I am now 5 weeks out from treatment and for the last two weeks I've been trying to transition from tube feeds to eating by mouth. At first my throat was sore, tight and scratchy but its really eased up in the last week. I still have very thick, sticky saliva, but Robitussen and salt water rinses seem to work well for clearing it out. I can't taste much and eating some foods is a little like eating library paste (I think! I've never actually eaten library paste).

The challenge at this point? My tongue is still incredibly raw. Its actually getting worse! I slather the viscous lidocaine on it which lasts for about 3 minutes and its right back to hurting again. The sore tongue coupled with a queasy stomach after about 6 bites of food is making this exercise really difficult and I'm starting to get a little discouraged.

I'm not sure if I'm looking for advice here, or sympathy, or what. I guess mostly I needed to rant to folks who will understand. Thanks all for listening.

- Margaret

You can do it!!!!! I have faith in you!! It just takes time and patience. Hang in there. You can't really make your body heal any faster than it wants too, so you just have to stick it out! The important thing is that you are trying, so don't give up! Eating does get easier over time, your tongue gets used to it and starts to build back up some strength and control. Hang in there!!!!

See, that's what's so frustrating! I'm not having trouble moving the food or swallowing, its that my tongue is on fire. It burns! I have a pretty high pain threshold, but this really hurts.

My tongue was on fire for a few weeks as well from the mucositis. I couldn't even drink water because it made my tongue feel like it was on fire. I pretty much didn't take anything through my mouth during that time. Then over a period of a couple of days it noticeably got better, so hang in there. It will get better!!!!

I will be a much happier camper when I can eat at least fairly normally again.

I'll be ecstatic when the PEG comes out!

Thanks for the support, Stephanie. I really appreciate it.

Margaret,

You definitely have my sympathy, but hang in there and try very hard to be patient. It will get better. Have you tried Phenergan or it's generic for the nausea? I had to take it with every food attempt for quite a while.

The tenderness/burning rawness of my tongue lasted about 3 months I think, but that's me. I had other issues going on at the same time so maybe you can't go by me. It did improve during that time, though, and I can't really say when it was gone. I just didn't have much choice but to keep on keepin' on. I didn't fair well with the tube - 5 tubes in 5 months, replaced due to infection, one fell out, one my body sucked in and tried to digest, and clogs from meds that didn't mix well with any liquids I tried to dissolve them in.

Just keep trying different things, sticking to soft and bland for now. Of course there's ice cream, but for a while that burned too much for me (too cold). Chocolate pudding with milk went down pretty well, though. I know we're all pretty tired of Ensure, but that or Instant Breakfast in a shake with ice cream would help with your nutrition. You can throw a banana in the blender for that shake, too. Try using a straw for liquids. I found it easier to swallow and the liquid doesn't touch as much of your tongue.

I also spent some time living on mashed potatoes with milk & butter. I called it my comfort food. I still have mashed potatoes and applesauce with almost every meal. (Idahoan Instants are good, and it's just 4 minutes in the microwave.) The soreness left a long time ago, but other issues with swallowing came up and I need them, along with lots of butter, in order to get other foods like veggies (overcooked to soft) and meats (cut up very small) down.

If you still have your teeth (I don't) and you don't have swallowing problems creep up on you (mine started over a year after treatment stopped but they don't happen to everyone) then you should be eating a lot better with a lot more variety in time for Thanksgiving.

Good luck,

Lani

Ya know, I'd forgotten what library paste tasted like until you mentioned it!

The burning mostly went away for me after a few months as the surface cells changed.

Margaret:

At 5 wks out its still early for being able to eat successfully. A few easy things that you could try would be canned peaches, creamy yogurt, cream soup, or pudding. Texture also plays a part in what is easy to eat at this point.

I know how frustrating it can be to eat and struggle. Use the magic mouthwash and keep trying. Another thing that worked for me was to drink yoo-hoo or chocolate milk when eating. It will soothe your mouth and takes away the burning.

http://www.amazon.com/Easy-Swallow-...mp;s=books&qid=1222224429&sr=8-1

See Brians posting not too long ago regarding 4% donation when ordering via OCF link
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=81008#Post81008

Margaret,
We are in the same boat.

Seem like everything stings my tongue, nothing tastes good for more than a bite.

I keep buying stuff only to find out after a bite that I can't eat it.

My PEG got infected and I am on antibiotics.

It is getting depressing

My husbands doctor gave him Reglan. It really helped him get digestion and appetite stimulated. He really started eating with yogurt and fruit. I was concerned because the fruit didnt have much calories but i found a fruit dip loaded with calories and he ate it all the time. Take your time it is a personal process and you need to do all you can.

Every day is different,
Cray

Don,

As Stephanie said so eloquently said to me, "You can do it!!!!! I have faith in you!! Hang in there!!!"

You're only 3 weeks out and you've got some healing left to do. Believe me, I understand exactly how you feel. I keep buying food and throwing it away. I exchanged messages with my Speech/Swallow therapist yesterday and she reminded me to just keep at it as best I can.

