Ipilimumab nightmare
REGISTER
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.

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.

Viewing 3 reply threads
  • 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).

Viewing 3 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.

Popular Topics