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Yervoy reactions vs. Viral infection
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Yervoy reactions vs. Viral infection

› Forums › General Melanoma Community › Yervoy reactions vs. Viral infection

  • Post
    • February 27, 2013 at 2:47 am
    ncdaniel
    Participant

      My wife has been fighting diahrea and not feeling well three weeks after her first treatment. Called Doctor and told to monitor her. Has any one had experience sorting the difference between viral symptoms and Yervoy reactions. They both have the same side effects and since viral things are going around how can you tell?

      My wife has been fighting diahrea and not feeling well three weeks after her first treatment. Called Doctor and told to monitor her. Has any one had experience sorting the difference between viral symptoms and Yervoy reactions. They both have the same side effects and since viral things are going around how can you tell?

    Viewing 5 reply threads
    • Replies
        • February 27, 2013 at 3:46 pm
        POW
        Participant

          When my brother started Yervoy he had a 1-hour patient education session with a pharmacist experienced with this treatment. He was told several times that most of the side effects of Yervoy can be easily managed if they are treated quickly. However, delaying proper diagnosis and treatment can result in the side effects becoming very difficult to control, especially diarrhea which can develop into colitis in as little as 3 or 4 days. My brother was told that if he had mild to moderate diarrhea (up to 4 bowel movements per day above usual) he should take Immodium per the package directions. If that did not stop the diarrhea, he should come in for more aggressive treatment. The pharmacist also warned us that many doctors don't have much (if any) experience with Yervoy. So if my brother had to go to a doctor or a hospital other than his usual melanoma treatment center, he should be sure to give the medical team the orange Yervoy "wallet card" that explains about Yervoy's side effects.

          Now this advice was for MY BROTHER and not for YOUR WIFE! Your doctor and/or pharmacist may have given you different advice and recommendations. But my point is that 1) the side effects, especially diarrhea, need to be taken seriously and treated immediately, 2) an over-the-counter medication MAY be the most appropriate initial treatment, and 3) it wouldn't matter to me if the diarrhea was viral or side effect– I would err on the side of caution and treat the diarrhea immediately. It's up to your doctor to determine what the best treatment would be for your wife. However, if I were you I would  insist that the doctor immediately prescribe some treatment to stop the diarrhea right now. And you might want to check into how much hand-on Yervoy experience your doctor has. 

            • February 27, 2013 at 5:11 pm
            Tina D
            Participant

              I just want to add my input … I completely agree with what POW has noted. I started Yervoy in December and one of the very first instructions was concerning any possible onset of diarrhea. I asked " How long after it starts should I call?"( Thinking prob a couple of days) and was informed…At the FIRST sign of it. Like POW said, if it is colitis, it can escalate very quickly. I did actually start having diarrhea last week and was immediately put on immodium and told to call if continued problems. All of the possible autoimmune responses can get very out of hand very quickly and must be so closely monitored. I am now having immune response affecting my pituitary ( this is actually a good sign – no worries) and my Dr's nurse is in touch with me by phone almost daily for updates. This Dr I see has been giving Yervoy since the early trials giving him abt 6 yrs experience with it.

              Just food for thought,

              Tina

              • February 28, 2013 at 12:37 am
              NYKaren
              Participant
                Great advice from POW & Tina.
                My experience: the first time I was on Yervoy, almost immediately started having diarrhea. My onc, who also is one of the pioneers of the drug. He prescribed Budesinide, generic for Entocort EC. It is a steroid and works only in the gut. I have since learned that some oncs prescribe this at the first sign of Ipi-induced diarrhea, some start with Imodium. For me and many others, it is a wonder drug.
                Fast forward a year. During my Yervoy reinduction (I was a partial responder the 1st time) I developed severe diarrhea that lead to colitis and hospitalization. Before being hospitalized, my doc’s nurse called every day if she didn’t hear from me first to ask every detail of my bowel movements.
                Please take heed of everyone’s advice.
                Keep us posted,
                Karen
                • February 28, 2013 at 12:37 am
                NYKaren
                Participant
                  Great advice from POW & Tina.
                  My experience: the first time I was on Yervoy, almost immediately started having diarrhea. My onc, who also is one of the pioneers of the drug. He prescribed Budesinide, generic for Entocort EC. It is a steroid and works only in the gut. I have since learned that some oncs prescribe this at the first sign of Ipi-induced diarrhea, some start with Imodium. For me and many others, it is a wonder drug.
                  Fast forward a year. During my Yervoy reinduction (I was a partial responder the 1st time) I developed severe diarrhea that lead to colitis and hospitalization. Before being hospitalized, my doc’s nurse called every day if she didn’t hear from me first to ask every detail of my bowel movements.
                  Please take heed of everyone’s advice.
                  Keep us posted,
                  Karen
                  • February 28, 2013 at 12:37 am
                  NYKaren
                  Participant
                    Great advice from POW & Tina.
                    My experience: the first time I was on Yervoy, almost immediately started having diarrhea. My onc, who also is one of the pioneers of the drug. He prescribed Budesinide, generic for Entocort EC. It is a steroid and works only in the gut. I have since learned that some oncs prescribe this at the first sign of Ipi-induced diarrhea, some start with Imodium. For me and many others, it is a wonder drug.
                    Fast forward a year. During my Yervoy reinduction (I was a partial responder the 1st time) I developed severe diarrhea that lead to colitis and hospitalization. Before being hospitalized, my doc’s nurse called every day if she didn’t hear from me first to ask every detail of my bowel movements.
                    Please take heed of everyone’s advice.
                    Keep us posted,
                    Karen
                    • February 27, 2013 at 5:11 pm
                    Tina D
                    Participant

                      I just want to add my input … I completely agree with what POW has noted. I started Yervoy in December and one of the very first instructions was concerning any possible onset of diarrhea. I asked " How long after it starts should I call?"( Thinking prob a couple of days) and was informed…At the FIRST sign of it. Like POW said, if it is colitis, it can escalate very quickly. I did actually start having diarrhea last week and was immediately put on immodium and told to call if continued problems. All of the possible autoimmune responses can get very out of hand very quickly and must be so closely monitored. I am now having immune response affecting my pituitary ( this is actually a good sign – no worries) and my Dr's nurse is in touch with me by phone almost daily for updates. This Dr I see has been giving Yervoy since the early trials giving him abt 6 yrs experience with it.

