Dysgeusia (taste alteration)

[Guilane]

Hi. Is there anyone out there suffering from taste alteration. This is not not fancying food or feeling sick or not being able to eat. This is a side effect where any food I put into my mouth doesn’t have the right taste and it is replaced by a disgusting taste as though the food is bad. I have had this since the beginning of chemo 18 months ago. There is no pleasure in eating anything. I always considered it was a minor side effect I should put up with. But it’s not any more, my quality of life is becoming severely impacted. My Onc said maybe a dietitian might help, but couldn’t offer me one on the NHS and Target couldn’t help. I have looked at several studies and the conclusions are that more research is needed and the only real answer is to discontinue with the medication. Well, that can’t happen.

I would be very grateful for any help you might have to offer. Gill X

[Mammi]

Hi Gill .You are not alone! I finished my chemo treatment2& half years ago & it’s really only the last 6 mths that my food has tasted good 🤗 so it does come back but takes it time. Otherwise I’m really good 🤞🏻So I feel a small price to pay. Hope yours soon returns( Christmas would be good )Take care DeeX

[Guilane in reply to Mammi]

Hi Dee

So you had two and a half years of hating food! I have another year of Olaparib. I’m not as strong as you. I don’t think I could take it for that long. Thank you for your support. Gill X

[Lyndy2]

Hi Gill

It must be a form of neuropathy? I believe that people who have lost smell due to long Covid are being ‘retrained’ to connect the right smell with the right object or food. As smell and taste are linked perhaps this might be a route to explore for you? I have no experience myself but it’s an idea. Good luck xx

[Lewisriley47]

Hi, l know exactly what you mean,l have been on and off chemo for the last ten years and have tried various times to try to get my taste buds back to some sort of normality! I do find that fresh pineapple and lots of water helps but never seems to completely go! I hope you can find a way to help this annoying side effect. Pam

[Maldive]

Hi Gill, I had a vile taste in my mouth the whole time I was on Olaparib and had it up until recently, which was 8 months after I stopped taking it. I thought it was the meds, but I think I’ve discovered what it is, mine seems to be acid reflux, i have no other symptoms other than the vile taste, I have always taken a ppi lansoprazole but the doctor referred me to gastroenterology, I had the camera all clear, but happened to mention my vile mouth, I’ve now been prescribed a super strength ppi which has greatly improved the horrible taste in my mouth. May be worth a conversation. Loads of luck and love Dee

I can’t remember, for definite but I think gastro said reflux can be a symptom of chemo or meds xx

[tutti]

I had a metallic taste in my mouth for about18 months and everything tasted like cardboard but it did go.I also went right off alcohol for about two years because of bad taste but luckily it all went back to normal.

Good luck Viv

[Guilane]

Thank you for all your experiences and advice. There’s always someone out there to offer help. X🤗 Gill

[Starbarn]

hi Guilane.

I’m on olaparib and have had a disgusting taste in the back of my mouth. I also find things very sweet and spicy. I’ve started on gastro tablets which helps. Also brushing my teeth and fresh and fruity flavours.

I’m considering try acupuncture.I’ve been using it for sciatica/ bulging disc and it’s been very helpful. The cost privately is around £45 an hour in Yorkshire.

[Guilane]

Thank you Starbarn, I’ll give acupuncture a try. I found reflexology was really helpful with my neuropathy. I’ll also investigate gastro tablets as I have the everything tasting sickly sweet problem. Fingers crossed. 🤞Gill X

[Kjpip]

Hi Gill, is your sense of smell affected by your treatment as well? If not, have you tried cooking foods with a strong smell, or smelling something that smells good to you whilst eating? Smell and taste are very closely linked so you might get be able to fool your taste buds that the 'nasty' taste of your food is actually a very tasty piece of garlic bread or something! May be worth a try if all else fails... Good luck, I hope you get it sorted 🤞

[Guilane]

Thank you Kj. My sense of smell was affected at the beginning but is back to normal now. As you say anything is worth a try, all ideas are welcome. I have my first acupuncture on 14th Nov. Gill X