Constant burning on my tongue when eating food...
May 6, 2024 6:44 PM Subscribe
I believe this is a side effect of immunotherapy, but not 100% sure because it varies in how bad it is, and my last immunotherapy round was 6 weeks ago. But, I am very sensitive to spiciness and my tongue burns pretty easily. "Burns" as in, feels tingly, hot, needs water to cool down.
A lot of "new" food that I've normally eaten without any problems, such as pizzas with tomato sauce (zesty), ceasar salad dressing, even some ice cream flavors, cause my tongue to feel that burning/tingling sensation. The severity of the "burn" depends—sometimes it's extremely uncomfortable and causes me to sweat, sometimes it's minor that a simple sip of water will be enough to help.
It's awfully annoying. I know I can switch to bland food, but it seems like the kind of food is unpredictable and even some food that are "bland", such as ice cream (sweet) cause that, so I'm not sure what to do. Has anyone else experienced this (with or without chemo/immunotherapy)? What helps? Baking soda + lukewarm water?
I'm a foodie, so want this resolved ASAP. I'll ask my oncologist, but figured I'd turn to the green and see if anyone else experienced similar. I know YANMD.
Thanks!
A lot of "new" food that I've normally eaten without any problems, such as pizzas with tomato sauce (zesty), ceasar salad dressing, even some ice cream flavors, cause my tongue to feel that burning/tingling sensation. The severity of the "burn" depends—sometimes it's extremely uncomfortable and causes me to sweat, sometimes it's minor that a simple sip of water will be enough to help.
It's awfully annoying. I know I can switch to bland food, but it seems like the kind of food is unpredictable and even some food that are "bland", such as ice cream (sweet) cause that, so I'm not sure what to do. Has anyone else experienced this (with or without chemo/immunotherapy)? What helps? Baking soda + lukewarm water?
I'm a foodie, so want this resolved ASAP. I'll ask my oncologist, but figured I'd turn to the green and see if anyone else experienced similar. I know YANMD.
Thanks!
Response by poster: Are you neutropenic?
Not sure, don't think so? I was told I'm immunocompromised due to treatments/the cancer itself, but not sure exactly of neutropenic.
Is your tongue coated or sore at all when you're not eating?
Not sore, but I do notice some white coating on top of my tongue when I brush my teeth every night.
posted by dubious_dude at 7:24 PM on May 6
Not sure, don't think so? I was told I'm immunocompromised due to treatments/the cancer itself, but not sure exactly of neutropenic.
Is your tongue coated or sore at all when you're not eating?
Not sore, but I do notice some white coating on top of my tongue when I brush my teeth every night.
posted by dubious_dude at 7:24 PM on May 6
You may have oral thrush or oral mucositis, both of which are common sides effect of immunotherapy drugs. Check in with your care team and they can give recommendations to address the issue, depending on the specific cause.
posted by bluloo at 7:28 PM on May 6 [8 favorites]
posted by bluloo at 7:28 PM on May 6 [8 favorites]
Is your tongue/mouth perhaps very dry? This sort of sensitivity is how I experienced that. There are over-the-counter gels and lozenges you could try to see if they help. (The gel tube suggests using far too much of it, in my opinion: little sips worked much better for me.)
posted by teremala at 8:05 PM on May 6
posted by teremala at 8:05 PM on May 6
I do wonder, based on your samples, if this is a situation of overly-tender mucous membranes reacting to salt and acid. This happens to me when I'm down really bad with sinusy post-nasal drip, where even ritz crackers, most ice creams, and canned soups will "burn" my tongue and soft palate. It could well be thrush or mucositis, or maybe sub-clinical levels of general imbalance in the mouth.
When I was a wee bairn and Lactaid was not quite prescription but had to be kept in a fridge behind the pharmacy counter, my doctor's prescription was to chew one up and then swish the chewed-up pill thoroughly around the mouth with a mouthful of water. We generally did this after brushing teeth (my mother and I are both mildly allergic to the common ingredients in toothpaste), particularly before bed when you're going to spend all night with your mouth marinating in whatever your sinuses deliver.
Later, independently, my mother and I both learned about dairy antidotes to spicy food, and we both started using sour cream or plain yogurt alongside food that would cause irritation. I also learned from an old project manager of mine who was former CIA that a swish and then swallow of oil (whatever kind of cooking-grade oil, ideally as neutral as you can get it) would prophylactically coat your mouth and stomach if you expected to get into an alcohol or miserably-spicy-food competition in a high-stakes situation.
There are protective mouthwashes now, so you don't have to live like you're trying to destabilize Kinshasa, but if you do some experiments and find that a mild non-extra-virgin olive oil really does help, you might get yourself a nice flask to carry some around in. But ask your doctors, because a neutral rinse is probably better for you. They may recommend Throat-Cote tea, which is kind of an acquired taste as it relies heavily on licorice root, but it does put down a sort of slimy protective coating. You can also try chewable antacids.
