Yervoy Side Effect
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Yervoy Side Effect

› Forums › General Melanoma Community › Yervoy Side Effect

  • Post
    • February 6, 2013 at 2:27 am
    Marcia1
    Participant

    My Mother, who is 86, had her 1st dose of Yervoy on January 21.  She has State IV Melanoma – started at vulva and is now in her lung.  Last week she started having uncontrollable diaarhea.  She did dehydrate and is now in the hospital.  She was given steroids yesterday, but still has diaarhea and they even checked for C Diff, which was negative.  Has anyone else had this problem and if so, how was it treated?  She is to have her 2nd dose next week, but I'm thinking it will be delayed.  She definitely wants to continue.   Thank you for any inf

    My Mother, who is 86, had her 1st dose of Yervoy on January 21.  She has State IV Melanoma – started at vulva and is now in her lung.  Last week she started having uncontrollable diaarhea.  She did dehydrate and is now in the hospital.  She was given steroids yesterday, but still has diaarhea and they even checked for C Diff, which was negative.  Has anyone else had this problem and if so, how was it treated?  She is to have her 2nd dose next week, but I'm thinking it will be delayed.  She definitely wants to continue.   Thank you for any information.

Viewing 8 reply threads
  • Replies
      • February 6, 2013 at 2:56 am
      kylez
      Participant

      NYKaren has posted her experiences in a situation whose seriousness sounds similar to your mother's. That is, extremely serious.

      You can search for NYKaren's posts (try keyword: REMICADE), but here's part of one of them from this past December. It's a snippet out of context, but: 

      Remicade was the ONLY drug that cured my Ipi-induced severe colitis. Unless its contra-indicated for your gather specifically, it's the recommended choice after steroids fail. It saved my life- took 2 infusions to do the trick.

      My doc, Jedd Wolchok, is an Ipi expert-/he knows his stuff.

      Let us know,

      Karen

      Ps. My story,s not complete in my profile, but u can do a search for Remicade. There's also a steroid that only works in the gut, budesonine , but sounds like your dad's case might be too advanced for that.

      Note where Karen says this course of action (Remicade) was necessary to literally save her life. That's how serious this particular side effect of Yervoy can be. Here's part of another post from her last July 2nd titled "Remicade is a Mirale Drug!":

      If there's one thing I've learned from this journey is that I must educate myself…half the time I make the suggestions to the docs, and a lot of the time, they take them!

      Posting these snippets from NYKaren as starting points, but it sounds like your mother's doctors need to consider more serious interventions if sterooids don't work. 

      • February 6, 2013 at 2:56 am
      kylez
      Participant

      NYKaren has posted her experiences in a situation whose seriousness sounds similar to your mother's. That is, extremely serious.

      You can search for NYKaren's posts (try keyword: REMICADE), but here's part of one of them from this past December. It's a snippet out of context, but: 

      Remicade was the ONLY drug that cured my Ipi-induced severe colitis. Unless its contra-indicated for your gather specifically, it's the recommended choice after steroids fail. It saved my life- took 2 infusions to do the trick.

      My doc, Jedd Wolchok, is an Ipi expert-/he knows his stuff.

      Let us know,

      Karen

      Ps. My story,s not complete in my profile, but u can do a search for Remicade. There's also a steroid that only works in the gut, budesonine , but sounds like your dad's case might be too advanced for that.

      Note where Karen says this course of action (Remicade) was necessary to literally save her life. That's how serious this particular side effect of Yervoy can be. Here's part of another post from her last July 2nd titled "Remicade is a Mirale Drug!":

      If there's one thing I've learned from this journey is that I must educate myself…half the time I make the suggestions to the docs, and a lot of the time, they take them!

      Posting these snippets from NYKaren as starting points, but it sounds like your mother's doctors need to consider more serious interventions if sterooids don't work. 

        • February 7, 2013 at 12:05 am
        NYKaren
        Participant
        Oh Kyle, I didn’t even see your post. I hope our poster lets us know what’s happening.
        Karen
        • February 7, 2013 at 12:05 am
        NYKaren
        Participant
        Oh Kyle, I didn’t even see your post. I hope our poster lets us know what’s happening.
        Karen
        • February 7, 2013 at 12:05 am
        NYKaren
        Participant
        Oh Kyle, I didn’t even see your post. I hope our poster lets us know what’s happening.
        Karen
        • February 7, 2013 at 3:02 am
        Marcia1
        Participant

        Thank you SOooo much for this information.  I will definitely let my mother's doctor know the name of this tomorrow.  She is in the hospital, has had at least 2 doses of steroids and is on IV.  They've been giving her some type of shot in her stomach to try to make her diarrhea not so watery.  She was tested twice for C Diff, but Dr. Ford thinks it's from the Yervoy.  Thank you again for in the information and I will let everyone know what happens.

