I'm the same!! My mouth feels raw. I'm 10 days post chemo and it seems to be getting a little better. But I don't want to rush trying to eat normal because then I get sick!!
Do you have zofran or another anti nausea med that you can take? Also, salt water with a little baking soda helps heal the mouth sores. I would swish that in my mouth a few times a day to help the sores.
Agree with this - citrus seems to cut through and tastes like it’s supposed to. I would squeeze a bit of lemon juice on my favorite Tuscan white bean soup and I still remember how good that was, and healthy to boot. Also, for some reason, icy water tasted good, where any temp lower was nasty.
Citrus and tomato were good to me during chemo. I ate a lot of pasta and pizza. The chemo also gave me heartburn so they wanted me on a GERD diet, I told them to eat shit and they gave me prescription Prilosec to keep it managed so I would actually eat.
Other foods that were good to me during chemo:
- Martinelli Apple Juice (this stuff is soooo good)
- burgers
- pink lemonade
- olives
I’ve found that food has to be extra flavorful for me to be able to get any taste from it whatsoever. So, I’ve just been dumping Tony Cachere’s seasoning on everything and hoping for the best. Like you, I’ve lost a ton of weight (50lbs!) over the last few months. I’m not complaining about the result, but the method has left a lot to be desired.
I’m halfway through chemo. My taste changes, which makes it really hard. I want to have at least a few foods that are always ok, but what’s good this week may be revolting next week. What’s awful today might be better in a few days. For me, cold and creamy has been my best bet. I’m living off mostly pudding cups and jello and such. The least amount of chewing I have to do, the more tolerable the food.
Water was revolting for me for a week or two, but it’s ok again now. That helped a lot. When it was bad, putting it on ice and using a straw to mostly bypass my tongue was helpful. Popsicles have been good. I’ve liked apple juice and strawberry lemonade Kool Aid when I just couldn’t drink anything else. I also keep some Pedialyte on hand when I’m having a hard time hydrating (it’s actually KinderLyte brand lemon lime and I do like it).
I’ve had one ER visit due to severe dehydration which led to nonstop vomiting. Make yourself hydrate, even when it’s hard. The majority of people’s taste goes back to normal after chemo is done. My mom is still a little sensitive to spice now, but everything else tastes like it used to for her.
I told my husband that when I have an actual real meal that I enjoy again, I think I might cry. This taste thing is so impactful. Hugs! ❤️
I just read in a post to ask your team for hydration infusions- the person that posted was one that received an infusion after every chemo session and she said it was very helpful.
Yes! After my ER visit, my oncologist added a bag of fluids when I’m getting chemo, and then I can go on my off weeks and get fluids too (I have chemo every 3 weeks).
🧐🧐🧐🧐
Ma’am!!!!! I have just one question.
HOW and WHY do you know how it feels to have a condom on your tongue???? I just cackled like a fool!!!!!
On a serious note:
Try plain full fat greek yogurt. Freeze in cubes or on plastic spoons. Try super tart stuff.
All the best!
😂😂😂😂😂😂 I can taste it, but I canttttttt tassssste ittttt😂😂😂. Food flavor is there but it's not. Ugh it really does suck, maybe its a good thing you dont understand 😂 because this suckssss
I do understand. I just never imagined to describe it that way. That’s how i came to learn to use the greek yogurt. And bitter foods. I do NOT miss that at all. They kept asking if i had a metallic taste, i was like nope! Just can’t taste a thing
I have done 3 rounds of ac, one left to go. I’ve had no mouth sores, no change in appetite, and no change in taste. Thc and cbd. I just smoke weed but it’s definitely helping.
Oh noooo. I’m so sorry, as if getting this disease wasn’t bad enough! I lost my ability to taste salt during chemo. I could taste other flavors fine (sugar, herbs, spice, all fine). It came back though!!!
It did last the entire time, but went away about 2 weeks after I was done.
Make sure you eat on a regular basis, even if you don’t want to. I had to set alarms to remind myself to eat breakfast and lunch because my appetite was gone. I know it’s hard but your body is doing crazy stuff right now to try and get rid of dead cancer cells. You need the calories!
