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When will food taste good again after chemo and radiation?
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!
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I had trouble with no saliva as well. I used something called Biotene to help. I used the mouthwash to help saliva production in general, and the spray particular incidents. My taste and smell gradually came back, but it’s two steps forward and one back, like everything involved in healing post chemo.
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2 ReactionsI have just finished doing 35 radiation treatments and 3 chemo...for throat cancer and lymph nodes... Not a fun way to loose weight I lost 18 kg...
As other people have said you loose your taste buds ...I think it was week 2 of the treatment for me
Nothing you put in your mouth is your friend ...It hurts to swallow it hurts to chew and the texture of food is repulsive .....I'm now 2 months pass my treatment waiting for a Pet scan to see if they knocked the cancer on the head .... i would say about 5 or 6 weeks before i had any taste back and that would be about 10% if I'm lucky But the last few days i have noticed every thing is starting to go back to Having a hard time swallowing and lack of taste+no saliva ....i have been told this can happen for many months if not years ...every one is different
All i can say to the people who are reading this Stay strong in your mind .....and remember your not the only one going through this
Love and light
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2 Reactions@pa145k @baz10, so hard to your sons have to go through cancer and loss of income.
As a stop gap, perhaps Find Help can help https://www.findhelp.org/
Find Help is a search engine that can help find financial assistance, food pantries, medical care, and other free or reduced-cost help in your local area by entering your zip code.
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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1 ReactionMine was only a week
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1 ReactionYou'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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1 Reaction@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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1 ReactionAfter 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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2 ReactionsMy 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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5 ReactionsWelcome @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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