        • February 7, 2013 at 3:02 am
        Marcia1
        Participant

        Thank you SOooo much for this information.  I will definitely let my mother's doctor know the name of this tomorrow.  She is in the hospital, has had at least 2 doses of steroids and is on IV.  They've been giving her some type of shot in her stomach to try to make her diarrhea not so watery.  She was tested twice for C Diff, but Dr. Ford thinks it's from the Yervoy.  Thank you again for in the information and I will let everyone know what happens.

        • February 7, 2013 at 3:02 am
        Marcia1
        Participant

        Thank you SOooo much for this information.  I will definitely let my mother's doctor know the name of this tomorrow.  She is in the hospital, has had at least 2 doses of steroids and is on IV.  They've been giving her some type of shot in her stomach to try to make her diarrhea not so watery.  She was tested twice for C Diff, but Dr. Ford thinks it's from the Yervoy.  Thank you again for in the information and I will let everyone know what happens.

      • February 6, 2013 at 2:56 am
      kylez
      Participant

      NYKaren has posted her experiences in a situation whose seriousness sounds similar to your mother's. That is, extremely serious.

      You can search for NYKaren's posts (try keyword: REMICADE), but here's part of one of them from this past December. It's a snippet out of context, but: 

      Remicade was the ONLY drug that cured my Ipi-induced severe colitis. Unless its contra-indicated for your gather specifically, it's the recommended choice after steroids fail. It saved my life- took 2 infusions to do the trick.

      My doc, Jedd Wolchok, is an Ipi expert-/he knows his stuff.

      Let us know,

      Karen

      Ps. My story,s not complete in my profile, but u can do a search for Remicade. There's also a steroid that only works in the gut, budesonine , but sounds like your dad's case might be too advanced for that.

      Note where Karen says this course of action (Remicade) was necessary to literally save her life. That's how serious this particular side effect of Yervoy can be. Here's part of another post from her last July 2nd titled "Remicade is a Mirale Drug!":

      If there's one thing I've learned from this journey is that I must educate myself…half the time I make the suggestions to the docs, and a lot of the time, they take them!

      Posting these snippets from NYKaren as starting points, but it sounds like your mother's doctors need to consider more serious interventions if sterooids don't work. 

      • February 6, 2013 at 3:02 am
      NYKaren
      Participant
      Hi there,
      So sorry your mom is going through this.
      I had the exact same side-effect. The only cure was Remicade, which is given via IV. It took two doses before the diarrhea finally stopped, but after the second dose it stopped immediately.
      Please be prepared for your mom not being allowed to continue Yervoy.
      Is she being seen by a melanoma specialist? A melanoma specialist would know about Remicade, as it is the standard of care after steroids fail to control the diarrhea.
      I’m no expert, but I’m sure treatment must be managed extra-carefully due to your mom’s age. If her onc is not a melanoma specialist, and the hospital is not a melanoma center of excellence, I would urge you to have him/call an onc who is for expert advice. If the doctor won’t, then you should.
      If you tell us where you live and the name of onc/hospital, we can better help you.
      Karen
      • February 6, 2013 at 3:02 am
      NYKaren
      Participant
      Hi there,
      So sorry your mom is going through this.
      I had the exact same side-effect. The only cure was Remicade, which is given via IV. It took two doses before the diarrhea finally stopped, but after the second dose it stopped immediately.
      Please be prepared for your mom not being allowed to continue Yervoy.
      Is she being seen by a melanoma specialist? A melanoma specialist would know about Remicade, as it is the standard of care after steroids fail to control the diarrhea.
      I’m no expert, but I’m sure treatment must be managed extra-carefully due to your mom’s age. If her onc is not a melanoma specialist, and the hospital is not a melanoma center of excellence, I would urge you to have him/call an onc who is for expert advice. If the doctor won’t, then you should.
      If you tell us where you live and the name of onc/hospital, we can better help you.
      Karen
        • February 6, 2013 at 3:30 am
        POW
        Participant

        Before my brother got his first dose of ipi, the oncology pharmacist sat with us for an hour explaining about how ipi works and its side effects. Then she gave my brother a small orange instructional brochure. She told him to keep it with him at all times because if he went to a hospital other than a melanoma center, the doctors might not know what ipi is or how best to deal with the side effects.

