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Stinging tongue

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

My hubby, Buzz, is plagued with stinging of his tongue. It seems to be set off by some foods but sometimes happens on its own. He finished radiation/chemo 4 weeks ago and still has sores on both sides of his tongue as well as the stinging. He is feeling pretty discouraged about this symptom as well as his tongue feeling "weird". We are trying to get him eating again and less dependent on the PEG but this tongue problem interfers with his willingness to eat. He does like Dr. Mary's milkshake. How long does this problem last and what helps?

D Lewis's picture
D Lewis
Posts: 1528
Joined: Jan 2010

Buzz should look for improvement as the 'weeks' pass rather than as the 'days' pass. It's very frustrating, and it seems slow, but with every day that passes, incremental healing is happening. He just doesn't always notice it.

Four weeks is still very early. I was still feeling the effects of the radiation at five weeks. At almost nine months out, certain foods still cause tongue stinging, and now and again, my tongue is just sore. I enjoy hot sauces, but I still can't tolerate pepper. Go figure. I enjoy the flavor of beer, but wine still tastes like vinegar. I have no tolerance at all for hard alcohol, it makes my mouth burn badly. The improvements will come.

Deb

MarineE5
Posts: 749
Joined: Dec 2005

Buzz99,

Has your husband tried using the baking soda and salt solution to rinse and gargle with? It is 1 teaspoon of baking soda and 1 teaspoon of salt mixed into 1 quart of room temperature water. I would take a swig of it about every 30 minutes (using a smaller container/ 8 oz. water bottle) during treatment and it took the edge off of the discomfort. I would rinse and gargle as often as I needed to. I would also do this just before eating anything as it semi-numbed my mouth and throat.

As treatment was continuing, I noticed the solution didn't work as well, so I increased the amount to 1 Tablespoon of each and it worked again. The salt is a natural healer and the sores that I had were trying to heal even when I was doing the radiation, my Radiation Oncologist was really surprised when he looked in my mouth in week 4 and I still wasn't on any pain med's. I weaned off the solution after treatment which took several months.

If your husband hasn't used the solution, maybe he should give it a try and see how his mouth reacts. There may be a little sting at first, but nothing that should cause any pain.
Ketchup burns my mouth if I use too much of it even today and I'm 6 years out.

My Best to Both of You and Everyone Here

oldpaint03
Posts: 27
Joined: Dec 2010

I am a care giver like you to my husband and I know how frustrating it feels for them not to eat BUT we dont understand how bad it is for them to try! Could you eat if your mouth was full of burnt flesh? I'm sure your husband wants to start eating worse than you want him to but it only makes them feel worse to listen to nagging! My husband has a PEG and uses that to get nurishment. If HE decides that he wants to try something to eat I will gladly fix anything that he wants. Sometimes he takes 3 or 4 bites and thats all that he wants. Oh well at least its his dicission to try and I am not Nagging him and that makes him much happier. I have seen Sweets replies to this topic and I think that she KNOWS so maybe you would be wise to read them again! Sorry if this sound cranky, BUT IT IS! Listen to your husband, If he wont eat then Leave him the hell alone untill his mouth heals up!

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

I'm not necessarily sure if I agree with your (Oldpaint) approach as a whole. It might work for you and your hubby. But I don't think my wife would take that approach...LOL, actually I know she wouldn't. She'd probably bop me up side the head, or I her.

Like Dawn has mentioned, eating one way of another is essential. If you don't take in enough calories, plain and simple, it's a matter of time before you pay the price. You have to eat or take in calories to heal and become strong.

I was the worst crouch, I even gripped at my wife for making too much noise taking silverware out for the meal she made me, LOL...she let me know it too....

Yes, it sucks to eat, it's painful, but it is something you have to do.

At four weeks out, he should start making some improvement very shortly, he's still cooking a little I presume.

As for Oldpaint's comments, I can understand being passionate but not quite sure she came across in the same manner that I would have, LOL.

