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Tongue feels weird

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

My husband,Buzz, finished radiation/chemo on January 10th for a Stage IV BOT cancer. He still has his PEG and uses it for water and 2 cans of Osmolyte per day. Otherwise his oral intake is liquid. His throat is only slightly sore and his tongue is not hurting. However, any solid food(no matter how soft) feels weird in his mouth. He does have trouble moving it around in his mouth. Because of this, he is reluctant to try solids. Would speech therapy help for improving his tongue function? Has anyone had this problem?
I can't grasp what his difficulty is. Karen

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

Yes, a speech patholagist would be a big help with swallowing. My experience is you should already have one on board and seeing them already. Make sure the therapist has alot of experience with head and neck cancer survivors.

I had a spot removed from my tongue 2 years ago. It was so weird the feeling you have as all those connections need to learn to do the same things it did before. I felt for a long time everything was caught in the area that was cut on. Mine did get better and better but at a slow pace. It was over a year before most of that uncomfortable feeling is somewhat gone. Now two years later I hardly think or feel it.

With having radiation/chemo your recovery may even be long due to the slower healing and recovery from the side effects of you treatment.

To me the more you try to eat solids and the more swallowing with liquids even though it is hard will help to make a faster recovery. Keep trying to eat and for certain to most all your liquids by mouth.

Looking for a fast recovery for Buzz

John

D Lewis's picture
D Lewis
Posts: 1563
Joined: Jan 2010

Tongue is going to feel weird for a really long time. I'm about nine months out from treatment and my tongue is still weird. Sometimes it gets in the way. Sometimes I bite it. Sometimes my speech is slurred. I attribute some of it to edema. My tongue actually swells up and gets larger. Other times it just seems like its hard to move my tongue around, like the radiation damaged the tissues and muscles, which I'm sure it did. My doctor said something about all the muscles getting all fibrous and less flexible. Doc gave me neck-stretching excercises but I'm not sure there's any such thing as tongue stretching exercises.

Certain foods still make my tongue burn. If I eat something too spicy, or too rough or hard to chew, the surface of my tongue will be sore for days afterwards. And/or my taste buds will be off for a few days, and even things that tasted almost "normal" will taste odd for a few days.

I believe I'm still healing and improving with every day that passes. It takes a very long time, and sometimes it feels like I'm going backwards rather than forwards. Buzz isn't going to get past this for quite a while yet. Some of these effects will be with him always. It's just one of the long-term effects of radiation that we all have to learn to deal with.

Keep moving forward. Eat anyway! Don't hold back waiting for some kind of 'improvement' that may never happen. Best of luck to Buzz. He can handle this. He's already been through the worst.

Deb

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

I still think you are pushing this too much. It hasn't been even two months. He needs to start with soft foods, he isn't ready for solids. He won't be for a while. A speech pathologist can help with exercises to help with moving the tongue around better. It's not going to help with how the food feels on his tongue. That is only going to be solved through time and healing.

I have tried to explain this before. I will try again. Karen, have you ever burned your tongue on something scalding hot? it's about 100 times worse. It's like your tongue was dipped in a deep fat fryer. Then try and eat a spoon full of crushed glass and sand.

This needs to be taken and broken apart into manageable goals. Small steps that are a challenge but eventually attainable. If you put solid food in front of him, it's just overwhelming and frustrating. When I couldn't eat food and was on a peg tube only, it was literally like torture to smell food. I would literally shake and cry at the smell of a bagel. :( It is so depressing and frustrating not to be able to eat like a normal person. It's maddening.

Manageable small goals. Like getting down a yogurt. Some banana. Avocado. Pastina, cooked very soft with butter. Apple sauce. Smoothies made from these items are a good idea as well. Cream soups. Once he masters these items then try oatmeal, but not the steel cut kind. Try the instant and run it thru a chopper or blender to make the pieces even finer. Instant mashed potatoes. Poached eggs. It's not a good idea to mix textures and pieces of things to start out either. Help to set him up for success not failure.

After mastering that try soft cooked veggies. (even purée or mash them at first if necessary) cauliflower, carrots, sweet potato. I still probably get half my daily calories or more from drinking them. Smoothies and freshly juiced fruit and vegetables. I just weighed myself last night and I am up to 107.5 lbs. I gained 13 since I got rid of my peg in september. I just finished a smoothie of Greek yogurt, honey, almond butter, one whole apple, small carrot, and one orange.

I wasn't able to even drink liquids during treatment. My mouth was the worst my docs had seen. I am proud of the progress I have made, but it was a rocky road for quite some time and it takes time, patience and attacking things with small goals. Each tiny victory is like a blessing.

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

Thank you sweetblood22. You really explained all of this so well. I am struggling with solids. I take in mostly liquids, eggs, bananas milk shakes, mac and cheese. I think a lot of the struggle with solids is dry mouth. Saliva helps breaks food up while chewing and no saliva food just doesn't travel. I have trouble with solids burning the soft palate area of my mouth. It doesn't last but is irritating.
Thanks for the info.

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

You're welcome. Have you tried the mincer/chopper trick? Not sure if you saw that post that I answered you on another thread. You are right. Lack of saliva is also part of the problem. Without those enzymes the food just doesn't break down the way it should.

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

I know you have explained all this time and again. It is so difficult to be patient. I offer Buzz very small portions of soups I am eating. Nothing goes over well. When I say solids I mean soups and soft foods. I think it is the texture of even the softest foods which he can't seem to tolerate. For now he taking only liquids by mouth. Thanks sweet for all your wisdom. Will try your suggestions.

