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When will food taste good again after chemo and radiation?

Posted by weebiscuit @weebiscuit, Aug 8, 2020

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!

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 30 3:01pm
In reply to @kathyheidt "Hi I have scc maxillary sinus cancer I will have had three cycles of induction chemo..." + (show)
@kathyheidt

Hi
I have scc maxillary sinus cancer
I will have had three cycles of induction chemo and now they recommend partial maxillectomy surgery for May 2 The ct scan after 2 cycles showed a great reduction on the tumor but they say surgery they need for complete margins. My question is radiation post surgery. if they get all the visible cancer which they are confident. My concern are long term effects of radiation and is it worth it for preventative recurrence Do patients regret it
Is it worth the quality of living fee if preventative. Please respond as I am desperate for advice thank u

Jump to this post

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/

REPLY
2 replies
kathyheidt | @kathyheidt | Mar 30 4:02pm
In reply to @colleenyoung "Hi @kathyheidt, in addition to the great reply from @wooldridgec, you may also be interested in..." + (show)
@colleenyoung

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/

Jump to this post

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

REPLY
kathyheidt | @kathyheidt | Mar 30 4:05pm
In reply to @wooldridgec "After 10 treatments of radiation o my spin and then 5 additional treatments to my ribs..." + (show)
@wooldridgec

After 10 treatments of radiation o my spin and then 5 additional treatments to my ribs I could barley eat and I had no taste what so ever. I lost 25-30lbs during radiation. It was worst compared to 10 cycles of Docetaxel Chemotherapy. My taste and ability to eat more came back 2-4 weeks after completing radiation. With Chemo my taste came back quicker, but I also had no issues with eating during chemo.

As far as regret. I have none with regards to radiation or chemo. I did have some radiation damage to my right lung but it is minor and I do not even feel and issues. The doctors call it radiologic changes. Radiation kills cancer and so does chemo. ADT and 2nd generate hold cancer down but does not kill it as fast as radiation and chemo.

I'm in "Deep Remission" so no regrets. But, radiation is very difficult. As far as chemo, everyone is different. I did not have any side effect except the need for sleeping by Friday afternoon when the chemo started killing everything in my body. I had a bloody nose from time to time (which is normal) and hair loss but no Neuropathy because I iced my hands and feet during every treatment cycle.

It is my opinion that the more you can handle radiation and chemo the better chance you have of remission. But, with that said, some men just cannot go through it or the have severe side effects. We all respond differently.

My wife makes fun of me saying, "you can go through 10 chemo cycles" but you are afraid to take a child's does of Claritin.

I do not regret it. No

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Thank you so much! Glad you are doing so well

REPLY
kathyheidt | @kathyheidt | Mar 30 4:05pm
In reply to @colleenyoung "Hi @kathyheidt, in addition to the great reply from @wooldridgec, you may also be interested in..." + (show)
@colleenyoung

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/

Jump to this post

Hi
I just saw his comment
Thank you

REPLY
wooldridgec | @wooldridgec | Mar 30 5:00pm

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.

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