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Opdivo or Yervoy and Diarrhea

Forums General Melanoma Community Opdivo or Yervoy and Diarrhea

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    nikkibeesley00
    Participant

      Hi Guys, just wanted to get this out there because I had a lot of trouble locating this information. I am currently receiving Opdivo and had severe diarrhea and stomach issues with it. My oncologist put me on steriods but everytime I came off the symptoms returned, until a nurse friend of mine suggested trying Immodium! It worked!!!! I take two immodium bascially every 24 hours, a third if needed, and I'm great! I can eat and drink anything I want and my oncologist is A-OKAY with this! 

      Some background on me: I am Stage 3B, first diagnosed in Oct. 2014 with melanoma in my parotid gland (neck behind ear), I had the gland removed along with a neck dissection to remove all lymph nodes which came back clean. We did 25 rounds of radiation just to be sure. Thought we were in the clear when in April of 2015 I woke up with facial paralysis on the right side. ER doctors thought it was just Bells Palsy but because of my history did a CT just to be sure. Low and behold the melanoma had spread to my brain and was bleeding. A crainitomy later I was feeling great, slowly my smile came back and all was right with the world. I did one round of gamma knife radiation and flew off to London and Spain to celebrate! Once in Europe I became serisouly ill and couldn't eat or drink anything. I quickly lost weight and was getting sick all the time. I came back to the USA and underwent both a upper and lower endoscopy. They located a polyp and removed it and sent me home. After an uncomfortable 24 hours I went back to the ER where they found A LOT of air trapped in my chest and knew the perforated my bowel. With the fear of a colonostomy bag in my future a wonderful surgeon was able to repair my perforated bowel but also found several large tumors requiring him to remove 20 and 30 cm of my small and large instestines. I've since healed and had 10 treatments of Opdivo, with the only side effect being the diarrhea. At first it was 6,7,8,9,10 times a day, anytime I came off steriods. On the random advice of my friend in nursing school with no Oncolgy experience I took immodium and BAM! it worked! I really hope this helps some other people out there on Opdivo or Yervoy. From what my oncologist has said the diarrhea can be even worse on Yervoy. But perhaps the immodium can help just the same for any folks on that medication. Also one last piece of advice I prefer the CVS or Walmart brand gel caps, they are 1. cheaper (wooohooo!) and 2. the name brand dissolves in your mouth immediatly and it chokes you going down leaving a horrible taste in your mouth, so just a quick FYI there! Hope this helps someone else out there! 

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