Danny, you had been very lucky to find this forum soon after treatment. I didn't and the severe depression invaded gradually three months post treatment.I was overjoyed when completing the last dose of radiation and then was expecting a gradual recovery. People around me kept on saying the same words at my ears that you looked very normal, the mouth sores would disappear very soon and dry mouth was not a problem because they also felt their mouth dry at times, they also had mouth ulcers... They tried to put themselves in my position but it's useless because they could never feel the way I felt. They never understood how one felt when the saliva glands were destroyed.Anyway my depression is over for the time being and it is really very very important to have support from people who have gone through similar ordeal as we have. Raymond, best of luck to you.

Karen, stage 4 tonsil cancer diagnosed in 9/01 with concurrent radiation and cisplatin.

All Done,
Yup 1 week post treatment, longest time of my life. and the node in my neck is shrinking it has gone down to approx half it's size and all the burns on my neck are healing very nicely can't open my jaw to wide or eat drink anything. Still a lot of pain. I have a few of those sores people are talking about on the side of my cheeks and tongue from radiation what is it best thing to do for these Because this is my main source of pain and if someone could let me know what was the best thing to use to dry up the mucositis its like a tap in my mouth.
Thanks everyone

Ray

Ray,
I don't know much about mouth sores, but I am very familiar with the mucositis. There is nothing that you can do about it except wait...in time it goes away. One of my docs ordered me a Yankauer suction machine that works like the suction device at your dentist. I kept it by my easy chair by day and at bedside at night. Anytime I left the house I carried a plastic bag with a box of tissue in it. The mucous often caused me to wake up at night..I would switch on the machine,use it, turn it off and go back to sleep.
Now, 5 months or so after radiation treatment ended, I am returning the machine. I can make it through a whole night with maybe one or two tissues.
Unfortunately about the time that the mucous subsides, the dry mouth becomes a problem and that wakes you up at night! But as you might have read here there are strategies for dealing with that problem too.
One step at a time...keep up the good attitude.

Danny G.

Hi Raymond, Danny G is right that there is nothing you can do with the mucus.I consumed a lot of tissues even a month post treatment. My husband thought that I was a tissue eater (grin).I needed to spit a lot and I didn't feel a significant dry mouth. When the mucus gradually disappeared, the dry mouth became dominating. Mouth sore would get better slowly but it is still with me now. Pain medicine helps to make you feel better and in my case, I stopped using it about one and a half months post treatment and have never used it again for the same reason.

Karen, stage 4 tonsil cancer diagnosed in 9/01

Raymond, perhaps my stragegy to deal with the wallpaper paste mucous I had will help you. First of all, it seemed to run almost continuously for exactly 21 days, at which point it just stopped, then reappeared at ever increasing intervals over the next week, then stopped for good. Two things I learned: 1. Puffs brand tissues are the strongest and the very best for wiping out your mouth. I used so many I wish I had bought stock in the company. 2. To sleep while this stuff was pumping out of my mouth, I bought rolls of gauze and made loose rolls, which I stuck in the "gutters" of my mouth. This would soak up enough of that stuff to enable me to get a couple or three hours of sleep, in a semi reclining position. This is also how I went out in public. I had some truly nasty neck burns, but the drugs took care of the pain related to those, so this mucous was seriously the worst part of the entire treatment. I want you to know that it definitely will stop. Just not as soon as we all wished. Hang in there!
Joanna
P.S. One last caution. Your mucous is water based, so make sure you take in extra fluids when you are putting out so much.

Hi Raymond congratulations on your progress and ned of treatment. I an right behind you with 14 rad treatment to go. They decided to shorten the cisplatin to 2 because the tumor responded so well. The second cisolatin was very hard. I had it on the 18th and have had delayed vomiting ever since. I eliminated tongue and mouth sores by insisting on a teeth protector - it worked and my tongue and mouth sore are already healed up.

Hello again to everyone
I am now three weeks past my last radiation treatment I still cant swollow or eat anything much I mmanage to get a couple of mouthfulls of water in but thats about it. I was wondering how long it tool most of you to start eating again and what did you eat or drink at the end of all the treatments. any tips on what to try will help alot. I am getting very fustrated that I cannot drink or eat. I still have a lot of white mucus and some welting on the soft pallet throat and tounge this is what is causing most of my discomfort. I also seen the radioligest and it sounded like he was planting the seed for a operation he said that the node in my neck has shrunk to less than 25% of it's originiol size but it's not as small as he would like it said it has to be gone and we will wait a few weeks more and decide on the surgery. anyway if any one could tell me what they started to drink or eat after radiation to give to give me more energey it would be great Thanks for all your replys
Ray

My radiation was completed at the end of Nov 2002 and I had a medical food called "FiberSource HN" which was the liquid they fed me when I was in hospital during the surgery. The difference was that in hospital I was fed throught nose tube, at home I just drink it. My Radiation doctor said it was the best nutrition I could get.

I started to eat normal food in late Jan, but I had hyperbaric oxygen treatment which expedited the healing of radiation wound, so it is a different story.

Raymond,
You have to be patient. I finished radiation treatments around Sep 6th and have only been eating for about a month, since I had my esophagus stretched. It is different for everybody, but it was close to 5 months before my throat was not too sore to attempt to swallow anything but pureed noodle soup.
Now that my throat is much more healed ( and my esophagus has been stretched twice...which is not necessary for most people ). I can eat fish, Rice Krispies, cheesecake, spaghettiO's, baked sweet potatoes, thicker soups, and other soft stuff.
However eating is still not easy and I can only eat small portions. I had a new PEG put in yesterday and I still use it as well as eat a few things and drink a lot of Ensure Plus.
Best of Luck,
Danny G.

Danny...I like your list of new foods! Sounds like you are doing great. You are only a few months away from the really great eats... But it is good to see that you are not PEG dependent anymore.