Thoughts and Prayers
John

abbimom's picture
abbimom
Posts: 81
Joined: Sep 2010

I'm sorry to say but I'm 11 years post treatment and still have stinging tongue sometimes. You never realize how much you take eating for granted until this happens to you. It is hard and I know how frustrated he is, but it is extremely painful. After 4 weeks I was still using the tube because it was too painful to eat. I think it took 2-3 months after treatment to eat pudding and drink ensures on my own. It is a slow process and some things will stick with him. Things still burn my mouth such as alcohol, spicy foods, or just pepper. But everyone is different so he may eat just fine. Just be prepared that the foods he ate before might change. I also still have my tastebuds going crazy every now and then. It changes your life and you just need to adapt. Good luck and I hope he is one of the lucky ones who doesn't have a million side effects. Best wishes,
Linda

oldpaint03
Posts: 27
Joined: Dec 2010

I'm sorry to sound so uncaring. I do have great sympathy for Buzz's wife and for anyone that has to go through this as a patient or care giver I have my bad days sorry. Anyway I know they have to eat and I would love to have my husband eat or even try one of those milkshakes so he would get the calories as he has lost about 50#. If I suggest something for him to try to eat sometimes just the thought of eating causes him to be sick to his stomach.He just gets really mad and lets me know how bad his mouth and throat burns when he trys the more I talk about food the worse it is so Thats Why I wont nag. He can use 6 cans of Jevity and that is it, if he adds one more then he is vomiting. I get gripped at plenty believe me , maybe thats why I have given up nagging at him. After I read the post just now I can see why you would think that I am an Onery old lady Sorry I came across that way I am really not. I'm very greatful for you and all of the other folks on here for your help and support through this ordeal. Sometimes I feel very discouraged and I get on this site and read all of the love and support and it makes things so much easier. Once more I'm sorry to offend you.

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

Everyone has different ways of dealing with and coping...and nobody know's your relationships better than you and yours.

What works for one couple, doesn't necessarily work for another.

I think the whole intent from yourself and everyone is all meant to be good. The overall health, comfort, and longevity of our loved ones.

Best,
John

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

You must understand that radiation is cumulative and after he has finished radiation, he still continues to cook for a couple weeks after. I think that he is able to tolerate a milk shake that is a good thing. Yes, it does interfere with his willingness to eat because it hurts! It's so hard to explain the tongue weird feeling. I will try, but unless you have had it you cannot understand how difficult it is to eat and swallow. Not sure if your husbands tongue is like mine but this is the way mine was/is. My tongue feels scalded. Like I drank scalding hot McDonalds coffee straight out the coffee machine. My tongue feels sort of tight in places. My tongue doesn't move the way I want it to. I cannot move it around like I used to. I can't get food that is stuck in my teeth out, I cannot stick my tongue out, I cannot whistle anymore, I can't roll my tongue anymore, my 'th' when I speak sounds like 'ss', my tongue is smooth- you don't see any little taste buds anymore, my tongue is red and it hurts all the time. Normally about a 2-3 on the pain scale every day. Some things, like tooth paste, (I numb my mouth to brush) burn and hurt my tongue so bad it makes my eyes tear and my nose run. Some foods and drinks as well. Forget alcohol. It's like napalm in my mouth. The textures of things in my tongue feel weird. It's not as bad as when I first ended treatment, thank God. Since my tongue is extra sensitive things tend to feel extra grainy. Even mashed potatoes felt grainy on my tongue, like little b-b's. My tongue hurt so bad, that when my parents bought me Bryers Vanilla ice cream, I had to ask them to get the kind without the flecks of vanilla bean in them because it felt like little tiny shards of glass.

If he only has the stinging sometimes, that is good. I think that means he will get it back to normal. But it wlll take time. At four weeks out, I was still a train wreck. Actually that was about my worst. It sounds like Buzz is doing well to me. If he can use the magic mouthwash before eating that can help. I can't eat when my tongue is numb. It makes me gag. IDK I'm weird tho. The baking soda, salt and tepid water helps. And just time! You need to measure in weeks. For me it was months. I think it's hard at four weeks after treatment because you have been done for a while and you expect to be feeling better because you are fininshed with treatments but your body is not done cooking. It's hard, but you need patience.
Hope that the sores on his tongue heal quickly, that should help some, but it takes time. I took a very long time compared to others for my sores to heal. I remember I had sores in my mouth five months after rads. I was in the dentist office many many months after rads and the girls working on my tooth asked me why they were doing it when I was going thru rads. That's how bad my mouth looked. They thought I was still in treatment, meanwhile I'd been out for months.

