Immunotherapy and colitis

Before going on immunotherapy (Pembrolizumab) I had a lengthy discussion about the risks with an oncologist who is a friend of my niece. I went to her because she has 6 years experience of Pembrolizumab, whereas my own oncologist was new to it (it’s a relatively new approval for breast cancer, and only TNBC). I came away from that discussion understanding colitis to be one of the nastier potential consequences, and knowing that long term steroids could be needed if it happened. It’s good you got through most of the 2 years you are allowed to have the immunotherapy before developing a problem, although it sounds truly awful. Gradual, very careful reduction of the steroids sounds like the right answer. 

I am 4 infusions in. I have had an immunotherapy related rash which reduced with topical steroids, but hasn’t completely gone away. I am rather dreading the next stage of treatment which would be oral steroids. 

Hoping you can find a safe route off the steroids. 

Hi Vicky 

Thank you for your reply, it is very helpful. 

Helen xx

Hi Hollsmolls,

Thank you for talking the time to reply, much appreciated. 

Helen  xx

Hello

The weaning off went fine and I I've had no steroids for a couple of weeks. Evert thing is OK with no colitis symptoms.  I had been on a maintenance dose of one 5mg a day and had stayed on that for several months. So fingers crossed it will stay OK. On the down side every one of my joints ache which apparently can be a side effect of coming off long term steroids. Oh the joys if this disease.  

But I'm off to Turkey to get some warmth and relax on Friday. Happy holidays. 

Holsmols