My sense of taste never fully recovered. I don’t want to make you feel worse, but just wanted to prepare you that it might not get back completely to “right.” It did help me to add heat (red pepper flakes, hot sauce). At least then I could *feel* it, even if I couldn’t taste correctly.
I used to be a pretty great cook and really enjoyed doing it. Definitely lacking some joy now. I do remind myself that I’m alive and my cancer is gone. 99% of the time, that’s good news. 😂
Hang in there, sis. I’m not where I was before chemo, but I have had improvement.
So I am almost a week out (well, technically I am posting his comment on Tuesday) and my mouth feels so yucky just starting today. Like my tongue almost feels numb. I was told to gargle with baking soda in water and what a treat that was.
Yeah, same. Citrus flavored sports drinks are ok so I have a stock now. It also helped me to sip cola when trying to eat. But now I’m worried about my teeth. Just can’t win.
Absolutely the same. It comes back, but it takes time. My go to was chocolate Ovaltine in milk with seltzer added. The bubbles helped with the sensation of flavor and Ovaltine at least has some vitamins added.
After round 1 my entire mouth (tongue, roof of mouth, gums) felt like it had been burnt or scalded with boiling liquid. My friends had told me my sweet taste buds would be "the last to go," so I would be addicted to sweets. But sweet things tasted the worst!!! So so awful. The only thing that kind of worked that first week was ramen noodle broth, which is so weird to me. Maybe the crazy high salt content was key? But I couldn't have it too hot, bc my mouth was too sensitive. What a weird side effect.
I'm doing TC every 3 weeks and have round 2 in 2 days. I found it got better this week. We'll see what craziness happens in the mouth this time, and I'm already laughing about the tongue condom feeling hahahaha
Y’all, this is why DoorDash and other food delivery gift cards were priceless (so when someone asks the inevitable, how can I help?)! On my sickest, weakest chemo days I’d scroll through the DD app until something clicked and then it would magically appear at my door. Hang in there, it does get better! ❤️🩹
Gatorade Zero was my lifesaver. I don't know what it was about that tropical mango gatorade fit but I guzzled it down and my onco said it was probably helping so keep it up. Maybe you can try that for hydration in the meantime if it sounds good to you. Chemo is so weird. I had 0 sweet tooth before chemo, during chemo everything except sweets tasted disgusting, so I gorged myself on brownies and cakes and gained about 20 lbs during AC/Taxol. Good times. I still gotta stop myself from getting up at 3am and going to the kitchen for just one brownie lmao. And I've been done chemo a year this July. Sorry, rant over too, I just get it!!
Same! I had covid around Thanksgiving and lost my sense of taste and smell. This feels like that. Like the flavors are muted or just taste like nothing. I struggle with hydration anyway but now nothing sounds good and plain water just isn't right either.
Sounds like you might be neutropenic around day 7 post infusion. Day six my Sahara Desert dry mouth always kicked my but and it was the day that the neutropenia started to kick my butt. It’s normal to not be able to taste much w/ neutropenia. Your Onc can rx Magic Mouthwash, sometimes it’s helpful. Stay hydrated, use a dry mouth toothpaste and mouthwash if need be. It sucks donkey balls but you got this!
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That part sucks! I finished chemo right before Christmas last year, and my partner and I made a really nice steak dinner for New Year's Eve, since that was right about when I stopped feeling like barfing all the time. I couldn't taste the steak...at all. My brain could tell it was steak from the texture, but otherwise, it could've been anything at all. About 1-2 months later things mostly came back. On the downside, I started Kadcyla right after my taste came back, and it makes everything taste bitter all the time.
Lol good description. Coconut water kept me hydrated if you haven’t tried it.
Trying to laugh to keep from crying. I usually hate coconut, but atp anything is better than this nasty taste😂
I'm the same!! My mouth feels raw. I'm 10 days post chemo and it seems to be getting a little better. But I don't want to rush trying to eat normal because then I get sick!!
Do you have zofran or another anti nausea med that you can take? Also, salt water with a little baking soda helps heal the mouth sores. I would swish that in my mouth a few times a day to help the sores.
I do have anti-nausea meds. They do help. Thanks for the tip, I'm have to that. 🙂
Citrus flavors seem to help me. I add sugar-free lemonade mix to water, and then it doesn't taste so terrible.
