This dry mouth thing is awful! I have to get up 2-3 times at night to unglue with water & during the day it isn't as bad but still bothers me. Bitch, bitch, bitch! My buddy says he's glad I'm still around to bitch about it! There's that perspective thing, half full or half empty. I'm a month out from radiation & wonder others experience with saliva coming back. It's a beautiful day here in western Washington & I'm going in the pool today with the kids, "YAY!" peg removed 6/21. Life has to go on , doesn't it?

Hey Erik,
Hang in there sweetie...life does get better. For my hubby, Dan, it didn't get better right away. He is now 3.5 months post radiation and things are much better this last month. He does have dry mouth and taste buds are almost nothing except for the first bite or two (which might just be from the smell), but he does eat many more things now than a month ago. He has only had his PEG out for about 3 weeks, so you are doing really well!

Take care and God bless,
Debbie

Erik,

I also have worse dry mouth problems at night. It can be hard to get used to when you've spent your life taking salivary function for granted. I guess reactions can vary from one person to another, but back when I had radiation it seemed there wasn't much they could do to preserve the salivary glands.

Still, between Salagen, Biotene, water, and sugarless gum I've gotten to the point where it seems pretty manageable (and in a lot of ways the glass has become more than half full).

Hope it gets better for you soon.

Cathy

Erik,
Yes, it is unpleasant. I sleep sitting up, three pillows behind my back, because of the phlegm, and wake up every 2-3 hours with my tongue glued up to the roof of my mouth. At 2 weeks post radiation the phlegm is a bigger problem for me - make sit impossible to be around polite society when you have to spit and gag constantly.
I hope to hear that it will get better - but all i have heard from doctors is that it varies, depends on the person etc., the same answer they give to most of my questions.
I hope it gets better for youvery soon, and I will follow two weeks behind you!
Leena

Erik,

I maintained most of my salivary function after radidation. (until recently) I had IMRT at MD Anderson. I think that it does depend on surgery reports and the location of the irradiated fields. I found that the Biotene products are all very good. The oral content takes a bit of getting used to at first but helps the tongue or flap geting stuck to the to areas of the oral cavity. Another thing I did for a few weeks was take Stopper 4 and keep it by the bedside table When I would wake up to suction I would spray my mouth with that. Minty fresh!!! I likened my mouth right after radiation when you have all that brown stuff pooling up in the back of your throat, to feeling like a camel had flown by and taken a dump in my mouth. Things seems be rocking along and all the sudden I have dry mouth. What gives here. Just when you get used to your new normal, you have to get used to a new new normal.

Lynn

Erik

I was taking Salagen and tried Evoxac and recently stopped taking everything. I don't notice any difference...the mouth is dry. It gets really bad with the post nasal drip from allergies. I try Robitussin from time to time and the thickness gets better but the mouth is just dry. I buy bottled water by the case whenever it is on sale and drink one 16 oz bottle per hour, a sip at a time. I keep a couple of cases in the car and pack some with me wherever I go. I sip some every 5-10 minutes and nothing works better than that for me.

May the camel pass you by!

Ed

Hello Erik,

I as lucky to maintain almost all my salvia function. I do drink alot of whole milk with carnation instant breakfast mixed in.

You just can't beat a nice cool bottle of water compared to soda or juice.

Hang in there Erik I remember reading some of the older posts about your saliva returning to some degree. I hope this is true in your case.

Best Wishes, Dan

Hi Erik,
Everything else has been covered but one. Are you a nightime "mouth" breather. That will DEFINITELY exacerbate the dry mouth problem. I still use a humidifier dialed in to about 60% and that also helps (along with the constant bottle of water). I have found also that eating salty food dramatically changes the dry mouth picture at night. This is so even though I had IMRT and have regained a fair amount of salivary function back.

I remember vividly those days of waking up with my tongue stuck to the roof of my mouth and I really hated it.

I've been fortunate with the dry mouth. I didn't have IMRT but they were able to save some salivary glands. Biotene helps more then anything I have tried.
Take care

I didn't have IMRT and am not sure if I have any saliva back. But I am grateful that my situation is not so bad as imagined since I need not wake up during the night in search of water. I need not get a humidifier at my room. I have to take a bottle of water with me when I am out but I only drink occasionally and when I am back home, the bottle is usually half full. But I do rely on sugar free candies and chewing gum. They help me a lot especially when I need to talk.So be patient, it is a matter of adjustment and acceptance.

Karen.