tongue burning

geezer

I had 40 rad and 6 chemo treatment for throat cancer, the last radiation was 4/3/07 but still have fairly acute sensistivity to spices especially pepper with my tongue and to some extent the back of my mouth or palate. I thought this would be gone by now, but still dealing with it on top of lack of taste and dry pasty mouth. Any suggestions on how to eleviate the burning or does anyone have experience with this fading later after treatment. Also my tongue has lots of cracks and crevices that weren't there before the radiation, I assume this is perminent scaring from radiation.

BugHunter

My last tx was 3/28/07 and still can not do spicy things all that well,probably never will be able to. The way I see it is that I am still alive to enjoy the rest of the stuff! My saliva is back to about 85% of what it once was but getting a little better every now and then. The only thing I can not taste right now is ham (I can taste bacon, go figure?)

BILL

geezer

BugHunter said:

My last tx was 3/28/07 and still can not do spicy things all that well,probably never will be able to. The way I see it is that I am still alive to enjoy the rest of the stuff! My saliva is back to about 85% of what it once was but getting a little better every now and then. The only thing I can not taste right now is ham (I can taste bacon, go figure?)

BILL

Thanks bughunter for your reply, has anyone told you why causes this lingering affect? And you right it's the big pictre thats important, though I do hope my saliva situation gets better as the constant dry mouth drives me crazy at times.

soccerfreaks

geezer, I had half of my tongue replaced with muscle and tissue and nerves from wrist area of arm in oct of '05, followed by 33 rad sessions and several chemos. At the time, of course, half of my tongue did not resemble a tongue at all. However, over time, the tissue in your mouth seems to naturally become like the material of your original tongue, do to all of the natural biochemical stuff going on in there. I know it did for me! So you might want to hold out hope that the cracks and such on the surface of your tongue will resolve themselves over time.

Re the spiciness of foods, I've had the same experience. In my case, I have other issues with eating, but still go after it. I have decided that this is akin to being a baby again, and that you wouldn't feed jalapenos to a baby (unless you lived in Texas ). The point being that I believe you need to start with minor spiciness and then progress slowly with whatever you can handle and that eventually you will be able to tolerate greater spiciness in your foods.

Re the saliva, I am sure you were made aware that radiation MAY actually take out your salivary glands completely and forever. Hopefully this is not the case for you.

You are but a year away from your treatment, and it DOES take time to rehabilitate! Please be both patient AND aggressive! I have a feeling you are going to see quite a bit of progress over time.

Take care,

Joe

wboaz

geezer said:

Thanks bughunter for your reply, has anyone told you why causes this lingering affect? And you right it's the big pictre thats important, though I do hope my saliva situation gets better as the constant dry mouth drives me crazy at times.

I had my radiation 2.5 years ago and my mouth is still dry. Maybe 10% of normal saliva output. I also had extreme sensitivity to spices, even some pepper in a sandwich would burn like hell. Ketchup and other foods with vinegar were also bad. Chocolate was so bitter I couldn't take any of it and frosting on a birthday cake tased like eating pure fat. These tastes have all changed over time. It is like having a newborn baby tongue. You have to learn to taste all over again. Vegtables will be one of the early things to return to normal if you are like me. Fruit still tastes funny though. It's strange so you just have to keep coming back every couple of months and try things again. I don't think sweet is ever coming back the way it was.

wboaz

geezer said:

Thanks bughunter for your reply, has anyone told you why causes this lingering affect? And you right it's the big pictre thats important, though I do hope my saliva situation gets better as the constant dry mouth drives me crazy at times.

I had my radiation 2.5 years ago and my mouth is still dry. Maybe 10% of normal saliva output. I also had extreme sensitivity to spices, even some pepper in a sandwich would burn like hell. Ketchup and other foods with vinegar were also bad. Chocolate was so bitter I couldn't take any of it and frosting on a birthday cake tased like eating pure fat. These tastes have all changed over time. It is like having a newborn baby tongue. You have to learn to taste all over again. Vegtables will be one of the early things to return to normal if you are like me. Fruit still tastes funny though. It's strange so you just have to keep coming back every couple of months and try things again. I don't think sweet is ever coming back the way it was.

stevelfun

wboaz said:

I had my radiation 2.5 years ago and my mouth is still dry. Maybe 10% of normal saliva output. I also had extreme sensitivity to spices, even some pepper in a sandwich would burn like hell. Ketchup and other foods with vinegar were also bad. Chocolate was so bitter I couldn't take any of it and frosting on a birthday cake tased like eating pure fat. These tastes have all changed over time. It is like having a newborn baby tongue. You have to learn to taste all over again. Vegtables will be one of the early things to return to normal if you are like me. Fruit still tastes funny though. It's strange so you just have to keep coming back every couple of months and try things again. I don't think sweet is ever coming back the way it was.

