When will food taste good again after chemo and radiation?

Posted by weebiscuit @weebiscuit, Aug 8, 2020

My husband was diagnosed with a Stage 4 bladder tumor in early Feb of 2020. He started with 4 rounds of chemo in March and a heavy dose of radiation in March, at Mayo in Rochester, MN. After they determined this was the correct treatment, he began 5 weeks of daily radiation concurrent with Cisplatin chemo two days of each of those five weeks. He never felt nauseated. Never got sores in his mouth. However, his taste buds went haywire. Everything under the sun tasted disgusting.

The odd thing is that he is now just about 3 months past his last Cisplatin chemo treatment and radiation, yet his taste has gotten worse. He can't stand even looking at food. He has dropped 25 pounds since treatment started. The dietician told me to give him six small meals a day. He can't even stand to put something in his mouth once a day.

Sometimes I can get a quarter cup of cottage cheese with canned peaches in him. Other times a half cup of mashed potatoes. Bran cereal in the morning. But no matter what I try he says it's torture getting it down because it all tastes so terrible. I am having him drink Boost 20 gr protein drinks 3 times a day and an considering pushing 4 a day on him. He hates them, too, because they are way too sweet, but he can gulp them down quickly. However, he has to immediately follow the drink with three green olives, to get the sweet taste out of his mouth.

I've tried everything... gargling with water/baking soda/salt before eating. Gargling with black tea before eating. Giving him sauerkraut and other non-sweet foods. (He absolutely hates any meat because he has to chew it). I've given him bean with bacon soup but I have to puree it first, so he can quickly drink it down.

I've been on the phone so many times with dieticians and doctors from Mayo, and they all say this won't last forever. But when his treatment ended they said, "Expect another month or so when your taste is still bad." It's been three months, and I swear, it's gotten worse the last few weeks.

Has anyone ever gone this long with tastebuds totally messed up? My husband is beginning to think this is going to be what it's like for the rest of his life!

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

@weebiscuit

Thank you for the reply! When you finished treatment were you told it would take that long? We were told "about a month." That's why we're so frustrated as it's worse than ever. Good to know it finally got better for you! Gives me hope. Is the neuropathy in your feet due to the Cispatin? How is it that it affected your feet?

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Hello @weebiscuit

After my treatments I did not enjoy eating for several months. It took a different time period for various foods. I would say it was about 6-8 months before I was finally back on track and eating well. There was no rhyme or reason to what foods were not palatable.

I did not take Cisplatin. I would assume as with a lot of various treatment, the side effects and length of the side effects would vary.

As far as foot numbness, I have not had a treatment for over 2 years and my feet are still quite numb at times.

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@weebiscuit

Thank you for the reply! When you finished treatment were you told it would take that long? We were told "about a month." That's why we're so frustrated as it's worse than ever. Good to know it finally got better for you! Gives me hope. Is the neuropathy in your feet due to the Cispatin? How is it that it affected your feet?

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Everyone reacts different, so the Drs could only give you a general idea of timing. For me, the neuropathy was from a previous treatment, and it had improved. Then I noticed a worsening since Cisplatin. I did know ahead of time of any possible side effects, but chose best case for me overall. My feet have an odd combo of numb and over stimulated nerves. I can still exercise- it improved once, I’m working towards it again!

If your husband’s issue with loss of taste is worsening, I would ask the Dr again to talk it through with you. I know you’ve had a lot of input on foods, but here’s my recommendation: stay more bland, less fiber, etc. Macaroni and cheese comes to mind, and canned pears.

It takes time to heal, so remember others have been through it too- there really is hope!

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How long does it take for your taste buds to return to normal? I had chemo and radiation but no surgery. Can't see tumor anymore. However I'm a chef and am worried I'll have to change careers!

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@pa145k

How long does it take for your taste buds to return to normal? I had chemo and radiation but no surgery. Can't see tumor anymore. However I'm a chef and am worried I'll have to change careers!

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Welcome @pa145k. Boy, I can imagine that as a chef you're very concerned about getting your sense of taste and smell back after cancer treatment. You'll notice that I moved your message to this existing discussion in the Cancer: Managing Symptoms group:

- When will food taste good again after chemo and radiation? https://connect.mayoclinic.org/discussion/trying-to-get-food-into-husband-after-chemo-and-radiation/

I did this so you can easily connect with other members talking about regaining taste after chemo and radiation, members like @weebiscuit @mira24 @alpaca and others.

@pa145k, what type of cancer did you have? (Great that the tumor has disappeared.) What kind of chemo and radiation did you have?

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My 43 yo son had chemo and radiation for Oropharyngeal cancer occurs in the oropharynx, the area at the back of the mouth, the rear third of the tongue, and the tonsils. His taste buds seem to have died. He is very weak and tired. How soon is too soon for him to go back to work? Job is pretty physical. Lots of hours.

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@pa145k

How long does it take for your taste buds to return to normal? I had chemo and radiation but no surgery. Can't see tumor anymore. However I'm a chef and am worried I'll have to change careers!

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After high does chemo and radiation, my taste buds came back fairly quickly. It was a couple months before chocolate had any flavor. I seemed to recall that was the last to return. The flavors I love did change a bit, permanently. I now love strong flavors that I previously did not. When cooking I now have the advantage of a keener sense of smell, even 17 years later. I am not a chef but I adore cooking and I cook a lot, always from fresh.
What type of chemo did you take? May I ask where your tumor was?

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@pa145k

My 43 yo son had chemo and radiation for Oropharyngeal cancer occurs in the oropharynx, the area at the back of the mouth, the rear third of the tongue, and the tonsils. His taste buds seem to have died. He is very weak and tired. How soon is too soon for him to go back to work? Job is pretty physical. Lots of hours.

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@pa145k, thank you for more details on your son's cancer.

I encourage you to follow the Head & Neck Cancer group to meet others with oropharyngeal and the challenges of head and neck cancers: https://connect.mayoclinic.org/group/head-neck-cancer/

How soon is too soon to go back to work is a tough question to answer. It sounds like you're concerned that he may be pushing himself to go back too soon.

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@colleenyoung

@pa145k, thank you for more details on your son's cancer.

I encourage you to follow the Head & Neck Cancer group to meet others with oropharyngeal and the challenges of head and neck cancers: https://connect.mayoclinic.org/group/head-neck-cancer/

How soon is too soon to go back to work is a tough question to answer. It sounds like you're concerned that he may be pushing himself to go back too soon.

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You're right. He doesn't have the strength or stamina to do the work. He recently was fired for taking too much time off. He is living with me in senior housing (my only income is social security); and on May 16, he has to leave. Homeless shelters haven't worked out that great. Oh and he has major chemo brain! At this point I don't know how and can't afford to help him.

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My adult Son had chemo and radiation in 2019 for stage 3 thyroid cancer, but no surgery and he still cannot eat food. He drinks 4 or 4 Boost Plus daily and maybe 2 Carnation Instant Breakfast and that is all he survives on. He always loved to eat. He was told that his taste buds would come back in a few months or maybe never! He sure has dropped lots of weight, can't work, and was turned down for Social Security Disability even though he has worked at a lucrative profession for over 30 years! Maddening is a mild word!!

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