Hi, My name is Shari. I was diagnosed with stage 3 squameous cell carcinoma on Feb 21st. I had surgery on March 3 and had 1/4 of my tongue removed and 36 lympnods in my neck 6 of the nods were positive.

I completed 33 daily treatments of radiation on May 19th. I can swallow water- it actually tastes kinda good, as does grape gatorade. A mint tums in the water, makes it taste great.

I am relying 95% on my peg tube using 5 cans of Probalance, but am anxious to try and find pureed foods and liquids which have some taste besides sour metal.. Anyone out their have tips?

Thanks for listening,
Shari web page ew.sw@gte.net

Hi Shari

First, welcome to the forum, I'm sure you'll find a lot of help and support here. We've grown into a fairly tight knit community.

My situation is similar to yours, about 1/4 of tongue removed, neck dissection, radiation to tongue and neck. However I didn't have a peg tube and had to keep eating orally during the whole process, not very easy the last week or so of rad. I'm assuming at this point you are trying to wean yourself off the PEG and get back to eating orally.

Know what you are going through, to me food tasted like sawdust, just different flavors of sawdust.

I'm guessing you are still on liquids, or at most soft foods. At this stage I was on things like different soups such as clam chowder, mushroom, french onion, noodles and congee. You want soupls with cream base for the calories. The thing is your sense of taste will be skewed somewhat and things won't taste the same as they did before, not for a few months probably. Anything sweet will taste wierd, so forget about chocolate sundaes unless you don't mind the taste change.

Generally at this point try experimenting. Foods are going to taste different no matter what, so if you can cope with the actual chewing/swallowing/physical getting the food down, try some new things you may not have liked before, different cuisines, etc. Just stay away from spicy foods, they'll burn like heck, and possibly inflame already tender tissue.

There are some folks with some great hi calorie shake recipies for the peg tube, since I didn't have a peg I can't help there. May want to do a search of past posts, or some other folks can offer up their favorites.

Hope it helps
Bob

Shari,

Welcome to OCF. Like you and Bob, I had tongue/neck surgery followed by radiation. I didn't have a tube at any point, so I was just trying to cram in as much soft and/or liquid food as I could to keep a decent level of nutrition. Most of it tasted terrible for several months after radiation, but I tried sort of a mind-over-matter approach -- if something smelled good and I knew it was supposed to taste good, I shoveled it in and hoped I could ignore the metallic taste.

Things that worked included creamy soups (warm, not hot), ice cream, pudding, baby food (yes, I went back to strained peas and carrots), various fruits and vegetables pureed in the blender, pasta, and oatmeal. Elsewhere on this site, in the Products section, is information about a cookbook, "Easy to Swallow, Easy to Chew". I bought a copy of this for someone I know who is going through head/neck radiation -- it has a lot of suggestions about recipes to try at this stage if you're looking for some variety.

As Bob said, experimenting with different foods is probably a good idea, because some of them may taste surprisingly good, or at least OK, as your taste buds start to come back.

I wish you the best for your recovery.

Cathy

Faithful1: First of all, welcome to the site. Sorry you have a need to be here, but you will find it is very helpful as long as you are in a situation where you need it. Eating is difficult at this stage of your treatment. I still have trouble and I am a ways away from my radiation. In fact, I still have my peg and am in the process of getting it out, but adding nutrition through the peg can help. I used to add instant breakfast to ensure to increase the calories and took prune juice for bulk and anything else I could get into liquid form. At the same time, I did all I could to eat anything I could to help keep the throat open and viable as well as to stop any degradation of function which my doctors had advised could occur if I didn't use it as much as possible. The other problem with the peg is while you may get calories, you don't get as much protein so you may have some muscle loss. I have and that's something to avoid, if possible, by eating proteins orally. At any rate, welcome and hang in there.

Hi Shari!

Welcome to the site. You are just up the street from me (Federal Way) Did you have your surgery at the UW? Being from the northwest I got my extra calories from Starbucks berry cream frappachinos! Okay, not quite so heathly as vegtable juice but they can sure coat a sore throat! I had my peg for 6 months and one problem you might run up against from not eating chuncky food is your mouth doesn' stretch open as wide as it used to. Spend some time opening and working the mouth muscles (pretend you are eating a large subway sandwich). That way when you do get past the cream soup level you can eat the bread!! Hang in there, it does get better! - Kris

Hi Shari,

I too surivived this without a PEG. About a month after radiation, I was put on a high protein diet, 80 gms a day, + ZINC and a bunch of vitamin supplements to improve healing. I got my 80 gms by still drinking a few cans of Ensure and drinking fortified milk with meals because I was not able to eat that much protein. I was mssing my back teeth so chewing was also a problem. Everything had to be cut into tiny pieces.

This time of year, cold soups should be good, like vichysoisse or cream of cucumber. First meats I could eat were rare steak or lamb chops with lots of mint jelly. Peas, zucchini, string beans, tomatoes, red leaf lettuce with blue cheese dressing. Corn on the cob and lobster were also good. Forget potatoes or bread - too dry. Look for meals with lots of sauce or gravy, veggies with lots of water. Scrambled eggs or cream of wheat with honey and butter were good for breakfast. Pork tasted awful for months and needs lots of applesauce, but then every one is different. Keep experimenting and you'll make it. Think I drank stale ginger ale and apple juice for a while.

I also just read on this board that you should use plastic utensils if you get a metallic taste. Never tried it, but it makes sense. You also might try keeping a journal so you know what tastes good and bad when and why. I wish I had.

Take care,
Eileen

Hi Shari, welcome aboard... congrats on being done with your rad treatments. You'll notice dramatic improvements over the next few weeks. Hang in there... It does get better!

I also survived radiation without a PEG, though it was very tough near the end. My wife made me these GREAT smoothies during the toughest times. She'd put in weight-gain formula, peaches, yogurt (sometimes), soy milk (yum!), maybe even some Ensure. I can't remember what else. But it felt OK going down and was packed with calories and nuitrition. I tried to avoid anything with citric acid or carbonation as that would burn!

I remember reading about someone on here who had tempura shrimp two weeks after her last treatment. So I set that as my goal -- to eat something like that two weeks after I was done. I got close, going out to Red Lobster about four weeks after my final treatment and getting down some Shrimp Scampi, deviled crab, flounder, etc. Yes, it tasted weird, but it tasted somewhat normal so I was pleased...

Again, welcome to the forum. Ask away if you have any other questions...

Hi Shari and welcome!

I did not have surgery, only radiation/chemo. My tube was a buggar and I only used it for liquid meds when my mouth and throat burned really bad. My doctor wouldn't let me go back to work without eating regular food as I was on TPN (IV) feeding the for about 3-4 weeks towards the end of radiation. I was eating fried catfish 2 weeks after radiation so I know it can be done at least in my specific instance. My oncology nurse told me many patients mentioned lime squeezed on metallic tasting meat helped the metallic taste go away. I tried it and in my case it worked great. I drank Dr Pepper for 2 months starting at the end of radiation but I worried about all that sugar (at 11-12 cans per day) so I stopped the middle of December. I have been eating Subway sandwiches since 4 weeks out and with plenty of water, I can eat anything. I was drinking lots of Boost Plus (extra fat) and Boost Hi Protein. I still drink the Hi Protein for all the protein and vitamins in it, if I see it on sale.

The cookbook mentioned above is really good. You can email the author and she sends it out immediately, expecting payment after receipt of the book. I hope all this helps.

I just hit 8 months post treatment this week and pretty much eat anything (and everything) around.


Ed