You might also experiment with both fizzy and non-fizzy mineral water with trigger foods. I have been assured by a number of Southern Europeans, Central and South Americans, Middle Easterners, and people of the African continent that either still or sparkling mineral water, possibly only the kind bottled in glass either way, is THE cure for mouth-burn. It is very possible this is confirmation bias, as I have tried them all and I have still had to put sour cream/yogurt/crema/cheese onto my tongue and lips on more than one occasion, sometimes with my hand. There are some strains of traditional medicine that would suggest using rice (like rice porridge, rice water, gruel) or oats (congee, thinned oatmeal, barley drink. etc) to make that protective layer.
posted by Lyn Never at 9:02 PM on May 6 [4 favorites]
When I was a wee bairn and Lactaid was not quite prescription but had to be kept in a fridge behind the pharmacy counter, my doctor's prescription was to chew one up and then swish the chewed-up pill thoroughly around the mouth with a mouthful of water. We generally did this after brushing teeth (my mother and I are both mildly allergic to the common ingredients in toothpaste), particularly before bed when you're going to spend all night with your mouth marinating in whatever your sinuses deliver.
Later, independently, my mother and I both learned about dairy antidotes to spicy food, and we both started using sour cream or plain yogurt alongside food that would cause irritation. I also learned from an old project manager of mine who was former CIA that a swish and then swallow of oil (whatever kind of cooking-grade oil, ideally as neutral as you can get it) would prophylactically coat your mouth and stomach if you expected to get into an alcohol or miserably-spicy-food competition in a high-stakes situation.
There are protective mouthwashes now, so you don't have to live like you're trying to destabilize Kinshasa, but if you do some experiments and find that a mild non-extra-virgin olive oil really does help, you might get yourself a nice flask to carry some around in. But ask your doctors, because a neutral rinse is probably better for you. They may recommend Throat-Cote tea, which is kind of an acquired taste as it relies heavily on licorice root, but it does put down a sort of slimy protective coating. You can also try chewable antacids.
You might also experiment with both fizzy and non-fizzy mineral water with trigger foods. I have been assured by a number of Southern Europeans, Central and South Americans, Middle Easterners, and people of the African continent that either still or sparkling mineral water, possibly only the kind bottled in glass either way, is THE cure for mouth-burn. It is very possible this is confirmation bias, as I have tried them all and I have still had to put sour cream/yogurt/crema/cheese onto my tongue and lips on more than one occasion, sometimes with my hand. There are some strains of traditional medicine that would suggest using rice (like rice porridge, rice water, gruel) or oats (congee, thinned oatmeal, barley drink. etc) to make that protective layer.
posted by Lyn Never at 9:02 PM on May 6 [4 favorites]
Look up dysgeusia, which is an adverse event (ae) reported in association with cancer-related therapies, ranging from chemotherapy to immunotherapy. Furthermore, dry mouth (often associated with a wider range of meds), can sometimes exacerbate dysgeusia.
In the past, I’ve looked for supporting evidence for the management of cancer-related AEs. I’ve never found any strong evidence for this, but I would still try. Talk to your health care team, and in particular nurses or dieticians. If you are willing to try anything, this journal article references some non-pharmacology strategies.
Good luck and if you want help tracking down references, let me know.
posted by Wolfster at 10:27 PM on May 6
In the past, I’ve looked for supporting evidence for the management of cancer-related AEs. I’ve never found any strong evidence for this, but I would still try. Talk to your health care team, and in particular nurses or dieticians. If you are willing to try anything, this journal article references some non-pharmacology strategies.
Good luck and if you want help tracking down references, let me know.
posted by Wolfster at 10:27 PM on May 6
When I was on chemo, pretty much all food didn’t taste good, and I’m also a foodie. What helped my mouth though, was two things
- rinsing with a mild baking soda solution after every meal. I would floss first, then swish for 30 seconds. I was able to stave off thrush and sores that way
- for dry mouth (which I got, and water tasted like shit to me), I used a candy called Ice Chips. They are sweetened with zylitol, so they don’t ruin your teeth (it actually helps kill bacteria that cause decay), and the strong mint flavor tasted good, and didn’t burn. Another cancer patient turned me on to them.
At one point, I pretty much lived on smoothies and Orgain Protein drinks. I could suck them down cold, which bypassed my taste buds, so I didn’t have to fully taste.
