"taking your breakfast order" - did you want to punch her? 😉
Much love, hate staying in hospitals so heart goes out to you xxxx
Hi guys, looks like I'm getting admitted again, the lady taking my breakfast order for tomorrow was a bit of a clue.
I've been given morphine and they're sorting out some other stuff. In the meantime, I'm being hydrated.
Thanks for all messages.
Jesus Ninja that sounds really grim!!! I feel really sorry for you, and yet you're still on here helping other people and giving advice for which we're all really grateful.
I've just got a quick question - I had my 3rd EC 10 days ago, I've started up with one side of my mouth feeling like all gums and the lips tissue on the inside is aching like dull toothache and it's very sore to touch, no sores on there that are visible but feel like I've been punched in the mouth. Any suggestions as to what this is? I'm using Oragel which is a novocaine gel that numbs it all and this gets rid of the pains for a bit cos it's just like aching tooth. xx
Sounds just awful. I know this might sound silly, so please ignore me, but have you tried sucking through a straw to avoid your mouth sores. I would numb my with the difflam lidocaine, the quickly eat and drink before it wore off. Straws helped me suck cold things just to get dribbles in. I really feel for you. Dx
Thanks for your posts.
Lisa:"I also used paracetamol liquid to swish around my mouth (or you could use dissolvable aspirin). Can't take aspirin cos I have Crohn's. TBH, I can't swish anything round ATM as I can't really open my mouth 😞
Midge: "lidocaine lollipops" sound good. I'll have to ask at the hospital about those.
Last night I managed to eat some Tiramisu - it's my secret chemo treat, it's soft and cool; I bet I won't be able to look at it afterwards! - by putting it on my little finger (I can open mouth just wide enough to get my pinkie in) and licking it off my finger to by-pass lips. I was able to get 60 mg of codeine down me neck by hiding it in the mini-slop. It didn't help the pain much but did help me sleep. I was also able to take my Gabapentin that way. Failure to take those isn't an option as withdrawal leads to fitting.
My wee's getting quite dark due to trouble getting water cos it's hurting me gob. I don't want to end up back in Stalagluft Ward 2 on IV fluids again this week. I only got out on Tuesday 😞
It's like having Foot and Mouth! BAAA! 🙂
Had horrendous ulcers on tax, used difflam every hour and a half and lidocaine gel to numb them so I could eat. For tax two I started with the difflam even before Chemo. You can get lidocaine lollipops to keep you mouth numb and soothed.
Sorry it's so awful.
Oh Ninja, I'm really sorry that you're suffering. I really feel for you. I had mucosis when I was neutropenic and had some gel sachets called 'GelClair'. Not sure if you can get these over the counter or whether you'll need a presciption. I also used paracetamol liquid to swish around my mouth (or you could use dissolvable aspirin). I was then prescibed sucralfate which is meant for stomach ulcers and leaves a coating over the ulcers. I do hope you find something that helps you.
Ninja it's horrendous. All I can really add is what to avoid next time that might help. I used to have for many years, a geographic tongue, that has now mysteriously cleared up. When it was bad, very sore, the things that made me hit the roof were: pineapple, tomatoes, cheese, especially hard cheese, aubergines. They really aggravated it. May help next time. Nothing I found helped except honey, which of course is bad for your teeth, but I learned what to avoid.
I can't imagine how you could feel anything other than miserable with this - I do hope that you are able to get the painkillers in you somehow, and do hope they help. xxx
I fancy taking some solpadol for the pain (30/500 co-codamol) but I can't get enough fluid in to swallow them; I can't swallow taglets unless I have LOADS of fluid or food to wrap them in. Just feeling sorry for myself, sorry.
Oh Ninja that sound really awful -I do hope the hospital is able to give you something to help. Don't know if you have tried rinsing with salt water ? Sorry it will probably sting a bit too but may give some temporary relief and help with healing. Big hugs to you and really hope this gets better soon xxx
Just bumping this thread as I'm on cycle 3 day 9 and the sore mouth is back and much worse than before. I showed it to the Oncy when I was admitted on Monday/Tuesday this week for other serious SEs and he looked at it; said it was ulcers, NOT thrush, and gave me more Difflam.
It's got worse by today; OH got me some pineapple juice just now (someone said on page 1 it was soothing) and I hit the roof and cried.
Manuka honey ain't soothing it this time either; that makes me cry.
Difflam makes me shudder violently with pain (and then I cry).
