Please help!!
I’ve just started Docetaxel on Tuesday and thankfully had very few side effects so far, apart from fatigue and some aches and pains. However my mouth feels terrible. Nothing tastes great, my mouth feels woolly and coated with wax (I know that doesn’t seem to make sense). I have had Carboplatin, ECMF and Avastin over the last two years and never experienced this. Any suggestions to help with this please?
Jennie x
Oh Jennie
I so feel for you. When I was on Tax my mouth was vile. Everything tasted disgusting, even plain water. And as for eating! I never found the answer though some people swore by pineapple. Might be worth a try? Personally I more or less stopped eating and lost a welcome stone and a half.
No help, I know, but sending you so much sympathy. It does stop eventually. I hope someone sends you the miracle cure.
Much love and strength
Dilys
xxxxx
Hi Jennie- My experience was just the same as yours and Dilys: virtually everything tasted horrible - and I too lost over a stone in weight- which I had wanted to lose for years - the one and only consolation for all the horribleness of BC .
I also found that things smelt ‘funny’ - there was a particular ‘perfumey’ sort of scent in in our shower room that everyone else said I was imagining but It was there all the time I was on Tax.
It took a while for my normal greedy appetite to come back but it was great even to be able to enjoy water and fruit - tea and coffee took quite a bit longer- but your normal taste WILL return - just tick off each treatment and hang on in there.
( On my worst days of each cycle all I could eat was porridge and semolina, rice cakes and marmite- and sometimes, scrambled egg…but we are all different and maybe they wouldn’t appeal to you. )
Hi Jennie - tax mouth is horrible. I also found anything remotely spicy burned - even ketchup which I was hoping to use to disguise the horrible taste. I didn’t find anything helped - just time. 3 weeks after my last tax I finally started to get my tastebuds back.
Hi Jennie
God I totally empathise with you. I had my second TAX last week and my mouth is horrendous. I’ve tried all sorts including pineapple which was recommended but to be honest nothing has worked personally for me. Even drinking lukewarm drinks such as tea, coffee etc burns like mad. I hope you get some respite soon.
Take Care
Krissy xx
Hi Dilys, Topsymo, Finty and Krissy!
Thanks so much for the replies and support offered. I’ve not had a great week, felt really down hence the delay in replying. Feel much better today though, my mood seems to have lifted.
I’ve found that the only things that I can taste are spicy foods and sharp/sour fruits. I love dairy products but finding they are the worst things to eat. I’m due for my second Tax on the 17th so will see how things go then.
Thanks again girls
love
Jennie x
Hi Jennie,
Best of luck for 17th. I also had the mouth symptoms with taxotere, so really sympathise. A couple of drink suggestions that worked for me: Hot Bovril went down a lot better than tea or coffee, and for cold drinks I found that bubbles helped, especially bitter lemon or ginger beer, or else very cold things such as cartons of Ribena straight from the fridge.
Best wishes,
Jx
Hi,
I agree the taste after tax is horrible. Nothing tastes remotely OK. Bovril or herbal teas (like lemn & ginger) were okish. I too lost one and a half stone during this time and i agree this was the most welcome SE. Up to me now to keep it off.
oh I do sympathise - I had that too - have you been checked for thrush? that is what I ended up with (4 months now and counting) because of the dexamethasone (spelling!) that I had to take first - still trying to get rid of it.
Might just be the tax but worth a quick word with the nurses.
the only thing I could drink was diet coke (yuck but still)
Good luck with the rest of your treatment - hope you get this resolved. xx
Hi ladies I had my 1st tax on Wednesday + have been rough since!! Felt ok thurs but the bone pain kicked in Friday + my heads in bits. Feel like I’ve been hit by a bus 
! Also have the waxey mouth but not as bad as some of u ladies sound thankfully. Day 5 today so maybe the worst is yet to come? Just feel really weak as if my insides are rattling. Hopefully it will get easier with time for us ladies. Apparently tax is the gold standard when it comes to bc chemo so at least we know the se’s are worth it!
Tina xx
Oops I meant to ask if any of you had experienced itching on the tax? My face+ neck are really itchy + my face is bloated off the steroids? I’m hoping for some taxotere weight loss after Reading your posts coz iveput on 10lbs since starting chemo (+ I had plenty to lose before that too!) x
Not the itching, but definitely the bloating - would gain 4 or 5 kilos, then lose it all overnight (after 6 or 7 visits to the loo!). I’ve finished Tax now, and the mouth problems are much better - got taste back after three weeks - still have thrush in my throat though - 3 months and counting!
Hi Tina, I’m on tax as well (have liver and spine mets) and the first time I had it, I was really awful. I was sick and the bone pain kicked in, everything the same as you. I also had the itchy arms and face and the woolly mouth. I’m having my treatment weekly (3 on, one off) After the first time, the symptoms have not been nearly so bad. I don’t have much itching anymore and I haven’t been sick again. Unfortunately, I do get the bone pain and horrendous indigestion and my mouth constantly feels as if it’s coated with tar. Nevertheless, I do manage to live a pretty normal life and one bonus of having the tax weekly is that I haven’t lost my hair although it’s in crap condition. My nails peel constantly and I’ve lost a few eyelashes. I’ve just read this back and it all sounds miserable but I don’t mean it to be. I’m honestly coping with it ok and I pray that you will too.
