Sore mouth several months after chemo?

I finished chemo at the end of June (6 x FEC) and one of the SEs that bothered me during chemo was the feeling that my mouth was burnt. That used to wear off in the third week. Since then I’ve done rads (no hassle), and have done 7 Herceptin and am also on the dreaded Tamoxifen.

Thing is, over the last week or so my “burnt mouth” feeling has started to come back, and I was wondering whether this is a common SE or not, and does it settle down. And more to the point, if there’s anything sensible I can do to minimise it. It’s not excruciating, but it’s constant and so a constant reminder in addition to the volcano moments that I could do without. I have some Difflam that I intend trying, but if anyone has any useful tips, feel free.

I looked up “burning mouth syndrome” on t’internet, and if that’s what I’ve got it’s neuropathic related to low oestrogen - not fun as I have several years still to go on the dreaded Tam. Thought I’d got away lightly with manageable SEs, but it would appear not. Or would it be a Herceptin-related thing, perhaps? I’m convinced Herceptin does things to my digestive system and I’m not good to be downwind of the first few days after a treatment.

I’ll give the BCNs a ring on Monday in case they have any useful suggestions, I don’t have another onc appointment for a couple of months and they’re pretty useless as a means of getting any information, so thought you lovely people would be my best port of call.


Hello ChoccieMuffin

I have just been diagnosed with Burning Mouth Syndrome. I am 8 years down the line, had 5 years Tamoxifen, no problems and now on Letrozole, have been on this 2 years 8 months.

Before you read on, if you do have BMS it is not serious, just a bit of a pain to have!

Started having problems 6 months after starting Letrozole, tried everything, even took a 6 week break from Letrozole, improved a bit but it wasn’t really long enough really.

Anyway in September referred to a Oral Clinic and it seems that 1 in 3 older ladies suffer from BMS and I’m one of those lucky ones!

It started off by getting a dry mouth that will not go away, it feels as though you have mouth ulcers but nothing can be seen,my lips are affected not the whole of my mouth and this is unusual.My lips feel as though they are burning and only ice cubes will give me instant relieve. In the morning it isn’t there and as the day goes on it comes back and gets worse through the day.

I wouldn’t assume that this is what you have, it took me nearly 2 years to get an answer because we tried everything but it did get worse so I am convinced that it is Letrozole but trying to get anyone to agree to this is impossible. We thought it was oral thrush so had various treatments for that.

Yours, hopefully, might be temporary but one of the causes is anxiety so try not to worry about it(I know it isn’t easy). BMS is not curable because they don’t really know what causes it so they treat the symptons,but I am now on Nortriptyline which is the normal treatment and is quite sucessful but I have only been on it 2 months which is too soon to say. It could go away as quickly as it came. It could be a vitamin deficiency, I had blood tests which were okay.

I have rambled on, but I haven’t heard on anyone else on the forums who has this.


Gosh, interesting! Bumping…

I have had terrible problems with my mouth since finishing chemo in August. I have seen numerous doctors who either say it is oral thrush or acid reflux. I am on medication but it doesn’t really help like u Hazel it is ok in a morning but by the end of the day it is awful. It feels like the roof of my mouth is burnt, i have an awful taste in my mouth and then i seem to have excessive mucous in my mouth so i am forever swallowing - not nice.

I’m going to phone the BCNs on Monday anyhow to see if they think it’s related or whether they think I should just go to my GP, as it is definitely getting more noticeable, and today has been a real nuisance. Went out for a Chinese this evening after a swimming meet all day and the metallic taste was very intrusive and took the edge off what would otherwise have been a really nice meal.

Can u let me know what they say as i have just been reading another post and a metallic taste was a symptom of liver mets - now worried x

Oh Beardie, I’m now the proud mother of several litters of kittens.

I also have sore bits under my arm, and backache for the last two weeks, as well as the sore mouth. I’ll let you know what happens when I call them, though probably won’t be seen this week because of the flipping public sector strike as the clinic tends to be on a Wednesday… Ho hum, onwards and upwards, who’s got my bucket?

Put the kittens on hold!!! back ache, joint pain and pain in the area which were operated on are fairly common side effects of Herceptin, also several comments on metallic taste, obviously I dont need to tell you it makes sense to inform your care team.
Hope all is well.
T x

BCN has booked me in to see the team this Wednesday, and also suggested I see my GP in case there’s something treatable for the mouth thing. Bucket firmly back on head, fingers in ears and I’m singing “la, la, la, I can’t hear you” to all the whispers inside my head.