Is it possible to have immunotherapy again after it caused ulcerative colitis that is being treated with infliximab and steroids?

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Hi my husband was diagnosed with colitis causes by nivolumab immunotherapy he has been on steroids for 4 months now with infliximab infusions 2, 4 and 6 weekly he's nivolumab has been stopped permanently but we are just wondering If anyone has been in this position and what treatment was given for the cancer?

  • Hi - I am from the kidney group (metastatic, spread to lungs) but sharing my experience . . .  I have completed 4 cycles of ipilimumab / nivolumab until it had to be put on hold due to immune related adverse event (acute interstitial nephritis).  The trigger was kidney function tests in the amber zone.  This has been (partially) restored by a small and quick (1 month) dose of steroids @30mg daily, then on a 5mg taper every 5 days.

    I have just been to see my oncologist today to discuss next steps.  Subject to satisfactory bloods, we're going to try to resume immunotherapy (nivo monotherapy) in 2 weeks.  We do not know which drug is the cause, or whether the combination of the two.  If the kidneys protest again, we discussed a few potential options like Watch and Wait (my cancer is already responding correctly to the treatment), analyse the scans in more depth, or try a different drug, he has a tyrosine kinase inhibitor (TKI) in mind which acts on different antigens to the ipi/nivo.    

    I hope you get more feedback and responses in due course.  

  • Thank you. My husband is currently doing watch and wait. He was on nivolumab only so we know this is what caused the issue my understanding is that if the colitis could have been controlled by steroids only then he could possibly have immunotherapy again but because he was steroid refractory and had to have the infliximab then he won't be allowed nivolumab again. So stressful not knowing the next step. Xxx

  • Yes, I know what you mean.  When I was choosing my treatment on 21/12/2021 "do nothing" was on the table.   I was like "WHAT?  Are you having a laugh?  Carry on feeling like this indefinitely waiting for the cancer to advance?  No way!!".  Albeit the circumstances are slightly different, we know the cancer is "under control" at the moment, that option is now in scope again and all the mental challenges it brings.  

    Did you watch the Horizon Dr Hannah Fry programme last week?  Those issues are here.  Why are we treating, what is the benefit . . . . and the risks and the probably of improved outcomes.  

  • My husband had a good response to the nivolumab he is stable or he was at the last scan we are waiting for an appointment for a ct scan this month they don't want to start ant treatment until the colitis is fully under control as he had it really had he's still to have 2 more rounds of infliximab and still has another month on steroids so he will have been on steroids for 4 months and had 5 lots of infliximab by the time they will even consider the cancer side of things it's such a worry.

    We didn't watch the programme but I will have to search it up and have a watch of that it sounds interesting xx