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Rancid, Bitter Taste

J_McAllister
Posts: 2
Joined: Oct 2012

**I have also posted this message over on the Cancer Compass website. Sorry for the double-up but I am trying to reach as many people as I can with this query. We really do appreciate your time spent offering advice**

I am writing on behalf of my 46yr old sister who is being treated for Head and Neck with Unknown Primary. She is in the 3rd week of an 8 week combined radio & chemo program. Prior to commencing treatment, she had biopsies on the tongue and tonsils. She has a stomach PEG fitted.

Her overriding complaint is of an extremely bitter taste in her mouth which onset during the first week of treatment. The bitterness is so offensive that it prevents her from eating the plainest of foods. All food tastes like rancid lemon and contributes to her overwhelming nausea.

She understands that it is very important to continue swallowing and using her throat muscles - but the repulsive taste in her mouth is severely impairing her efforts to do so. She has resorted to using her PEG on a daily basis. Her husband and I are concerned she will not bounce back unless she persists with swallowing food. Her throat is otherwise not too sore, although a little swollen.

Her doctors cannot provide any medical solution to this on-going problem. They have reassured her that taste problems should correct themselves in time, once treatment is complete.

I would really appreciate any advice on this specific issue. I know people complain of 'no taste' or a metallic taste. But this is an extremely bitter, rancid lemon taste. Any tips or advice would be of use to us.

With Many Thanks and best of luck to you all, John

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

is she still swallowing water/liquids?
has she been told by her docs that she has to continue eating food?
because a lot of us rely exclusively on our PEG tubes for long periods of time, without losing the ability to swallow. me, for example.
I just wonder about the concern that she won't bounce back.

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

I used my PEG exclusively for 3 weeks out of every month for nutrients...but I did swallow L-glutamine mixed with water (plain water stung my mouth)...I've heard people say food tastes disgusting, but I never knew exactly what that meant...like if the fact that it was tasteless made it digusting, or if they were getting the metallic taste. I just went from tasting food to tasteless.

They say were all different, so for your sis to be getting a rancid lemon taste is probably her specific thing. Even if she gets one glass of water down per day, and uses her tube the rest of the time, she is swallowing. (I was terrified of losing my swallower, so forced myself to swallow something everyday).

p

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Depending on what you read there are four or five distinct tasting possibilities for the human species. Her taste buds are dying off because of the treatment. It depends in what order the little buggers are being slain and what remains in her mouth. Different combinations will yield different results. With me everything I ate tasted like pure salt. It's a sure sign that the treatment is working and a positive development. She should be able to eat/swallow close to another month yet and eventually all her buds will cease to work. Your concern is well grounded in that mal-nutrition can be a real danger but she is prepared. Your sister is ready with the peg and as stated by previous posters it's OK to just drink calories in whatever form works for her. Most if not all of her taste will return around six months after treatment. If she has not yet met with a nutritionaist to prescribe supplements for the peg it's a good time to set it up now. Most insurance will pay for the supplements and deliver to your front door. The holidays are a terrible time to go through this crap as it can be difficult to puree a turkey drumstick.

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

Bad taste can be a side effect of treatment. My husband only ate via PEG for the last few weeks of treatment because everything tasted nasty. She does need to keep swallowing, but it's ok if she gets most of her calories/nutrition through the tube.

J_McAllister
Posts: 2
Joined: Oct 2012

It is reassuring to hear your words of advice; particularly the note about tasting only salt - it is encouraging to hear the background explanation about taste bud failure as a signal the treatment is working (a positive remark I shall be sure to pass on to my sister).

We were trying to find ways she can cut the taste - whether there are certain foods which might help reduce it? Although from the sounds of things, she is likely to loose sense of taste all together as the treatment progresses. So be it; she would rather taste nothing than taste rancid lemon. However, any tips for dealing with nasty taste for now would be great. (Bad taste may seem a trivial side effect to those of you who are experiencing more painful symptoms, but I fear the taste issue is having a huge impact on my sister's emotional state. She was a chef before she got married and enjoys food. Having food ruined for her is contributing to her depression about the illness - we're doing all we can to keep her spirits up. Only now do we realize the extent to which the enjoyment of food was key to my sister's identity and happiness. Her emotional reaction towards this nasty side effect is far more powerful than I might have expected and we do so want to find a remedy. However, if it is just the promise that her taste will return after treatment - then that will have to suffice. Any positive stories with this outlook would be very welcome).

To answer your questions, yes she is still swallowing liquids and drinking during the day. She has started using the peg for scanishakes when the taste is unbearable and nauseating. Am I correct in assuming this is enough to retain her swallow function beyond treatment? So long as she swallows some liquids, even saliva, she will be OK?

Thank you again for all your interest in our story. John

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Is a Chicago based chef whose restaurant consistently comes in the top ten in the world. He is one of us and like your sister totally lost his taste but regained it one flavor at a time on the road to recovery and continued success in the rankings. Your sister will do the same.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Sounds about right to me, the timing anyway. At first everything tasted like salt, nasty mouthful of salt. Even water tasted like the ocean! When it got really bad I just focused on the actual task of swallowing but didn't have anything in my mouth. I relied on my PEG for eating, and drinking for that matter. Then later and after treatment the bad taste changed to a vinegar taste which I still have today 16 weeks post treatment, when I eat sweet foods and some red meat. There was also a period when I had absolutely no taste at all. It depends on which taste buds are being zapped at the time I think. If your sister can tolerate water, that will be sufficient for swallow exercises and nourishment can be given via PEG, that is what it's for after all :-)
Good luck to her and do tell her, this will pass.
Take care,
Billie

hwt's picture
hwt
Posts: 2011
Joined: Jun 2012

Everything I tasted was like salt, even the water I drank was salty. I figured that was better than the metallic taste people talked about because I was familiar with salt. I did hear that using plastic utensils was helpful but I never got to the point of trying that. Lasted all thru tx but quickly went away when I finished tx. Yes, water counts as swallowing. Quite a few of us had allot of success with cold milk. Might try a baked potato with butter and sour cream and plastic fork. Pancakes w/plenty of syrup worked well for me and others have said same. Hope you find an easy solution.

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

30 radiation treatments. She was a tiny little thing, who like your sister, LOVED to eat...so when her taste buds died, she too was depressed. She couldn't talk, and now she couldn't taste...However like many of us, her taste came back. So for now, all she can do is "feed" herself like a duty rather than a pleasure, knowing this isn't forever, it's just part of the process.

As for her swallower...yes, as long as she's using them at some time during the day, she should be alright...

p

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

For me, as I was "losing" some tastes, some foods came across as having an alien taste - like it wasn't food at all, but something inorganic. This creeped me out, and I had to give up on those foods.

Swallowing is crucial. I did mouth, tongue and swallowing exercises that I think helped. I was sent to a speech therapist before treatment even started to learn the exercises, and do my first swallow tests. One was to swallow with your tongue stuck out between your lips (still awkward). One was to pretend I was trying to swallow something big. Wow - was just doing some of the old exercises, and I noticed the tongue one (stick tongue out, move it to each side and up and down) still makes the side that got the most rads sore. I also had to go back and forth between saying "eee" as high and and low as I could - sounded like some bizarre alarm.

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