Remember when food tasted like food?

by Carolyn Thomas   ❤️   Heart Sisters (on Blue Sky)

It all started with a burger a few weeks ago.

My lovely daughter-in-law Paula had picked up a takeout lunch for me from the village. The burger looked perfect:  a freshly baked crusty bun, butter lettuce, juicy ripe tomato slices, yellow mustard and garlic dill pickle relish. I took a nice big bite – and then immediately spat it out onto my plate.

My beautiful burger tasted disgustingly metallic. It was inedible. It was so awful, I scraped the rest of it right into the trash. But that was only the first of many formerly favourite foods that have ended up in the trash lately

Tomorrow starts Round 3 of my chemotherapy treatments at the cancer clinic – and already I have a growing list of foods I just cannot force myself to eat anymore – a tragically common chemo side effect for someone who loves food as much as I do.

This phenomenon is what’s known as chemo mouth or metal mouth, according to pharmacist Dr. Jessica Caporuscio. She explains that unpleasant  side effects – including these taste alterations – are unfortunately common during cancer treatments. While oncologists may under-estimate the importance of this unique side effect, it can be a severely distressing quality-of-life issue for cancer patients. Taste changes like metal mouth can also contribute to weight loss – and even malnutrition – in patients undergoing cancer treatment. When everything you try to eat is inedible, meal time becomes miserable.

And treating that metallic taste in the mouth due to chemo treatments can be challenging. There is no standard treatment to get rid of that horrid metal mouth.

When Dutch researchers studied this distressing side effect, they found that “metallic taste is a frequently reported taste alteration during systemic chemotherapy, radiation or targeted therapies.”(1)  Almost half of the cancer patients studied reported taste changes.  Of these patients, one-third reported a metallic taste.

This bizarre side effect occurs because cancer treatments can activate certain receptors in the mouth or tongue that cause this metallic reaction.

Women experienced metallic taste alterations more often than men. Patients experiencing a metallic taste frequently report that “everything tastes bitter”.

Unlike my own situation, however, not all patients reported this metallic taste alteration as bothersome.

Meanwhile Austrian researchers studying taste alterations in breast cancer and gynecological cancer patients receiving chemotherapy found that the steepest increase of taste alterations was found in cancer patients who are being treated with a chemotherapy drug called Docetaxel.(2)

Bingo!

Docetaxel is the name on one of the three I.V. bags of drugs slowly emptying into my arm while I’m relaxing in my recliner in the big Chemo Room tomorrow.

Docetaxel is a powerful chemotherapy drug prescribed frequently to treat breast cancer and other cancers. This drug works by targeting rapidly growing cancer cells, thus helping to stop the spread of those cells. The OncoLink website says this about taste alterations due to Docetaxel:

You may experience a metallic taste or find that food has no taste at all, or you may dislike foods or beverages that you liked before receiving cancer treatment. These symptoms can last for several months or longer after treatment ends. Significant associations between taste alterations, appetite loss and fatigue were also found.”

Taste alterations? check!   Appetite loss? check!   Fatigue? check!

I now look at food as merely chewing and swallowing – if I can stand it. It’s no longer about enjoying or even looking forward to meals. I haven’t been able to choke down coffee for two months – and my goodness,  I do miss my two morning cups of coffee so much!

This isn’t one of those brutal cancer treatment side effects like nausea/vomiting (which is what I’d been dreading the most when I was first diagnosed in April) – but right now, metal mouth is the one side effect that seems most upsetting to me.

I’m basically living on ginger ale, protein shakes and frozen Del Monte fruit pops.

Everything else (except for the delicious homemade lemon mousse my generous neighbour Pam sometimes makes for me ) is utterly revolting. It’s not just that food tastes bad or has no taste, but it’s downright vile.

Even my favourite foods are now utterly unappealing. Last week, for example, I was picking raspberries with my 4-year old grandson Zack in his back garden. He was gobbling up each beautiful ripe raspberry with pure delight – but I couldn’t tolerate even one of them. And when my daughter Larissa brought over slices of her homebaked pizza  – still hot from her outdoor pizza oven – my first (and last) bite felt like I was chewing dirty cardboard. I just couldn’t do it.

It’s hard to describe how pitifully disappointing food can be when its taste is ruined.

Rebecca Katz is a chef, author of “The Cancer-Fighting Kitchen” and director of the Healing Kitchens Institute at Commonweal. She’s been experimenting for several years to find ways to battle cancer treatments’ impact on food flavour.

Her first piece of advice, quoted by Fred Hutchison Cancer Center, was: avoid your favourite foods.

“If you’re eating your favourite food and it doesn’t taste the way you want , you’re going to be disappointed and walk away from the table.”

She was 100% correct. Spitting out any food feels bad enough, but spitting out your favourite food is profoundly upsetting.

It was when Katz’s own father was diagnosed with cancer that she learned how challenging it can be to keep a patient eating, as she explained:

“At that time there wasn’t any kind of guide to help you cook for someone going through cancer treatment. And no one was talking about taste changes. I had to learn through trial and error. I felt really helpless. Here I was, a trained chef, and I didn’t know how to get him to enjoy food and eat it. I knew if he couldn’t eat, he wouldn’t be able to make it through his treatments.”

I do remember when food tasted like food, but it seems so long ago.  I sure miss those days. How long will it take before this metal mouth side effect goes away? Here’s the grim prediction from the Canadian Cancer Society:

Taste usually returns to normal several weeks to months after cancer treatment is finished. Some people with taste changes will experience a slow gradual improvement in taste that may take place over years.”