That really stinks about the infection. It should clear up in a couple of days though.

Try to stay focused on that day-to-day thing, Don. I know you're going to be alright.

- Margaret

Do you by any chance have thrush? When EVERYTHING including water burned my mouth, I had thrush. Changing brands of water helped as did the thrush meds.

Of course anything with any heat(spicy) in it will burn. I'm eleven years out and still cannot not tolerate anything spicy but I then I never could tolerate much heat. I laugh when I hear some of the spicy things others like Brian can eat.

As for the taste thing, Zinc is supposoed to help improve taste.
I took 220 mg Zinc Sulphate from about 6 weeks after rads until last year when I stopped all supplements and xtra vitamins due to a diarrhea problem. I'm pretty certain the zinc worked for me because most of my taste returned within a few months after the radiation. The rest took a few years. Give it a try.

Take care,
Eileen

Margaret- I drank a lot of stuff- and slowly slowly over this past year have remastered some of my old favorites. Find some soft mild foods that you liek and look forward to and then supplement with ensure and other energy sport drinks- that relaly helped me get enough nutrients and calories in so I felt strong and my tissues rebuilt a lot faster. I know its very frustrating and depressing at moments! Hang in there

I am just now 15 mos out of treatments. I have been learning to eat again for over a year now. I started out with broths, soups, canned peaches, etc. Gradually I have worked my way up to eating a regular meal. However, I have to take very small bites of meat with a few bites of moist vegetables at the same time in order for the meat to go down though. I still don't have much saliva, and I don't know if it will improve anymore than this so the things I still cannot eat are breads. For now hamburgers and hotdogs are out. I cannot eat pizza either. I really miss those things and I miss being able to be spontaneous about my eating. I still drink Ensure Plus to supplement my diet when I don't feel I've gotten enough throughout the day. Learning to eat again is a long process and is easier for some than it is for others...depending on their recovery process and any side effects of the treatments. Hang in there and keep trying new things. I've tried things that didn't work then tried them again a few months later and was able to eat them.

That no taste just burning after the 1st bite , should say swallow not bite, gets your mind wondering if you will ever really taste food again. I have tried anything I can tyhink of and ended up giving the food to the neighbors. LOL They say it tastes very good and will take anything I cook. I am slowly going back to the nothin but good soups, oatmeal. cream of wheat and coco cereal mixed with the cream of wheat. I can get some toast down in smal bites with coffee. Some day we will all be able to eat food. Keep trying.

Try dipping the dry bread in olive oil, like they do in the Italian restaurants.

Several years post-radiation, I'm still finding that I will get a burn reaction from seemingly innocuous foods, but spicy stuf DOESN'T burn more than it ever did.

Remember all I was 16 months post Tx when I had a big improvement in my saliva and taste and it really made a big difference in my outlook so please don't loose hope until you are at least 2 years post Tx. Even recently I have had some change in my saliva so it tells me that my body is still doing something in the post Tx era. Keep a positive lookout. May not cause anything to happen but it's way better than a constant negative lookout.

PeteD, I thank you for reminding me of that. I will do it today.Olive Oil it shall be.

Well, the last couple of days I've managed to do some superior eating! Yesterday: a poached egg, banana, French Onion soup, baked squash with butter and maple syrup, today: dinner at my sister's of avocado soup and spinach/feta quiche with a little morsel of apple pie for dessert. And yes, I could taste all of it, especially the maple syrup. Still eating very small portions, but my stomach is being much more cooperative.

The challenge continues to be my sore tongue and I'm starting to get a little bit alarmed about a spot on the right side that really stings, especially by the end of the day. I have an appointment with my wonderful Nurse Practitioner on Tuesday and I'll have him take a look and in the meantime, I'm going to stop imagining the worst. I mean, there's no way this little spot is a new tumor, right? Its just a really stubborn bit of mucositis, right??

Ugh.

Mrgaret,

You're doing great! And you just reminded me that I have a spinach quiche in the freezer, so I just went and put it out to defrost.

I had a scare about 10 days ago that turned out to be just that, a scare. I had a blister appear on my tongue that bled when it broke. I was terrified! I was on my way to Gainesville that day for a CT scan (chest, not mouth) so I walked in to Dr Bill's office totally unexpected. He checked it out and said it didn't look like cancer, it didn't feel like cancer, and he was sure it wasn't cancer. I gave him a huge hug and cried like a baby. He was right, of course. it has since healed.

Just thought you might like to hear about it. Certainly get it checked out, and I know you'll worry, but I hope this helps you to not be too scared.

Lani

The only thing I have had at a restaurant is a baked sweet potato and it was delicious. My daughter got me to order it and said she would eat it if I didn't like it. I'm gald she ordered a steak. LOL That potato was as good as a steak that day. I had the Frech onion soup too. Mighty tasty for sure all but the cheese in it. That I couldn't handle at all.

Jim,

I specifically asked for no cheese in the French Onion since I knew I wouldn't be able to handle it. I did have some roasted sweet potato wedges the other day and they tasted great, but hurt my tongue. This balancing act sure is exhausting!

