hi can anyone offer any help with regard to an extremely sore mouth full of mouth ulcers which are also on my throat making swallowing difficult. Iam 10 days into my second chemo - did not have a problem first session just one or two small mouth ulcers which disappeared in a couple of days but this time I got a chest infection which has been awful, on antibiotics but after 5 days just about able to breathe and now the mouth problems have started not been able to eat properly for two days. Read the books and it says wash with salt mouthwash which I have been doing but not really helping - feeling really fed up and despondent…any advice greatly appreciated
Hi Marybrim
Try Cordosyl mouth wash - in most supermarkets/chemists - it’s specifically for mouth ulcers and gum problems. If that doesn’t ease things, your BCN/GP will be able to prescribe something stronger.
Hope you feel better soon.
Dx
Difflam is good and I was prescribed a gel that you mix with water, it was brilliant., called gelclair I think. Still got a box upstairs, will dig out and tell you the name if you are interested. I had really bad ulcers so sympathise xx
Hi I was told not to self treat when on chemo. I rang chemo unit and they wanted to see me. They took bloods as I was between day 7 and 14 to check no infection. Then gave me gel Clair mouth wash. Worked really quick and well. The next chemo I started to use it before it got too bad. Some like cordysyl but I found it burnt my mouth
Hi I also had lots of mouth ulcers was given Gelclair which helped but also used Bi Carb of soda as a mouth wash which really helped as well. Definitely worth a try x x x
I second the advice to contact your chemo unit. Given where you are in the cycle, they might want you to go in so they can check you’re not neutropenic - that can be VERY serious so not worth taking a chance with. Give your unit a ring and take their advice.
Hi, I had very bad oral thrush when I was on tax chemo, I lost my sense of taste, but I never got any ulcers. I would definately contact your chemo unit and tell them about the ulcers in your throat, I think you ought to get their advice it isnt a good idea to let that situation get any worse incase it hinders your breathing, and tell them you havent eaten for 2 days.
I also agree about finding out about whether or not you may be neuropenic. Try not to worry I am sure your chemo unit will sort you out, let us know how you get on.
Love and best wishes Liz x
Hi I had terrible thrush and sore throat they gave me some tablets there seems to be v little they can do I didn’t eat for a week only soft fruit they didn’t seem botherd my onc just went u have to let nature take its course no help when y in pain I tried all the mouth washes none worked for me gd luck hope it goes sn laura x
I went through the same thing and my GP prescribed difflam as a spray which really helped. It had a nozzle on it which meant I could direct it very precisely to where it was needed.
I was prescribed Difflam and Nystatin, but will echo Choccie’s opinion too. For me ulcers were always a sign of being neutropenic, so make that call and get those bloods checked asap. My ignorance and not wanting to bother anyone, cost me three days in hospital.
I hope you have already contacted your Chemo nurses-Bank Holiday or no Bank Holiday-but if you haven’t please do so now.
Like Elttiks, a sore mouth was my first sign of neutropenia or low white cells.
They need to check you out, which doesn’t take long, and then they can dish out the mouthwashes etc to keep you comfortable.
Please come back and tell us how you are getting on
Lavender
xx
Hi everyone thank you for all the helpful comments not been on the site for a couple of days as I felt too poorly but today feel much better bought some codysyl mouthwash and some tyrosets which seemed to numb the pain a bit, seemed to help a bit and now the ulcers on my throat seem to to have gone still got them on tongue and lips but can eat now. What does neutropenic mean - never heard of that?
Hi Mary
neutropenia is a very low white cell count. I still think you should contact your chemo unit, as they would want to know about your sore mouth. We wouldnt know we were neutropenic until we developed a very nasty infection, as your body is unable to fight it if you are neutropenic. Only a blood test will tell. It is VITAL that you it is detected before you get an infection as it is life threatening. One of the symptoms is mouth ulcers. I went to the chemo unit with mine and they did a blood test which was ok. if not it would mean hospitalisation and possibly a transfusion. Dont take the risk, I am sure others would agree on here. sorry to be so matter of fact - a quick call to get advice would do no harm?
Hi there and sorry to hear that you are suffering like this. I had a very similar experience with my 1st FEC last month to the extent when I had to peel my tongue from off the roof of my mouth when I woke up!. Great the first three days but mouth very sore. I was advised Corsodyl by the BCT but had read that it can turn your teeth brown if you use it too much. My friend went to speak too the pharmacist who advised a very gentle mint free mouthwash, some ice chippings and a spray bottle of cold water in the fridge. All these helped over the next few days but it appears on about the 4th day I must have been going down with nuetrapenia…on the 9th day when I summoned help I was severely lacking neutraphiles and hospitalised. Had the sore throats too. Maybe this is a good indication that there is an infection lurking and needs to be seen to urgently.
Ice lollies really help my sore mouth…there’s always some in the fridge.
