Loss of sense of taste: Feeling low since my... - My Ovacome

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Loss of sense of taste

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candyapplegrey

Feeling low since my third chemo session. I've lost my sense of taste again or rather nothing tastes as it should and my mouth itself tastes horrible so I have no enthusiasm for eating or drinking anything. And I've broken out in large spots all over my face. Just what I need now I have no hair to hide behind. Anybody got any advice on how to handle this?

Oh and the constipation. I'm going for four days at a time with no movement even though I'm taking docusate, senna, fybogel and macrogol all the time.

Candy

13 Replies

I know exactly how you feel, I have been there and the light at the end of the tunnel seems so far off. Your taste will return and a beanie hat will keep your head warm in this cold weather, do you have a wig? My go to remedy for the constipation was prunes. I ate 2/3 or 4 with my cereal at breakfast, this helped me greatly, I didn’t find Fybogel all that useful.

Stick with it, things will improve in time.

Oh Candy that all brings back memories,the great thing is that you’re probably now half way through so just focus on that light at the end of tunnel 🤗I survived on water( loads) full of ice cubes; extra strong mints; ice lollies & sherbet lemons.6mths after finishing chemo my taste is still weird but manageable . Can’t help with constipation as I still find it a problem & agree with Fee26 Fybogel is useless; prunes sound a good natural alternative! As for hair,last year I had a brown pixie cut & now have a mass of short tight grey curls but still no fringe 😩keep going , I think you are sounding really positive & in a few weeks you will looking back on why everything seemed so impossible. Big hugs Dee x

So sorry Candy this is awful for you. Nothing tastes the same after chemo but to lose all taste is different. Don't know what to suggest except heavily flavoured foods like mild Indian or Chinese. Not very healthy though. For constipation I take docusate twice a day. Failing that Bisacodyl and Lactulose Prune juice is also very good,The hair thing is so hard to get used to. I haven't quite lost all mine yet perhaps 90%. I'm wearing a wig most of the time now. A hard price to pay but no other choice.

I hope you feel better very soon.

Lots of Love

Angela xx

Hi candyapplegrey. I'm the same. I eat manderine oranges, lemon sweets, keep rinsing mouth with mouthwash, takes about 8 days for my taste to come back after chemo sessions

Oh dear, yes, taste thing is horrible, but like Patricia, I found it wore off after about 8 days. I remember checking I'd actually used an Earl Grey teabag to make my tea and not mistakenly used some nasty bird droppings and bilge water from somewhere the first time I experienced it..... I did switch to lemon in my tea and not milk during those days, drank quite a lot of low calorie ginger ale, and ice lollies helped,but it isn't easy.

As for constipation, the only thing that works for me is Movicol, up to 3 sachets a day (though I'm told you can use up to 6 if you have to) as well as making sure I had whole rolled oats and muesli every day - I was actually told by the colo-rectal consultant not to use senna because its more of a gut irritant, and as others say, have never found Fibogel useful at all. I say whole rolled oats to differentiate from that ghastly concoction known as 'porridge', meaning the oats have been cooked and usually eaten hot - I can't stand cooked oats, the taste is completely different (plus its appearance puts me off when its cooked like that, it reminds me of something someone's already eaten) so I just pour some hot water over my breakfast mix, wait ten minutes then add twiddly bits like blueberries, raspberries and some nuts or whatever I've got, maybe add a little milk and then eat it. I usually managed to get that down if it had fruit over it, even if everything else tasted disgusting... and I had a banana every single day, that was okay. I did try curry, but my mouth was way too sore for anything with any spicy heat in it, so I stuck to fairly bland things like jacket potato; mushrooms with garlic wasn't too bad, and my nutribullet spinach and cabbage with 5 or 6 strawberries (frozen ones are fine) and a tablespoon of ground flax (linseed) with chia seeds 'smoothie' was okay. I say 'smoothie' - anyone who has a nutribullet knows it not really a smoothie, more of a slightly lumpy or 'sludgy'. but healthy and relatively easy to get down. And the seed mix helps the bowels...

I do remember I felt worse after the third infusion than with any of the others, but you're halfway through girl, keep going...😉😉

Miriam

Yeah that is horrid when you lose taste like that it should level off at some point but till you complete the chemo sessions taste buds will be pretty hit and miss I needed up eating things like salt and vinegar crisps or sweet chilli crisps something with tang ...and cheese.

The constipation issue contact your chemo team the usual over counter meds I didn't find helped, ate brown bread which helped a bit and a bit makes that difference, in reference to spots just mention this I had spots on head ( no hair ) and ended up with antibiotics also I used mild creams in my case for chemo scalp like baby oil or scalp cream.