        Steroids like prednisone work in most people. Budesonine, as has been mentioned, is a steroid that stays inside the digestive system so higher doses can be given without toxicity to the rest of the body. It is an anti-inflammatory used to treat Crohn's disease (chronic auto-immune colitis).  Remicade is a monoclonal antibody so it must be given IV not orally. It suppresses the inflammatory response and is also used to treat Crohn's disease.

        Patients on ipi would be wise to remember these drugs just in case they find themselves being treated by someone with little or no experience with ipi. As NYKaren said, sometimes when a knowledgeable patient makes a suggestion, doctors will actually listen!

        • February 6, 2013 at 3:30 am
        POW
        Participant

        Before my brother got his first dose of ipi, the oncology pharmacist sat with us for an hour explaining about how ipi works and its side effects. Then she gave my brother a small orange instructional brochure. She told him to keep it with him at all times because if he went to a hospital other than a melanoma center, the doctors might not know what ipi is or how best to deal with the side effects.

        Steroids like prednisone work in most people. Budesonine, as has been mentioned, is a steroid that stays inside the digestive system so higher doses can be given without toxicity to the rest of the body. It is an anti-inflammatory used to treat Crohn's disease (chronic auto-immune colitis).  Remicade is a monoclonal antibody so it must be given IV not orally. It suppresses the inflammatory response and is also used to treat Crohn's disease.

        Patients on ipi would be wise to remember these drugs just in case they find themselves being treated by someone with little or no experience with ipi. As NYKaren said, sometimes when a knowledgeable patient makes a suggestion, doctors will actually listen!

        • February 7, 2013 at 3:16 am
        Marcia1
        Participant

        My Mom was given that little pamphlet about Yervoy side effects.  When the ambulance to her to the E.R. Sunday night I gave the information to the doctor – he barely even looked at it and gave it back to me.  He gave her fluid and sent her back to the Personal Care Home.  The next morning her Cancer doctor wanted to see her right away and he admitted her to the hospital. 

         

        Marcia

        • February 7, 2013 at 3:16 am
        Marcia1
        Participant

        My Mom was given that little pamphlet about Yervoy side effects.  When the ambulance to her to the E.R. Sunday night I gave the information to the doctor – he barely even looked at it and gave it back to me.  He gave her fluid and sent her back to the Personal Care Home.  The next morning her Cancer doctor wanted to see her right away and he admitted her to the hospital. 

         

        Marcia

        • February 7, 2013 at 3:16 am
        Marcia1
        Participant

        My Mom was given that little pamphlet about Yervoy side effects.  When the ambulance to her to the E.R. Sunday night I gave the information to the doctor – he barely even looked at it and gave it back to me.  He gave her fluid and sent her back to the Personal Care Home.  The next morning her Cancer doctor wanted to see her right away and he admitted her to the hospital. 

         

        Marcia

        • February 6, 2013 at 3:30 am
        POW
        Participant

        Before my brother got his first dose of ipi, the oncology pharmacist sat with us for an hour explaining about how ipi works and its side effects. Then she gave my brother a small orange instructional brochure. She told him to keep it with him at all times because if he went to a hospital other than a melanoma center, the doctors might not know what ipi is or how best to deal with the side effects.

        Steroids like prednisone work in most people. Budesonine, as has been mentioned, is a steroid that stays inside the digestive system so higher doses can be given without toxicity to the rest of the body. It is an anti-inflammatory used to treat Crohn's disease (chronic auto-immune colitis).  Remicade is a monoclonal antibody so it must be given IV not orally. It suppresses the inflammatory response and is also used to treat Crohn's disease.

        Patients on ipi would be wise to remember these drugs just in case they find themselves being treated by someone with little or no experience with ipi. As NYKaren said, sometimes when a knowledgeable patient makes a suggestion, doctors will actually listen!

