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Infliximab: anyone experienced?
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Infliximab: anyone experienced?

› Forums › General Melanoma Community › Infliximab: anyone experienced?

  • Post
    • August 19, 2019 at 6:48 am
    NewEra
    Participant
      I’m on my Eighth Day in the hospital due to severe colitis after my second ipi/nivo injection.

      Team of Kaiser Drs are NOT mel specialists, (insert rant re: KP incompetence here) and are treating me as if I had Chrones/colitus, and not an immuno therapy adverse event. Trying different doses of prednisone and anti diarrheals. I have refused another med change, and am insisting the follow the protocol, which is infliximab… an immuno surpressant.

      Wondering if anyone else has experienced this, and if so, did the infliximab work on the colitis? Did it counteract the ipi/nivo and prevent it from getting at the tumors? My reaction has excluded me from continuing immuno sessions, so Im not sure if it is good to counter what I did get. Genetic testing for BRAF is due back next week.

      Any input welcome.

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    • Replies
        • August 19, 2019 at 12:52 pm
        kst
        Participant
          I ended up in the hospital for a few days from AE’s related to Nivo only monotherapy. Because I had myocarditis along with colitis they withheld infliximab for several days until my heart inflammation went down and I only received high dose steroids. They gave me infliximab after 7 days and the colitis disappeared completely within a few hours.
          Susanne
            • August 19, 2019 at 2:24 pm
            NewEra
            Participant
              Thanks so much for your reply!

              I don’t have any other underlying conditions I just can’t understand why they won’t go down this path except for the fact that they’re scared to death and never treated a patient like me before

              I’m strongly advocating to get a referral to Hopkins and get away from these Kaiser folks

            • August 19, 2019 at 7:29 pm
            MelanomaMike
            Participant
              What!!!!??? Your in the hospital? I thought you where doing good? Youve been posting and i didnt see anything about it!! My bad if i missed a post or two, i try to read everyones post AND replys to posts…Well thats not a good situation, dont get me started on Kaiser, you already know my last “Referral” beef i had trying to get one for Dr. Hamid DENIED! ….but i digress…so Predisone is out the question? I thought that was the “Go To” fixer for Colitis?? I was fortunet to not get colitis during my Ipi/Nivo or Pembro treatments, had other problems but not that…so how much longer are you in Jail? (Haha.) You have to get yer butt home soon…so your done with the combo? Or just taking a break? You have to keep going NewEra! I mean, as long as you can take control of the Colitis of course…damn! Im truelly sorry for the bs, im sure your Oncologist knows your in the hospital right? Keep us posted, damn!
                • August 20, 2019 at 9:25 am
                NewEra
                Participant
                  Today is day number 9! Well day 9 in the hospital day number 14 of diarrhea.

                  Yesterday they finally gave me the inflximab around 5:00. I’ve had eight stools since then so it doesn’t look like it’s even working.

                  Oncos say I can’t continue immuno treatments after this so we’re hoping that the BRAF testing comes back positive so I’ll have at least another course of action.

                  Both of my tumors resectable -under 2mm each or were at the last measure. One is a lymph node – easy to get at – the other ones a lung nodule small enough to remove without taking half the lung.

                  They weren’t going to go to surgery until they saw if treatments were working so I’m not exactly sure what the next steps would be but they won’t do anything until they can fix the diarrhea and nothing seems to be helping,

                • August 21, 2019 at 12:26 am
                Carlsbad317
                Participant
                  My dad has severe colitis from the Ipi/Nivo combo. Huntsman In Utah called it severe toxicity. His diarrhea most the time is of a water consistency and we cheer when it’ looks like pudding! He has been hospitalized twice and the only thing that has really helped control it is high doses of steroids- typically 80mg. Then a slow weaning process – and we have not found a balance. He has had 9 treatments of
                  Remecade and entivio – which are like inflixmaub- they run about every two weeks to three weeks.. But again the steroids are what keep it somewhat in control.
                  The downside is the swelling and water retention makes moving damn near impossible- this last he got weeping edema from the laying in the hospital for 13 days while the house doctors tried to fix the diarrhea- they did not want to take immunotherapy as the reason. They love to say c diff..
                  good luck to you- I know not much help- but understand!
                    • August 21, 2019 at 10:13 am
                    NewEra
                    Participant
                      I’ve been following your posts closely as it seems your father and I have very similar situations. I had the infliximab 2 days ago and while it seems to have slowed frequency I still have diarrhea. Been in the hospital 11 days now and the doctors took seven or eight of those days to decide that I needed the damn drug in addition to the 120mg steroids and all kinds of antidiarreahals!

                      I was hopeful it was working because I didn’t have any stools for about 5 hours last night but back with a vengeance this morning. Seems like I’ll never get out of the hospital!

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