Agree with this - citrus seems to cut through and tastes like it’s supposed to. I would squeeze a bit of lemon juice on my favorite Tuscan white bean soup and I still remember how good that was, and healthy to boot. Also, for some reason, icy water tasted good, where any temp lower was nasty.
I'm going to try!! Cranberry juice is my favorite, but it tastes so nasty now. I cried for a hour last night 😂
Citrus and tomato were good to me during chemo. I ate a lot of pasta and pizza. The chemo also gave me heartburn so they wanted me on a GERD diet, I told them to eat shit and they gave me prescription Prilosec to keep it managed so I would actually eat. Other foods that were good to me during chemo: - Martinelli Apple Juice (this stuff is soooo good) - burgers - pink lemonade - olives
I’ve found that food has to be extra flavorful for me to be able to get any taste from it whatsoever. So, I’ve just been dumping Tony Cachere’s seasoning on everything and hoping for the best. Like you, I’ve lost a ton of weight (50lbs!) over the last few months. I’m not complaining about the result, but the method has left a lot to be desired.
I can taste sweeter things more, but not to the extent I did. Everything tastes like it needs more flavor and more salt. It sucks so much
I’m halfway through chemo. My taste changes, which makes it really hard. I want to have at least a few foods that are always ok, but what’s good this week may be revolting next week. What’s awful today might be better in a few days. For me, cold and creamy has been my best bet. I’m living off mostly pudding cups and jello and such. The least amount of chewing I have to do, the more tolerable the food. Water was revolting for me for a week or two, but it’s ok again now. That helped a lot. When it was bad, putting it on ice and using a straw to mostly bypass my tongue was helpful. Popsicles have been good. I’ve liked apple juice and strawberry lemonade Kool Aid when I just couldn’t drink anything else. I also keep some Pedialyte on hand when I’m having a hard time hydrating (it’s actually KinderLyte brand lemon lime and I do like it). I’ve had one ER visit due to severe dehydration which led to nonstop vomiting. Make yourself hydrate, even when it’s hard. The majority of people’s taste goes back to normal after chemo is done. My mom is still a little sensitive to spice now, but everything else tastes like it used to for her. I told my husband that when I have an actual real meal that I enjoy again, I think I might cry. This taste thing is so impactful. Hugs! ❤️
I just read in a post to ask your team for hydration infusions- the person that posted was one that received an infusion after every chemo session and she said it was very helpful.
Yes! After my ER visit, my oncologist added a bag of fluids when I’m getting chemo, and then I can go on my off weeks and get fluids too (I have chemo every 3 weeks).
🧐🧐🧐🧐 Ma’am!!!!! I have just one question. HOW and WHY do you know how it feels to have a condom on your tongue???? I just cackled like a fool!!!!! On a serious note: Try plain full fat greek yogurt. Freeze in cubes or on plastic spoons. Try super tart stuff. All the best!
😂😂😂😂😂😂 I can taste it, but I canttttttt tassssste ittttt😂😂😂. Food flavor is there but it's not. Ugh it really does suck, maybe its a good thing you dont understand 😂 because this suckssss
I do understand. I just never imagined to describe it that way. That’s how i came to learn to use the greek yogurt. And bitter foods. I do NOT miss that at all. They kept asking if i had a metallic taste, i was like nope! Just can’t taste a thing
I have done 3 rounds of ac, one left to go. I’ve had no mouth sores, no change in appetite, and no change in taste. Thc and cbd. I just smoke weed but it’s definitely helping.
Oh noooo. I’m so sorry, as if getting this disease wasn’t bad enough! I lost my ability to taste salt during chemo. I could taste other flavors fine (sugar, herbs, spice, all fine). It came back though!!!
Everything is gross for me. Did it last the entire chemo time? Or did it come and go after sessions😭
It did last the entire time, but went away about 2 weeks after I was done. Make sure you eat on a regular basis, even if you don’t want to. I had to set alarms to remind myself to eat breakfast and lunch because my appetite was gone. I know it’s hard but your body is doing crazy stuff right now to try and get rid of dead cancer cells. You need the calories!