All I can do right now is sip water on the LHS of my mouth; the RH corner is the most ulcerated. None of the self-help things mentioned on page 1 are helping. Even plain, cool water makes me shudder if it hits the RH corner.
Any more suggestions? I'm at the hosp tomorrow morning and I'll call in the Oncy room at the same time but anything to help me tonight? Even if it's just sympathy?
I'm just in tears over it all, I'm having a really shitty week.
Hi there, I too had thrush. It started after my fist fec chemo and was pretty awful so I empathize with you 😞 My GP also gave me Nystatin drops which worked wonders and cleared it up in a few days so it's woth persevering with it.
Hope you feel much better soon
Found some evidence about it not being wise to eat/drink fennel with E+ BC:
I found lots of sites all saying the same. Pity I had to find out accidentally during a sesh with a herbalist at the Haven. Maybe this should be publicised more? Loads of folk use herbal teas these days and we also often have sliced fennel in salads. Well, we *did* ;o)
Corsodyl do a toothpaste too. To start with it tastes a bit like salty mud, but you get used to it pretty quickly, and it doesn't do that stingy stuff that mint toothpaste does. It's not cheap though, but you only need a tiny bit.
Mention the sore mouth to your onc, it's a common side-effect.
The medical herbalist at the Haven centre told me to avoid fennel, as oestrogen feeds on it and my tumour feeds on oestrogen.
So sorry you are suffering. My onc suggested a salt water mouth wash and I took this as soon as I felt a sore mouth coming on. It really works and costs nothing. Hope you feel better soon. Sheila x
I've been using a fennel and propolis toothpaste and stopped the mouthwash as I felt better just leaving the toothpaste in my mouth. It's working so far but I'm only a week into 1st FEC.
Pure pineapple juice is the best thing for ulcers. You need to swish it around your mouth 4 times a day.
If you have thrush, a white coating, you really need the proper medication. Fluconazole 50mg for 5 days is the best. If you are desperate you can buy a Canestan 1 oral from the chemist.
for ulcers Adcortyl works best for me.... salt water mouth wash too... no idea on toothpaste, though people used to clean their teeth with bicarb in the old days, so if that doesn't hurt....
I find melon a good thing to eat to cut through the taste and the dry mouth... think if I were you I'd phone the doc.... or the helpline.. or both!! Jane xx
Oh, while we are on this - can anyone recommend a type of toothpaste - baby toothpaste perhaps, that doesn't sting if my mouth explodes again next cycle? I normally use 'sensitive' toothpaste but it stung my membranes so badly when they were sore...
Mine was very bad for about 4 days, then when I started with the Manuka it started clearing. A week later and I now just have one side of my tongue red and swollen. I even managed to drink some orange juice yesterday! Plain chicken breast was also OK for me - I got a pack of the little chunky unflavoured pieces from the supermarket. That, shredded, plus the micro-pieces of cucumber was my staple diet.
omg it sounds like your mouth was a lot lot worse than mine,
cucumber is good, tomato is too, how long does this bad mouth go on for, i am taking anti biotics, nystatin, and gel clar i am getting a bit concerned now i dont know whether to give my gp a ring tomorrow and see whether there is anything else he can give me
i have tried bircarbonate of soda, it does help a bit, i am just feeling so miserable, because my stomach is hungry but i carnt eat, i am forcing myself to eat bits fish seems ok, but things like bread, and pretty much anything really makes me feel sick to my stomach
Poor you. I had that with my first chemo. Difflam was extremely painful and Bonjela worse. I lost 4 lbs in 4 days due to being unable to eat.
Swishing bicarb solution didn't hurt me though, and a spoonful of Manuka honey, tried as a last resort was marvellous! It was very soothing indeed.
I also found that cutting cucumber up very small to eat (I could hardly open my lips, they were that sore) was good as it didn't irritate me.
sorry to hear you are having such a nasty time. Have you tried bicarb of soda as a mouth wash? It can cut through the coating and give you a little respite.
i have just had my last tax of 6, last friday royal wedding day,
my mouth is horrendous, sore, coated with thick white thrush, i carnt taste anything, i feel starving hungry but as soon as i try to eat pretty much anything i start heaving, i am taking anti biotics for it, difflam, which is burning, nystatin, and gel=clair, my mouth has been bad pretty much every time, i dont have ulcers, but i am feeling pretty much burning sore pain all the time, even sucking ice lollies just seems to leave me feeling sick, with a foul smelling breath,
could anyone suggest any thing else for me to try please,
thanks liz xxx