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Nivo induced colitis/ treatment stopped
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Nivo induced colitis/ treatment stopped

› Forums › General Melanoma Community › Nivo induced colitis/ treatment stopped

  • Post
    • May 22, 2017 at 1:38 pm
    Mamapegela
    Participant

      I have stage 4, mets to lungs.  Started Ipi/Nivo in December but only had one dose before my thyroid gland was inflammed and destroyed.  My team decided that I should go to just Nivo after that, but now after 5 nivo treatments I have colitis (lymphocytic colitis diagnosed by biopsies during a sigmoidoscopy).  They tried budesonide (steroid that is taken orally but only affects the gut- not absorded systemically) with me but it seemed to actually make symptoms worse (diarrhea, stomach upset).  I have been on treatment pause for 6 weeks.

      I have had great response with my lung mets nearly completely gone already.  My doctor now thinks that I should just stop treatment and continue with surveillance – scans every 3 months with brain MRI annually.  

      I would love to be done but I am nervous about stopping.  What are some experiences others have had – do your docs stop treatment when it seems the cancer is responding and the side effects are outweighing the benefit, or do they still treat and give more aggressive steroids?

      Thanks for input!

      Peggy

       

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        • May 23, 2017 at 1:15 pm
        AliCat61
        Participant

          I'm so sorry. I don't really have any advice for dealing with the colitis. My husband has been blessed and has thus far had 3/4 out the combo treatments with none of the digestive dress that is so common. I did some research early on before starting the treatment and found that studies indicate that those with the most diverse gut bacteria, benefit the most with fewer side effects. We voluntarily gave up sugar, alcohol, red meat, and almost all prepared foods. We increased our intake of fruits, vegetables, and fermented foods like yogurt, buttermilk, sourkraut, etc, and he takes a pro-biotic daily. I can't swear that it helped. Perhaps we were just luckly but it's something you might want to consider.Perhaps you could stop the medication temporarily, and try to get your digestive system healthy and try again a later date? Prayers for you. 

          • May 23, 2017 at 2:07 pm
          UBContributor
          Participant

            I think I read quite few times here that people would stop the treatment earlier than was initially planned and go on with regular checks only. Good luck and keep us updated! 

            • May 23, 2017 at 3:36 pm
            Mat
            Participant

              When I had ipi-induced colitis I was on both prednisone (high does) and budesonide.  If you still have symptoms, I would ask for prednisone.  Pausing the treatment in order for the colitis to resolve is appropriate.

              • May 24, 2017 at 10:00 am
              Mamapegela
              Participant

                I already am a vegetarian and do not drink alcohol, avoid most processed foods, have been taking probiotics prior to my diagnosis.  I have cut way back on sugar ( I do have a sweet tooth!) eat greek yogurt, fermented foods and drink lots of water.  Prior to these issues I had no GI problems at atll.

                I will ask my doctor this friday about the prednisone.  Again it is an issue of risk vs benefit, and I know prednisone carries it's own side effects. 

                Thank you for your responses.

                 

                 

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