The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Yervoy reactions vs. Viral infection

Forums General Melanoma Community Yervoy reactions vs. Viral infection

  • Post
    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
        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. 

            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

              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
                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
                  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
                    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

                      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

                      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. 

                        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. 

                          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.

                            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.

                              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.

                            Viewing 5 reply threads
                            • You must be logged in to reply to this topic.
                            About the MRF Patient Forum

                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.