith11
      Participant
      My dad did his first infusion 2 weeks ago and has not felt anything. We are keeping fingers crossed that he will keep feeling well, like so many on here have. He is taking probiotics as well.

      Also he is doing radiation simultaneously and just finished week 1 of 4.

      • February 27, 2016 at 1:08 am
      keepthefaith11
      Participant
      My dad did his first infusion 2 weeks ago and has not felt anything. We are keeping fingers crossed that he will keep feeling well, like so many on here have. He is taking probiotics as well.

      Also he is doing radiation simultaneously and just finished week 1 of 4.

      • March 1, 2016 at 9:26 pm
      snoopyinoc
      Participant

      Hi Steve. My husband is on ipi/nivo (we were told this is more effective than Yervoy alone) combo and his side effects started after the 3rd infusion were extreme fatigue, rashes, and severe headaches, along with mild diahrea and nausia. He completed 3 rounds of the ipi/nivo combo and was a responder. His tumors shrank which we are very happy about. He will contintue the nvo only regiment every two weeks.

      To help with his side effects he is currenlty on steriods.

      Best wishes to you!

       

      • March 1, 2016 at 9:26 pm
      snoopyinoc
      Participant

      Hi Steve. My husband is on ipi/nivo (we were told this is more effective than Yervoy alone) combo and his side effects started after the 3rd infusion were extreme fatigue, rashes, and severe headaches, along with mild diahrea and nausia. He completed 3 rounds of the ipi/nivo combo and was a responder. His tumors shrank which we are very happy about. He will contintue the nvo only regiment every two weeks.

      To help with his side effects he is currenlty on steriods.

      Best wishes to you!

       

      • March 1, 2016 at 9:26 pm
      snoopyinoc
      Participant

      Hi Steve. My husband is on ipi/nivo (we were told this is more effective than Yervoy alone) combo and his side effects started after the 3rd infusion were extreme fatigue, rashes, and severe headaches, along with mild diahrea and nausia. He completed 3 rounds of the ipi/nivo combo and was a responder. His tumors shrank which we are very happy about. He will contintue the nvo only regiment every two weeks.

      To help with his side effects he is currenlty on steriods.

      Best wishes to you!

       

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