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Yervoy side effects

Forums General Melanoma Community Yervoy side effects

  • Post
    Nell
    Participant

    I  had my second infusion of Yervoy last week.  I am starting with some diahrrea, and I know this side effect is watched carefully…Are most patients able to continue treatment or does this often result in having to stop? I also am wondering if there is a correlation between experiencing side effects and having successful results with Yervoy.Thank you for the help and information.

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  • Replies
      Ginger8888
      Participant

      I'm having my 3 rd infusion on the 23 rd and as of right now the only side effect i have is a little bit of fatigue in the am and very little hair loss..From what i've read is that you should report any side effects to your dr especially diahrrea if it last more than 25 hrs..I'm expecting side effects to kick in after my 3rd treatment, as far as responding with or without side effects, i think that just depends on the person getting the treatment..Good luck..Drink lot's and lot's of water…I also drink V-8 juice to get my veg intake for the day and at least one nutritional drink to make sure i'm keeping my nutrition on track..

      Ginger8888
      Participant

      I'm having my 3 rd infusion on the 23 rd and as of right now the only side effect i have is a little bit of fatigue in the am and very little hair loss..From what i've read is that you should report any side effects to your dr especially diahrrea if it last more than 25 hrs..I'm expecting side effects to kick in after my 3rd treatment, as far as responding with or without side effects, i think that just depends on the person getting the treatment..Good luck..Drink lot's and lot's of water…I also drink V-8 juice to get my veg intake for the day and at least one nutritional drink to make sure i'm keeping my nutrition on track..

      Ginger8888
      Participant

      I'm having my 3 rd infusion on the 23 rd and as of right now the only side effect i have is a little bit of fatigue in the am and very little hair loss..From what i've read is that you should report any side effects to your dr especially diahrrea if it last more than 25 hrs..I'm expecting side effects to kick in after my 3rd treatment, as far as responding with or without side effects, i think that just depends on the person getting the treatment..Good luck..Drink lot's and lot's of water…I also drink V-8 juice to get my veg intake for the day and at least one nutritional drink to make sure i'm keeping my nutrition on track..

      jogo
      Participant

      Been there.  Have you called your oncololgist?  If you haven't, stop reading this and call now.  If you are in a clinical trial, it's imperative that you notify them asap.  (If you are in a trial you probably have been asked to keep a stool log.  Keep it up.)  I was told that diahrrea was a sign that my immune system was getting in gear. Things went haywire quickly. I had a toxic reaction (ipi induced colitis) and treatment was stopped.  READ the cautions on the Yervoy information sheet you were given or the proticol document you signed if you are in a clinical trial.  Have you been given any medication for your diahrrea?  Have you been told to adjust your diet?  Follow a bland diet for now. It's possible that you may be able to continue treatment.  Because I am in a clinical trial, treatment was stopped just before my third infustion was to take place. The belief was that my immune system was engaged.  I'm still being observed even though teatment was discontinued and the maintenance part never happened.  I have been NED since June 2013 when my [metastatic] melanoma was rremoved.   I'm assuming that the ipilimumab (Yervoy) worked.  Good luck.

      jogo
      Participant

      Been there.  Have you called your oncololgist?  If you haven't, stop reading this and call now.  If you are in a clinical trial, it's imperative that you notify them asap.  (If you are in a trial you probably have been asked to keep a stool log.  Keep it up.)  I was told that diahrrea was a sign that my immune system was getting in gear. Things went haywire quickly. I had a toxic reaction (ipi induced colitis) and treatment was stopped.  READ the cautions on the Yervoy information sheet you were given or the proticol document you signed if you are in a clinical trial.  Have you been given any medication for your diahrrea?  Have you been told to adjust your diet?  Follow a bland diet for now. It's possible that you may be able to continue treatment.  Because I am in a clinical trial, treatment was stopped just before my third infustion was to take place. The belief was that my immune system was engaged.  I'm still being observed even though teatment was discontinued and the maintenance part never happened.  I have been NED since June 2013 when my [metastatic] melanoma was rremoved.   I'm assuming that the ipilimumab (Yervoy) worked.  Good luck.

      jogo
      Participant

      Been there.  Have you called your oncololgist?  If you haven't, stop reading this and call now.  If you are in a clinical trial, it's imperative that you notify them asap.  (If you are in a trial you probably have been asked to keep a stool log.  Keep it up.)  I was told that diahrrea was a sign that my immune system was getting in gear. Things went haywire quickly. I had a toxic reaction (ipi induced colitis) and treatment was stopped.  READ the cautions on the Yervoy information sheet you were given or the proticol document you signed if you are in a clinical trial.  Have you been given any medication for your diahrrea?  Have you been told to adjust your diet?  Follow a bland diet for now. It's possible that you may be able to continue treatment.  Because I am in a clinical trial, treatment was stopped just before my third infustion was to take place. The belief was that my immune system was engaged.  I'm still being observed even though teatment was discontinued and the maintenance part never happened.  I have been NED since June 2013 when my [metastatic] melanoma was rremoved.   I'm assuming that the ipilimumab (Yervoy) worked.  Good luck.

