When will food taste good again after chemo and radiation?

Posted by weebiscuit @weebiscuit, Aug 8 11:29am

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!

Hello and welcome @weebiscuit I’m so sorry to hear that your husband has bladder cancer, is there any talk of surgery or has he finished treatment? Sounds like feeding him is a real problem for you. If he’ll drink the Boost or Ensure, that’s a real plus. You can try freezing some of it to make ice cream!
You are doing your best and you don’t want it to become a big issue between you. He knows he needs to eat and he will. Does he have another doctor visit soon? Maybe they can explain the importance of eating especially after chemo.
Your statement , he believes “this is what it’s going to be like for the rest of his life.” You make him sounds as though he’s very depressed. Do you think he’s depressed?

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@becsbuddy

Hello and welcome @weebiscuit I’m so sorry to hear that your husband has bladder cancer, is there any talk of surgery or has he finished treatment? Sounds like feeding him is a real problem for you. If he’ll drink the Boost or Ensure, that’s a real plus. You can try freezing some of it to make ice cream!
You are doing your best and you don’t want it to become a big issue between you. He knows he needs to eat and he will. Does he have another doctor visit soon? Maybe they can explain the importance of eating especially after chemo.
Your statement , he believes “this is what it’s going to be like for the rest of his life.” You make him sounds as though he’s very depressed. Do you think he’s depressed?

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@weebiscuit You might also look at the group found here:
https://connect.mayoclinic.org/discussion/recipes-food-tips-healthy-eating-more/
These folks have had all sorts of discussions on food and eating. Maybe post your question to them, also.

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@becsbuddy

Hello and welcome @weebiscuit I’m so sorry to hear that your husband has bladder cancer, is there any talk of surgery or has he finished treatment? Sounds like feeding him is a real problem for you. If he’ll drink the Boost or Ensure, that’s a real plus. You can try freezing some of it to make ice cream!
You are doing your best and you don’t want it to become a big issue between you. He knows he needs to eat and he will. Does he have another doctor visit soon? Maybe they can explain the importance of eating especially after chemo.
Your statement , he believes “this is what it’s going to be like for the rest of his life.” You make him sounds as though he’s very depressed. Do you think he’s depressed?

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They cannot do surgery to remove the tumor. When it was found it was the size of a softball. It started in a diverticulum and then, the way I understand it, (and I could be wrong), is that the diverticulum with the tumor in it moved into the bladder, and it is pressing on nerves and vesicles, so it can't be removed, and neither can the bladder itself be removed. The radiation shrunk it some, and we will find out in October, with another PET scan, if it's continuing to stay inactive and continuing to shrink.

Believe me, we've had endless consults with his oncologist, urologist, and dieticians who had repeatedly told him the importance of eating and getting his weight back. His hemoglobin was also very low in May and June, requiring 5 different blood transfusions. As of last week it's 10.5….. still a long way to go to normal.

I guess the main reason I joined here was to ask others who've gone through this chemo and radiation how it affected their taste, and how long it took to get it back.

No, he's not depressed. He's always upbeat…. until he sits down and looks at food I want him to eat. LOL!

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@becsbuddy

@weebiscuit You might also look at the group found here:
https://connect.mayoclinic.org/discussion/recipes-food-tips-healthy-eating-more/
These folks have had all sorts of discussions on food and eating. Maybe post your question to them, also.

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I can't even begin to tell you how many "tips" I've read or received on food and eating over the last three-and-a-half months. I've heard it all. I've been told about four times to freeze the Boost. Tried it last month. He hated it. Said he'd rather slug it down quickly than have to take bites of it which linger on his tongue and taste buds.

I don't need tips on food and eating. Honestly. I've been through the entire rigamarole and tried everything that was suggested to no avail. I am looking for people whose taste buds were destroyed by chemo so I can talk to them about their experiences with their taste recovering, and how long it took, etc. If I can find anyone who was on Cisplatin to talk to, that would be even better, as I'd have someone else's experiences to compare my husband's to.

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You’re not alone! I have had cisplatin and I also had a side effect of taste change. It peaked about 3 months after treatment, then started getting better. It took about 6 months or so to finally settle down. I also have peripheral neuropathy as well from treatment in my feet. The neuropathy has continued- I am at 11 months past treatment, so now I am trying Neurotin to help slow or stop progression. So far the Neurontin is helping, it’s only been a few days but I’ve noticed a positive difference. Super low dose just to start.

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@weebiscuit

I can't even begin to tell you how many "tips" I've read or received on food and eating over the last three-and-a-half months. I've heard it all. I've been told about four times to freeze the Boost. Tried it last month. He hated it. Said he'd rather slug it down quickly than have to take bites of it which linger on his tongue and taste buds.

I don't need tips on food and eating. Honestly. I've been through the entire rigamarole and tried everything that was suggested to no avail. I am looking for people whose taste buds were destroyed by chemo so I can talk to them about their experiences with their taste recovering, and how long it took, etc. If I can find anyone who was on Cisplatin to talk to, that would be even better, as I'd have someone else's experiences to compare my husband's to.

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@weebiscuit, thanks for clarifying what you're looking for. You'll notice that I changed the title of this discussion to better reflect the experiences you're looking for. I'm sure you're encouraged to hear @mira24's experience of taste returning about 6 months after treatment with cisplatin.

I'd also like to bring @grandpabob @jimmy2248 @merpreb and @alpaca into this discussion as I believe they've had experience with lost taste buds post radiation and chemo (in particular cisplatin).

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@mira24

You’re not alone! I have had cisplatin and I also had a side effect of taste change. It peaked about 3 months after treatment, then started getting better. It took about 6 months or so to finally settle down. I also have peripheral neuropathy as well from treatment in my feet. The neuropathy has continued- I am at 11 months past treatment, so now I am trying Neurotin to help slow or stop progression. So far the Neurontin is helping, it’s only been a few days but I’ve noticed a positive difference. Super low dose just to start.

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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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@colleenyoung

@weebiscuit, thanks for clarifying what you're looking for. You'll notice that I changed the title of this discussion to better reflect the experiences you're looking for. I'm sure you're encouraged to hear @mira24's experience of taste returning about 6 months after treatment with cisplatin.

I'd also like to bring @grandpabob @jimmy2248 @merpreb and @alpaca into this discussion as I believe they've had experience with lost taste buds post radiation and chemo (in particular cisplatin).

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Thank you!

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Hello @weebweebiscuit , after radiotherapy for head and neck cancer the taste buds are affected badly and can take a year to come back. My taste returned after 10 days but I remember the month or two without taste and I tell you, food loses all interest without it. I'm sure your husband's taste will come back.

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It's been three months post-treatment for bladder cancer and it is still terrible for him trying to eat. No nausea… but any food in his mouth is totally disgusting.

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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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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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