Boy
Boy, I have sooo much in common with all you.....

Yeah - spicy stuff is tough. Vinegar - yeeeoow! Hot. Carbonation too. All that.

It has gotten better over the last year, but still not great. Treatments ended 06/07.

Can't even think about wasabi and sushi. :-(

Yeah - ice cream - cold slimey fat. LOL

I miss tasting coffee like I used to.

My mint gum that I use to help with the saliva burns a bit when I have a fresh piece.

gybowman

Help my aunt

My aunt had cancer and had half of her tongue removed.  I suggested maybe I could give her some interesting soup recipes, since that might be easier.  She said the radiation burned her tongue and ruined her tastebuds.  She says I should imagine what it would be like never to taste anything again.  In her mind she can imagine, or remember, what something tastes like, but when she eats she's really disappointed.

Is there nothing to smelling the food, which I presume she still can?  Does that help at all?

It makes me want to cry, but I'd like to be more helpful.  Does anybody here have any insight on how I can be supportive?

 

Thanks for any insight.

Skiffin16

gybowman said:

Help my aunt

My aunt had cancer and had half of her tongue removed.  I suggested maybe I could give her some interesting soup recipes, since that might be easier.  She said the radiation burned her tongue and ruined her tastebuds.  She says I should imagine what it would be like never to taste anything again.  In her mind she can imagine, or remember, what something tastes like, but when she eats she's really disappointed.

Is there nothing to smelling the food, which I presume she still can?  Does that help at all?

It makes me want to cry, but I'd like to be more helpful.  Does anybody here have any insight on how I can be supportive?

 

Thanks for any insight.

Old Post..

Welcome...

But I'm going to move your post to a new fresh one (just for you...)

Also, check the SuperThread, first post on the H&N Forum..., tons of good info, and some food recipes... One to try is called Magic Mineral Broth...

Also, there are a few that have had their tongues partial or more removed and or reconstructed... They'll chime in I'm sure.

Best,

John

Ingrid K

gybowman said:

Help my aunt

My aunt had cancer and had half of her tongue removed.  I suggested maybe I could give her some interesting soup recipes, since that might be easier.  She said the radiation burned her tongue and ruined her tastebuds.  She says I should imagine what it would be like never to taste anything again.  In her mind she can imagine, or remember, what something tastes like, but when she eats she's really disappointed.

Is there nothing to smelling the food, which I presume she still can?  Does that help at all?

It makes me want to cry, but I'd like to be more helpful.  Does anybody here have any insight on how I can be supportive?

 

Thanks for any insight.

Tongue Cancer Survivor checking in

And here I am.  I had 75% of my tongue removed 2 years ago and I am doing very well.

So tell your aunt, she will be on the other side of treatment soon, but that it does take time.   And tell her that her taste buds have been fried, but they will come back (maybe not 100% of what they were but they will improve).  Things may all taste extremely salty, or in my case everything (even water) tasted like dirty dish soap.  That will pass.

Definitely try the Magic Mineral Broth in the SuperThread. If you want to make up a batch for her, it can easily be frozen so she can have small portions available to reheat.  Don't be alarmed if it tastes nasty...try something different until you find something she can actually taste.  Try pudding, jello, chocolate milk, cheesecake, canned peaches in syrup, smoothies.  For me it was easier to eat things that were icy cold or frozen...others needed everything at room temperature.  She needs to experiment until she finds her "go to" food.

Some things will smell bad...really bad.  I had to leave the room sometimes... but not a big deal in the big picture.

You don't mention if she has a feeding tube, but I am guessing not.  She really needs to get enough calories in every day (around 2000) and plenty of water (a minimum of 64 ounces).  She must keep swallowing regardless of having a tube or not.  You do not want those swallowing muscles to stop functioning ....and they will.

If your aunt would like to talk to me directly, please send me a private message under "CSN Email".

Welcome.

Ingrid

 

 

wytrbt

wboaz said:

I had my radiation 2.5 years ago and my mouth is still dry. Maybe 10% of normal saliva output. I also had extreme sensitivity to spices, even some pepper in a sandwich would burn like hell. Ketchup and other foods with vinegar were also bad. Chocolate was so bitter I couldn't take any of it and frosting on a birthday cake tased like eating pure fat. These tastes have all changed over time. It is like having a newborn baby tongue. You have to learn to taste all over again. Vegtables will be one of the early things to return to normal if you are like me. Fruit still tastes funny though. It's strange so you just have to keep coming back every couple of months and try things again. I don't think sweet is ever coming back the way it was.

burning mouth and throat

Thank you for your information. I felt better. I am post radiation for epiglottis cancer two years now and still have trouble with pepper, spices, fruit and vinegarl My oncologist said I shouldn't have this problem still so I began to feel doomed. Going out to eat is quite a challenge and interferes with traveling. Still have to use good old magic mouth wash!