It's 3 months since my treatment and I have a PEG. The best I can do is to drink a little water and sometimes soy milk. I have raw patches on my tongue that appear to have the top layer of skin missing and are extremely sore. I keep waiting for these to heal. Should I keep waitng? or should I force myself to try and eat? Has anyone had this experience? Also how much do you start on per day? eg three teaspoons of soft food three times a day? Any advice will be much appreciated. Frances

Frances: Don't force yourself, Use your PEG. There are a plethera of over the counter and prescription concoctions that will give you temporary relief. Your mouth will heal in time.
Darrell

Hi Frances,

Since you are in Aus, ask your doctor about using Difflam -- benzydamine Hcl -- mouth rinse which is available over-the-counter (no prescription). It has been found in clinical trials to be the most effective treatment for radiation-induced mucositis; it is approved in 36 countries but not USA, yet. (Our dental onc participated in one of these trials and is hoping this will be available here soon). Difflam is a topical treatment (mouthwash) -- you do not ingest it.

However, you should not take or use non-prescription meds or supplements without checking with your doctor beforehand.

Another thing which you could use -- a simple salt-and-soda rinse which helps heal tissue and sooth sore areas.

Also, make sure you do not have a secondary infection -- which could be yeast ("thrush"), bacterial or even viral (herpes) which is slowing healing.

Try to continue to swallow something, even if only sips of water, to maintain the muscular ability to swallow. You might try to make thin liquid "smoothies" with soy milk and a mild fruit juice (such as mango) and sip some of these. Some people have had success by gargling with a numbing solution before eating, or using a coating agent (one is USA is called Gel-Clair, not sure what Australian equivalent would be) to reduce pain.

Gail

Thank you, Darrell and Gail. Yes I have been checked for infection and I do have a Staph infection that I'm treating, but I don't think that's anything to do with the raw patches. My concern with Difflam is that it has a high alcohol content which stings like crazy when you use it. I also believe my cancer was stimulated by overuse of Listerine - high alcohol content - alcohol being correlated with oral cancer.

When you do start to eat - how did you go about it? eg a few teaspoons of soft food per day and build it up? - do you just get used to it - and then it seems easy and normal after a while?
Frances

I started with simle things that wouldnt choke me like shakes and ice cream. The coldness helped and also had alot of calories plus with the tube feedings. A few times a week I would try dabs of other kinds of food like pasta in very small pieces, or slick foods that would go past the throat area fairly easily. Hamberger was hard becuase it would hang up.Saucy foods seem to be best. Pudding was also a treat. I am a year out almost to the day and thought i would never be able to eat again. Tastes are diffrent for me now, I used to hate rice and mushrooms and now i cant get enough. Be very careful of spicy foods....OUCH. good luck and be patient, easy for some to say I know, but it will come around. It might not be the same as before but adjustments can and will be made and life will begin to get back on track.

Canned sliced peaches in syrup.......Jeeze I must have eaten 50 gallons of them in the begining. Cool from the fridge, not too tart or spicy, slippery as hell, and available in 5 gallon cans at Costco..... I ate them day and night as I slowly weened in scrambled eggs, (very wet) and other food stufs until today when I am almost back to normal. But it didn't happen over night, and requires diligence in trying new things ( always wet, always washed down with lots fo water) until the list started to lengthen. I can hardly look at a canned peach today!!!

Because the first taste to return was salt, I ate massive amounts of chicken noodle soup. The noodles slid down nicely. Cannot even look at that stuff today, but Campbells stock probably went up for the month I was eating so much. Not advisable if you need to watch your sodium intake.

I'm over a year out of surgery and treatments. I still have to eat soft foods. Oatmeal, mashed potatoes with extra gravy. I take chunky soup and put it throught the old food processor. Got to take the lumps out of it. I also make noodle side dishes, like alfredo or parmesan and run them through the food processor. Any pasta dish also goes in the processor. Milk shakes are a real treat. Pudding is a daily treat. I used to drink boost or ensure all the time. I've given them up and still managed to gain about 20 pounds in a years time. Like anything else in your life, you learn to adapt.

John

Joanna'idea of chicken noodle soup (2 minute variety) was my favourite meal. Mary cut up bits of real chicken as well. We get Fortisip (liquid meals in iced coffee cartons) here (free from the hospital) in NZ.

Difflam comes in lozenges as well as liquid. Bodybuilder's glutamate as a mouthwash was a winner for me. I lost 7 kgs and haven't got it back, perfect. Lance lost 13 and won le Tour!

I did a ten day residential course in Melbourne with the Gawler people. Fantastic. Recommend you check it out.

Now hold on to your seats...my favorite for many weeks was spaghetti and with Ragu sauce. I started eating when my blood sugar spiked over 300 from my Dr. Pepper diet. The spaghetti seemed to suit me well and potatoes made my tongue and throat burn as did everything cold.

Be sure and check out the possibility of thrush with your doctor. You should not have patches of raw stuff on your tongue. The antibiotics to treat your staph infection would cause the thrush to flourish. Easily treatable but often overlooked until you ask.

Good luck on a speedy recovery.

Ed