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

I have a friend who lost theirs due to Covid and it has not come back 2 years later, but I have never known anyone who lost it long term from chemo.
That is awful, I wonder if there is anything to be done.
What regimen did you take?

Well, first I had chemo which consisted of Adriamycin, Cytoxan, Abraxane, Tecintriq, ad on site injections of Neulasta. Then had 22 rounds of radiation, then a lumpectomy. I am currently taking Exemestane, but have also been on Anastrozole and Xeloda. It's been about 1 1/2 years woth of medications now. However I only take the Exemestane now. No taste, smell................nothing.

@sally484
I feel for you. I lost my taste and smell 7 years ago from strong antibiotics and it has never come back. My neurologist said it’s permanent nerve damage. Very hard to eat tasteless food. Such a loss to never enjoy eating again. I so miss flavor. The texture of food becomes more pronounced. If I don’t like the texture I just can’t eat it.

How did you get diagnosed by neurologist? Mine had no explanation, except for my post covid syndrome diagnosis. However, I told the ENT and neurologist that the huge metallic taste I got in my mouth happened within 1 hour of taking 1 antibiotics pill! I immediately called the doctor about it. I only took 1 more pill. The taste is now more bitter than metallic.

Upon ENT visit I tested low on smell test and was diagnosed with Taste/smell disorder. I can smell and taste, but it’s weak. Not very keen now. I have tried scent retraining, but it has helped little. I’ve read on this site that scent retraining doesn’t work for them because they can’t smell at all. Idk. I can’t imagine not having any smell or taste. That’s gotta be hard. So sorry!

@celia16
I knew it was from the antibiotics because it started right when I took them. Then I researched Flagyl and levaquin and lots of issues with possible nerve damage of various kinds. I have a rare hereditary neuropathy that makes my nerves vulnerable to nerve damage. I actually asked my neurologist about it after 5 years and she told me if it had been that long it’s permanent. She didn’t seem surprised. Lots of people complaining of varying and worse nerve damage from those meds.

As for smell, it’s not just missing smelling good stuff, but it’s a safety issue because I can’t smell smoke, gas leaks, mold, rotten food, etc. Yikes! Once in awhile it’s a blessing because people will be complaining of a strong bad smell like a barnyard and I just smile and say “what smell?” as they are gagging. lol 99% of the time it’s a loss though.

It was also 2020 for me when after 12 rounds of chemo (of 16) my tastebuds changed to the point that everything just tasted sweet, but not in a good way. I couldn't eat anything wheat or potatoe based. Chocolate tasted gross. Salsa with corn tortilla chips became my main entree. After finishing chemo my tastebuds gradually came back, but almost four years later mac and cheese still tastes too sweet, yet other foods can seem too salty, and in general a lot of foods just don't taste the same. Either the sweet taste buds went into overdrive, or the rest
lost some of their effect. Some online advice I've seen is to use more spices, and there are ongoing studies about zinc supplements. I have an appointment next month with my oncologist and will ask her about adding zinc.

I know this probably isn’t the solution you were looking for. It’s a big step.
A university in Virginia is doing studies on anosmia and is developing a devise, similar to a cochlear implant that can detect smells and bypass the sensors in the nose.
https://ent.vcu.edu/specialties/smell-and-taste-disorders-center/

Even if it’s not something you want now - it might be worth keeping up with future advancements.

Fortunately, I do taste fairly well. (I think) It’s the only time the bitter fades away, except when I sleep.

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.

Good luck! When it got so bad during treatment when I couldn't find anything to eat, my oncologist told me to drink Ensure. When I said there weren't enough calories in Ensure without drinking a case, he told me to mix it with Whitey's ( a local premium ice cream). He said many of his patients lived on that. Needless to say he's no longer my oncologist for this and many other reasons. I don't think my issue was dry mouth as occasionally I would crave a hamburger (fast food). If I chewed quickly I could eat about 3 bites before the bun tasted nasty (the wheat). Then it tasted like sweet spit. I often pan-fried boneless skinless chicken breasts and ate them cold. I would sit in my chair reading a book holding the chicken in one hand and eat while reading. I was too focused on the book to pay attention to the (non)flavor of the chicken.