Taste buds appalling after Taxotere

[counrygirl]

This is the first time I have posted on here and the title of this post is the reason as I am being driven to distraction by the most awful taste in my mouth!

I am having neo-adjuant chemotherapy (3 x FEC and 3 x T) and have got through 3 x FEC without too much problem.  I have had another mamogram and ultrasound and the lump is shrinking and nothing in my lymph nodes any more so all good so far.  However, I had my first Taxatore infusion (plus Herceptin injection) eight days ago.  I felt absolutely fine for days two and three, then was hit hard by fatiuge and bone pain (also injecting myself with G-CSF due to low blood cell count) and have felt pretty horrible since then, but a good bit better today.  The fatigue and pain I can cope wth as I know it will is only temporary but I have had the most awful taste in my mouth for over a week now.  Please can someout tell me if I will get my sense of taste back before my next session of T? 

[Katiemac]

Hi Miss P

Really understand how you are feeling as found the whole food and drink thing so difficult when I was having Docetaxel.  Like you, found melon great and tended to stick with brown and white food ie Alpen, plain pasta, chicken and noodle soup and rice although couldn't cope with bread.  Also found that hot chicken or vegetable stock tolerable and had to really force myself to try and drink water.  Good news though is that after 6 cycles and 3 weeks since my last dose, tastebuds are nearly back to normal and I have never appreciated or enjoyed my food so much so hopefully you are nearly there too.

I too am still struggling with peripheral neuropathy - can't do up any buttons and keep dropping things and definitely feeling the cold much more than usual now that the weather is turning colder.  It is definitely  worth mentioning it to your oncologist/chemo nurses as they want to know particularly if it's getting worse and they shortened my last dose of Docetaxel to try and help with the symptoms.

So hoping that things got better over the weekend. xx

[cdc1811]

Hi MissP. With regards to your hands and feet has your oncologist ruled out a hand/Foot syndrome?. After my first docetaxel cycle my feet became extremely sore and red. I could hardly walk and then the toes started blistering, my hands went very red and itchy at times. I was diagnosed with hand/foot syndrome and told it was a severe reaction to have happened so soon and that my 3 weekly cycles of docetaxel needed to be stopped. I will be starting 9 weekly cycles of Packlitaxel instead starting next week. It’s meant to be a much ‘kinder’ regime with far fewer side effects. Might be worth asking about it if you haven’t already. The T also played havoc with my tastebuds but the steroids made me permanently hungry and only for absolute rubbish- mainly gummy sweets! My taste has come back 3 weeks after my dose of T. Hope you’re feeling brighter soon, Take Care x

[MissP]

Hi Ladies,

I can truly understand where you are all coming from. FEC was a manageable but T has knocked me for six. Each cycle has been horrendous I’m losing on average around 6kg per cycle. Food of any kind not my friend, liquids are also a struggle. I’m finding the only think I can eat/drink and keep down Melon (any kind) and plain water.

Thought my taste had come back last night so had a Quorn lasagna, that stayed down for 10 minutes, so back to my staples. Also laid low with peripheral neuropathy, my hands and feet are in bits. Nearly the weekend so hopefully things should start to settle down. But there’s light at the end of the tunnel and I’m sure we’ll all get there. Good luck Ladies, stay strong. Xx

[Molliemoo55]

I’m a grumpy old bag too and will burst into tears at tge drop of a hat, so you’re not the only one ! X

[Molliemoo55]

Hi Katie, wish I’d come back on here sooner, I’m so sorry you’re having a rough time. It’s so depressing and frustrating. I’ve just had to text my mum to tell her the soup she made was actually nice , because it surprisingly was! Not quite sure what was in it but it was green and I think it had lentils in. I don’t care too much what was in it because it actually tastes ok. I had a reduced dose of Docetaxal this time as side effects so bad. Thankfully I don’t have the diarrhoea this time. Taste is still awful and it’s the texture of stuff too that’s disgusting. I’m so knackered and can hardly muster up the energy to do anything today. On the plus side, I lost half a stone , which I could do with losing! Ice cream is quite good btw. X

[Katiemac]

Thankyou so much Jacq for all those tips and will definitely try some of those great ideas.  

You are so right when you say that it is just one more bump in the road to good health and hopfully will make me appreciate food all the more when my tastebuds come back.

