Dry Mouth

SuzJ,

Xylimelts (my favorite), stopper4, biotene, oasis, coconut oil (some luck), assortment of gums and tablets with Xylatol and time (it slowly improves).  5+ years out and I am not 100% dependent on my water bottle.

Matt

ACT for Dry Mouth wash,  BioXtra gel, and fat free milk with meals.  Pur sugarfree is my gum of choice.  I also use a cool-mist vaporizer next to the bed at night.  There are legions of websites on drymouth, and several groups for things like sjorgrens have a variety of tips.  At 6 months post, things are improving but still not close to what used to be.  I'm told that status can continue for months or years.  Sadly, wine, beer, and coffee are off the menu for the next year.

Im beginning to wonder if the position of the tumour has a lot of relevance to loss of saliva? Im base of tongue, right at back, no surgery, 35 rads, chemo And didnt totaly lose my saliva. I'm 5 days post treatment, dry mouth when I first wake up but afterwards it works ok? Not complaining but I dont understand why this is. I did drink lots of milk all the way through & icecream.

Andy13460 said:

Dry mouth

Im beginning to wonder if the position of the tumour has a lot of relevance to loss of saliva? Im base of tongue, right at back, no surgery, 35 rads, chemo And didnt totaly lose my saliva. I'm 5 days post treatment, dry mouth when I first wake up but afterwards it works ok? Not complaining but I dont understand why this is. I did drink lots of milk all the way through & icecream.

 

He is one week out and has no complaints of dry mouth.  The doctors did try to spare the salivary glad on the right side, so perhaps that's why... no complaints.  He honestly had a relatively easy time throughout treatment. (I think you may have seen the video on Facebook of him ringing the bell)

Andy13460 said:

Anothersurvivor

Thought the name bioXtra rang a bell with me so I just checked all my potion and lotions. the wife got me the Gel Mouth spray before treatment started

BioXtra seems to be a non-USA thing.  I can only find one source for it here, Amazon, and even then it ships from Canada and goes thru customs.   I use the gel form, tried the liquid form and wasn't impressed.   My results from using the gel to treat my Thrush was impressive enough that my oncols are doing a mini informal trial with it here, in the mountain west USA. The critical thing I see with BioXtra, and ACT is they include funky natural ingredients in their formulas.  I am normally a long way from the naturals/organics crowd, but I get such better results.  

Our major player here is Biotene, owned by mega-corp Glaxo-, who bought out the Biotene originator, and then proceeded to reformulate the product taking out all of the natural ingredients and replacing them with synthetic 'equivalents'.  If you dig into the study results all their success preceeds that reformulation.  Go into almost any pharmacy here and you will find Biotene on the shelf.  You have to really dig to find alternatives like BioXtra.

Rexmax said:

Another Dry Mouth

I might be on wrong thread however thought I might get some help here. April 17th had a parotid tumor removed turned out to be large b-cell lymphoma, PET scan showed in neck glands only nothing below neck, said I'm stage 4 not sure why 4,they started me on on 6 cycles R-Chop, however under this thread it looks like all are doing radiation for the neck glands. My question is what else is there for dry mouth when biotene isn't helping at all and my tastebuds are horrible!!!! Everything taste so bad I can't even stand the taste of water, I'm open to any suggestions you all might have thanks 

I had to go for IV fluids a couple of times per week for a couple of weeks because I could not take in enough water (which is really a bad thing).  I was able to drink Ensure believe that or not.  I would hold my nose and chug it down and sputter and rinse and grimace and open another one and hold my nose again.

I very well remember tears in my eyes thinking, "I hope I live long enough to be able to enjoy a glass of water just one more time."  I drink bottles of water without hesistation now.  That was a short-lived phase and while I cannot make any promises, I'll bet it doesn't last a long time for you, either. 

Until it is over, you have to do what you have to do to take in fluids even if it is REALLY hard.  (I get it.  I'm not suggesting you do anything I didn't have to do.)