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Yervoy/Ipilumimab long term side effects
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Yervoy/Ipilumimab long term side effects

› Forums › General Melanoma Community › Yervoy/Ipilumimab long term side effects

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    • July 23, 2019 at 10:17 am
    JulesFout
    Participant
      Hello! I am looking for anyone who had side effects from yervoy /ipilumimab. I was diagnosed with vulvar melanoma back in fall of 2017. I had 2 lymph nodes removed. I am considered stage III for treatment, but had a couple of scares of it entering my brain and lungs. The brain nodule has resolved and the lung nodules may be from adverse side effects of yervoy. They have not made a complete crossover to stage IV. We will see how the next few months go.
      After my first 2 rounds of Yervoy my liver enzymes went very high and we had to stop treatment. I got many infections and had a very rough year. It is 2019 and I now battle asthma. Not sure what all happened to me. They sent me to a cardiologist, pulminologost, gastroenterologist, endrconologist etc… I haven’t been hospitalized, but made several ER visits due to symptoms that could involve lungs or heart. ER always send me out with everything non-life threatening, however I would like to know what is going on and if this is long term. Anyone out there still battling long term side effects from Yervoy /ipilumimab. All the sickness and fatigue has caused me not to be able to work full-time. I am now 35 and a teacher. I would like to get back to it.
      I am now on a BRAF inhibitor tafinlar /debrafinib. It has it’s own issues.
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        • July 23, 2019 at 1:02 pm
        Hukill
        Participant
          I had 5 combo and 52 nivo with the last one in August of 2018. Lots of side effects but none serious enough to stop treatment. The fatigue is horrible and controls my life. All I do is go to work and lay in bed. Insomnia will not let me sleep and I have been prescribed every sleep aide and nothing works. Thyroid still not working, vitiligo is still spreading, potassium, sodium and chloride are still low on every lab even on prescription potassium.
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