I hope that everyone is feeling well today, must dash cos like Finty I’m constantly running to the loo. ~Take care~ Lotsa love, Dianne x x x
Hi all
Dianne- Sorry to hear about your se’s -I think I’ve been very lucky as not had the nausea and sickness that other people have. I’ve had really bad indigestion but never thought that it was the chemo as I’ve always suffered and am on tablets (but I guess it makes sense really). I’ve been wearing very dark nail varnish because I had read on here that it was one way of preserving the nails- so far so good.
Bbhoonie & Geewhiz- Thanks for the Bovril suggestion- I’m going to try it as I like hot drinks and have resorted to drinking hot water because everyting else tastes so awful.
Recs- certainly going to ask the nurse on Monday about thrush. hadn’t even considered it and didn’t realise dex could cause it.
Tina- Sorry to hear about your se’s. I’ve read that the bone pain can be really bad. Other girls on here recommend that you get really strong pain killers prescribed by the Oncology team. Maybe worth asking about.
Thanks to everyone for their best wishes. My symptoms appear to be lessening so I am hopeful that the Tax is working. I’m just really tired constantly so I’m quite limited in what I can do at the moment and there is only so much daytime TV that I can take!!
Hope everyone is well and that your treatments are going well.
Love
Jennie x
Hi Jennie, Hope you are well today. I’m going to try the dark nailvarnish even though it will look ridiculous on these little stumpy nails!!! Saw the dentist on Monday and am trying Corsodyl mouthwash to alleviate the woolly mouth symptoms. Sorry, I didn’t mean to sound negative about my se’s. Really I’m coping quite well. No indigestion today so far thank goodness and I had a CT scan yesterday so I’m hoping for some good results when I see the ONC tomorrow. Fingers crossed.
Bboonie, I’ve got some lemon and ginger tea bags so will see how I go with that, should help with the indigestion as well.
Tina, I hope the itching has subsided a bit, I just kept a big bottle of thick body lotion next to sofa in the lounge and everytime it started I used that and it did help. I think that the itching will probably subside after a couple of treatments as I hardly ever get it now. Are you having weekly or monthly tax? I’m on weekly.
Anyway, hope you are all feeling good today and being kind to yourselves. Lotsa love, Dianne x x
Hi All
Just to update you. I had my second dose of Tax yesterday, feeling quite well today- must be the steroids!
Recs
Thanks so much for the advice regarding possible thrush. The doctor has confirmed that I have thrush so now on medication so hopefully will help.
Dianne
Think I might try the tea you suggested for Bhoonie because I have found indigestion a problem too.
Hope you have had good results from the scan - how did it go?
Best wishes to all and I hope treatments are going well for you.
Keep in touch
Love
Jennie x
Hi Jennie,
Glad you are ok so far, I’m taking Gaviscon as well now, the ONC said it was ok.
Scan results not so brilliant I’m afraid. The tumours have shrunk in my liver but he says not as much as he’d hoped. So that put me into a black hole over the weekend. However, I’ve pulled myself out of it now and the Chemo nurse said that sometimes it doesn’t work until the end and at least I’m responding to it. She said if he thought it wasn’t doing me any good he would have changed it to something else, so I’m just going to believe her!!!
I went to a ‘Look Good, Feel Good’ pampering session yesterday which was very enjoyable and came away with a big bag of goodies. It’s worth going to one if you haven’t already been.
Anyway, hope you are well and that everyone has a good day. Take care, Lotsa love, Dianne x x x
Dianne, so sorry to hear your tumours have not shrunk as much as your onc would have liked.
Regarding horrible taste in the mouth, I suggest cutting out all salt - it makes a huge difference. Also looking at ways of supporting your liver. (Water, fresh fruit and vege, no dairy, brown rice) The tongue helps to detox your body and that horrible white coating is toxins coming out.
I had 3 fec and then 4 tax. I had a huge diet change after my first tax and the reduction in SEs was virtually instant and dramatic. I know there has been a few threads on diet here, with mixed reaction(!), but for me diet made such an impact on my SEs that. The bone pains were still there, but I did not need painkillers. That said, no amount of good food could help with the fatigue by the final tax!
Also, Chemo attacks the good bacteria in your stomach so healthy eating and probiotics are a great way to control thrush.
I couldn’t eat many spices either and went of tea, but drunk loads of water and herbal tea. With a strict diet it took only 5-6 days for my tongue to return to normalish colour after each tax.
Didn’t have tax but got terrible mouth after EC, found orange ice lollies really helped, just stuck the lolly in my mouth and it numbed it as well as taking the taste away
Hi Gretchen, Thanks so much for your tips and your kind message regarding my scan results. (I’ve decided to ignore them and hope it works better from now on)! I will try to cut out dairy products and salt and see what happens. I do drink lots of water and eat fruit and veg etc. The woolly taste seems to come and go, so maybe it’ll get even less after I make a few changes. I haven’t eaten spicy food since I had the dx as my liver can’t take it. I’m having the odd cup of ginger tea to help with the indigestion which is my worst SE and I don’t really take a lot of painkillers.
Anyway, thanks for that and I hope you have a good day and weekend in the sunshine. Take care of yourselves everyone, lotsa love, Dianne x x x