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

There really is no way you could fully understand unless you have been through it. I am sure it's frustrating to be a care giver and want to help, but you really cannot. So many people looked at me like I had six heads when I told them that mashed potatoes hurt my tongue and was painful to eat. It realiy is a bizarre feeling.

My tongue is still healing almost two years later! It's weird too, because it's healing from back to front. The tip of it still really hurts and it doesn't look right at all. It really was brutal.

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

There really is no way you could fully understand unless you have been through it. I am sure it's frustrating to be a care giver and want to help, but you really cannot. So many people looked at me like I had six heads when I told them that mashed potatoes hurt my tongue and was painful to eat. It realiy is a bizarre feeling.

My tongue is still healing almost two years later! It's weird too, because it's healing from back to front. The tip of it still really hurts and it doesn't look right at all. It really was brutal.

kbcook
Posts: 4
Joined: Feb 2011

hi my name is ken im 51 in 2008 i had stge 4 tongue cancer 3/4 of my tongue was removed it was also hard for me to eat was doing good then my teeth rotted away have no insurance to get them fix but can eat soft food also hard to move food but with hard work and t he determine to eat will get the hang of it

DominicM's picture
DominicM
Posts: 18
Joined: Nov 2010

I'm two weeks post radiation for SCC BOT and I can certainly relate.
I spoke with a speech/swallowing therapist who explained to me that the radiation can stiffen up the muscles that help to position and swallow food and she gave me some great tips to help loosen up those muscles as sometimes it does take me a bit of effort to "position" food for swallowing....the best tip I got was to hum, or say the letter "M", by taking a deep breath first and humming as long as possible with the jaw open about half an inch, and to do this exercise for several minutes a day.
My recovery has been great so far and I've been eating solid foods all throughout my treatment so I probably wont actually need any speech or swallowing therapy, but I'm sure that there must be several others on this site who have been to a therapist and can offer other exercises to perform.

Greend's picture
Greend
Posts: 678
Joined: Feb 2010

My position was turning my head to the left and lowering my chin to my chest to swallow. Even I thought I looked funny. No I only habe the upper and lower most muscles working so I can't sawllow any more...that too looks funny when I whip out my tube to start dinner.

lexipm
Posts: 7
Joined: Mar 2011

I had a tumor at the base of my tongue. After chemo and radiation my taste buds were fried, I and little salivary function, and swallowing was extremely difficult. I had the sensation I was gagging when food got to the back of my mouth. Food that was not liquid balled up and would not move because of the lack of saliva. After my port was removed I existed almost exclusively on shakes made from sherbet, ice cream, yogurt and frozen fruit. For some reason the cold stuff got paste that block I felt at the back of my throat easier than warm soup. 17 months after treatment eating continues to be an issue, due to the lack of taste or saliva. I can eat just about anything if taken with lots of water.

mikeev
Posts: 19
Joined: Jun 2012

hy folks

I was diagnosed with Tongue Cancer on May 17th 2012, then underwent Chem and Rad theraphy for a period of 8 weeks June-August, from being diagnosed I was fitted with a Peg tube and also had to take Ensure 2Cal (400 calories per bottle), once the PEG tube was fitted had Jevity 1.5 (1.5 litres)to make sure that i was having a minimum of 2100k per day. During this time I was unable to take anything other than soup orally, due to swelling of throat and tumour on back of tongue. since completing treatment for the first 4/5 weeks I was on overnight feeds with my Peg,suplemented by soup(very smooth) and smoothies.I gradually started to make my soups thicker and chunkier to try and get my tongue used to more solid food, the main problem is getting food from the front of my mouth to the back without clogging up,my next step was to try vegetables with a fairly thick gravy that would help with manipulating the food to the back of my mouth so that I could swallow. during this period I kept thinking what if I could try other foods like steamed puddings, pies, rice and pasta at first these were very hard to swallow but I percivered and can now eat them as long as I have sauce or gravy, my next step was to try Steak I had this with a pepper sauce to aid eating, this took a week or two to get used to, during this period I was still not able to eat Bread etc, have now after 13 weeks managed to eat a Cheese and Tomato Panini as long as I can have a drink with it, The speech therapist and dietician did not think that i would be able to eat like this for at least 6-12 months, It is hard to eat proper food but I am setting targets for different types of food each week if I can't eat it that week I will try a couple of weeks later.

At the present time I can now eat:-

most types of potato Mash,roast and Chips
Rice
Pasta
pies
Puddings
mild curries
fruit deserts
Custard
Porridge
beer (but taked long time to drink0
Starbucks caramel machiato(My favourite drink plenty of calories)

I am not able to eat:-
fresh fruit
bread
chocolate bars
snack bars
but am working on them

cannot drink wine at the moment this really burns my throat

My salivary glands got frazzled during treatment and I have a very dry throat most of the time.

have found that As long as I can have a dring to wash food down I am pretty well ok, the main problem is food that stays in my mouth after a meal that i cannot swallow and have to spit it out.

I have still got my PEG but have not used it for 3 weeks as I was getting to be dependant on it to ensure that I had enough calories to put weight on, but decided that I had to try and get by eating and drinking properly.

Some foods still burn my throat/tongue but am gradualy getting used to this as it will normally only last for a couple of hours after eating

Mike

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

Sounds like you're making good recovery progress. Keep it up!

hwt's picture
hwt
Posts: 2124
Joined: Jun 2012

Milk seems to make food go down easier. Do you have any Magic Mouthwash? It numbs the mouth long enough for you to eat. Might also try baked potato with lots of butter and sour cream and try pancakes with plenty of syrup. You're on the right track....

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