Taste Buds up the Creek

[Lainey66]

Hi All. I am finding that food is becoming a torture. Since my last session of A&C chemo, I am finding that everything tastes dreadful. Not the 'metalic' taste as before on another chemo, but absolutely disgusting, even a glass of water. I am hoping that this rights itself soon - I'm looking forward to going for a meal with some friends next week and if my taste buds are still Out of Order, I will have to cancel. I have tried pineapple chunks as advised by the nurse at the hospital, but all that happened was that they hurt my cut tongue terribly. Oh the Joys. Any tips on getting the taste buds working again will help. Thanks. Lainey xx

[wobblybee]

I had a similar experience.😏  Nothing tasted the same as I expected it to.  I had thought that it would lead to a welcome weight loss but it didn't happen, so I felt doubly cheated🙄

After my first chemo I had a desperate urge for burger & fries 😋

If anything takes your fancy , just eat it 😊xB

[Lainey66 in reply to wobblybee]

Thanks 😊 The thing is, it's not that the food tastes different, it actually tastes as though absolutely everything is rotten. It's been very bad this last three weeks. I have lost a lot of weight and even struggle drinking water I've lost 3.5kg since last week. Since October I have lost 2.5 stone. I could gladly say that the loss was needed but not this way lol. Lainey x

[Jennymary]

Oh Lainey. So sorry to read you have this to deal with, I haven't got any advice on the subject but I can send 'hope you eat well soon', love and hugs to you and everyone else going through a similiar problem xxxx

[BernM59]

I have a book called the cancer-fighting kitchen. They recommend adjusting the flavour of any food by adding different combinations of: olive oil; lemon; sea salt and maple syrup to your taste which they say changes every day. This worked for me. 

Tips from friends were: wash your mouth with baking soda and water just before eating: eat crystallized ginger to take the awful taste away: the soda worked for me but not the ginger. 

Final tip : use strawberry children's toothpaste instead of normal - it tastes better- and this did work for me. 

I do hope some of this helps Lainey and wish you strength and luck. Bernxx

[Valerie68]

Hi Lainey , AC chemo nearly killed me ! I'd 6 sessions every 2 weeks! God I'll never forget it ! I just couldn't eat because all food was horrible ! The texture made me gag . I did lose about a stone ! I could stomach custard and chocolate . I got reflux and was prescribed meds for that as I couldn't swallow liquids . My last treatment of AC was August last and my taste buds never came back to normal . The best way I can describe it is that it's akin to being pregnant . Certain food smells make me nauseous , bread makes me gag! I crave sweet things . I used to drink 8 cups of coffee a day and now I can't stand the smell of it . I'm addicted to tea . 

[Sandy108]

Hi Lainey, sorry to hear your struggling with your taste buds, I'm having similar issues but no weight loss (think I'm making up for by eating too much sweet stuff), I can't have anything slightly spicy, brushing my teeth sets my mouth on fire (I've started to use my kids toothpaste lol), and I can't drink tap water unless it's in a hot drink - currently drinking lots of bottled flavored water.!

Wish I could offer some advise instead I'll send you lots of hugs xx

[Lainey66]

Thank you all so much for your kindness, support and advise. I'm certainly going to try out the suggestions. Anything at this stage. AC chemo is truly tough going. I start CMF in a couple of weeks time. I hope it is not as cruel as AC. It's also at the same time as my radiotherapy ... Dear lord ladies, we all deserve a blooming holiday from all this 😜 Sending you all hugs, love and support back xxx 

[Decomtamination]

I had the same through chemo, I found I started eating stronger tasting foods to the amazement of my family I don't do spices or hot currys  it worked for me it's up to you if you want to try it doesn't work for everyone it's just trial & error & I put slices of lemon in my water, good luck hope you find something tasty 😘

[Kirmy]

Check for oral thrush. This causes white, yellow plaques on the tongue or the roof of the mouth etc.  I had this for seven days each time (FEC-T) and I needed fluconizole and nystatin each time...the sore throat was a give away. I could to.erate really sweet things and porridge and eggs. So I loaded on protein in the form of eggs, ate fish even though it tasted like arse and drank loads of sweet coffee.

It will pass. It sucks but it will pass. Speak to your oncologist about getting treatment for your disrupted gut bacterial ( you're likely fungal).

