On 5/9/2008 Brett37 wrote:
My name is Brett i have cancer or had in my tongue and lymph nodes and during treatments i lost my salivary glands i would love to speak with someone on how to handle this or things you can do to help this or ways to make dealing easier.
Brett-I am almost 13 mos out of TX, SCC, Stage IV, unknown primary. I have lost all salivary gland function. I have read so many opinions on this, and apparently there is still hope. Meanwhile, it is a big issue. I literally drink water from the moment I get up to going back to bed again. Because of my (lack of) taste issue, it never tastes good, either. The only other thing I can tolerate is ice tea; and funny enough-iced cappucino, sometimes.
It's worse when I talk-(I sell ins, so HAVE to talk all day long) When I'm quietly watching TV or reading and keep my mouth shut, I can go longer periods. I have tried dry mouth sprays (ick) and mouthwash-that's good for a temporary fix. I always have sour, bitter taste in my mouth-to the back of my tongue. I brush my teeth alot to try to alleviate it.
I drink constantly when I'm eating; and have a short list of foods that work for both the saliva and taste. I consider it, a long with the taste problem and my loss of hearing due to cisplatin, to be the greatest lasting side effects of the cancer ordeal. Maybe someday they'll be doing salivary gland transplants(!!) but until then you hope for the best (and drink and pee). Good luck to you! Gayle