Hi,

My boyfriend is 5 month after treatment and gets dry days and sahara days like you. His tongue then becomes brown, so he brushes it. So he gets bad days and very very bad days. He sips a lot of water when he eats and chips and a burger (which he has been craving) are out of the question for the time being.
His GP has prescribed him a saliva spray which is a short temporay relief. It's called Glandosane. It's not a miracle spray but it helps a little. He drank so much water last week because he was so dry, that he was sick water. So now he alternates when he is up and gets dry, a sip of water, a spray, a sip of water... Dig texas says the water bottle is part of his arm, Martin's bottle live in my handbag (oh and it's my fault if he forgets although now I don't forget) I am used to carrying a heavier handbag.
What also seemed to help a little with the mucus was a nebulizer. He used to nebulize 3 times a day with some saline solution and did feel a bit better after the session, unfortunately the nebulizer was on lone ans we had to give it back.
As for the swallowing Martin has a "slow triple gulp" especially with water, a mouthful of water takes three attempts to go down, but that doesn't seem to bother him too much now.
Otherwise, reading everyone else's email makes me hopeful that it might just get better.
Keep positive, it seems everyone heals at completely different speeds.
C

Has anyone noticed if they get Sahara mouth more when they move about or are active? If martin does anyrhing that involves a little effort his mouth goes instantly dry. Today we drilled some hole and screwed some things to the ceiling and he asked my to touch his tongue and it felt like I was touching dry sandpaper. The consultant says he never heard that. Do you get this?

Sometimes when we perform some activity, we breathe harder, esp through the mouth, which will dry it out in a hurry and we are distracted and forget to sip, which will keep it that way -- Happens to me a lot -- Consultant apparently has a lot to learn about all this...

Seems to be the entire United Kingdom needs Liz to educate them again.

Thanks. That makes sense. he has learnt to sleep with his mouth closed but I supposed he'll need to remember to sip more, when he does something.

Its like painting the Forth Road Bridge David,just when you think you have finished you have to go back to the beginning and start again.!!!!!!!!!

Cray,

How much of a difference in swallowing did the evoxac make. Were the side effects real noticable?
Thanks,

Mike
age 53 TxN2bM0 stage IV tongue and 2 nodes, non smoker, non-drinker, heavy plastic wrap exposure 25+ years, 2 surgeries, neck dissection, 60 GY IMRT, cisplatin X5

My husband has had very good success with Evoxac, no noticable side effects.

I had to have the nerve cut that controls swallowing and learning how to eat again was a very troublesome task. Keep doing what you therapist tells you to do and you will start noticing improvements. I still have a hard time swallowing but its better than being on that dam peg tube.

Charlie

If it was just a salvia issue, then swigs of water would ameliorate it. 5 months is way too early to "despair". Heck, I've been done surgery for nine months and can't eat and still rely 100% on a PEG tube. If you have not yet had a modified barium swallow test, you should get one. They are the gold standard for identifying what the swallowing difficulty really is as they show the entire process (or lack of it in my case - I have failed four MBS so far)
So get an MBS and keep up with the swallowing exercises. I know just how you feel and it's very understandable and all too real. Still the majority of head and neck cancer patients do regain swallowing and eating. The figure I saw on the OCF pdf is that only 10% need to have a PEG indefinitely. So the odds are with you.
charm