[Lainey66 in reply to Kirmy]

Hi Kirmy, I certainly did have thrush and have had it treated. It has occurred twice and was a blasted nightmare. My tongue was in total bits with it. I'm managing eggs (as of yesterday) and have also managed some rice - but I think I'll pass on the arse 😂😂😂😂 I'm drinking water by the bucket load. Hope all is on the up with you. Lainey 👍👍

[Judyrn in reply to Lainey66]

Thanks for asking this question?  I'm new to the BC chemo arena but am having the exact same problem.  I didn't even think about thrush.  💐

[Lainey66 in reply to Judyrn]

Hi Judyrn. I have used bmx mouthwash that you swallow. It numbs all the pain In the mouth and throat, also oramorph and daktarin. That all helps the pain in mouth and throat but does sweet fanny Adams for taste buds. Tonight I have tried a glass of Cabernet, and guess what... It's good I am managing anything that has not been cooked in fat or oil als no dairy products. So it's now narrowed to salads minus cheese or dressings. Soups are ok too. Hope your taste buds improve soon. I'm dreading losing mine again I my third lot of chemo. Take care. Lainey x

[Judyrn in reply to Lainey66]

Thanks Lainey. I appreciate all the info.  I have finished 3 rounds with one more to go.  I'm looking forward to enjoying a good glass of wine sometime in the future.  Cheers!

[Hidden]

Sorry Laoney but no cure for this one except heavily seasoned food! Hope it gets better soon xx

[Hidden]

Hi lainey. I too found everything tasted really bad.through trial and error I found sipping potato and leek cup a soup helped me.i lived on it for 2 outta every 3 weeks.i actually put on 2 stone over chemo treatment through steroids and just lack of movement from exhaustion and pain.today is my 1 year anniversary from diagnosis and thankfully I'm doing great.keep strong x

[Lainey66 in reply to Hidden]

That is fantastic event to hear. I am doing ok generally but the AC has been a bit of a nightmare. I'm hoping CMF will be better. I'm looking forward to celebrating many years of being cancer free once this treatment is over and I I wish the same for you. Lainey xx

[EW03-03]

Hi there - taste buds come back to normal after chemo am afraid 😖 But something to look forward to. 

[Lainey66 in reply to EW03-03]

Thanks 😀 Truly something to look forward to xx

[Lorraineam]

I found lots of things didn't taste the same whilst having chemo.  I started drinking orange juice then went off that so switched to milkshakes.  I found I went off food that was dry too.  I would like to say I lost weight but because of the steroids I didn't.  One good think to come out of it though was I rarely eat chocolate now.  I used to be a chocoholic but it just didn't taste tight.  Since I finished treatment my taste buds have returned to normal.  Best wishes to you x

[elainemaria]

yes water was disgusting for me too. try a little juice in water. im afraid its better to eat bland foods. but it will.come back eventually.why dont you join your friends after they have eaten as its important to keep in touch with the outside world. i just stayed in tho prefering my pjs and own company. a d just ate when i felt like it. 

[Mell]

Hi Lainey so sorry you're struggling with this it must be awful. This only advice I can give you is that when I was a student nurse many years ago working at Christies we used to make our chemo patients lots of milk shakes and complan/build up type drinks with lots of ice and ice cream added to numb their mouths and give extra calories, strawberry and banana seemed to go down well. When I had my radiotherapy in January I went off tea it tasted awful, metallic but no idea why that should have happened and came back about a fortnight after I'd finished. Hope this finds you well, stay strong sweetie x

[Lainey66 in reply to Mell]

Thank you Mel. I'm finding anything cooked in any fats/oils and any dairy products are awful to the point I am throwing up. The sore mouth and throat has now cleared. I'm eating fruit and veg at the mo. I'm 2.5 stone down since October but recently the weight is just falling off me. It has be a bit worried to be honest. In weighed weekly and I'm losing on average 2.5 kg per week - last week it was 3.5 kg. my chemo is going to have to be changed as my weight has dropped too much now 😕

[Mell in reply to Lainey66]

Oh Lainey I really feel for you because loosing so much weight will be sapping your strength on top of the treatment too. Really hope you turn a corner soon sweetie x

[Lainey66 in reply to Mell]

Thank you Mell. In all honesty I was fairly over weight when first diagnosed. Once this chemo obliterates these cells, I will be a much healthier weight and my healthier eating will pay dividends. However this was not how I envisaged losing weight and you are absolutely correct. I feel quite weak. But, remaining positive and resting when tired is helping. It makes me laugh when people see me and say "Omg, you look so healthy and well" but inside my organs feel like jelly, eyes like lead weights and joints feel collapsable. However it's not stopping me from laughing and planning girlie weekends away with pals. I hope you are doing well, and making the most of life. Big hugs. Lainey xxx

[Mell in reply to Lainey66]

Oh Lainey you are such a tonic you always make me smile. I am doing great and enjoying people telling me I look so well (even if it is just the tamoxifen rash making my cheeks pink!). Really keeping my fingers crossed for you Hun x

[Lainey66 in reply to Mell]

And me for you Mell xxx

[Hidden]

Lainey, have you tried coconut milk to improvise cool desserts that would otherwise be dairy desserts?  I have found the canned coconut milk works well in substitution for milk in tapioca pudding.

Pulling for you here, wishing the best for you.