Oral mucositis - Sore mouth, throat, oesophagus

Going through breast cancer treatment Chemotherapy monthly threads
1

Hi everyone,
I’m now in to day 9 of my first round of chemo.
(E.C - every 3 weeks).
After phoning the advice line with painful sore throat , ( but no other symtoms) visited my doctor for examination.

Doctor sees that i have white pockets of puss at the back of my throat, and issues me with 7 days of antibiotics. Although now on 2nd day of antibiotics I notice the pain has moved down in to my oesophagus, giving me horrible pressure ( almost indigestion pain like) and now finding it difficult to swallow food and drink.

Did a little research, and seems that what i could be suffering with is Oral Mucositis. And even though my oral health is good, I really wasn’t aware that there were ways to help to reduce the risk of it. (apparently a known side effect of chemo).

I wasn’t told to look out for a build up of “fur” on my tongue and mouth or how to reduce it. I just knew it felt really uncomfortable and unpleasant. No amount of brushing my teeth seemed to make it any better.

Consequently, developing in to ulcers in my mouth , throat and now suspected in my food pipe, judging by the pain.

My questions to others is:
Were you made aware of this?

Do you have any tips and tricks to help with pain?

What food has worked for you that is easier to swallow?

I would really like to hear your experiences on this. As i feel like ive just had antibiotics thrown at me for just a throat infection, no advice, no tips on what to avoid.

I can only hope this post would not just help me but also others who , like me, were not educated in this. :pray:

Thank you for reading, wishing you all the best of health. xx❤️

2

Hi, Just tripped over your message whilst looking for something else!

I’ve had mouth problems with both EC and Docetaxol.

With EC I had very obvious oral thrush - white coating of tongue and red raw at back of throat with difficulty swallowing. I was given Flucozole tablets to take as a preventative for the next cycle and they worked well.

With Docetaxol I get Mucositis - Red raw inside mouth and lips and back of throat and mouth and tongue sores, and an unbearable foul taste that was possibly - for me - the worst most unmanageable side effect. It also feels like my mouth is dry and yet I am also sort of producing too much weird clear saliva that I instinctively want to spit out. It really gets me down! I also had what felt like dreadful heartburn at one stage which felt very much as you described. The hotline kept prescribing me awful mouthwashes like Difflam (for the pain) and Clairgel, but these were just another revolting taste on top of my already revolting taste and I felt did little more than distract me for ten minutes as they were so awful in themselves!

I’m halfway through my 4 cycles of Docetaxol. This second round they gave me Betamethasone steroid mouthwash as a preventative for the Mucositis and although I still went through the same symptoms, to a much lesser degree, and for less days. No sores or pain in throat but still foul taste for days and days and sort of dry discomfort.

If its of any help - I have found that the only relief I can find is to always have something in my mouth - whether that’s a sweet (worthers originals have been good) or strawberry chewing gum (can’t tolerate mint!), and sweet drinks like squash (I find I can’t even bear the taste of water or tea!).

1 Like
3

Just to add, I wasn’t warned of it, just worked it out via research myself and calling the hotline.

BIGGEST advise is to call hotline about everything!! There is usually something they can offer to mitigate. I’ve had the weirdest side effects that are not listed on side effects.

4

LAST thing - I wouldn’t bother with doctor as first port of call. I would always call hotline and/or speak to your pharmacist if its something mild.

1 Like
5

@rfg

Thankyou so much for taking the time to reply. At one point I thought it was just me. Couldn’t seem to find any posts on it.
So thought I’d create one.

Really appreciate your input on your experience.

Yes I went through helpline first and they sent me for an appointment at the doctors. I guess incase infection was on the rise.

But i will ring 24 again for advice now, although I thought it was only for emergencies. :person_shrugging:

Xx

1 Like
6

I am at the Marsden and they have a hotline that is for everything except a 999 situation basically. I was shy to call at first for exactly the same reason, thinking just for emergencies. But I’ve learned after 6 cycles of chemo that you don’t have to suffer with anything. No prizes for bravery. I really did think I just had to put up with everything. You don’t! Although there is only so much they can do for you of course. I had a 20% reduction after first EC which really helped and it was all more manageable after that. First Docetaxol was full wack and again they reduced by 20% for subsequent cycles and its been better for sure than last time. I was assured that dose reduction of 20% wouldn’t affect treatment efficacy.

2 Likes
7

I suffered with mouth ulcers and oral thrush after my first full dose of docetaxel. I could not stand anything which was hot, ie like a cup of tea. Also food had to be cool and soft, ie like scrambled egg. I had to have a sandwich cut up into little squares. Cool mash potato, cool soup, jelly etc were the only things I could tolerate. I ended up drinking through a straw. It lasted 5 days. I was given gelclair, various mouth washes and nystan. I had a dose reduction for my next chemo and the side effects were much less severe. The only information I was told was that I could have mouth problems and problems with my oesophagus. This was at the start of treatment and was among a long list of side effects.

1 Like
8

Hi!

I was given the cheap version of Difflam mouthwash and told to use it after eating… 4 times a day, whether or not I had a problem. I have Bonjela at the ready too.

Hope that helps

1 Like
9

So immediately after my first EC (actually started during it) I had a tightening in my throat. They gave me antihistamines in case it was an allergic reaction to take at home, but it wasn’t and I didn’t take them.

My tongue was white throughout day 2-8 and very dry but I still had the same pain down my throat. It wasn’t until day 8 I recognised it as acid reflux (only had it once before with anti-malarial tablets). I got peptobismol but spoke the chemist to make sure it wouldn’t react with other meds. Worked a treat. I then told Oncology day before round 2 of EC and she has given me an an antacid tablet to take daily. No throat pain so far.

Eating is difficult but I made a smoothy with frozen berries, apple juice and Greek yoghurt. Went down a treat. Also, toddlers yoghurt frubes frozen, they went down a treat too and all good food.