Posted 6/5/2018 12:13 PM (GMT 0)
My husband is about to start immunotherapy for cancer. I am his sole carer. The drug he will be given has various autoimmune diseases listed as potential side effects: it shuts down PD-1. The leaflet we were given doesn't mention precautions for carers, but on one particular US site it warns about the drug passing into bodily fluids and says carers should wear rubber gloves, avoid contact with said fluids for at least 48 hours after the infusion and wash patient's laundry separately. (These safety precautions are not on the drug's website. I have a request in to the manufacturers for info, but I may not get a reply before treatment starts)
I explained to his consultant that I have active UC and asked if I should be taking extra precautions, but she didn't know, and said she would try to find out - but she's gone on holiday this week and the infusion starts on Thursday. I spoke to the nurses in the chemo unit and they didn't know anything either. I'm worried that even hugging him skin-to-skin might do very bad things to my flare - which is really mild at present - and I won't be able to look after him when he needs me. I'm worried that it might be a problem even going to the infusion with him, and equally scared of not going in case anything goes wrong. The chemo nurse seemed to think I was making a fuss about nothing. It's all pretty stressful for both of us.
I'm aware that nobody here has probably got any definite answers about this & am hoping the manufacturers get back to me, but you've all got UC: would you be concerned, and what would you do?