Hugs to all. xxx
Sorry if this doesn’t make sense…my head is all over the place today 
MARY - GET IN CONTACT WITH YOUR CHEMO UNIT RIGHT NOW!!!
If it’s nothing, they really won’t mind sending you off home again, but if it’s something that deserves a bit of concern they will NEED to get you in under their supervision.
CALL THEM NOW!!!
Then come back and tell us how you get on. But phone them.
Hi
I had mouth ulcers from hell 18 at one count couldn’t eat anything except custard and puddings that would just slide down but I didn’t phone the chemo ward they were just one of the side effects I was told to expect. Wasn’t told to phone if had them and they cleared up after 3/4 days. When I told them I had had them at my next chemo they just gave me medication in case got them again (Which I didn’t )
If I had an infection would I not have a temperature. My temperate is normal and the mouth ulcers are definitely getting better. I would assume they would get worse if there was something serious. When I rang the chemo nurse about my chest infection last week they advised me to see my doctor and he gave me antibiotics which I have finished today. The chemo nurse at the hospital told me I may get mouth ulcers and to use salt and water so I was assuming this was a normal but severe side effect. the oncology unit is an hours drive away so as I feel reasonably ok and honestly could not face the drive there and back tonight, I will ring in the morning and see what they advise. I have been able to eat today.
Can anyone who was neutropenic tell me if they had a temperature or was it just the sore mouth and the ulcers that indicated the infection? i am getting very confused with all the different feedback but obviously don’t want to risk making myself really ill by ignoring it,. I will definitely ring tomorrow or tonight if my temperature goes up.
thanks everyone for advice.
Hi I can see it’s confusing. Neutropenia can start without a temperature ie your White blood cells are in your boots. If you then develop a temp it means you have an infection potentially serious and no way of fighting it. It’s a little bit like meningitis ( example only I stress) in that by the time you have the rash you are very poorly. Mouth ulcers are a definite symptom of neutropenia but your right also of chemo. My unit was very strict when I rung that I had to have a blood test becos of ulcers and also very strict about not self medicating as it could mask any symptoms. It is like when they tell you not to take paracetomol if you hAve a temp, just contact them first. As a nurse I have seen some patients with very few symptoms but from a blood test their White cells are low and need to be in hospital. It maybe your bloods are fine and sore mouth is just that. It’s a huge shame a lot of us are told different things at different units as it causes confusion when we try to help each other. Being a nurse I err on the side of caution as I have seen how Ill people have been neutrpenic. Hope you go on ok tomorrow. I fully understand where you are coming from, I pledge I will not vi sit the unit in-between chemos! Failed so far as well!
Hi there, I have just had neutropenia. Do not delay - check your temp and if it is 38 get in touch with your emergency team. I had my 1st Taxotere on Friday 19th Aug and was fine-ish till following Wednesday. On Wed evening I had weird chills, a very sore throat with tickly cough that seemed to tear my throat to bits. I checked temp and it was 38 degrees, and though I didn’t feel awful, just very tired and wanted to go to bed and sleep and couldn’t be bothered to go to the A&E. However, I phoned the emergency number, took a taxi to A&E and was found to be minus neutrophils with an infection, which they couldn’t find the root of. I spent last 4 days in hospital with IV antibiotics and saline. On Saturday my neutrophils had recovered and I was allowed home Sunday with oral antibiotics. If I had not phoned or had gone to bed, I might in a very bad way today - their ability to act before an infection takes hold is most important. I feel so so much better than I did and my throat is almost normal except for the dreadful taste. I had mouth ulcers too but did not know they were an indicator of neutropenia. To be on the safe side i’d been monitoring my temp for 3 days before because my temp was all over the place with steriods and GSF injections. It went from 36.5 to 37.6 to 38. Don’t feel embarrassed about phoning your team - I phoned my cancer nurse and McMillan for advice because of the ulcers and throat and they kind of advised for those conditions only and didn’t even mention the possibility of neutropenia. If you don’t have a temp of 38, but it is 37ish, monitor it very carefully. Hope this helps and isn’t too scary. When I saw the red neutropenia card you get it scared the life out of me, but now that I’ve been there and done it, it wasn’t quite so bad. Lucky I acted on it though.
Hi
After my first chemo I had the sore throat from hell, along with all the mouth ulcers (I didn’t have a raised temperature). I phoned Christies who recommended that I try Manuka honey. They use it in treating patients with throat cancer. It certainly did the trick. It also helps to keep your white cell count up. I read up about it on the internet and took it every day for the rest of my treatment and had no problems.
Absolutely swear by it and although I don’t take it daily now (3 years post treatment), I always have it in stock and use it for the onset of a cold or cough (plus it’s really good for open wounds and sores).
There are plenty on this forum who swear by Manuka as search will prove. Both Sainsbury’s and Tesco sell it.
Give it a try.
All the best
Mal
PS My onc also recommended it.