Lost taste and smell on chemo: Will they come back?

I have been afraid to mention that after three months of chemo, I started having taste and smell distortions. When I complained of a salty taste in my mouth I was told it was from the saline infusions we got with the chemo but three years later, I still get it occasionally and I can't consume anything that is salty or I'll have this salty taste all day. Choclate tastes like lard (bland fat) to me. For me, the smell of butter is repugnant. I kind of knew it was the chemo (especially considering it started at the time of the chemo) but when I have tried to explain it, it sounds crazy! I used to enjoy grocery shopping and cooking but it has become onerous because I have to figure out what I can eat. When I reported this to my oncologist, I was referred to an oncology dietitian. That didn't help. I know good nutrition, I just find so many foods unpalatable. To make matters more complicated, I have been having trouble swallowing foods of certain textures, like bread. When I told my doctor, he just looked surprised and then said, 'Oh that's right, you're gluten free." I'm Not gluten free. I didn't argue with him. He obviously didn't want to discuss it. Then I found out in a support group for women on hormone blockers that lack of estrogen not only causes vaginal dryness but in your mouth and eyes. Obviously if your mouth is dry, swallowing foods like bread is difficult. It probably is also contributing to food tasting off.
Like you sticking to tortilla chips and salsa, my go-to meal is Whole Foods Protein Blends. It's lentils, edamame beans and vegetables. To make it palatable I drown it in barbecue sauce! It's boring but edible. Your validation means a great deal to me! I too will ask my oncologist about zinc. Thank you.

Thanks so much for your reply. I have no trouble with the texture or swallowing of foods. I just can't taste................anything! It's like I'm chewing on cardboard or paper all the time. I CAN feel sugary sweet stuff on my tongue. By that, I mean I can tell it's a sweet roll or something like that, but it has no flavor to me at all. No cinnamon flavor or chocolate or anything like that. Meat is tasteless, potatoes, vegys..............all that stuff. It makes me not want to eat. It's like drinking water.................no flavor.

I have been afraid to mention that after three months of chemo, I started having taste and smell distortions. When I complained of a salty taste in my mouth I was told it was from the saline infusions we got with the chemo but three years later, I still get it occasionally and I can't consume anything that is salty or I'll have this salty taste all day. Choclate tastes like lard (bland fat) to me. For me, the smell of butter is repugnant. I kind of knew it was the chemo (especially considering it started at the time of the chemo) but when I have tried to explain it, it sounds crazy! I used to enjoy grocery shopping and cooking but it has become onerous because I have to figure out what I can eat. When I reported this to my oncologist, I was referred to an oncology dietitian. That didn't help. I know good nutrition, I just find so many foods unpalatable. To make matters more complicated, I have been having trouble swallowing foods of certain textures, like bread. When I told my doctor, he just looked surprised and then said, 'Oh that's right, you're gluten free." I'm Not gluten free. I didn't argue with him. He obviously didn't want to discuss it. Then I found out in a support group for women on hormone blockers that lack of estrogen not only causes vaginal dryness but in your mouth and eyes. Obviously if your mouth is dry, swallowing foods like bread is difficult. It probably is also contributing to food tasting off.
Like you sticking to tortilla chips and salsa, my go-to meal is Whole Foods Protein Blends. It's lentils, edamame beans and vegetables. To make it palatable I drown it in barbecue sauce! It's boring but edible. Your validation means a great deal to me! I too will ask my oncologist about zinc. Thank you.

How far out are you from chemo? I'm just hoping for you that this isn't permanent.
Chemo obviously messes with our sense of taste and smell and what you're experiencing interferes with the quality of your life. I did a little research and found the name for this is ageusia. If your oncologist isn't helpful, an ENT (Ear nose and throat) doctor might be helpful.
They save our lives from cancer but at what cost? Don't stop reaching out for support and don't stop searching for an answer. I don't think they know enough about long term effects of cancer treatment.

You might try Asian BBQ sauce, sometimes labeled Korean barbecue. May be a change you can taste. Also balsamic glaze or reduction has a strong somewhat sweet taste.

Thanks so much for your reply. I have no trouble with the texture or swallowing of foods. I just can't taste................anything! It's like I'm chewing on cardboard or paper all the time. I CAN feel sugary sweet stuff on my tongue. By that, I mean I can tell it's a sweet roll or something like that, but it has no flavor to me at all. No cinnamon flavor or chocolate or anything like that. Meat is tasteless, potatoes, vegys..............all that stuff. It makes me not want to eat. It's like drinking water.................no flavor.

@sally484 Yes, you are describing perfectly what it's like not to taste flavor. It's like eating cardboard. I agree, eating is now forced. That's why I look for textures I like. There are not many.

Flavor is connected to smell, but even with loss of flavor and smell, our taste buds on our tongue can distinguish sweet, salty, spicy and bitter. The only one of those that is still good without flavor is sweetness so that is my only food joy now. It makes me eat too much sugar.

Try my fave! See's butterscotch lollipops are sweet, smooth and creamy so I like the texture too, but couldn't tell you it's butterscotch, just sweet. Lasts 20+ minutes for only 90 calories. My evening treat I look forward to all day since I don’t enjoy the rest of the food. Each lollipop flavor has a different texture so that’s the only one I eat. Chocolate one has a rough texture – don’t recommend.

For something healthy, salmon has a good texture for me. I never liked fish (fishy taste and smell gags me), but now I can't taste or smell it so I wouldn't know it was fish. I get it blackened so sometimes I can detect the bite of pepper if it has enough.

What's our most common social engagement? Going out to eat. No longer fun. I dread lunch and dinner invitations with all my eating limitations, but you fake it till you make it.