severe dry mouth

[rinaina]

I have mentioned before about my autoimmune disease called sjogren's syndrome and how it presents with a very dry mouth and eyes. I just finished my first round of A/C on Thursday, May 25, a day I will never forget. Anyway, I have such extreme dryness in my mouth, and believe me, I know from dryness. Other than sugar free gum and candy, biotene mouthwash and paste and water, is there anything else anyone can think of to help? It is so annoying and I feel like I have to always keep flossing and brushing or my mouth feels gross. Thanks in advance for your assistance with this.
Rina

[LovingDaughter]

My mom's oncologist recommended lemonade and sucking on candies. Oftentimes sour candies will help.

[rinaina]

thanks forgot about lemon drops, but should be sugarless to avoid cavities of course. You are a sweetheart of a daughter posting for your mom like this. lucky mom and special daughter.

Rina

[LovingDaughter]

I would help out anyone in this situation! It's been difficult for us, but we're getting through it. I've just found that I have a purpose in life that I never knew that I had before!!

[R.B.]

I have zipped through the headlines of your posts and see no entry into the diet debate.

You may like to check out the posts on omega three and six through the search facility - click on search above right and enter your term.

Fats are fundamantal at many levels in the body.

Balancing the omega threes and sixes, and getting some input of DHA EPA should help bolster general health if nothing else.

Please do check with your advisors before making significant dietary change.

Please excuse me if you have already done all this.

RB

[Cathya]

Ladies;

Don't forget ladies that you shouldn't floss while on chemo....no cuts to the mouth.

Cathy

[rinaina]

i was told to floss carefully with glide floss which won't cut.

[Sandy H]

I was never told to not floss instead I was told to try and keep my mouth very clean. As for dry mouth I found that by rinsing with baking soda help the acidic of the mouth. Also by drinking lots and lots of water helped. hugs, Sandy

[Becky]

And swish your mouth with plain yogurt (you can spit it out if you hate it) but swallowing it is good because the beneficial bacteria are good for your mouth and gut.


Becky

[al from Canada]

I just want to say that I know nothing about this condition however, I have to wonder (thinking outside the box a bit) if some stimulus / response training may help. Maybe, with the help of a psychiatrist and some operant conditioning (training), you might trick the brain into aleviating some of these symptoms. This sort of stuff works with everything from ameobas to mammals, so why not people?
just a thought, Al

[Lolly]

Ditto on the beneficial bacteria, I buy Acidophilus gel caps from our local health food store(in the refrigerated section, and keep them refrigerated) and take at least 2 caps morning and evening with meals. Much more concentrated than yogurt, and even though I like yogurt and eat it several times a week, don't manage to eat it daily which is very necessary to the system through this process.

[pattyz]

I use all the things you have mentioned. Most recently, I upped my Trident to two pieces at a time and change more often. This is my fifth year with dry as dust mouth. The Biotene paste feels so good...while it lasts. But that is the trouble as I experience it. Nothing lasts for long.........so water and gum all day long. Where ever I go!

So sorry,
xoxopattyz

[rinaina]

the biotene is great while it lasts, both the mouthwash and the paste. water tastes funky to me now for some reason and i am a huge water drinker from way back due to my sjogren's syndrome. will try two pieces of sugar free gum now and see if that helps plus get some sugar free lemon candies but have to watch out for the artificial sugars cause we all know what that can cause.
speaking of sjogren's syndrome, anyone know of any relation to b.c.? any other sjogren's patients out there with b.c. want to share any info?
Rina

[pattyz]

Oh dear, I forgot you're doing a/c, too! and yes, water tasted 'funky' to me too. Back then, I found a bit of lemon helped with the taste, but that is too astringent, I think.


Just saw a come back of 'fizzies' and wonder if that would 'adjust' the water enough to be palatable. Or half a fizzie :o)

I am a self dx'd Sjogrens, but in reality, don't have all the 'right' symptoms........

pattyz

[anne]

Hello Ladies,
You can try a mouthwash made with seaweed extract from the natural food store. It helped my mom quite a bit. I recommend to my patients small sips of water frequently, sugar free lemon candies. It is important to floss during chemo(carefully) because cavities can set in easily and inflammation of the gums can be painful from gingivitis when your mouth is so dry. Hope that helps

Anne

[rinaina]

Believe me anne, I know this being a retired dental hygienist. I am so concious of my dental health that if that becomes a problem I won't believe it.

[rinaina]

Patty, that is so funny about the fizzies, now I know you must be near my generation! What symptoms do you have that makes you feel you might have sjogren's? Thanks for the tips. Can't believe my favorite beverage, water, tastes so bad. Darn it. But I guess if this is as bad as it gets I can deal.

[pattyz]

rinaina, LOL! Glad you got the 'fizzies'...was not sure you would. Yup, I'll be 57 in July. They say there are new flavors, too, in stride with the rest of the multiple flavored stuff today.

Symptoms: you know, it has been a few (4?) yrs since I did my research, so now I don't even remember my 'score'. The dry as dust mouth is really all I can think of now. sorry...

[rinaina]

soon to be 55! I well remember fizzies and so many others from our generation.