Good luck with the immunotherapy!
posted by dbmcd at 12:36 AM on May 7 [2 favorites]
- rinsing with a mild baking soda solution after every meal. I would floss first, then swish for 30 seconds. I was able to stave off thrush and sores that way
- for dry mouth (which I got, and water tasted like shit to me), I used a candy called Ice Chips. They are sweetened with zylitol, so they don’t ruin your teeth (it actually helps kill bacteria that cause decay), and the strong mint flavor tasted good, and didn’t burn. Another cancer patient turned me on to them.
At one point, I pretty much lived on smoothies and Orgain Protein drinks. I could suck them down cold, which bypassed my taste buds, so I didn’t have to fully taste.
Good luck with the immunotherapy!
posted by dbmcd at 12:36 AM on May 7 [2 favorites]
A burning tongue can be a sign of silent acid reflux. I'm wrangling this condition as I write this.
posted by rabia.elizabeth at 12:51 AM on May 7
posted by rabia.elizabeth at 12:51 AM on May 7
Response by poster: Thanks everyone! I'll wait for the response from my oncologist and go from there.
@dbmcd, is this what you're referring to?
posted by dubious_dude at 4:37 AM on May 7
@dbmcd, is this what you're referring to?
posted by dubious_dude at 4:37 AM on May 7
I'm not dbmcd, but there's an actual "Ice Chips" branded candy, here. But what you linked looks similar.
posted by hydra77 at 6:37 AM on May 7
posted by hydra77 at 6:37 AM on May 7
As Lyn Never note, tor calming it down, try milk, yogurt or sour cream; some fast seems to help. Or bread. I hope you are well.
posted by theora55 at 9:25 AM on May 7
posted by theora55 at 9:25 AM on May 7
This sounds like my experience with geographic tongue. Could the coating on the tongue be that?
Acidity is the main trigger for me. The tomato sauce and caesar salad are big ones for me as well. Do ranch (though this may depend on the brand, some use more/less lemon than others) and ketchup cause the same problem? Which ice cream flavors? If it had any kind of citrus (lemon, lime, pineapple, orange, etc.) that could be the culprit.
A brief search showed me some immunotherapies can cause someone to develop geographic tongue. I’ve had it since I was a child for no known reason. Avoidance is the main thing but it’s a lot easier when you identify acidity (including citrus in sweet foods we don’t generally categorize as “acidic”) as the main issue. This means that the mildest salsa will be experienced as extremely spicy, but sometimes pure capsaicin—with no lemon, lime, or tomato in the dish—is much more tolerable. I can’t eat basically any Mexican food, but I can eat a lot of spicy Asian food because it uses just peppers and doesn’t add a dash of citrus to everything. You may baffle your friends and family by chowing down on jalapeños while complaining that ranch dressing is spicy but hey it gives you some more flavor options.
Can confirm milk does help calm it down, as well as frozen cookie dough bites for some reason? I’m not sure if it’s specific to the brand I buy but that’s one of my go-tos as well. My dentist also told me there’s some evidence B12 supplements might help, but I never bothered to test it out.
posted by brook horse at 4:02 PM on May 7
Acidity is the main trigger for me. The tomato sauce and caesar salad are big ones for me as well. Do ranch (though this may depend on the brand, some use more/less lemon than others) and ketchup cause the same problem? Which ice cream flavors? If it had any kind of citrus (lemon, lime, pineapple, orange, etc.) that could be the culprit.
A brief search showed me some immunotherapies can cause someone to develop geographic tongue. I’ve had it since I was a child for no known reason. Avoidance is the main thing but it’s a lot easier when you identify acidity (including citrus in sweet foods we don’t generally categorize as “acidic”) as the main issue. This means that the mildest salsa will be experienced as extremely spicy, but sometimes pure capsaicin—with no lemon, lime, or tomato in the dish—is much more tolerable. I can’t eat basically any Mexican food, but I can eat a lot of spicy Asian food because it uses just peppers and doesn’t add a dash of citrus to everything. You may baffle your friends and family by chowing down on jalapeños while complaining that ranch dressing is spicy but hey it gives you some more flavor options.
Can confirm milk does help calm it down, as well as frozen cookie dough bites for some reason? I’m not sure if it’s specific to the brand I buy but that’s one of my go-tos as well. My dentist also told me there’s some evidence B12 supplements might help, but I never bothered to test it out.
posted by brook horse at 4:02 PM on May 7
Response by poster: Cookies and cream ice cream seem to trigger it the most, out of all ice cream flavors. Mint, it depends, but the tub I had from Turkey Hill didn't seem to irritate it at all.
My oncologist prescribed me some clotrimazole tablets (the type that dissolves), let's see if that helps make a difference.
posted by dubious_dude at 6:19 PM on May 7
My oncologist prescribed me some clotrimazole tablets (the type that dissolves), let's see if that helps make a difference.
posted by dubious_dude at 6:19 PM on May 7
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