While eating I have found that dairy products seems to take that sting away from foods for me. Adding butter or cream, marscarpone cheese, sour cream, and milk takes the sting away from acidic foods and adds the extra calories I need to maintain my weight. If you don't do dairy I don't know if other soy products would work. I have found that adding L-Glutamine to my juice drinks allows me to tolerate them better. You can add the Glutamine to water too. I got a large jar of it for about $30 in GNC and I think it does help and I am happy that I can juice again. Also, for a while flat Mug Root Beer was all I could drink besides milk. It has to be MUG brand and flat tho. It actually felt good on my tongue, well, much better than other stuff. That was a suggestion from the hematologist oncologist that I saw. I thought she was nuts, but she was right.

deb e19's picture
deb e19
Posts: 15
Joined: Feb 2010

I finished my treatment July 2010 and I too suffer from stinging mouth with most foods except dairy. My mouth sounds alot like yours not being able to move my tongue around. Solid food doesn't go down well at all. It actually stops in the back of my mouth after about the third bite, like mac/cheese. I am having a terrible time getting enough calories. how long did it take you to get up to enough calories to get off the peg or were you on it. I stuggle with getting 600-700 down a day. The rest I do with my peg. I am looking for any help. I use the magic mouthwash after I eat to numb the stinging.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I am sorry that you are having so much trouble. For a long time dairy was the only thing my mouth would tolerate, for sure. Rinsing with the l-gultamine has helped me some, I think. There have been some studies that have shown it helps with oral mucosa issues during treatment and healing afterward. You can find the Glutamine in a powder form in GNC and one heaped tsp in water to swish and swallow. It is the most abundant amino acid in the body. (if you search 'HNC Superthread help for some FAQ'- on this site - you can find a couple of links there about Glutamine if you want to read about it. It's in the one that says it's about a collection of helpful links) There may also be other thing you may find helpful there.

Onto the food getting stuck. Have you had a swallowing study? I had one and it showed that I had a stricture from radiation damage. I have had two stretchings. I could barely get down yogurt. Now I can swallow soft things and when I cook I mince everything very finely. I used a mincer/chopper. I am doing a lot better. I can eat most soft veggies and even pasta and rice now. Still cannot eat any meat though. Sometimes I can do deli ham and turkey without choking. I can do some fish sometimes and scallops. It took me 18 months to get rid of that Peg tube. It was really a fight to be able to get in enough calories so that I could get it removed. I still do drink a lot of my calories and nutrients. I drink freshly juiced fruit and veg juice with brunch every day. Smoothies as a snack. I find if I drink thicker liquids when I eat that I seem to get things down better. I had gotten down to 87 lbs. I think in September when I got my peg out I was about 94-96? I am now about 101 or so. For a long time I was taking in 2400 cals a day and I still was having trouble gaining. I had to really push and be on top of getting in enough cals. I am doing about 2000 now. I write everything down. It makes me eat more when I keep track and hold myself accountable. My diet is still pretty high in fats, and dairy, but until I am 105-110 I am not going to cut out any extra fat. I do eat a lot of veggies, whole grains and fruits. A lot of my extra fats comes from olive oil, truffle oil, avocado, coconut milk, eggs, butter and almond butter and peanut butter.

So, I would ask about a swallowing study and see if you are a candidate for a dialation. I think there are also swallowing exercises on that HNC Superthread that I spoke of as well. A speech pathologist can also help with that. Don't know if you have a stricture or the muscles are weak or there is nerve or tongue damage. They will know.

You are 7 months out. I was not able to eat anything at all at 7 months. I had my second dialation at 8 -9 months. I had a pretty big improvement at about 15 months. I am a super slow healer. :)

Please feel free to write me anytime. Sorry for the novel. I guess I tend to babble. Part of the magic of me. Lol

Blessings,

Sweet

mixleader
Posts: 267
Joined: Oct 2010

It took me nearly three months after rads to get that stinging sensation out of my tongue. Luckily, mine only really bothered me when I tried to eat anything even remotely spicy. I also had to change to a milder toothpaste for a while since that stung my tongue as well. My taste is back and my tongue is back. This is hard for a lot of us since I know that many, like myself, don't have a whole lot of patience. This reminds me of something I heard not long ago: "Lord, please grant me patience.......and I want it RIGHT NOW!"

Roger

Hondo's picture
Hondo
Posts: 5738
Joined: Apr 2009

Pretty much the same here as everyone else, it takes time to heal. For now just let him drink all the milkshakes he wants and in a few months start trying him on other foods. To me 2 to 3 months after the last treatment is a good starting point to try getting him to eat stuff other then soft foods.

Time is a great healer, Take care
Hondo

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I realize it must be scary to see your loved one so ill and not being able to do the things that healthy people take for granted. Especially eating! I mean it is what sustains and keeps us here in this life. I didn't have a care giver to help me with food and meds and stuff. It was a very hard and lonely road for me. I am so glad that your hubby is under your care and has you by his side. There were times i probably needed a bit of nagging and a swift kick in the arse. You just need to use the nagging wisely and hopefully you will know when to do that. :) I wish the best for you both.

