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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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Hello @meganz I can attest to the change of taste after treatments. Initially the radiation can leave a metallic taste and in my case, virtually no food taste whatsoever. Salt was the first to return followed by bitter, not a good combination.
Lack of saliva or simply dry mouth prevents food taste as taste requires food to dissolve on the tongue. The nose isn’t working well either.
Likely other factors are at play here. Upset stomach, pain in the throat or mouth, extreme difficulty swallowing. Or simply the brain is saying “what’s the point?” “Life is too hard!” This sentiment certainly crossed my mind.
My wife knew I would find chicken soup difficult to ignore. Custard is another weakness I have. Both of these foods are healthy and I found easy to eat. She tried adding this or that as time went on.
Some foods will taste or feel rather gross for a while, smell horrible as well. Don’t give up. Find what works. There are foods I no longer eat either due to a change in taste or texture or my inability to handle spicy foods. Ketchup is my hot sauce now. Other foods I never enjoyed are now common in my diet. Courage.
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3 ReactionsThanks. Wish there was a way to get in touch because their experience was exactly the same as ours. Seems like lots lose taste but not many where all food tastes really bad. And for so long after treatment has ended. Ill be sure to post here when it does get better in case anyone else goes thru the same.
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1 ReactionAlso, I believe @hrhwilliam has had head and neck cancer.
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1 ReactionWelcome @meganz, Unfortunately I don't think @weebiscuit is still following Connect. The last time they were active was in 2020. If you click the person icon to the left of a members comment, you can see when they were last active.
@wooldridgec, @kathyheidt and others may have some experience or suggestions to share with you.
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3 Reactions@weebiscuit not sure if you are still monitoring this thread since it's been years but I'm wondering how long it took for your husband's taste to return/things not to taste bad. My husband is 3 months post radiation/chemo for head/neck cancer and all food tastes horrible. Your post sounds exactly like what he is experiencing and he is miserable. I'm lucky if I can get him to eat once a day. I'm terrified he's going to start fainting since he's hardly eating and has lost a lot of weight. Thanks for any insight!
Thank you all. I just had my yearly bone scan and quarterly ADT shot and Zometa Infusion. Bone scan shows stable metastatic disease and no new metastases. PSA still undetectable at < 0.100, Alkaline Phosphate was 40, and blood work all normal. Zometa wears me out but I am thankful for the treatment. Thank you Jesus.
Hi
I just saw his comment
Thank you
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1 ReactionThank you so much! Glad you are doing so well
Thank you Colleen ! I read that discussion and very helpful I can’t see the wooldridge comment
Can u please post it to me. I am so anxious
Much appreciated
Hi @kathyheidt, in addition to the great reply from @wooldridgec, you may also be interested in this discussion about partial mexillectomy:
- What is your quality of life after a partial maxillectomy?
https://connect.mayoclinic.org/discussion/what-is-your-quality-of-life-after-a-partial-maxillectomy/