        • February 7, 2013 at 3:09 am
        Marcia1
        Participant

        Karen – Thank you for all this information.  We live in State College, Pennsylvania and go to Mount Nittany Medical Center – Dr. Ford.  The closest other hospitals to us are Geisinger and Hershey Medical Center.  I do not know what they are giving my Mother, except I do know she is on Flagyl and maybe Vancomycin.  She is going to have a blood transfusion tomorrow since her blood counts are down.  She really has not had any pain or problems with her Stage IV Melanoma and the Temadar didn't really bother her at all (except the tumor in her lung continued to grow).  I would not think they would let her take Yervoy again.  She just wants to continue trying anything.  I guess she feels if she doesn't, she's giving up.  She will be 87 February 21.  Thank you again.  

        Marcia

        • February 7, 2013 at 3:09 am
        Marcia1
        Participant

        Karen – Thank you for all this information.  We live in State College, Pennsylvania and go to Mount Nittany Medical Center – Dr. Ford.  The closest other hospitals to us are Geisinger and Hershey Medical Center.  I do not know what they are giving my Mother, except I do know she is on Flagyl and maybe Vancomycin.  She is going to have a blood transfusion tomorrow since her blood counts are down.  She really has not had any pain or problems with her Stage IV Melanoma and the Temadar didn't really bother her at all (except the tumor in her lung continued to grow).  I would not think they would let her take Yervoy again.  She just wants to continue trying anything.  I guess she feels if she doesn't, she's giving up.  She will be 87 February 21.  Thank you again.  

        Marcia

        • February 7, 2013 at 3:09 am
        Marcia1
        Participant

        Karen – Thank you for all this information.  We live in State College, Pennsylvania and go to Mount Nittany Medical Center – Dr. Ford.  The closest other hospitals to us are Geisinger and Hershey Medical Center.  I do not know what they are giving my Mother, except I do know she is on Flagyl and maybe Vancomycin.  She is going to have a blood transfusion tomorrow since her blood counts are down.  She really has not had any pain or problems with her Stage IV Melanoma and the Temadar didn't really bother her at all (except the tumor in her lung continued to grow).  I would not think they would let her take Yervoy again.  She just wants to continue trying anything.  I guess she feels if she doesn't, she's giving up.  She will be 87 February 21.  Thank you again.  

        Marcia

      • February 6, 2013 at 3:02 am
      NYKaren
      Participant
      Hi there,
      So sorry your mom is going through this.
      I had the exact same side-effect. The only cure was Remicade, which is given via IV. It took two doses before the diarrhea finally stopped, but after the second dose it stopped immediately.
      Please be prepared for your mom not being allowed to continue Yervoy.
      Is she being seen by a melanoma specialist? A melanoma specialist would know about Remicade, as it is the standard of care after steroids fail to control the diarrhea.
      I’m no expert, but I’m sure treatment must be managed extra-carefully due to your mom’s age. If her onc is not a melanoma specialist, and the hospital is not a melanoma center of excellence, I would urge you to have him/call an onc who is for expert advice. If the doctor won’t, then you should.
      If you tell us where you live and the name of onc/hospital, we can better help you.
      Karen
      • February 6, 2013 at 3:43 am
      Swanee
      Participant

      Hi Marcia,

      So sorry your Mom is experiencing this reaction to yervoy.  I too, had the same reaction from the first dose and was unable to continue with yervoy.  I ended up with ulcerated colitis and had to be treated with remicade and also  a high dose of prednisone over a 4 month period.  By  the end of the 4 months, I could not walk up the stairs in my house without assistance, I had lost so much muscle mass from the prednisone.  It was a rough recovery and I still have not recovered the lost muscle  in my legs, however, I completely recovered from the colitis and have no long term issues but it did take about 6-8 months to recover completely.

      I was treated in a melanoma treatment center and thankfully they took my situation seriously and treated me quickly.  I can't imagine what would have happened if they gave me a 2nd dose.  

      Good luck to your Mom, she sounds like a real sweetie and I love her fighting spirit, with an attitude like that she will surely be the winner!

      Also, great advice from the other posters, Karen and POW!

      Swanee

      • February 6, 2013 at 3:43 am
      Swanee
      Participant

      Hi Marcia,

      So sorry your Mom is experiencing this reaction to yervoy.  I too, had the same reaction from the first dose and was unable to continue with yervoy.  I ended up with ulcerated colitis and had to be treated with remicade and also  a high dose of prednisone over a 4 month period.  By  the end of the 4 months, I could not walk up the stairs in my house without assistance, I had lost so much muscle mass from the prednisone.  It was a rough recovery and I still have not recovered the lost muscle  in my legs, however, I completely recovered from the colitis and have no long term issues but it did take about 6-8 months to recover completely.

