I would like to hear from people that do not have their salava glands and how they deal with it. I lost mine by Aug 2002 and have lost 135lbs and keep loosing. I;m having so much trouble with it!

Welcome, Claudia!

I am one of the few here who can still spit, so I cannot personally answer your question. However,I am very concerned about your continuing weight loss. I would strongly suggest that you see a nutritionist who can help you set up an eating plan that you can live with. If you read through the posts here, you will see how people eat wet things, using gravies and sauces to help swallow. When I was using a PEG, I mixed up lots of things in a blender, which should also work for you as they were very liquid. I added protein powder to my "shakes." I do hope you consult someone about your weight loss, as that can lead to problems you do not want to deal with! Let us know how you do.
Joanna

Hi Claudia,
I too lost a lot of weight during treatment -over 60 lbs. But it was mainly due to the treatment rather than the dry mouth. Like Joanna, I am supposed to have a partial recovery because of the IMRT radiation I had. It hasn't really happened yet however, so I still carry a bottle of water everywhere and avoid dry things like chips, crackers, etc. I drink a lot of liquids when eating and have to get up sometimes twice in the middle of the night to pee (LOL)! But I have gained 9 lbs. and Joanna is absolutely right that you need to see a nutritionist and possibly a doctor also to get things checked out. After a year, you should have put some weight back on. Certain foods are much more dry mouth friendly than others such as pasta's, red meat (not well done), soups, stews, etc. I also had to experiment with swallowing techniques.

Hi Claudia, I agree that weight loss should be your first concern now rather than the saliva glands. Dealing with a very dry mouth can be frustrating but it should not deter you from taking nutritious food to maintain your weight. A lot have been discussed on this forum about various kinds of food that can go down more easily without saliva. You should consult your doctor to find out reasons for continuously losing so much weight. The protein powder is a must now to add more nutrient in your food.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Claudia,

Sorry to post so late but just getting back. I too lost a lot of weight however not as much as you, only 50pounds. I went 7 months after radiation without eating or drinking anything, my tongue and throat were so swollen I couldn't even drink water. Thank goodness for the PEG tube. I took Ensure Plus, 300calorie, 9 cans a day and was able to put weight back on. I was also able to keep hydrated through the tube just extra water a day even smashed pills, dissolved them in water and took trough tube.

I can now eat a little but it takes a long time. I still use the tube to supplement nourishment.

It gets better just hang on.

Hi Claudia, I haven't had spit for over a year now. I carry a bottle on a waist belt and take sips all day long, often holding the water in my mouth for long periods. Sometimes my hands are dirty, so I can't grab the bottle. My cheeks will stick to my gums, and my tongue to the roof of my mouth, which makes it hard to talk. It really sucks, but I just deal with it.
When I eat, I drink just enough to get the food down. Some foods go down easier than others, so I look for those (steamed veggies go down real easy for example).
The drugs Salagen and Evoxac don't seem to help me much, but may work for you.
O-O