Mayo Clinic suggests:  how cancer patients can cope with Metal Mouth

  • Drink liquids often or use gum, mints or hard candies to remove a bad taste in your mouth.
  • Avoid metal utensils. Try using plastic or bamboo ones.
  • Select foods with a variety of colours, temperatures and textures.
  • Check with a health care professional about mouth rinses.
  • Season foods with tart flavours like lemon, citrus fruits, or vinegar
  • Explore different protein sources such as chicken, fish, and beans
  • Freeze fresh fruit to snack on
  • Serve food cold or at room temperature to mask the taste of food.
  • If these measures don’t help or if you’re losing weight, ask your doctor or a registered dietitian for further advice.
  • The American Cancer Society suggests rinsing the mouth with a mixture of baking soda, salt and water before eating to improve the taste of food.
  • Frequent teeth-brushing and keeping the mouth clean may also help reduce bad tastes in the mouth.
1. IJpma et al. (2016). “Metallic Taste in Cancer Patients Treated with Systemic Therapy”. Nutrition and Cancer, 69(1), 140–145.
2. Gamper, E. M. et al.  (2011). “Taste Alterations in Breast and Gynaecological Cancer Patients Receiving Chemotherapy: Prevalence, Course of Severity, and Quality of Life Correlates.” Acta Oncologica, 51(4), 490–496.

Q: Have you experienced severe taste changes in your food?

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NOTE FROM CAROLYN:  You can read more about my breast cancer treatment updates here.

I wrote much more about becoming a patient (no matter the diagnosis!)  in my book, A Woman’s Guide to Living with Heart Disease  (Johns Hopkins University Press). Ask for it at your local library or bookshop. Please support your favourite independent neighbourhood booksellers, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).

11 thoughts on “Remember when food tasted like food?

  1. Hi Carolyn,

    I’m sorry you’re experiencing that dreaded metallic taste. It’s so hard when food tastes bad, especially when it’s your favorite foods!

    For me, my morning coffee was the taste I missed the most. Instead of looking forward to that first sip, I came to sort of dread it. Luckily, shortly after chemo ended, my sense of taste started to improve. It took awhile before it got back to normal, though.

    I remember lemon drops were good. And watermelon and ice cream – not together! I learned which days in the cycle were slightly better and tried to eat well on those days. I don’t know if it’s sound advice, but I’d say eat whatever tastes good or at least not bad. And remind yourself that this, too, will pass.

    Hang in there, my friend. I am thinking about you lots and lots. Hugs.

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    1. Hello Nancy! I know that ‘metal mouth’ is not nearly as awful as nausea or vomiting (or bone pain which IS pretty awful!) But for me, eating now is reduced to simply chewing, chewing, chewing and then trying to choke it down… a quality of life issue, minor maybe, but no morning coffee is really wearing on me… I have had a rare day or two when I could taste some things that I couldn’t the day before, but then the metal squirms its evil way back…

      (I did discover that rice pudding is okay – and it’s true comfort food). I’ll try those lemon drops for sure. When I was whining to our Team Nurse about the horrid metallic taste of everything – she immediately said “EAT WHATEVER YOU LIKE – even ICE CREAM!!” so I’m following her advice.

      But ice cream feels too “creamy” so I’m going to go browse the sorbet or gelato non-creamy frozen food aisle. I’m trying that ‘this too shall pass’ philosophy, but I’m feeling so discouraged at the thought of 14 more 3-week chemo cycles looming ahead of me…

      I enjoy everything about food – shopping, planning, prep, baking, cooking, family meals especially – but what I’m forcing into my mouth these days doesn’t even feel like “food”. 😦 I sure hope that, like you, my sense of taste will improve…

      Thanks so much for your encouragement! ❤️

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  2. Years ago, I was living overseas and contracted hepatitis A. That resulted in all sorts of symptoms, notably zero appetite and extreme fatigue. The treatment at that time consisted of a very strict no-fat diet (except for yogurt), of course no alcohol whatsoever.

    Any meat was to be boiled or broiled, so no fat. And I was supposed to have increased calories (3000 per day) as I had lost quite a bit of weight. This went on for a year- what I found helped- and might help you- was to focus on food that was calorie dense- I ate dried fruits, yogurt, soup spoonfuls of honey (I don’t really like anything too sweet) because you can consume a lot of calories without a lot of eating- lentils- cooked til soft or made into soup; black bean soup etc. You can get alot of nutrition without having to consume much – could puree lentils, beans and even cooked dried apricots so to be able to quickly swallow when eating is distasteful. You can swallow liquids without really tasting anything.

    Might help…I hope you and anyone else going thru this feels better soon.

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    1. Hi Helen – some really good tips! Wow, keeping up a 3,000 calorie per day regimen must have been tough (given fat wasn’t an option). I’m going to look into dried fruits (I like the protein shakes but I know I also need fibre and other foods important for digestive help, so drinking proecessed liquids only doesn’t sound appealing given that my treatment plan is one year long. There are liquids, and then there are liquids like the soup you recoomend!
      Take care. . . ❤️

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  3. You are absolutely correct about the taste of food. Between the heart drugs and the ones I take for Lupus, nothing ever tastes good. I live on root beer and banana popsicles and drink water and I ice tea that I make myself.

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  4. Carolyn, my heart goes out to you. I remember the “metal mouth” experience vividly from my own chemo journey. But take heart: taste does come back, even if it takes time xxx

    Marie Ennis-O’Connor

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    1. Hello Marie – you describe this side effect perfectly: “it steals the joy of eating…” It’s also discouraging to read expert predictions of months or even YEARS of these dreadful taste alterations!
      Take care. . . ❤️

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