Hi - I am new to the forum. I was diagnosed in March with oral cancer, had surgery 3/31 and am now into my 3rd week of radiation. Up until last week I was able to eat very small pieces of solid foods but then had difficulty swallowing. While the numbing rinse helps me a little, my mouth won't open much now, even using the dynasplint - of course textures and taste are horrible - a lot of things burn my lips and inside the mouth...does anyone have any good ideas for mostly smooth liquid things I could try? I have tried cream soups but they burn and taste gritty....I want to get through without a PEG....am starting Amifostine shots with today's treatment...any experience with these (given in my stomach?)

thanks so much for anyone's ideas and support...

Patty,

We all had eating issues to deal with caused by the radiation but here's what I found that really helped me during and post Tx.

Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You order it thru your pharmacy dept and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only pay about $32.00 per 24 can case at Walgreens. That's only $5.00 a day for 2000 calories. Click on this link:

http://www.nestle-nutrition.com/family.aspx?objectID=86E49EB3-BE25-4B16-81D7-235E6F6E5183

Under the PURCHASE PRODUCTS tab, select FIND A PHARMACY NEAR YOU.

Under the PRODUCT NAME pull down, select Carnation Instant Breakfast Lactose Free VHC and fill in your zip code and they will give you a list of pharmacies that carries it.

I posted this over a year ago for the first time so I hope everything is still applicable.

I drank the VHC for over a year post TX because I found it helpful in getting calories in my body when I had no interest in eating stuff that didn't taste the same.

Patty

I had to give up solid food after the first week of radiation While at the very end of treatment, I added one VHC a day, I found it too "gritty" to tolerate more. Instead I survived on just Ensure PLUS - the Vanilla flavor. It has more calories than regular ensure. I tried them all: Boost, CVS Liquid nutrition plus, Ensure Prosure, regular Ensure & 5 different health shakes from Whole Fields & Wegmans. (actually still have some cans left of those). My electrolytes, my weekly blood work (CBC and Basic Metabolic Panel were all normal the entire three months of radiation and Erbitux so I got through without a PEG I supplemented the Ensure with mostly canned Seltzer water (generic Safeway) which cleared out the mucous enough to swallow the Ensure. I got up to 15 cans of seltzer water a day so I never needed hydration (but lots of bathroom breaks day and night) Post treatment, I kept with the Ensure for a month and switched to regular bottled water (only Deer Park did not taste metallic). Then soups and soft food. Hang in there. It is a tough journey but not that much different a mind set than when I ran marathons. Pace yourself, focus on the finish line, take it one step at a time. Of course, Easier said than done. Good luck.
tom

Patty, Have you tried yogurt?

Be careful if you are using the VHC that you also get a lot of water down each time you have one, otherwise it can dehydrate you (which is already a risk if you're going through treatment without a PEG).

If you do a search on amifostine and on "ethyol" (the generic name for amifostine) you will find lots of experiences (good and bad) with it.

Hang in there--and keep coming here for information or just to vent.

Nelie

Yogurt was one of my staples when I was just learning to eat again. I think the brand is LaYogurt, they make a smooth banana flavored kind which was the easiest for me to eat. Another item you may want to try is canned peaches, sliced up very small they slide right down fairly easily.

I hope you are able to eat these things. Carnation VHC, Ensure or Boost should be a staple for you. Its awfully rough trying to get thru this without a peg tube. Please watch your weight and if you cant get 3000 calories a day and at least 64 oz. of fluids then you may change your mind about the peg. Without proper nutrition, your body cant heal. It takes alot of extra calories to mend your body.

Feel free to ask any questions you may have. There are so many wonderful people on here who are more than happy to help you with insight, compassion and advice.

Best of luck.

Get a good blender and Blend Blend Blend. I have put 10 lbs back on out of the 70 I lost and contribute it to blending just about anything. Even tried chili 2 nights ago . It worked like n=most blended food do. I wish more than the 1st bit of it had taste tho. LOL I could chew cardboard and get the same flavor.

Patty,
in addition to yogurt and ensure/carnation ice cream shakes etc you might also try soft cooked elbow pasta, make it slippery with cream or butter. It will get worse (usually) before it gets better.... Watch that your weight does not drop precipitously!

M

Patty,
During the course of my treatment I drank two Skandi shakes (vanilla flavored)per day. This is a blended product. I added whole milk, some yogurt and a scoop of whey protein, plugged my nose and drank one in the morning and one at night. For lunch I drank a vanilla ensure, again, with nose plugged. I found put anything in my mouth somewhat nauseating and had to hold my nose even to drink water.

The good news, this too shall pass. I am back to eating soups and trying a wide variety of foods only one month after radiation. Hang in there. You'll get through it!

My dad is diabetic and just started eating and drinking.But most of the food goes in thru peg.
but during he also faced similar problem as you did.
for diet to meet ur daily requirement...
1.Ensure
2.Nestle Carnation
3.Nestle Resource
4.Nourish.

All the above are available in different flavors so try them and see what you like.

But most importantly get a dietitian who knows ur history.like diabetic, allergies..
And its best to get detailed diet chart from dietition.

Here's the list I compiled at the beginning of my treatment. Some I liked; some I didn't. Seems like I ate a bite or two of solid food throughout the day (no peg). I was more concerned with trying to stay hydrated especially when even water tasted bad.

Gatorade
Non-acidic juices (white grape, pear, apricot, apple)
Tofu
Dole Fruit bars; Italian ice
Stuff for milkshakes (e.g., low sugar vanilla ice cream)
Pancakes
Matso ball soup
Turkey or chicken pot pie soups
Campbells double noodle chicken soup
Tapioca pudding
Grilled cheese sandwiches
Frappachinos (I had a Starbucks Vanilla every morning)
Cottage cheese
Mashed potatoes (sweet and regular)
Dark chicken meat
Scrambled eggs (this was a frequent meal)
Soft � high protein stuff
Applesauce