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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,
I am 4 months past my last radiation treatment, since then I have no taste either. No matter what I try. I make a desert with lemon pudding and cool whip, I can barely taste the hint of lemon and the cool whip taste like chalk. Not good.. My throat isn't sore so I can eat anything but it's just not enjoyable. What does everyone else eat?
There is a newer version of cisplatin that they might consider using. It’s called carboplatin. I used it for several months and never once experienced appetite issues, nor did I experience any significant nausea or other annoying side effects from it. I would at least ask my doctor, whether that would be an option to try as opposed to cisplatin!
@randman yeah, with chemo you eat whatever the hell you want, it’s already bad enough doing chemo, eating “Healthy” just adds insult to injury.
If you want to eat s’mores and ice cream cones then you go ahead and eat’em. Chemo is a terrible bargain, you get poisoned and suffer like hell with the hopes the cancer will die while you barely survive it. It totally sucks so you do whatever the Hell you think will make it more manageable for yourself. Tell your girlfriend to make you a cake, she needs to feed a little bit everyday!
You’re lucky man, I did this all single, having someone to make me meals would be nice.
I’ve had cancer over 19 years now, the past 13 terminal. I’ve had a few stem cell transplants plus about 150 other treatments or so, probably more.
The food thing is very difficult. I’m sure he won’t take food for granted after this ordeal!!
Food will never be the same after this for him but that doesn’t mean it won’t ever be good. Hopefully he’s done with treatment. The thing he needs most is the hardest thing to be patient for, he needs time. I think eventually things will start coming around but it’ll be gradual. His sense of smell will probably change a little too. Nothing will be 100 percent, if you are doing chemo you are damaging nerves throughout your body, nerves that affect muscle reflexes like when they tap your knee with the rubber hammer are affected. I remember finishing ABVD chemo, 8 treatments, not an even a year into it and they checked that nerve reflex in my knee, guess what, my leg wasn’t kicking anymore!! Those nerves were pretty much dead. It doesn’t take much treatment and your nerves start to show change, your taste is one of the changes. Keep a good attitude, there’s a really good chance that his taste will improve, so look toward that. Being realistic is very important when fighting cancer, remember that most changes aren’t all at once and that there’s a chance it’ll never be what his taste was before cancer.
@randman
Thanks for info. I too am not getting enough food; nothing tastes right and I have no hunger. Been doing premier protein a couple times a day and at least one decent meal as tolerated, also a complete vitamin..like I need another pill, right. Thanks!! Dave
@rrtdave
During my chemo, my girl friends all concerned about providing me with a healthy diet. Very nice of her but I didn't want to eat anything. My Oncologist said "No no no!" He can eat anything and everything. Just need calories.
I’m 91 years old with prostrate cancer with aggressive invader confirmed by Gleason of 10. Have had 44 sessions of radiation and on ADT since biopsy about 14 monthly ago. Oncologist wants to stop ADT in about four months without explaining the next move. Will bring this subject up at the next meeting in two months. Wonder what the group thinks would be a gold standard response? Thank you JackB
I have just finished my chemo and radiation for cancer of the tongue. I'm afraid that I dont have any help for those of you who can't tolerate food.
My first and only food that I could tolerate for several weeks was soup. No meat and well cooked vegatables. The soup I got was from a salad bar at my local grocery store and was spicy but it kind of woke up some of my taste buds which ahd been dead for the past couple of months.
I was still loosing weight so my nutritionist suggested Boost Very High Calorie which has 530 calories per 8 ounce and 26 grams of protein.
I was drinking 5 of these a day during the worst of times and finally reduced gradually to 1 or 2 a day as I have been able to eat small amounts.
I would say this to all the caregivers ! DO NOT GIVE REGULAR SIZE SERVINGS TO YOUR PATIENT. Give small amounts and let them ask for more. Nothing can turn a willingness to try to eat that looking a a large plate of food and feeling sick to your stomach .
This is probably one of the hardest things you will have to endure in your life but be patient .
I am now almost 3 months post radiation and chemo and my weight has gone slowly up and I don't feel that pressure to eat eat eat any longer.
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2 Reactions@colleenyoung Thanks for asking, I’m doing well. My taste has returned about 80%, but I still have an issue with sweets, especially chocolate, which tastes like it has artificial sweetener. Hope you’re doing well too.
I'm dealing with similar issues as your husband, currently. I'm on my 3rd week of chemo, nothing tastes good, lost over 35 lbs in hospital. Hopefully, someone with replywith some mutual help. Thanks for posting.