Hi all I have just spent 6 days in hospital with oral thrush and induced immunotherapy hepatitis which is raised lft in blood was on iv steroids but finally allowed home yesterday on oral steroids for 2 months but since discharge now developed diarrhoea like 8 times in 10 hours so think I’ll be back in hospital very soon any one else experience this
I had a serious adverse immunotherapy event from Pembrolizumab which started last September. In my case the initial obvious damage was to kidneys and thyroid. Also hospitalised, IV steroids followed by oral steroids. 7 months later I am still weaning the steroids, it’s taken far longer than I expected because it has had to be done very slowly. At some points I have had to return to a slightly higher dose. The event caused major inflammation all over the place, some of which only revealed itself when the steroid dose became too low to suppress it. I have pneumonitis. I have inflammation in my spine causing some loss of feeling in my left leg. If all goes well I have another 3 weeks to run on the steroid wean.
It sounds like you have colitis, another lovely common result when this happens. Fortunately mine never got worse than a lot of wind generation.
I wish you all the best in recovering as well as you can. I think it’s highly likely it will also have worked well on your cancer - that was the good thing to come out of my experience. Of course I had to stop the immunotherapy.
I have blogged my way through my ‘journey’. The immunotherapy IRAE entries start in Sept 23. community.macmillan.org.uk/.../a-trip-with-triple-negative-breast-cancer
Hope you have as easy a night as possible. I know how awful it is to be on high dose steroids! I had weeks of jitteriness, poor sleep, not being able to taste anything, worrying about side effects from the steroids themselves. Hope you are able to reduce dosage more rapidly than I was able to.
Whatever cancer throws your way, we’re right there with you.
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