Blessings,

Sweet

PS I wanted to send you a private message about something but I guess you do not accept them.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Get him some. Mix a large teaspoon in water and swish and swallow. It should relieve and neutralize the burning and also help the healing. Keep a glass on hand all day.

Scam

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

I would not mind a private message but don't know how to set that up. Maybe you can direct me.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Yes ma'm. I can do that. At the top left of this page you are on, go to the burgundy section at the top labeled CSN and click on My CSN Space. That will take you to your user account. Next to the tab that says My CSN Space to the right, you want to click on the Edit tab. The third box down is where you want to check the box that says you want to allow private messages. Under that I checked aggressive notification, so when I sign on it gives me a big green box that says when I have private messages and I just click on that to take me to my CSN email. You could also check the box under that if you wish to get an email notification on your regular email. But I get enough emails with my facebook and other groups that I don't do that with this one. Plus I am on here twice a day anyway it seems. :)

Hope that helps. Any questions or if I wasn't clear, just ask.

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

Buzz, you would go to your;

My CSN Space on the upper left side bar;

Edit

Preference

Then about halfway down the page;

Private Message Settings

check mark the boxes....

John

LOL, sorry Dawn, didn't realize you were replying at the same time....

JG

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I was just going to give it to you. Lol you had to show me up with all your fancy bits in bold. Sheesh.

;-P

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

BOLD is easy Dawn...just put a B between <> to turn BOLD on, and the same only with the B after the / to turn it off....

Stick whatever you want to be in bold between the sets.

JG

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Blah blah blah

It's kinda like that, John. :D

It just doesn't register.... Lol

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Buzzwife, I remember someone on here saying they could swallow and physically eat o.k., but were glad they had the tube because they couldn't eat, tastes and textures were awful. That was my case. I could always swallow during treatment. I know there are people here who toughed it out and didn't use a tube.

I used the tube for 6 months or so after treatment. At first, food just wasn't palletable. I had the peg, so I used it. If I'd had to eat to survive, I would have, but I wouldn't have liked it. I was lucky, I never had sores on tongue or in my mouth, but eating was a very unsavory task. It's hard to believe you can chew and swallow and not be able to eat, but again, I could have eaten if I'd had too, I just would have rather had a root canal. It's hard to believe unless you've been there.

Eventually some taste came back, the texture of food became less repulsive, and I got rid of my tube. Eating is still more of a daily job, but I get some pleasure from it, and it's a job I can do. It takes some time, but he'll get there.

best, Hal

sabriene
Posts: 27
Joined: Aug 2006

We can just pray his treatment wasn't as radical as mind. They were able to kill the bad cells thank god but oh my the side effects. My last treatment was June of 06 so you can get an idea what it can like down the road. All these side effects seem to get much better with times. You mentioned the mouth sore. This I have coped with off & on for sometime. It just seems to go with the territory, and one just has to cope. There is prescription item called Magic Mouth wash. What I didn't no until just last week there are many different formulas. The ENT physician gave me one then on my list visit and check up with the rad. doctor he gave me much that I like much better for the mouth sores. It seems to help the mouth sores and dry mouth. He might mention it to the doctor and give it a try. The bottle shows Lido/Diphen/Antacid SUSP 240. I am sure my pharmacist would be glad to give it your. I actually have tried it all for the dry mouht and so far found the best out there in my situation is the biotene mouth spray which I get most at Wal-Greens but now see the Wal-Mart store has it on there shelf. The healing of all this just seems to take way to long, and has a tendency at times to get on ones nerves. However, guess overall we just have to cope with some and thank god we are alive. You mentioned the peg tube. Just don't remove it until he is sure he can get enough daily calories for this can really be serious if taken out to soon. I had mind for over year. It was a piece of cake to remove compared to having it installed. By the way if he isn't taking some daily supplements I would highly suggest this should be done. At the onset I was putting them right in the peg tube. People see me today, and they don't believe by the way I look now that I had very serious stage 4. Getting daily excerise is also very very important to help in the healing and mental health. I wish him the best, and hope he continue on the path of doing very well. Roger

Hondo's picture
Hondo
Posts: 5738
Joined: Apr 2009

You been away for a while, glad to see your back and posting again, hope you plan to stay as a lot of people need help from a long term survivor

All the best
Hondo

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