Katie

[JacqB]

Hi Katiemac
These are the foods I’ve found tolerable:
Porridge with honey
Chicken or vegetable soups
Whipped cream with berries
M&S sugar free rhubarb & custard drops
Haagen Dazs ice cream
That’s about it!
Basically bland and sweet works for me.
I’ve got my head round it now and accept that this is just one more bump in the road to good health.
Hope you too find palatable foods to enjoy.
Jacq x

[Katiemac]

Dear Molliemoo55

Spoiler

Bit of a newby to discussion groups but I was desperate to chat/have a rant to other girls as to how on earth I can properly beat this foul taste as it is really getting me down but feel ridiculous moaning to other people who don't understand.  Have just completed my third lot of Carboplatin, Docdtaxel, Herceptin and Pertuzemab and came on quicker than ever this time, so much so now that I can't even think about food, cooking etc so will definitely have to delegate that out to the family.

Thought that Mcdonalds might just sort me out ( not a regular consumer) so have just jumped in the car, driven 20 minutes to pick up a burger and fries but EuuuuCH - straight in the bin.

Any suggestions from anyone as to things they have found to eat that have been ok would be SO appreciated as running out of ideas...

On the up side, my lump has shrunk too which is fab but realising I think just how important to my mood food is and fast becoming a really grumpy old bag!

[Molliemoo55]

Good on you for persevering! I hope bread comes back to a certain degree, but I suppose it’s caliries saved if it doesn’t . Next one next Monday and don’t even feel I’ve got over this one yet!

[Daisy200]

Totally with you on wine hurting. You can feel it go all the way down. I persevered though 🙂

[Daisy200]

Definitly one of the worse tax side effects, but like everyone says it doesn't take long to get back to normal, it just feels like a bloody eternity.

I basically lived on black coffee, ice cream and tangfastics. Not great as I'm dairy intolerant, until I discovered Ben and Jerry do dairy free, which is probably the reason I lost no weight. I decided after tax 2 that fruit was the answer, spent about £30 on every fruit available in Tesco then sat and watched it rot. Three weeks since my final tax and pretty much back to normal now, just the occassional hint of the dark times.

I too sat and cried over wasted meals that tasted vile and couldn't be stomached. I still can't look bread in the face.

[Molliemoo55]

Hi Jaq, soup is one I can kind of do too. I was made up when you said you’d lost so much weight (don’t tell your onc) I can easily afford to lose a stone or so! My sister suggested McDonald’s chips, which I reluctantly tried before, yuk (not brilliant anyway but totally foul). Lucizade is not bad and last night I had some Guinness, and that was nice. I am missing wine and coffee too, but wine hurts and coffee smells too bad to even try. I find I can shovel a few blueberries down, which is good as they’re quite healthy. Finally the diarrhoea seems to have calmed after having first tax 11 days ago, which is a relief. I’ve only just heard that grapefruit should be avoided, as it can worsen side effects. I’m so pleased my onc has agreed to lower my dose over next 3. If I find any other things that are edible ish I’ll post them in here. Good luck with your treatment, here’s to getting back to normal soon x

[JacqB]

Hi Molliemoo55
Everything tastes like pond scum! Trying not to be too down hearted, but like you, I’m really struggling with food. Can just about manage porridge and vegetable soup. Really missing coffee and wine! Bush tucker trial is such a fitting description of mealtimes. On the upside I’ve lost 20lb!! My oncologist is panicking but it is weight I need to lose anyway. Two chemo done, two to go, so hopefully I can enjoy a nice meal sometime in August! Hope you find something you like to eat soon.
Jacq x

[Molliemoo55]

I have been desperately searching for clues as to when this awful taste thing might stop. It’s good to hear that the taste does come back. Had 3 FEC and was ok ish, but the Docetaxal, Herceptin and the one beginning with ‘P’ has hit me hard. Bread is one of tge worst things and feels like eating a kitchen wash up sponge! Everything is vile if I’m honest, every time I eat, it’s like a bush tucker trial! I cried over my plate like a five year old before, just trying to get a few mouthfuls in! On the upside, breast lump shrunk loads, so at least it’s battering that as well as me! Losing weight will be good too, so must TRY not to moan too much x

[DilysP]

Well done Linda! I lost a stone and a half over chemo and have never put it back! Best side effect ever in the scheme of things. Still have a wardrobe full of trousers that fall off, but new size tens that don't.

Go for it. It gets better from here. Wish you luck my dear. And well done for getting through the worst. Not that we had much choice!

Take care

Dilys
xxxx

[elljaydee]

Thanks guys,

It has been worst this time (last time) but you are right and it will come back and in the meantime i can celebrate the fact that several pairs of tight trousers now fit me.

thanks
Linda

[DilysP]

Hi Pat

You said it better than I could. You are absolutely right. And wasn't it a relief?

