Help! Does anyone have information about Taste Alteration?

[Superkim]

I am on Taxotere - 3 weeks on, 1 off. I just finished my second round of three infusions last week. About 4 days ago I started having serious mouth issues. I am familiar with mouth sores and sensitivity and even slight changes in taste, but this is on a whole different level.

I can't taste food anymore, but that's not the worst of it. What I can taste is bitterness. Even my own saliva is bitter. The awful taste in my mouth doesn't go away with brushing, rinsing, flossing, or anything else.

Regardless of how bad things can get for me, I know that sitting down and relaxing with a nice cup of tea or good meal can always lift my spirits. Now I don't even have that. I can't cook, I don't want to eat, and the taste in my mouth keeps me slightly nauseous a lot of the time.

The doctors don't have any recommendations. If anyone has any experience with this (called dysgeusia or parageusia), I'd be grateful for your insights. I'm feeling a bit desperate right now.

-KIm

[KMD1942]

Used plastic not metal silverware. Helped me a lot

[Superkim in reply to KMD1942]

Thank you. I stopped using silverware a couple days ago in hopes that would alleviate the issue. I have had metal taste problems on platinum drugs before. Apparently this is a little different, but I will continue eating off plastic and anything else I can do.

-Kim

[Mommoo65]

I have no idea what to do about it! But it was so strange to me to have little or no appetite 3 weeks out of 4. I lost 67 lbs in 6 months of treatment. I finally gave up trying to eat anything but cottage cheese and lived on supplemental drinks. My doc had no answers except to lightly threaten that he'd stop treatment of I kept losing weight. I did keep those peppermint balls around to suck on. That helped with dry mouth and metal taste issues.

[Superkim in reply to Mommoo65]

Thank you. Yes, I have peppermints too. They help a lot.

[Lindaura]

Hi Kim,

I too had that terrible chemical taste in my mouth during first line treatment, but it actually started when the cancer first laid me low.

Everything tasted awful.

Fruit just tasted like chemicals. All breads and crackers tasted like dirt.

I couldn’t find anything to eat, but then my family started getting creative.

I found I could tolerate rice crispies! With whole milk.

I tried skinny oven fries.

Not too bad.

I found I could tolerate white bread toasted.

Then I could eat mild cheddar cheese and tomato sandwiches on toasted bread!

I remembered liking pear or peach nectar when I was sick as a child. We could add these to my filtered water to make it more palatable.

We buy it at Waitrose.

Sometimes you might just need ice cream, but it is still a struggle to find a flavour and brand that worked.

Good luck!

It gets better when you get better!

Hugs,

Laura

[Superkim in reply to Lindaura]

Thank you, Laura.

I have been getting creative too. Adding something sweet to the water is brilliant! And I have found that a couple cereals are not too bad.

I started taking zinc which is seeming to help, apparently it was used in a trial for patients with this issue.

Thanks again for taking the time.

Kim