Lani,

Thank you for sharing that with me. I'm a little bit on pins and needles until Tuesday, but I have a list of house projects to keep my mind occupied until then

- Margaret

LOL I aure know what you are saying.. You have about the same meals as I do. I love the poached eggs tho. I make them and put them over white soft bread and over just done pancakes with butter on them. I didn't know the onion soup had cheese in in or I would have declined it too. I was gagging on it before I could get it out of my mouth. LOL I wonder what the people thought that were at the tables near us.

When going out to eat, I have a few tips. If there isnt a soup that you can handle on the menu, ask for a kids menu. Alot of times there is mac and cheese on their menu. Sometimes you have to explain a bit more than "I have difficulty eating" to get a kids menu. Once the waitress hears that she usually is willing to help. I also sometimes just get a side dish of mashed potatoes or applesauce. I always also order chocolate milk. If something is unexpectadly spicier than I thought, it will soothe the burning tongue.

I ate off the kids menu for months on a take out basis because regular portions were just to big for my appetite.

Margaret,
It is great to hear you are eating so well.

That gives me hope that in a couple weeks I can get off this (bad word here) PEG tube.

Actually I think I am starting to see a very slight improvement (now beginning week four).

Margaret,Don,
I am one year out and still have a "hot" spot on my tongue but it keeps getting a little better all the time. I too thought something was wrong but I guess it just got burnt more during the rads. I still have dry mouth issues but that too seems to be getting better incrementally. I use a biotene oral gel at night and have been sleeping 5 to 6 hours before waking with my tongue stuck to the top of my mouth. Well actually that hasn't happened lately! Hang in there it does get better. I also had a PEG tube and it did get infected but it served it's purpose also. I could play cards and eat at the same time!
Good Luck,
Bruce

Bruce,
I am amazed that you got your tube out just three weeks after ending RT.

Here I am a month out with very little taste or appetite. Without the PEG I am sure I would be skin and bones!

Don,
During treatment I forced myself to eat something orally every day, most of the time is was just drinking �ensure� or something so that may have helped. I am back up to 164 lbs and am comfortable at that weight. Still have issues like dry mouth and food taste and it does get frustrating but I can deal with it and am living everyday to the fullest. Just got back tonight from hunting grouse with my youngest son in Northern WI. Wood heat in the cabin made the air very dry, but still loved it!
Going through the 7 weeks of chemo and rads and the week after were terrible but I think I healed quicker than others. I would like to believe that being in good shape when I was diagnosed had something to do with it but I just think this cancer crap affects different people in different ways.
Anyhow, hang in there and keep me updated on how you are doing.

David is right about patience. We all recover at different rates but have one thing in common: that rate feels too slow. Celebrate that you have so much taste back so soon. I was able to eat everything early on, but taste is still very sketchy after almost a year. Unless it has a lot of garlic or lemon or anchovies, it's pretty bland. And it was tiresome always being last to finish. Hang in there as it does get better.

I am new to this web site and not sure if I am doing this right. I had surgery for a tumor under the base of my tongue on the left side on 7/29/08. I have had radiation and Erbitux treatmeants which ended on 10/21/08. Biggest problem is the thick, ropey mucus which never seems to go away. I have tried Robitusin , but it didn't help. I can swallow very easily, but very difficult to eat. I only use the peg tube every now and then for the protein drinks. Any suggestions to combat the mucus is appreciated.
Bob
[email protected]

I didn't find anything that worked well for me but I will say it will usually resolve itself in a couple of weeks. I had to carry a small Styrofoam cup in my pocket and just spit in it all the time. Gross for sure but it worked for me.

My husband like you has had over half his tongue removed and is struggling with eating. He is 6 months post surgery. I would appreciate any food advise you have for us. He is eating mostly pureed food, wet scrambled eggs and now very overcooked mac and cheese. He is also extremely fatigued.

He is probably tired because he is not getting the proper calories and/or nutrition. In absence of the semi solid foods get him some Carnation Instant Breakfast VHC which has 560 calories in a small 8oz can.

For the mucus I took Robitussin to thin it out and eventually it does go away as you heal from the radiation, it can take a few weeks. I seem to remember just waking up one day and realizing I didn't wake up to cough the stuff up one night. It just kind of quits all of a sudden but it does take some time. Instead of tissues or paper towels I coughed the stuff up into soft washcloths and just washed those.

As far as swallowing, I always had more trouble with the pudding consistency stuff because I had to use my tongue too much to move it around and it stuck to every part of my mouth. I did much better with slightly more solid food. Baked fish is also really easy to eat.

it was strange how the mucous thing just stopped . I used to fill bowls of it just to see how much was coming out. Then poof it was gone and then dry mouth showed up. A welcome change i do remember.

I wish this mucous and dry mouth combo would leave this mouth and go hide somewhere. I had my surgery on Aug 2007 and it's still very bad. The mucous is so thick that I have to reach into my mouth and almost bulldoze it off.But then, I guess I am different. LOL wierd too.

Weird is good!