Love to all

Dilys
xxxx

[cass141]

Linda, Dilys is right. It will come back and it'll be wonderful. I like you craved things - coffee, tea, steak, fave sweets and they all tasted the same, like they'd been scraped from the bottom of a skip. Some evenings I'd try 3 different meals to eat and they all tasted the same. I had last Tax on 2nd April (it was my 3rd and by far the easiest for some reason) and within 2 weeks taste buds returned and now it's like they've never been away. Honestly, not long to go... hugs Pat x

[DilysP]

Hi Linda

Once you have finished chemo it won't be long. You are so nearly back to tasting everything again. Honestly! Nearly there my love.

Take care

Dilys
xxxx

[elljaydee]

Hi

Well i drank iced water whilst having my last chemo and.....
Really have the worst sludge gob ever. Probably cos it was my last chemo and last tax. Everything and i mean everything tastes disgusting, every smell is evil. I want to eat ice cream, scoff cream crackers, drink coffee. No I dont because i know what they will taste like. Iced water did stop the sore gob though. Mouth has tasted horrible but hasnt felt that bad.

Kids have just made a fruit smoothie, we put all the fruit that needs to be eaten quick in it, some chocolate options to give it a bit of flavour and guess what - yep tastes revolting.........

I want my tastes buds back!!!!!!

Linda

[snoogle]

Hi, Hope everyone is well. I have just got a book about food and cancer which has a section on dealing with taste issues during chemo. Will sit down and read it thoroughly later.

Snoogle
x

[snoogle]

Hi all,

I have really lost my sweet tooth on taxotere. But as I have given up dairy and red meat (in all their forms) it is hard to find sweets/desserts anyway. My daughter was shocked when her dad told her that jellies and some sweets were made from dead cows! I had the first strawberry from the garden last week which didn't taste of much because of where I was in the chemo cycle, but I had the first ever raspberry that I have grown today and it tasted delicious. My new blackberry plant is full of fruit waiting to ripen.

Best wishes to all,

Snoogle
x

[Allicat]

All I ate when I was on Taxotere was scrambled egg with buttered white toast,bananas and drank Roses lime cordial with water.
I haven't bought or eaten a banana since because it reminds me of the horrible taste in my mouth!
Alli x

[Little_H]

Hi Ayla,

Thanks for the suggestions,love the idea of the Guiness ice-cubes,wonder if they'll stay very black...

Love Little H x

[DilysP]

Hi All

You have brought back all my memories of FEC and Tax in 2007! I couldn't eat for ages. Everything tasted awful. Looking back the good news was losing a stone and a half which has never come back. Only good side effect I had!

Once chemo is over the taste buds recover really quickly, so hang on in there my loves. I feel for you all so much.

Love and strength

Dilys

[ayla]

Little H,
Have you tried shandy to this is something I discovered the other day, can't drink any other alcohol but found it quite refreshing at the moment
Also I been told to try frozen guiness in ice cubes??

[Kindensurprise]

My tastebuds are still changed by chemo, which I finished last Oct. I used to love chocolate, but now I can take or leave it and it only tastes ok. I go much more for savoury things now. And I never used to like lemon things but now I do, which is a bit of an adjustment.

I well remember the awful mouth of chemo, and really struggling to drink water, but that passes quite quickly after you finish. I also found lime squash helped, but I could not stand having pineapple or its juice in my mouth.

Good luck to all going through chemo.

Kinden
xx

[horace]

I couldnt stomach chocolate on chemo but have been making up for it ever since:)

[Little_H]

Hi Jacq,

Thanks for the tip,will give it a go.

Helen x

[notyetinthebox]

Hi Helen, try hot Ribena, I found it quite tasty when everything else tasted shite. Get the original, not the 'no added sugar' stuff. Best wishes, Jacq.

[Little_H]

Hi Guys,

I've had 4X EC and last week the first of 4 tax,had horrid mouth almost from the start,developed oral thrush after 4th chemo.It's really difficult to find anything I like to drink,they say to drink lots & lots of water but it's very hard when it tastes so bad.I drink hot water and lemon first thing in the morning (gone off tea,milk & alcohol)and then just try to get water down me the rest of the day.
I've lost over a stone since this all began.I'm looking forward to tastebuds getting back to normal and enjoying my food again.
Sorry if this sounds so negative,I'm ok otherwise!! Honest!

Love Helen xx
ps Sorry Ayla, but yes, chocolate tastes salty to me

[ayla]

hi snoogle, How are you?
yes milkshake!
I had to take some pills and just grabbed the milk bottle, and it tasted great so then I mixed some vanilla ice cream in as well and that seems to have worked. Not the most ideal of drinks but who cares at least its liquid! I also tried the lime juice as mentioned by horace ok with lots of ice The good news is that I have had the last of my chemo sessions so hopefully the buds will be coming back in droves, then I'm gonna celebrate. Has chemo put anyone else off....CHOCOLATE?

