Lep,

Have you not seen any improvement in your saliva since end of Tx? My dry mouth was pretty bad for a good year post Tx and it was 16 months post Tx before I was satisfied with my saliva recovery though still not close to 100%.

I remember that period of dry mouth (now about 2 years since rad - entire mouth) - drs said you will improve - they now say probably (sounds like its likely) permanent. Biotene toothpaste, mouthwash and their Oral Balance help me. what area was your radiation? my surgeries were really easy compared to rad. effects.

I had rad/chemotherapy 2 years ago and have had a dry mouth ever since. I found that as a snorer my mouth stayed open during sleep which caused my mouth to dry out and wake me every couple of hours. Biotene gel helped but wasn't a complete answer. I eventualy bought a chin strap which kept my mouth more or less closed during the night. It was transforming (but not very sexy). Now I wake up in the morning and because I haven't been chewing the inside of my mouth because it was so dry, my mouth is in much better condition, I get to sleep most of the night, my use of Biotene gel has reduced and I feel much happier and my mouth is much healthier.
I also carry an atomiser filled with either water or a saliver replacement product. This easily fits into my pocket and can be used in emergency(when I forget my bottle, which I leave in shops,cars, people's homes etc) or places where a bottle is intrusive.
I have been having physio on my neck, which had been welded rigid and swelled with odema after surgery and radio therapy. This has loosened up the tissue in my neck and reduced the swelling and seems to have improved my saliva production somewhat. I'm resigned to the fact that this is as good as it gets now and I have to live with it and get used to it. It is a minor problem which is easy to get round and as long as you keep your mouth moist and your teeth clean, you will get used to it.
Also I use a high flouride touthpaste and mouthwash which has reduced my visits to the dentist.

I must be an oddball to this group, because although I do have dry mouth occasionally, my problem is the thick, putrid-sweet- tasting mucus I constantly have in my mouth/throat. In the mornings it starts out as a frothy liquid coming up in my throat, then the rest of the day I constantly have the mucus/phlegm in my throat/mouth. It makes me nauseous and I have no appetite. I had something similar during and right after my treatments (completed Jan '9; 7 wks radiation with 1 day wk chemo for Stage IV squamous-cell tonsil cancer), but this is much worse. I have written before on the forum about this, but not too many others seem to be experiencing this. My doctors blame it on the radiation I had, but I'm wondering if something else is causing it since not too many others have mentioned they have/had it. I probably sound like a broken record, so forgive me. Right not I am waiting for a call from my doctor with results of my latest 3-month CT Monday. Pray for me. I'll let you all know my results when I get them. Thank you for listening.
julieann

Buy a water pik. Aim it at your cheeks and use warm water mixed with biotene mouthwash. Close your eyes and sort of open your mouth and let the water pik do its work as it cleans out that thick mucous from your mouth and it all goes down the drain. Works great.

I do this first thing in the morning when the mucous is worst for me - give it a try. I say close your eyes because I don't like to see it! Yulch but hey, its the price we have paid!

Donna

Thanks, Donna. The only trouble I have is that my mucus is CONSTANT. Even when I clear it out, it comes right back from somewhere. It's a constant thing all day. At night, for some reason, lying down seems to help stop it, or at least I sleep about 5 hours. When I get up, here it comes - sort of frothy at first, then it thickens. I spit all day in a kleenex, which I hate (try to find hiding places where people can't hear me The other thing is the putrid sweet taste associated with it. I've been told others have the metallic taste associated with theirs when they're having their treatments, but mine changed to the sweet taste about 6 months ago and is constant. Again, thanks for your suggestion. I just wonder if others have had the sweet putrid taste associated with constant mucus all day.
Julieann

The Hyperbaric sure brings out the mucous, And that ia it brings it out when you ar shut in that thing. Have to take a wash cloth they give me or a handkerchef.YUK

Dear Danny,
Sounds like you've done a great job of coping with your dry mouth and intergrating different therapies to make it easier to live with. As a nurse I talk with many people with dry mouth. It seems that people 5+ years without cancer reurrence aren't as interested in finding a dry mouth cure but have learned to live with the dryness.
Thanks,
Linda

My name is Linda and I'm a cancer survivor but not head & neck. I'm here because I've been working with patients going through oral & Head & neck cancers for the last 15+ years.Have been focusing on the dry mouth/xerostomia problem so often seen in survivors.The article on "Wonders of saliva" by Rosie Mestel in the website needs updating. Dr.Bruce Baum (mentioned in the article)is currently using Aquaporin gene therapy to create saliva in people with radiation-induced xerostomia. Currently, results are temporary but favorable without side effects. The current study is a Phase 1 trial at NIH to prove safety and best dose level.The goal is to use gene therapy to create saliva on a long-lasting basis. Anyone interested in more information ? www.drymouthstudy.com .
_________________________
Hx of stage IV non-oral cancer tx with radiation, chemo & surgery in 2005. Currently a research nurse with National Institutes of Health working on a clinical trial using gene therapy for radiation-induced xerostomia. [email protected]

Linda --

Just FYI about that saliva article: Rosie Mestel was a medical writer for the Los Angeles Times (she's now the deputy health/science editor), and that article was published in the LAT on Jan. 21, 2002.

So yes, there have been quite a few advancements in the intervening years!

(Brian: you might want to put a date on that article, plus give credit to the LAT.)