Oral mucositis

Walshy2016

Hi my fiancé is day 4 post transplant. He has developed painful mucositis this week. He is needing NG feeding and is on morphine syringe driver for pain. We have been doing saline mouth washes, some local anaesthetic washes. It is too painful for him to eat and has only managed a small amount of oral fluid today.
Does anyone have any good tips for managing this? I'm worried about it becoming infected. He is on IV antibiotics already due to previous line infection and today has been having pyrexia again which he hadn't been having on the previous antibiotics. The medical team have changed the antibiotics. I'm hoping it will get better soon. How long roughly does it take for it to start to improve?
He had TBI with etoposide which I heard is notorious for causing mucositis. Any advice welcome.

Leah

Dieseldrinker62

Hi Leah,

This was something I suffered from too though it came about 3 weeks after my transplant, just after I'd gone home on the Friday for the first time after my transplant which meant I was readmitted the following Monday. My gums were sore and my tongue looked like it had white fur as well as being split and sore. I wear a partial denture and was unable to wear it whilst I had the infection due to the pain it caused in my gums.

It is incredibly frustrating and unbelievably painful. It sounds like your fiance is having the same treatment as me which was a series of different mouthwashes. I think I had about 4 mouthwashes which had to be done in a sequence about 4 times a day. There was one mouthwash which helped more than most as it was mildly anaesthetic so gave some pain relief but it was only short lived.

I have to say it was probably the lowest point in my treatment but that was probably due to the fact that after the elation of being allowed home after my transplant I found myself back in hospital rather than the condition itself. I saw a clinical psychologist as the staff were concerned about my mental state, but by the time I actually got to see here the pain was easing and I was feeling better. Looking back through my blog, the real soreness only lasted a few days and I think within a couple of weeks my mouth had more or less returned to normal.

I found it really difficult to eat and drink during this period so hopefully your fiancees NG tube is helping maintain some nutrition. I found it almost impossible to eat and even drinking fluids was difficult, such that I ended up having IV fluids.

Please reassure him though that it will get better and doesn't last long. At most it is likely to last a week or two and is a common side effect of the chemotherapy we have, so the medical staff will be familiar with it and will do what they can to help him. Tell him to hang in there for a few days and try not to let it get him down as it will soon be over.

All the best,

Steve

Hayley_Anthony Nolan

Hi Leah,

My name is Hayley and I am the specialist nurse at Anthony Nolan. In am sorry that your fiancé has mucositis, it is very painful and can be a miserable time for patients. The type of treatment he has had often leads to mucositis and so although its not a nice experience its very normal.

The treatment he is receiving is completely correct and the best way of managing the pain, he has an NG feed which will look after his nutrition while he is going through this and the antibiotics will cover him for any infections. The saline mouthwashes will be keeping his mouth clean and will help prevent infections, so to do this regularly is important. Often mucositis coincides with neutropenia, so once his white counts start to improve then his mouth should also start to improve. This is not one of the long lasting side effects of transplant but as Steve has said it can be one of the most uncomfortable and distressing. Its also important to remember that even when it has improved and he is at home he should try and maintain good oral hygiene, his mouth will be susceptible to infections while he is recovering.

I hope he is beginning to feel better, keep us updated on his progress.

Best wishes
Hayley