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Tongue problems post radiation

mema23
Posts: 2
Joined: Apr 2008

My husband finished radiation/chemo tx for throat cancer 8 weeks ago. All is healing except the tongue! Still vey painful, has a funny-looking coating on top and sides, feels burning sensation when he eats. He is discouraged as he wants his PEG tube out! He can drink the Ensure and other fluids, but is worried about the eating solid foods. Also, taste buds are back but salivary glands are prob destroyed. He still produces a lot of thick secretions in his throat. Is this all normal? Will his tongue heal? How long? Any body else out there who had similar situation? He cannot get off the "magic mouthwash" or Lidocaine either!

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Very sorry to hear that he had to go through this but all that you describe sounds perfectly normal in comparison to my case. I am about 6 months post treatment (35 rads, 7 Cisplatin chemo). I can tell you that in my case my tongue had that white coating for at least 4 months but then improved very quickly. That is also when my taste and saliva production really improved. So don't give up. My ENT says it takes a year to see real saliva production. As for eating, try gravy, thin soups, potatoes thinned and blended, beef bullion, etc. The first tastes to return are usually salty. Sweet will take awhile. Also, tell him to rinse and spit 4-5 times a day with a juice glass of hot tap water with 1/4 tsp. baking soda and 1/8 tsp. salt. That alters the PH in the mouth and helps to reduce the mucous. Also, take Mucinex, the 12 hour version. And drink lots and lots of water. Hang in there. It will get better. And remember, what works for one may not work for all but there will be comparables. Best of luck and keep me posted. Feel free to email me directly by clicking on the email icon next to the message. JK

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

Most of us have gone through what your husband is currently experiencing. I am 10 mos out of treatments and am still recovering. It takes a lot of time, but tell him to hang in there. Take one day at a time. Everyone heals at a different pace. Thick secretions in the throat and the funny looking coating on the tongue were things that I went through as well. At first the doctors thought my tongue had a yeast infection. When it wouldn't go away with meds, I requested that they do a lab culture of the coating. Come to find out it was only due to radiation changes and wasn't yeast after all. I no longer have those things. It gets better little by little.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Congratulations to your husband for his survivorship! And for being so lucky as to have someone like you looking after him, someone who cares to search for answers on his behalf.

The two previous respondents give very good advice, and both are closer the situation than I am, so take my advice with a grain of salt (pun intended :)).

I had half of my tongue replaced along with a radical neck dissection back in October of '05 which is a bit different. However, I agree with you that it is possible that your hub's salivary glands have been nuked into yesterday. In my case, I lost them on one side but not the other. What does this mean? It means that one must assuredly have water or some other thin liquid around (tea, sports drink, cola, whatever) to help wash down one's food.

As someone wrote recently regarding another instance, your hub can look forward to getting back to normal, but it may be a slightly "new normal".

In my case, I DO require a tall glass of water with my meals. That is not such a big deal. Most of us have that tall glass with us anyway, and just don't realize it until we HAVE to have it.

In my case, re the thick secretions, it took much more than a year for that to go away and it really hasn't gone away completely. By one year out though, it should no longer be waking him up, if it is, and it should be a one, two, three times a day thing instead of nearly constant. Mine had practically become something in the rearview mirror until a recent renewal of chemotherapy brought it back up.

Radiation can and does cause swelling in the neck, along the esophagus, and this can be a problem for swallowing. In my case, it has not gone away, but they are now considering dilation (a minor surgical procedure, although they usually repeat it) to expand the food pipe. Your hub is way too early in the game for that to be an issue, it sounds like, and, in fact, it sounds like he is going to do just fine with eating, once the primary swelling from the rads goes away.

If he can eat solid foods and there is no medical professional telling him not to, I would advise that he give it a try, maybe in a small way with liquid-y type things like soups. One thing he doesn't want to happen is to regress in swallowing because he has not been using the muscles. BUT...only if he is comfortable with it.

In the meantime, my great sympathy to anyone doing the 'magic mouthwash'....I tremble at the memory :).

Take care and best wishes to both your husband and his family!

scottkap
Posts: 3
Joined: May 2008

My ENT prescribed EVOXAC to help with saliva secretion. Most docs never heard of it so I would recommend to all of you to ask about it. I have absolutley NO saliva left but it does help me. I went from having to drink water constantly to being fairly normal. He is lucky to have taste buds back That is a big part of it. I am 3 years out and still don't eat anything but Atkins and cereal. Good luck.

mawmark
Posts: 1
Joined: May 2008

It's been since Dec. 26 since last radiation and as of today , I still have lots of problems with my tongue. I did find that the mouthwash Biotine really helps. I keep water with me constantly. I can eat soft foods. no carbonated beverages ,or ice cold or hot drinks. I find that if I swish the drink in my mouth to about the same temp. before swallowing helps too. The tongue dries out at night. And feels like a cat tongue. I still have the thick secretions in back of throat.I keep water with me constantly . Even at the bedside.The Biotine gum is good too. After rinsing and gargling with the mouthwash, I rinse again with water. Also have you tried a saline solution for your nose? This helps with the thick mucous in back of throat .

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