MRF-Logo2019-Horizontal-RGB
Immune Therapy Colitis
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.

Immune Therapy Colitis

› Forums › General Melanoma Community › Immune Therapy Colitis

  • Post
    • June 28, 2018 at 11:35 pm
    Coach2u
    Participant

      I have had a tough couple of weeks. Developed colitis as a result if lpi/nivo and in and out of hospital twice. Lost 15 lbs and now on major steroids but they may not be doing the trick. They are talking recimade which has so many scary side effects. Does anyone know about this treatment? Having a tough time. MIke K.

    Viewing 5 reply threads
    • Replies
        • June 29, 2018 at 1:28 am
        sister of patient
        Participant

          Hi Mike – sorry to hear you're having a rough time of it. I don't have anything to share on colitis but tedtell1 has recently posted about it – maybe you fellas can compare info. Here's the link to his post – https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/infliximabremicade – hope the steroids kick in and work for you. Best wishes!

          Barb

          • June 29, 2018 at 3:50 pm
          2Kathy
          Participant

            I am delaing with the same thing. I had one round of ipi/nivo and within 4 days, it had sent me into hyperthyrodism. Another 10 days and I started having diarrhea this past Sunday and Monday and I went in for an appointment Monday afternoon, got diagnosed with colitis and stayed in the hospital for 2 nights. It was caught very early but I'm still on a ton of streroids. I'm not counting my chickens yet but things have imprved a lot intestinally. That's the end of combo treatment for me, one and done, my body just can't handle it. 

            I am also interested in recimade, I;ve seen that mentioned elsewhere as treatment for colitis if the steriods don't do it. 

            Hope you're feeling better soon from this. 

            • June 29, 2018 at 8:28 pm
            obtu.bt
            Participant
              Dear Mike,
              I know here people would move with more scientifique related results however while I was using yervoy I had also colitis problem and steroids could not stop it. Then I start to eat about 3gr of thuja and it helped me a lot.
              • June 30, 2018 at 2:04 pm
              bjeans
              Participant

                So sorry you’re going through this, Mike. I hope the new medicine does the trick without side effects if you’re put on it. Report back here how it goes for you, okay?

                My husband’s doctor called in prednisone a few minutes ago due to blood in stools and ongoing diarrhea. He had an appointment yesterday and his infusion was again delayed. While a recent CT scan didn’t show colitis, that’s now the working assumption. He’s in a study with either nivo/ipi (lower dose ipi) or just nivo, and everyone thinks it’s the nivo/ipi arm. 

                Hang in there. 

                • July 1, 2018 at 11:24 pm
                Harley Worthet
                Participant

                  HI Mike. 

                  I hit the same wall, seemingly incurable, chronic, ulcerative colitis broight on by 2 Ipi sessions. Knocked me so low I spent 3 months out of work, & nothing they tried seemed to work.

                  What DID finally work was a double dose of Remicade. (280 mg) Not the 120 mg/day of Prednisone, not even several standard doses of Remicade over several hospital visits.  So in my world Remecade & its generic (Infliximab) is a Godsend. I still need to add it to my immunotherapy regimen every 2 months or so to keep the diarhea at bay. 

                  Of course everybody's metabolism reacts differently, so pls talk to an upper GI Specialist about your situation first. But every Dr I've spoken with here had nothing but praise for Remicade. And come on back to let us know how you're doing. 

                  Best wishes, 

                  Mike B

                    • July 2, 2018 at 4:54 am
                    obtu.bt
                    Participant
                      Dear Mike, so you got just 2 doses of yervoy. I then have you start to opdivo or keytruda?
                      • July 3, 2018 at 5:46 am
                      Harley Worthet
                      Participant

                        Hi Obtu.

                        My apologies, I've been trying to answer your question for several days but the 'reply' page just wouldn't load. I've only made a few posts so might be missing something.  But yeah, they've got me on Opdivo, standard dose every 2 weeks. It's not working for me, I've progressed to stage 4. (Mets to neck, lungs & extremeties) So they're going to test genetic markers & look for plan B. For me, Nivo is a sweetheart compared to Ipi; I can go to work every day & the only side effect is a little fatigue after each infusion. Hopefully it will work better for you if you go that route.

                        Best wishes,

                        Mike B.

                        • July 3, 2018 at 2:46 pm
                        Coach2u
                        Participant

                          Thanks MIke my original doc would not use remicade so after two separate stays in hospital switched docs. Less that 4 hours diarrhea stopped. Probably  need another dose in a week or two. Lost 25 lbs and did not need to so trying to get some weight back. Still week and on a smaller dose of steroids but hope to get off that soon. Feel ok but tired and somewhat weak. Got to get better so I can continue the fight. This all started 10 days after the second dose of lpi/ MIke K.

                          • July 5, 2018 at 3:00 pm
                          bjeans
                          Participant

                            So glad you’re doing better. Kinds of surprised doc #1 wouldn’t prescribe remicade, given your situation. How many people would not have advocated for themselves and switched doctors? Good job! 

                            Beth

                          • July 6, 2018 at 1:18 pm
                          Rexpo
                          Participant

                            I deveolped colitis 10 days after my first treatment of yervoy/opdivo

                            I tried remicade, it did not work.  On steroids for 2 months.  It did not work

                              I spent 3 weeks in the hospital, then had a colectomy, removed almost my entire colon.  Other than having an ileostimy, my life has returned to normal after about 6 weeks post surgery.  I lost 38 lbs in the process and put all of that weight back on.

                              • July 6, 2018 at 2:51 pm
                              Coach2u
                              Participant

                                You win, much worse than mine. But now where are you with the cancer? Glad you recovered. MIke K.

                          Viewing 5 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