[snoogle]

ayla, did you find anything that tasted at least reasonable?
Snoogle x

[ayla]

Hello, hope everyone ok,
Last night I was trawling through these sites in a fit of despair, eating not been too much of a problem,,,,,but drinking, everything tastes like the boottom of a slime bucket, then tonight I find some ideas to try thank you.

[starfish]

My taste buds were terrible one week after taxotere. That was six months ago. The good news is they very quickly recover and I also managed to lose half a stone which I have never put back on. This was because everything tasted awful and I got so I felt there was no point in making an effort to really cook anything if I couldnt taste it. so I lived on soup and easily swallowed things.

[snoogle]

Hello Girls,

Just to add a comment. I find that the only cold drink I can tolerate when my taste buds are barking is Peach flavour fruit and barley. Everything else tastes disgusting. With hot drinks I find herbal/fruit teas sweetened with honey are ok, particularly chamomile.

One week of tasting food before next taxotere. Two weeks without this time 😞

Snoogle x

[Cat]

Hi guys

What helped a little for me on Tax was using fresh pineapple juice as a mouthwash. I used it after each meal that I forced myself to eat. It wasn't 100% brilliant but did help a little. Can't stomach even the smell of pineapple now, though.

The other thing that helped me was eating food that appealed by colour. If my mind was crying out for green food, I'd eat green stuff like spinach, sprouts, cabbage, and so on. Other times, it was always white foods. This isn't as mental as it sounds. It's well known in Chinese medicine and is called Food Energetics. You can Google it and find info or there's a good easy-to-use book called "Helping Ourselves: Guide to Traditional Chinese Food Energetics" by Daverick Leggett and Katherine Trenshaw which is available on Amazon.

The more normal taste does come back after about four or 5 weeks after the final Tax cycle, so Sludge Gob will be a thing of the past very quickly, hopefully, for everyone.

[daisy999]

Afternoon - I am on TAC and so far the tongue/tastebuds have not been too bad. Some days I feel like I have cling film around my tongue, others normal.

I add Evaporated milk to my tea, which makes it delicious. Also add it to frothy coffee. A big thumbs up on the lime cordial and ice lollies too. Bitter lemon is also quite refreshing.

I have Difflam mouthwash, and it is good. After every chemo I have smothered my mouth with Bonjela, and so far, I have only had a few pin prick blisters.

Food wise, sandwiches are too plain, so I have crumpets for lunch
or fish finger sandwiches with lashings of vinegar. Oh yeah, tiger bread with lots of golden syrup...I am now drooling!

Hope the tastebuds soon return from being AWOL....

Daisy xxx

[horace]

Its the taxotere that does it so it should go soon.I agree about the lime cordial also fresh pineapple,well chilled sparkling water and fruit icelollies all helped me a bit.I could also manage Bovril as a drink.Tea was disgusting with milk but ok without.Lemon and ginger tea was also good.

[lizbou]

I do sympathise with the pair of you. The Sludge Gob effect of Tax was the worst SE of the whole lot for me. (I finished at the end of January, but the memory of the awful taste in my mouth will take a long time to fade.) Cups of tea, as you say, were disgusting, and water tasted like it had come from a drain. I found lime cordial made water more palatable. I also found liquidised home-made soup quite useful, basically because I could just chuck it down my throat and not have it in my foul mouth for very long at all, but still get something nutritious inside me.

BUT, the thing that helped most was dried chrysanthemum tea, from a Chinese herbalist. It doesn't taste great - I added honey - but I used it for my second and third Tax, and the mouth was not nearly so bad. Difflam mouth wash - expensive and you have to get it from a chemist - was also a help.

Hope you both feel better soom
Liz xx

[Feemac]

Hi Moofay,

I've been trying to find help with this too but to no avail, I'm 1 week after 2nd Tax and Herceptin, my poor mouth is like the sole of a boot!! last time I took 8 mouth ulcers, I heard sucking ice chips during infusion is supposed to help, so I'll be taking some next time. The doc gave me Nystan, corsodly and advised salt water gargles, which I have been doing. The taste is awful (bitter,sour!!) Yuk!! Please let me know if you find anything.

Regards

Fiona x

[moofay]

Does anyone have any tips to help with the awful taste in my mouth and the taste buds being all over the place? I've just had my 3rd (and last - thank goodness) Taxotere with Herceptin (had 3 FEC before that). That's the end of my chemo but I have a year of Herceptin to come still. Does anyone know of anything which helps the taste buds as eating is now a real ordeal? Even a cup of tea has no enjoyment. Is it just a case of waiting until it passes?