      lbkimball
      Participant

      I did one Yervoy infusion and had some diarrhea and it wasn't a big deal. it's expected to have some. You should definitely notify your oncologist but I doubt they'd stop your treatment. It's when things get serious and colitis erupts and makes you very, very sick that they consider stopping treatment. If it's tolerable, you should stick with it. I was actually hoping to "fail" Yervoy so that I could get into the PD1 expanded access program, which I did, and start tomorrow. Best of luck to you. Please keep us posted on what your doctor recommends.

      lbkimball
      Participant

      I did one Yervoy infusion and had some diarrhea and it wasn't a big deal. it's expected to have some. You should definitely notify your oncologist but I doubt they'd stop your treatment. It's when things get serious and colitis erupts and makes you very, very sick that they consider stopping treatment. If it's tolerable, you should stick with it. I was actually hoping to "fail" Yervoy so that I could get into the PD1 expanded access program, which I did, and start tomorrow. Best of luck to you. Please keep us posted on what your doctor recommends.

        Marianne quinn
        Participant

        My husband was in a clinical trial and completed the induction phase of 10 mg yervoy. He did have diarrhea but he was able to control it by eliminating foods by trial and error. He cannot eat whole wheat bread, Thai food, popcorn, and cannot drink milk but can eat yogurt, cheese' etc. he uses soy milk. Rice and chicken are a staple. Bananas and applesauce are helpful. Be sure to have immodium on hand and do not have more than 3 loose stools before you take it. Calcium carbonate (tums) is useful if your stools start to get loose. When it first started and the cramping was bad, he took a Vicodin that was prescribed for him after his lymphendectomy. Hang in there and it is manageable.?

        Marianne quinn
        Participant

        My husband was in a clinical trial and completed the induction phase of 10 mg yervoy. He did have diarrhea but he was able to control it by eliminating foods by trial and error. He cannot eat whole wheat bread, Thai food, popcorn, and cannot drink milk but can eat yogurt, cheese' etc. he uses soy milk. Rice and chicken are a staple. Bananas and applesauce are helpful. Be sure to have immodium on hand and do not have more than 3 loose stools before you take it. Calcium carbonate (tums) is useful if your stools start to get loose. When it first started and the cramping was bad, he took a Vicodin that was prescribed for him after his lymphendectomy. Hang in there and it is manageable.?

        Marianne quinn
        Participant

        My husband was in a clinical trial and completed the induction phase of 10 mg yervoy. He did have diarrhea but he was able to control it by eliminating foods by trial and error. He cannot eat whole wheat bread, Thai food, popcorn, and cannot drink milk but can eat yogurt, cheese' etc. he uses soy milk. Rice and chicken are a staple. Bananas and applesauce are helpful. Be sure to have immodium on hand and do not have more than 3 loose stools before you take it. Calcium carbonate (tums) is useful if your stools start to get loose. When it first started and the cramping was bad, he took a Vicodin that was prescribed for him after his lymphendectomy. Hang in there and it is manageable.?

        BetterAndBetter
        Participant

        Is it necessary to be a non-responder to Yervoy in order to get into the expanded access PD-1 program?  I took my first dose of Yervoy yesterday and was hoping to participate in the Merck program also, following treatment.  Thanks!

        BetterAndBetter
        Participant

        Is it necessary to be a non-responder to Yervoy in order to get into the expanded access PD-1 program?  I took my first dose of Yervoy yesterday and was hoping to participate in the Merck program also, following treatment.  Thanks!

        BetterAndBetter
        Participant

        Is it necessary to be a non-responder to Yervoy in order to get into the expanded access PD-1 program?  I took my first dose of Yervoy yesterday and was hoping to participate in the Merck program also, following treatment.  Thanks!

      lbkimball
      Participant

      I did one Yervoy infusion and had some diarrhea and it wasn't a big deal. it's expected to have some. You should definitely notify your oncologist but I doubt they'd stop your treatment. It's when things get serious and colitis erupts and makes you very, very sick that they consider stopping treatment. If it's tolerable, you should stick with it. I was actually hoping to "fail" Yervoy so that I could get into the PD1 expanded access program, which I did, and start tomorrow. Best of luck to you. Please keep us posted on what your doctor recommends.

      RJoeyB
      Participant

      Most important is for you to communicate even the smallest changes to your doctor, the earlier the better so they can be treated and dealt with before they become an issue.  In general, I think many have a double-edged fear that if they report a side-effect that it will mean stopping treatment without getting a full course.  Diarrhea, for example, isn't something you can just tough out and power through on your own; if it escalates it can become serious enough to stop treatment, but addressed early, there's a better chance of managing it and being able to continue treatment.

      i dealt with some mildly loose stools and made sure they knew.  We kept a close watch and communicated regularly and it never got in the way of a single infusion.  I also had some rash on my torso and midsection, some of which may have been more a result of summer heat and folliculitis, perhaps made worse by the Yervoy.  Again, we stayed on top of it with the doctor and it didn't worsen.  My biggest side effect was fatigue that usually started the afternoon after each infusion.  It wasn't debilitating, good naps in the days after helped.  And it was cumulative, so I felt I was a little more tired and it lasted a few more days after the third dose than the second dose, etc.

