Oesophageal Patients Association
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Taste buds

Hi all my mum had the Ivor Lewis operation 3 months ago and has lost 2 stone which we knew was gonna happen ... She doesn't really enjoy food at the moment as she can't taste nothing ... Do you reckon it's the chemo that's effecting her taste buds still that's in her system before the operation as she didn't have the chemo after the op ??

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I too recently had IL op, but my taste buds have stayed intact. Perhaps this only affects some people. There are helpful drugs that can increase appetite.

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My wife had I.L. Feb 2016 and still everything she eats feels slimy. We have spent quite a bit on specialists to try and find a solution to no avail. I am convinced it was the chemo. Now we have come to the conclusion she will have to live with it.Sorry to be so negative. I hope this is not the case with your mum.

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I had my op 6 months ago, tastes were very strange at first, couldn't stand cooking smells. Artificial sweeteners smelt and tasted much stronger, I could spot them a mile off. Couldn't taste sugary sweet things so I now eat chocolate and sweets which I never did before. Taste buds now more normal, don't forget that the stomach is now an open tube and that it gives off its own smells which take some getting used to. I have not had chemo due to a blood disorder but have just been given the all clear after a total body scan. Everything gets back to normal or we accept the changes given time.

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It is not unusual to experience loss of taste. This is sometimes the chemo, sometimes the surgery. Keep drinking water and maintain oral hygiene. The taste buds do normally come back but it is a mysterious process and I am not sure whether anybody really knows why and how. It is a matter of patience I'm afraid.

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Similar things have happened to myself!

I have also lost two and a half stone and that was three years ago it is really difficult to put on any weight. I find if I force myself to eat more I end up going to the loo even more.My taste buds have also changed big style! I used to love sweet food and chocolate but now I find I have moved over to the savoury side, sweet stuff will often leave me feeling very sick.

I had no chemo before or after so I cant blame this.

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Hi calboy. I had the IL it will have been five years this nov. And chemo does change taste. A lot of stuff tastes metallic which was horrible. And after op taste also changes stuff I loved eating I don’t like. And stuff I didn’t like eat now very odd bit like a cake which I loved my head says yum. Buy it then have one tiny mouthful and throw it away. Lots of other people gave the same. Just have to see what suits your mum now hard going for a while good luck. Lorayne

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Hi Calboy. I had the IL op three years ago. Eating and regaining my appetite and enjoyment for food has been one of the biggest adjustments I have had to make. The operation removes the part of your stomach that produces peptides, this makes you hungry, it also removes your vegas nerve which is the route by which you stomach tells your brain that you're hungry. So you have to learn to eat in a different way. My tips are..

Investigate all,the countless tips, advice etc..on dieting and losing weight and do the exact opposite.fill your cupboards and fridge with foods but above all,take an interest in food. Your taste buds still work but the brain needs to bo re-educated. If you are,in,the U.K. You should look at a charity called Lifekitchen run,by a cook and. Cookery writer called Ryan Riley. They are dedicated to finding foods and ways of,preparing food to help people undergoing cancer treatment but it is specially relevant to those of us recovering from oesophageal cancer.

Hope,this helps if you want a few deals and recipes pleas drop me a line my Email is prendergastmichael@hotmail.com.

PS,if you live in the U.K. I run a self help group for oesophageal and gastric cancer patients in Purley in Surrey and there are several,others throughout the country.

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thank you all for the replys

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I had my IL November 2013. I lost my sense of taste for 18 months, everything tasted like cardboard. I still have days when things just don't taste right, bananas and chocolate can taste bitter. I also never feel hungry and food and eating isn't an enjoyment anymore. My surgeon said that loss of hunger is nothing to do with the vegus nerve being cut because people that have a gastric by-pass also have this and the nerve isn't cut also the top of their stomach(where grehlin is secreted) is left intact. Nobody in the medical profession seems to have an answer so I guess I just have to live with it but it isn't easy.

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Hi i too lost the tastebuds for a many months after surgery. Also things that reminded me of chemo made me gag. Although my food intake and diet has changed(due to quantity and dumping) i have regained my tastebuds and enjoy foods I went off.

Good Luck

Debbie

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Yep, it happens. My taste was fine after chemo but not after surgery. It is more or less ok nearly 12months on but likes and dislikes have changed. I used to love black coffee now can't stand it.

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Hi Calboy! So pleased your mum is eating again after all that she went through. She certainly had a particularly rough time. My husband had chemo both before and after his op. Last chemo was 3 months ago. He also lost 2 stone and his taste buds have changed a lot - in fact he says things change from day to day. He doesn’t have any appetite and says there are days when everything tastes the same. When he cooks sometimes, (eg a chilli), I end up not being able to eat it as he’s made it so spicy hot so he can taste it!

Apparently-we’ve been told - the side effects of chemo can last up to a year. On the taste/appetite side of things it’s worth trying what’s been suggested to him - a small glass of sherry before meals/adding extra seasoning to food to “zing” them up a bit. Sometimes this works for my husband but he says there are days when he has to treat food like medicine and make himself eat.

All the best to you both,

Kate

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Thanks Kate

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This happened to me and last oking back it was the post op chemo affecting my taste buds. Once chemo has finished your taste buds will recover. Xxx

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