Hopefully you will contact the chemo team and get some of the issues if not all resolved.

Thanks, ladies. That's a little reassuring. After my first chemo, my sister made a meal, which I seem to remember was mainly beetroot. I added tons of salt and curry powder to make it palatable and ended up making it completely inedible. And I don't think my taste ever came back the same. I was fasting yesterday but didn't even enjoy the fruit - the sugar in it tasted weird, like aspartame. Better buy some ice lollies. I'm also conscious that this is something I've done to myself, killing off my taste buds and am sorry for that. I identify with the Earl Grey scenario. And cheese I can still taste. I have spots all over my scalp as well. GP has prescribed a gel now. Most of the hair has gone and I have a wig fitting at beginning of December. Makes me look and feel elderly.

I had a brief respite from the constipation with some diarrhoea. Strange to think of that as a bright moment but it was.

Another good thing that I'm doing (hold on - was the first good thing having diarrhoea?) are the Dimbleby relaxation sessions my hospital runs. Online which is better than in person because you can't hear the snoring when other people fall asleep. I recommend them. And I can now have massage sessions too.

Plus, my cup runneth over, they gave me a skin sensitive dressing for my PICC line, which means my arm is less sore!

Your are all brave and inspirational to me and I really appreciate you sharing your experiences and advice.

Candy xx

Sorry Candy but I would say situation normal for the mid point of chemo. It isn’t a walk in the park but it is a really effective treatment for most. You can and should try to stay on top of side effects like constipation... if your current regime isn’t working ask your nurse what might work better for you. You can get mouthwash for ulcers etc which has a reasonable taste and might help with the nasty taste but tbh your taste receptors are being destroyed by the chemo. You may have to talk to yourself sternly about getting some nourishment in, even if you don’t feel like it. Don’t give up on your mood though... you can change how you feel, you can learn to cope better with all that treatment throws at you. Ask for help from your team, try relaxation and mindfulness techniques, do all those cheesey things like a gratitude list.

You will get there and you will get a massive pat on the back when you do. Chin up! xx

Candy,

For the taste thing - I completely feel your pain. Had a horrible time with it and even had a period of time where everything (even my saliva was bitter). All I can say is hang in there. If you don't have issues with salt or sugar - I would say err on the side of very salty and very sweet. Toast with honey, chocolate, and salted nuts got me through that period of time. To drink, try Gatorade. It has electrolytes and will hydrate you. It's sweet, so it might cut through the yucky taste in your mouth.

Constipation - that one is a little easier. 5 prunes, every morning. No exceptions. Give it a day. If it doesn't help, add a glass of warm prune juice. No matter how bad things have gotten down there - prunes have always been my savior.

Pimples (are they a breakout or a rash?) for pimples, clobetasol (steroid gel) works really well. Topical that you'll need a prescription for. If it's a rash, then get with your oncologist to make sure you're not having an allergic reaction.

Good luck and stay tough.

-Kim

Hi there, I remember it well! I found drinking warm water with manuka honey and a bit of lemon really helped and after chemo i liked to drink peligrino water it was the only thing i fancied to drink and i could get loads down so it helped the constipation too xxxDiane

Hi Candy, you kindly replied to my enquiry about Docusate a few days ago and I have been meaning to get back to you since. I have recently found dried figs every evening to be just as effective as the Docusate, which feels like a major discovery after relying on the tablets for so long. I can’t stand the taste of prunes but find figs more palatable. Hope you manage to get the constipation under control, I know how miserable it can make you feel!Presumably you also noted from replies to my question, that Dulcoease is the same as Docusate and can be bought over the counter.

Hope you will soon feel better.

Love Barbara

Hi Candy, I finished my second lot of chemo about ten weeks ago and can understand what you are saying about a loss of taste. It used to really annoy me to see my husband tucking into his meal obviously enjoying it and I was eating just for the sake of eating! I was addicted to after eights throughout my treatment- not sure why. I have suffered with constipation for years and know how frustrating it can be. Whilst on chemo I went for a week and a half with no movement whatsoever which caused me a lot of stress. However I realised from experience that it will happen eventually. I started going to bed with a five or six prunes each night and that seemed to help. Good luck to you Candy.

Thanks again, everyone. We don't have Gatorade but I've found Lucozade a good substitute and the other day I had a chilli from the Co-op that I could taste. I like figs and prunes so will try to stock up on these! I was previously going to the pharmacy for stuff but last time I was in there, it was so busy, it was impossible to keep safe so they are now going to deliver and still haven no Docusate but I will try the other things you've all suggested. Candy x

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