Problems with eating and taste

[SarahMacey]

Hi everyone, I’ve just finished my last chemo a week ago having had 3 FEC and 3 docetaxel with trastuzamab and Pertuzumab and am really now struggling with my food. I’ve dropped 7lbs in the past week and I’m runnng out of foods to try because everything just tastes repulsive. And it’s getting me guite down to be honest 😩 . So apart from some cuppa soups which I can tolerate, egg and baked potatoes little else is palatable. Even drinks are difficult including water, which with no taste you would think would be fine. But it just tastes awful. I’ve tried citrus fruits but that’s worse; spicy food is bitter so I’m at a loss! Any suggestions greatly appreciated! Especially as I now have to be on Herceptin therapy for 12months and these side effects can continue. Thanks for any tips 🙏

[Lainey66]

Hi Sarah. Buy a tin of pineapple cubes in syrup not juice as the acidity might be too much for your mouth at the moment and create ulcers. Eat a cube or two before having something to eat. These help in activating and opening your taste buds and it helps a bit. I had the very same problem and this did assist a small amount. As this was your last chemo, you will find that your taste buds will begin to come back. I can no longer eat bananas as the taste was vile during chemo and the only texture was a very gloopy texture which made me quite sick. It put me off them totally. I also had the same issue with water, however if you have ice cold water and try drinking it it will help in washing the toxins out of your system and speed up the return of your tastebuds.

I hope this helps you.

Lainey66💐💐

[SarahMacey in reply to Lainey66]

Thank you Lainey66 I will go and buy sone pineapple! I’d love to taste something! Do you know how long it will take for taste now to resume ? Thanks X

[Lainey66 in reply to SarahMacey]

Hi Sarah it took about three weeks to be honest. You really do have my utmost sympathy as that was the worst part of the chemo for me. It started after my first chemo in the October until the following June. I lost a heck of a lot of weight, not a diet I would recommend 🤭🤭 I have blooming well found all the weight again mind you 😂 Take care and wishing you best health always. Lainey xxx

[SarahMacey]

Oh bless you and thank you for your help and advice! Yes I must admit that’s the main hing that’s causing me issues. So at least now I know I’m in a count down to regaining them!! 😁😁😁🙏👍☺️ All the best and thanks again! X

[carolinenailsea]

Hi Sarah, congratulations on getting to the other side of chemo. Such a tough time, hopefully things will improve from now on for you.

I finished chemo a year ago almost to the day. The horrid taste was one of the worst side effects and I too lost a couple of stone as everything was vile. I found Lainey's tip re pineapple was good. I also found melon nice. My taste buds improved over time but for me it was only very recently that they have come back 100%.

Best of luck with the rest of your treatment. Caroline xxx

[SarahMacey in reply to carolinenailsea]

Thank you Caroline. Yes I too have found water melon has been good! Thanks for the message and support. Hope all continues to go well with you :0) XX

[Vic1970]

This is exactly the same as was for me-you will get through it,I found it was a couple of weeks before I could stomach anything really and the taste of even just water was disgusting as you say.Wine gums helped me and dare I say full fat coke was my best friend,(which goes against all the health advice!)-Just find something that you can enjoy however small.I was the same with eating jacket potatoes and chicken,that packet chicken noodle soup was good too,the really watery stuff!Keep going ,your taste will come back very gradually.love Vicky.x

[SarahMacey in reply to Vic1970]

Thanks Vicky! that's all great advice and help! It good to also know that what i'm experiencing is not uncommon. And I guess with the packet food or soups it must be something to do with the salt content? But as you say, what ever works, helps you get through it! onwards and upwards! I've also found bitter lemon seems to be okay so that helps greatly with making sure I get fluids in! Thanks for your help and advice, warmest wishes to you, Sarah X

[Jenny1410]

Hi I’m having the same thing nobody seems to know the answer it’s heart breaking just looking for something to eat as I also have to watch my calcium levels did the pineapple work for you.?

[SarahMacey in reply to Jenny1410]

Hi Jenny, thanks for getting in touch. Unfortunately we had real trouble being able to get pineapple in syrup! It all seems to be in fruit juice, I guess for a healthier option? So we bought a tin that was mixed with light syrup and juice and tried that. But whilst I could taste it slightly my taste hasn’t really improved. But I’m finding psychologically I’m getting better now trying not to stress about it and knowing that as each day passes, it’s a day nearer getting back to normal. I’ve had to force myself just to eat regardless of whether it tastes okay, and getting food down, obviously makes you feel better cause of topping up your calories. But for me, the more bland a food is naturally, the better I tolerate it. What I did find helped was cottage cheese with pineapple! That tastes not too bad apart from the undertones of sweetener! And generally anything sweet I haven’t been able to tolerate. And I’ve had to go back to having cows milk, as all other milk just tastes strange. Golden lattes are fine made with turmeric and green tea lattes! And both really good for you too!

Good luck with your journey, I hope some of this helps you, warmest wishes Sarah X

[RuthJ]

Hi Sarah. I was referred eventually to an EnT specialist as for 3 weeks they thought it was thrush eventually confirmed as dry mouth. The consultant advised use a soft toothbrush and get biotene toothpaste and mouthwash they have it in boots but you have to ask for it near the pharmacy. Mine today me to eat fresh pineapple which I think is better than anything for me. After awhile try and introduce strawberries. I am much better but certainly not cured 😂. I use to drink 10 cups of tea a day just doesn’t taste the same. Once it makes an improvement he said it could take up to a year. Also while eating if you take sips of water to help the food go down. Hope this helps Ruth x