Hope under the circumstances that you all had a good Christmas, I actually managed to enjoy it as best I could. Having little ones certainly is a big distraction and stayed up in North Wales by my parents for some reason being away makes it all seem like it is happening to someone else but back home now!!
What i wanted to know was had 1st of 4 Tax on the 18th and felt ok for first 3 days (apart for being down in the dumps) then due to constipation!! nice had really bad pains in tummy and then the mouth thing, everything tasted of metal, i felt like i couldn’t open mouth fully and the white spots were just horrid. Started with the green mouth wash (sorry cant remember name) and fluro-something tablets for fungal infection. Does it get worse each time??? Has been ok for last 2 days but due another dose on the 7th Jan does it start all again?
Thanks anyone else the same?
Not on chemo at the moment … so not sure whether this will be of help
and also not sure whether it will be edited out …
Really sorry to hear that you are so uncomfortable - sounds horrible … big hug >>
I read on an internet site that it’s a good idea to avoid mouthwashes that are alcohol based during chemo - many of them are. My dental hygenist as a thing about alcohol based ones anyway and told me to use one that isn’t for every day use - it dries the mouth less which is better for the mouth aparently.
The one I use is the two-coloured one - it comes in mint and clove flavours and possibly one other and separates into 2 layers. You have to shake it before use.
The taste thing was bad for me each time with chemo (AC). I suffered one mouth ulcer with first dose then was ok till 5th and 6th doses - each time it just got worse - a mouth full of ulcers and thrush. I dont think theres any way of telling how you will be - you may be different each dose. Just try and do the best oral hygiene you can. Pineapple juice is also very good for cleansing the mouth - but I absolutely HATE pineapply so couldnt do that.
Enjoy your new year before your chemo starts again
i had a really yucky mouth with my chemo e-cmf. my tongue got so crusty it kept cracking and bleeding. this helped me:
fresh pineapple and live yogurt
brushing my tongue and the inside of my mouth using a soft toothbrush
mouthwash - 1 tspn of salt in pint of water
clean teeth after every meal.
i found this cleared up the problem after a couple of weeks and keeping up the yogurt kept stuff under control.
I had 4 FEC followed by 4 Taxotere and had the mouth problems with both, although it was worse on the Tax.
My mouth was full of white “curds” (no ulcers though), and everything tasted awful, even water! The white stuff lasted around a week each time, and the taste buds took a long time to recover!
Sorry, I never found anything that helped, and I sympathise with you.
I had my last Taxotere on 1st November and I am feeling 80% OK. Just the numb toes, dreadful nails and a little residual muscle weakness. Hair is coming back (grey, grrrrrrrr)!
Good luck with the rest of your treatment…keep at it… take care, and I hope 2008 is a much better year for you!
I had the mouth ulcers after my first cycle of Epi, but got armed with the mouthwash and gel from the hospital (Difflam mouth wash) and was worried it would happen after each cycle, but the first was the worst… so here’s hoping its the same for you. Any sign of soreness, then I got in with the mouth wash, before the symptoms escalated and that seemed to work for me…
I had the mouth ulcers and oral thrush with all 4 cycles of Epi it was alfull (yuck sorry) i was told by onc to use the difflam mouthwash and gel up to 8 times a day , i got antibiotics for the oral thrush each time which got rid of that but never seemed to help much with the ulcers , its one of the side effects that affect some of us more than others im afraid my tounge used to burn alfull too which made eating realy difficult (jelly is good) but now im on my last cycle of Xeloda havent had any problems at all on this chemo so i quess its just everyone is different in how we react to different chemos.
I realy feel for you they are horrible
Best Wishes
Lindiloo x
The sore tongue and mouth seemed to lessen with each dose of my 4 taxotere’s (which it didn’t seem to on AC). I had no mouth ulcers after the second dose, but when I did have them I used Orabase, which is a paste available over the counter - I put it on with cotton buds which made it easier to hit the target and the releif was instant. I also use Dentyl and find it very soothing, when I brush my teeth I do pay particular attention to the back ones as, apparently, this is the area that habours most bacteria in the mouth.
I did occasionally use Difflam, which was very good, and Gelclair, both of which I got from the chemo centre. The Gelclair has to be mixed with 3 spoons of water and swished round the mouth an hour before eating, it doesn’t taste horrid either which is a bonus as I’m the worlds biggest wimp when it comes to things tasting awful.
My mouth was the same on each taxotere, apart from when ended up in hospital, as antibiotics cleared it up. I was on Difflam, Oraldene and then got another one too, can’t remember. Also given Nystan oral but that was Yuk and didn’t work so given oral tablets to help. Didn’t work that well. Had oral thrush and a few ulcers, worse one right at back of mouth and was very painful, eventually got some gel stuff from pharmacist and it worked!!!
Hope you find something to help. Speak to your chemo nurses though and they will try different things out on you. ANd the constipation is awful isnt it.
I finished my treatment beginining of October. Just wanted to add there is something called Gelclair which my oncologist recommended, the chemo nurses gave me a leaflet about it to give to my doctor as the oncologist in my area (Birmingham) couldn’t prescribe it. my Doctor gave me a prescription for it. what it does is, coat the mouth and it makes it easier to eat (not so much pain).
I had the bad taste, and in the end I bought some Complan but didn’t need it as I got my apetite back, they told me to eat bland food and I just couldn’t face eating that, so I did eat spicey food and paid with problems with the mouth. I didn’t drink enough water I think, and on the occasions that I did drink more I found the effects of the FEC and Tax were lessened. Another thing was brushing teeth after every meal and using a baby toothbrush, they are softer.
I got furry mouth each time on Taxotere, but found Difflam helped and was prescribed Daktarin which despite being a tube of ointment worked really well. I just rubbed it on my tongue and it seemed to work.
I am justbehind you on the tax - started 21st - 1st of 3. Have generally found it much harder than fec and my mouth has been horrible. Have had a very sore tongue and gums and lips. Mouth feels dry all the time - only advice so far is cleaning teeth after every meal (think someone has already said that) using mouthwash (one with no alcholol in it) and difflam. I had antibitotics day 5 -10 (apparently protocol where I am having treatment) and that seemed to help. Felt rubbish day 4 to 7 and sort of all right know - just very tired. No nausea though.
Hi there, I got all your symptoms after my first chemo (Taxotere) and ended up in hospital due to no immunity because the mouth infections got so bad.
I found that a combination of things helped. I was given anti fungal and anti viral tablets to take in my middle week. I also had mouthwash - not the green one- chlorohexidine I think it was called. Also in the hospital I was given a mouth rinse called Gelclair that really helped when my mouth started to tingle - it was like Bonjela and was good because it coated the mouth and eased the pain. I would also recommend changing to a really soft toothbrush and sensitive toothpaste til your treatments finished.Also the note about pineapple juice worked too.
I would also avoid certain foods when your tastebuds disappear - I avoided bread especially cos it tasted dreadful.
Just make sure you are well prepared each time and it should get easier.
Just my luck, after getting through the last couple of Taxotere with not too many mouth problems, I have now got toothache - it’s nothing to do with the chemo, the tooth has been playing up for a long time and needs to come out. I have to wait until tomorrow to see the dentist, hopefully he can fit me in.
Has anyone else had to have an extraction or or other dental treatment while either having chemo or shortly after? (I finished on the 21st Dec). I am due to go into hospital on the 15th Jan for my mastectomy and don’t want to have to deal with toothache as well (although I know this may seem trivial after all we have gone through!)