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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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@mfr11946, such a good tip for caregivers not to serve regular size servings. For caregiver,s food can be more than just nutrition. Food can be wrapped up in many emotions, traditions, and expectations. We share food. We offer food. We associate it with sustanance, nuturing, celebration.
All that changes when you're a patient, especially a patient with a head or neck cancer. Food becomes a chore, a challenge, a pressure point.
@mfr11946, at 3 months post treatment, will be having a follow-up appointment soon?
I have stage 4 esophageal cancer and had the surgery removal stomach gall bladder and esophagus along with 6 weeks of chemo and 8 weeks o radiation every day and have been in remission for 11 years now your taste buds may take a while to get straight my problem was everything I used to like I hated now and everything I hated I liked oh and I went from hating sweets to can’t get enough now I went from 6 ft 2 195 lbs to 105 lbs and now I am 130 lbs good luck
I am seven months out of chemo. I had my right lobes two out of three removed and Tagrisso. I had gained 30 pounds while I was on Kimo because I was eating bakery and candy stuff and now they no longer agree with me. My diarrhea is better since I started taking Metamucil and I take an electrolytes cause of my kidney functions so it’s been a long road.
Oh my , I completely understand. I am going to through everything you mentioned in your post .
I have had chemo and 35 radiation treatments one year ago and am still struggling with EXACTLY the same side effects.
I have had a feeding tube for almost a year now , I can’t eat .
When I visit the head and neck surgeon all he says is that it will get better .
What I don’t understand is that knowing how terrible the side effects are, they really don’t know, why I am not offered something to help me or any other patient medication to at least feel a little better! After all a year and no relief in sight!
God bless you !
@weebiscuit Afternoon ,
I am one year out from my last radiation treatment for squamous cell cancer , head and neck .
I have no taste except for the fact that everything tastes awful , abundance of phlegm, throat pain, dry mouth they tell me may never go away . I did not have Cisplatin.
I have to be on a feeding tube as a result . My taste buds were destroyed by 35 radiation treatments .
Now they tell me it may take another year !!!!
I don’t understand that while these doctors know about the long term side effects why they don’t offer a comprehensive modality for all of these debilitating side effects.