      I was treated in a melanoma treatment center and thankfully they took my situation seriously and treated me quickly.  I can't imagine what would have happened if they gave me a 2nd dose.  

      Good luck to your Mom, she sounds like a real sweetie and I love her fighting spirit, with an attitude like that she will surely be the winner!

      Also, great advice from the other posters, Karen and POW!

      Swanee

      • February 6, 2013 at 3:43 am
      Swanee
      Participant

      Hi Marcia,

      So sorry your Mom is experiencing this reaction to yervoy.  I too, had the same reaction from the first dose and was unable to continue with yervoy.  I ended up with ulcerated colitis and had to be treated with remicade and also  a high dose of prednisone over a 4 month period.  By  the end of the 4 months, I could not walk up the stairs in my house without assistance, I had lost so much muscle mass from the prednisone.  It was a rough recovery and I still have not recovered the lost muscle  in my legs, however, I completely recovered from the colitis and have no long term issues but it did take about 6-8 months to recover completely.

      I was treated in a melanoma treatment center and thankfully they took my situation seriously and treated me quickly.  I can't imagine what would have happened if they gave me a 2nd dose.  

      Good luck to your Mom, she sounds like a real sweetie and I love her fighting spirit, with an attitude like that she will surely be the winner!

      Also, great advice from the other posters, Karen and POW!

      Swanee

        • February 7, 2013 at 3:18 am
        Marcia1
        Participant

        Thank you for responding – it is hard to know what to do.  Our hospital just started a Cancer Clinic and I'm sure the E.R. doctors have no idea what to do about side effects from chemo.   Hopefully, tomorrow will be better.

         

        Marcia

        • February 7, 2013 at 3:18 am
        Marcia1
        Participant

        Thank you for responding – it is hard to know what to do.  Our hospital just started a Cancer Clinic and I'm sure the E.R. doctors have no idea what to do about side effects from chemo.   Hopefully, tomorrow will be better.

         

        Marcia

        • February 7, 2013 at 3:18 am
        Marcia1
        Participant

        Thank you for responding – it is hard to know what to do.  Our hospital just started a Cancer Clinic and I'm sure the E.R. doctors have no idea what to do about side effects from chemo.   Hopefully, tomorrow will be better.

         

        Marcia

        • February 7, 2013 at 4:06 am
        NYKaren
        Participant
        Hi Marcia,
        It sounds like your mom is having severe side-effects from the Yervoy, and you are probably right that the ER docs don’t know much about treating her. Yervoy has only been approved since 2011 and it is an immunotherapy agent.
        What did the docs say about Remicade?
        Maybe you can call the 800 number in the booklet.
        I’m not familiar with the hospitals you mentioned–
        Maybe someone else here can help with that.
        Also, maybe you can get the nurse at the 800 number to refer you to a better yervoy-equipped doctor/hospital.
        Your mom does sound like a doll and I strongly suggest you get her to a better hospital.
        Let us know,
        Karen.
        • February 7, 2013 at 4:06 am
        NYKaren
        Participant
        Hi Marcia,
        It sounds like your mom is having severe side-effects from the Yervoy, and you are probably right that the ER docs don’t know much about treating her. Yervoy has only been approved since 2011 and it is an immunotherapy agent.
        What did the docs say about Remicade?
        Maybe you can call the 800 number in the booklet.
        I’m not familiar with the hospitals you mentioned–
        Maybe someone else here can help with that.
        Also, maybe you can get the nurse at the 800 number to refer you to a better yervoy-equipped doctor/hospital.
        Your mom does sound like a doll and I strongly suggest you get her to a better hospital.
        Let us know,
        Karen.
        • February 7, 2013 at 4:06 am
        NYKaren
        Participant
        Hi Marcia,
        It sounds like your mom is having severe side-effects from the Yervoy, and you are probably right that the ER docs don’t know much about treating her. Yervoy has only been approved since 2011 and it is an immunotherapy agent.
        What did the docs say about Remicade?
        Maybe you can call the 800 number in the booklet.
        I’m not familiar with the hospitals you mentioned–
        Maybe someone else here can help with that.
        Also, maybe you can get the nurse at the 800 number to refer you to a better yervoy-equipped doctor/hospital.
        Your mom does sound like a doll and I strongly suggest you get her to a better hospital.
        Let us know,
        Karen.
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