Ipilimumab nightmare
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Ipilimumab nightmare

› Forums › General Melanoma Community › Ipilimumab nightmare

  • Post
    • May 31, 2017 at 10:12 pm
    Hriggenbach
    Participant

    I went with ipilimumab to get stander of care to prevent any scary issues being when I had my groin lymph nodes removed my femoral artery cut causing severe nerve damage leaving me to using a walker still. After my second dose of ipilimumab I had severe diarrhea 35 a day was admitted to Ohio State for 30 days got down to 12 a day was released. Had thrush to the point I couldn't eat or drink 5 more days in the hospital. Got pneumonia 6 more days in the hospital. I'm now on week 8 and I'm down to 5 diarrhea a day. I went to my  oncologist today and I'm being told once I get to 3 diarrhea we will start cutting my steroids down by 5 a day I'm on 200 mg and u can't  recognize me my face is so swelled.

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  • Replies
      • June 1, 2017 at 12:31 am
      Ridingaroundwith27Jennifers
      Participant

      I'm sorry you are going through this.  I was on Ipi/Nivo combo and had complications.  I was on 120mg prednisone twice a day for two months before we could taper down.  I could literally feel my face swelling sometimes.  I can completely sympathize with you on the steriod side effects.  It will get better.  They will get your auto-immune symptoms under control and then get you off the steriods.  Good wishes to you.

      Jennifer

      • June 1, 2017 at 1:11 pm
      UBContributor
      Participant

      Reading posts here, I understood tolerance to Ipi gets better after few shots. Also, some people seem to tolerate so well. Wishing you best of luck.   

      • June 1, 2017 at 6:07 pm
      Hriggenbach
      Participant

      I do understand most people won't experience what I have but I wanted to share what could happen just because when I was making my decision as to what treatment to take there wasn't a lot on here as to what happens when things do go wrong. I would have probably still made the same choice for treatment but I would have preferred more information from the start.

        • June 1, 2017 at 8:38 pm
        cancersnewnormal
        Participant

        Ho-ly wow! You have one very fiesty immune system! It's good that you shared the downside of what can happen. We all hope for the best, but it's not a bad thing to be prepared for the "what if all hell breaks loose". Hopefully you'll be feeling better soon and can start that steroid taper. Not a fan of those pills… not a fan at all!

        • June 2, 2017 at 1:43 am
        miaka618
        Participant

        You can say that again! 

        My steroids also included a puffy face with a side of really bad acne, but I wasn't on it nearly as long.

      • June 4, 2017 at 1:41 am
      MovingOn
      Participant

      How did you all have the dose and duration determined?

      I have Ipi induced sinusitis (headache with inflamed sinuses, proven via CT scan) and hypophysitis (pituitary swelling to double its normal size, proven via MRI). I was prescribed 60mg of prednisone tapering by 10mg every 6th day. I'm now down to 10mg and my sinus headaches are back (but not nearly as bad). I don't know what is going on with my pituitary because I won't get another MRI for at least 6 more weeks. I'm in contact with my Melanoma specialist and will ask if I should go back up to 20mg of prednisone in order to keep the headaches away (or if I should use some other headache/sinus specific meds – but I'm taking allergy meds with ibuprofen and they don't seem to do anything for the headache).

        • June 4, 2017 at 1:42 am
        MovingOn
        Participant

        By 'dose and duration' I was referring to prednisone dose and duration. (I just realized that I wasn't clear in my post).

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