      Theoretically, it would seem to make sense that the onset of any immune-related side-effects would be an indicator of a better response, and that's easy to get hung up on.  The same goes for the anti-PD-1 drugs, Interleukin-2, and other immunotherapy approaches.  But there are many examples of disease responses to treatment with few or no other side effects and others who have terrible side effects, but no disease response.  Because the side effects vary from person to person — heck, a disease response itself could be simply categorized as "just another side effect", albeit an important one — the only one that matters is the response of melanoma to Yervoy. 

      Best,

      Joe

       

      RJoeyB
      Participant

      Most important is for you to communicate even the smallest changes to your doctor, the earlier the better so they can be treated and dealt with before they become an issue.  In general, I think many have a double-edged fear that if they report a side-effect that it will mean stopping treatment without getting a full course.  Diarrhea, for example, isn't something you can just tough out and power through on your own; if it escalates it can become serious enough to stop treatment, but addressed early, there's a better chance of managing it and being able to continue treatment.

      i dealt with some mildly loose stools and made sure they knew.  We kept a close watch and communicated regularly and it never got in the way of a single infusion.  I also had some rash on my torso and midsection, some of which may have been more a result of summer heat and folliculitis, perhaps made worse by the Yervoy.  Again, we stayed on top of it with the doctor and it didn't worsen.  My biggest side effect was fatigue that usually started the afternoon after each infusion.  It wasn't debilitating, good naps in the days after helped.  And it was cumulative, so I felt I was a little more tired and it lasted a few more days after the third dose than the second dose, etc.

      Theoretically, it would seem to make sense that the onset of any immune-related side-effects would be an indicator of a better response, and that's easy to get hung up on.  The same goes for the anti-PD-1 drugs, Interleukin-2, and other immunotherapy approaches.  But there are many examples of disease responses to treatment with few or no other side effects and others who have terrible side effects, but no disease response.  Because the side effects vary from person to person — heck, a disease response itself could be simply categorized as "just another side effect", albeit an important one — the only one that matters is the response of melanoma to Yervoy. 

      Best,

      Joe

       

      RJoeyB
      Participant

      Most important is for you to communicate even the smallest changes to your doctor, the earlier the better so they can be treated and dealt with before they become an issue.  In general, I think many have a double-edged fear that if they report a side-effect that it will mean stopping treatment without getting a full course.  Diarrhea, for example, isn't something you can just tough out and power through on your own; if it escalates it can become serious enough to stop treatment, but addressed early, there's a better chance of managing it and being able to continue treatment.

      i dealt with some mildly loose stools and made sure they knew.  We kept a close watch and communicated regularly and it never got in the way of a single infusion.  I also had some rash on my torso and midsection, some of which may have been more a result of summer heat and folliculitis, perhaps made worse by the Yervoy.  Again, we stayed on top of it with the doctor and it didn't worsen.  My biggest side effect was fatigue that usually started the afternoon after each infusion.  It wasn't debilitating, good naps in the days after helped.  And it was cumulative, so I felt I was a little more tired and it lasted a few more days after the third dose than the second dose, etc.

      Theoretically, it would seem to make sense that the onset of any immune-related side-effects would be an indicator of a better response, and that's easy to get hung up on.  The same goes for the anti-PD-1 drugs, Interleukin-2, and other immunotherapy approaches.  But there are many examples of disease responses to treatment with few or no other side effects and others who have terrible side effects, but no disease response.  Because the side effects vary from person to person — heck, a disease response itself could be simply categorized as "just another side effect", albeit an important one — the only one that matters is the response of melanoma to Yervoy. 

      Best,

      Joe

       

      LuckyMan51
      Participant

      As other respondents noted its critical to keep your Oncologist aware of any changes you see so they can respond and nip any adverse effects in the bud. I too had similar mild gastric issue but as per Dr's recommendation tried Imodium over the counter which successfully got me back on trac and I finished the treatment cycle. I did have a backup script for a steroid but never had a recurrance so use wasn't warranted.  That and some itching. Good luck. 

      LuckyMan51
      Participant

      As other respondents noted its critical to keep your Oncologist aware of any changes you see so they can respond and nip any adverse effects in the bud. I too had similar mild gastric issue but as per Dr's recommendation tried Imodium over the counter which successfully got me back on trac and I finished the treatment cycle. I did have a backup script for a steroid but never had a recurrance so use wasn't warranted.  That and some itching. Good luck. 

      LuckyMan51
      Participant

      As other respondents noted its critical to keep your Oncologist aware of any changes you see so they can respond and nip any adverse effects in the bud. I too had similar mild gastric issue but as per Dr's recommendation tried Imodium over the counter which successfully got me back on trac and I finished the treatment cycle. I did have a backup script for a steroid but never had a recurrance so use wasn't warranted.  That and some itching. Good luck. 

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