                      Just food for thought,

                      Tina

                      • February 27, 2013 at 5:11 pm
                      Tina D
                      Participant

                        I just want to add my input … I completely agree with what POW has noted. I started Yervoy in December and one of the very first instructions was concerning any possible onset of diarrhea. I asked " How long after it starts should I call?"( Thinking prob a couple of days) and was informed…At the FIRST sign of it. Like POW said, if it is colitis, it can escalate very quickly. I did actually start having diarrhea last week and was immediately put on immodium and told to call if continued problems. All of the possible autoimmune responses can get very out of hand very quickly and must be so closely monitored. I am now having immune response affecting my pituitary ( this is actually a good sign – no worries) and my Dr's nurse is in touch with me by phone almost daily for updates. This Dr I see has been giving Yervoy since the early trials giving him abt 6 yrs experience with it.

                        Just food for thought,

                        Tina

                      • February 27, 2013 at 3:46 pm
                      POW
                      Participant

                        When my brother started Yervoy he had a 1-hour patient education session with a pharmacist experienced with this treatment. He was told several times that most of the side effects of Yervoy can be easily managed if they are treated quickly. However, delaying proper diagnosis and treatment can result in the side effects becoming very difficult to control, especially diarrhea which can develop into colitis in as little as 3 or 4 days. My brother was told that if he had mild to moderate diarrhea (up to 4 bowel movements per day above usual) he should take Immodium per the package directions. If that did not stop the diarrhea, he should come in for more aggressive treatment. The pharmacist also warned us that many doctors don't have much (if any) experience with Yervoy. So if my brother had to go to a doctor or a hospital other than his usual melanoma treatment center, he should be sure to give the medical team the orange Yervoy "wallet card" that explains about Yervoy's side effects.

                        Now this advice was for MY BROTHER and not for YOUR WIFE! Your doctor and/or pharmacist may have given you different advice and recommendations. But my point is that 1) the side effects, especially diarrhea, need to be taken seriously and treated immediately, 2) an over-the-counter medication MAY be the most appropriate initial treatment, and 3) it wouldn't matter to me if the diarrhea was viral or side effect– I would err on the side of caution and treat the diarrhea immediately. It's up to your doctor to determine what the best treatment would be for your wife. However, if I were you I would  insist that the doctor immediately prescribe some treatment to stop the diarrhea right now. And you might want to check into how much hand-on Yervoy experience your doctor has. 

                        • February 27, 2013 at 3:46 pm
                        POW
                        Participant

                          When my brother started Yervoy he had a 1-hour patient education session with a pharmacist experienced with this treatment. He was told several times that most of the side effects of Yervoy can be easily managed if they are treated quickly. However, delaying proper diagnosis and treatment can result in the side effects becoming very difficult to control, especially diarrhea which can develop into colitis in as little as 3 or 4 days. My brother was told that if he had mild to moderate diarrhea (up to 4 bowel movements per day above usual) he should take Immodium per the package directions. If that did not stop the diarrhea, he should come in for more aggressive treatment. The pharmacist also warned us that many doctors don't have much (if any) experience with Yervoy. So if my brother had to go to a doctor or a hospital other than his usual melanoma treatment center, he should be sure to give the medical team the orange Yervoy "wallet card" that explains about Yervoy's side effects.

                          Now this advice was for MY BROTHER and not for YOUR WIFE! Your doctor and/or pharmacist may have given you different advice and recommendations. But my point is that 1) the side effects, especially diarrhea, need to be taken seriously and treated immediately, 2) an over-the-counter medication MAY be the most appropriate initial treatment, and 3) it wouldn't matter to me if the diarrhea was viral or side effect– I would err on the side of caution and treat the diarrhea immediately. It's up to your doctor to determine what the best treatment would be for your wife. However, if I were you I would  insist that the doctor immediately prescribe some treatment to stop the diarrhea right now. And you might want to check into how much hand-on Yervoy experience your doctor has. 

                          • February 28, 2013 at 2:45 am
                          ncdaniel
                          Participant

                            Thanks to all who provided good sound advice. I took my wife to the Cancer treatment center today and they gave her IV fluids put her on steriods and she is already doing better. The best advice is make sure your healthcare person has experience with Yervoy.

                            • February 28, 2013 at 2:45 am
                            ncdaniel
                            Participant

                              Thanks to all who provided good sound advice. I took my wife to the Cancer treatment center today and they gave her IV fluids put her on steriods and she is already doing better. The best advice is make sure your healthcare person has experience with Yervoy.

                              • February 28, 2013 at 2:45 am
                              ncdaniel
                              Participant

                                Thanks to all who provided good sound advice. I took my wife to the Cancer treatment center today and they gave her IV fluids put her on steriods and she is already doing better. The best advice is make sure your healthcare person has experience with Yervoy.

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