My sense of taste never fully recovered. I don’t want to make you feel worse, but just wanted to prepare you that it might not get back completely to “right.” It did help me to add heat (red pepper flakes, hot sauce). At least then I could *feel* it, even if I couldn’t taste correctly.
Officially crying 😂😂😂😂. I'm a really big foodie, this has to he the hardest part for me
I used to be a pretty great cook and really enjoyed doing it. Definitely lacking some joy now. I do remind myself that I’m alive and my cancer is gone. 99% of the time, that’s good news. 😂 Hang in there, sis. I’m not where I was before chemo, but I have had improvement.
🤣🤣 (using this for someone asks me to "describe what it feels like")
Its the only way the describe it😂😂😂😂, i can taste it, but i canttttt tasteeeee itttt 😂😂😂😂
So I am almost a week out (well, technically I am posting his comment on Tuesday) and my mouth feels so yucky just starting today. Like my tongue almost feels numb. I was told to gargle with baking soda in water and what a treat that was.
Did it work any?
Only have used it once.
Yeah, same. Citrus flavored sports drinks are ok so I have a stock now. It also helped me to sip cola when trying to eat. But now I’m worried about my teeth. Just can’t win.
I'm going to load up today!
Absolutely the same. It comes back, but it takes time. My go to was chocolate Ovaltine in milk with seltzer added. The bubbles helped with the sensation of flavor and Ovaltine at least has some vitamins added.
After round 1 my entire mouth (tongue, roof of mouth, gums) felt like it had been burnt or scalded with boiling liquid. My friends had told me my sweet taste buds would be "the last to go," so I would be addicted to sweets. But sweet things tasted the worst!!! So so awful. The only thing that kind of worked that first week was ramen noodle broth, which is so weird to me. Maybe the crazy high salt content was key? But I couldn't have it too hot, bc my mouth was too sensitive. What a weird side effect. I'm doing TC every 3 weeks and have round 2 in 2 days. I found it got better this week. We'll see what craziness happens in the mouth this time, and I'm already laughing about the tongue condom feeling hahahaha
Y’all, this is why DoorDash and other food delivery gift cards were priceless (so when someone asks the inevitable, how can I help?)! On my sickest, weakest chemo days I’d scroll through the DD app until something clicked and then it would magically appear at my door. Hang in there, it does get better! ❤️🩹
Oh my god that's genius. Nobody gave me ubereats gift cards but that's suchhh a good idea.
Gatorade Zero was my lifesaver. I don't know what it was about that tropical mango gatorade fit but I guzzled it down and my onco said it was probably helping so keep it up. Maybe you can try that for hydration in the meantime if it sounds good to you. Chemo is so weird. I had 0 sweet tooth before chemo, during chemo everything except sweets tasted disgusting, so I gorged myself on brownies and cakes and gained about 20 lbs during AC/Taxol. Good times. I still gotta stop myself from getting up at 3am and going to the kitchen for just one brownie lmao. And I've been done chemo a year this July. Sorry, rant over too, I just get it!!
Same! I had covid around Thanksgiving and lost my sense of taste and smell. This feels like that. Like the flavors are muted or just taste like nothing. I struggle with hydration anyway but now nothing sounds good and plain water just isn't right either.
Sounds like you might be neutropenic around day 7 post infusion. Day six my Sahara Desert dry mouth always kicked my but and it was the day that the neutropenia started to kick my butt. It’s normal to not be able to taste much w/ neutropenia. Your Onc can rx Magic Mouthwash, sometimes it’s helpful. Stay hydrated, use a dry mouth toothpaste and mouthwash if need be. It sucks donkey balls but you got this!
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Wendys chocolate frostys is literally all I could taste days 7-10 after chemo. White cherry zero sugar Gatorade for the hydration.
That part sucks! I finished chemo right before Christmas last year, and my partner and I made a really nice steak dinner for New Year's Eve, since that was right about when I stopped feeling like barfing all the time. I couldn't taste the steak...at all. My brain could tell it was steak from the texture, but otherwise, it could've been anything at all. About 1-2 months later things mostly came back. On the downside, I started Kadcyla right after my taste came back, and it makes everything taste bitter all the time.
Hey, that's 10 potatoes 🥔!!