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#22304 02-21-2007 12:58 AM
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Hi Guys, thanks for all your comments and ideas. There seems to be a number of products out there that need to be investigated. Biotene gel, Mouth Kote and other mouth gels are available here but, in my case the effects last no more that 30mins.
Are there other Biotene products other than the gel, toothpaste, and chewing gum. Is the drug option, i.e. Salogen good. Are there side effects?.
A number of people have mentioned humidifiers. The west of Ireland is one big humidifier during the winter (might be an idea for a visit). A request to purchase one would certainly result in being taken away by the men in white coats!!!. I will check into it though.
I am working with a herbalogist over the last few weeks and I have had my first break trough in that I have had a number of 2-3hour stretches using a mixture of Orabase with a herbal concoction. I will post the details of this later. It might be useful for others considering this route.
On the great news side of things - I had a PET scan recently and 18months post the first op I have been given a clean bill of health. Early detection, early intervention, a positive outlook and all the help I can get from ye guys.
Thanks again.

Looking at the stars in Galway

#22305 02-28-2007 05:35 PM
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Hello John,

There is a Biotene mouthwash also that I use and it helps. My doctor prescribes restoril (aka temazepam) for sleepimg it knocks me right out with no after effects, ay least not for me. And it is relatively inexpensive compared to other sleep meds on the US matket. Even tho I'm not Irish, I have always had an affinity for the Irish and the lovely Emerald Isle which I have only visited through Rick Steves travelogues. Good lick to you.

Jim Haucke
SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies

#22306 03-01-2007 01:38 AM
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Your inside humidity might be very dry however if you use the furnace a lot as it will strip the moisture right out of the air. Conversely the same holds true for AC for those of you in hot climates.

I just kept a water bottle on hand all of the time and woke up and took swishes as needed.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#22307 03-08-2007 05:49 PM
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Hey all:

I'm new to the group and am wondering the cause for dry mouth. I am having extreme thirst/dry mouth lately but really haven't had it much in the past. I know I'm missing a few salivary glands - maybe it's finally catching up to me? I'm not currently in treatment - only had surgery (not chemo or radiation) quite a long time ago. Any help would be appreciated.

Thanks.
Cathy V.

#22308 03-08-2007 07:48 PM
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Hi Cathy,

Dry mouth is frequently a post radiation problem. I woudn't think that you would be "catching up" now.

It (radiation) can exceed the survival thresholds for salivary glands. The dry mouth for me didn't become severe until towards the end of radiation, and it's stayed pretty much unchanged since finishing treatment.

It may be worthwhile having a checkup...excessive thirst can be a symptom of something else going on physically.
Wayne


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
#22309 03-09-2007 01:09 AM
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Robin had a saliva gland removed at his surgery,thatplus the radio treatment makes for a very dry mouth by the day.I went on line to express chemist and ordered the biotene oralbalance dry mouth system which contains several products and the oral balance dry mouth moisturising liquid.It arrived within 24 hours and Rob finds the mouth wash brilliant and uses it several times a day.


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
#22310 03-09-2007 02:55 AM
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Cathy,

It helps us a lot when you post your particulars below your signature so we can answer your questions better.

The rad, which you didn't have, damages the sal glands so they don't produce adequate saliva thereby causing dry mouth. We are told generally that with IMRT we should recover our saliva function over time but it, of course, would depend on where we were radiated and how much damage was done. Having 1 or more glands removed would achieve the same result but I would think recovery would be impossible but I'm not a doctor. Why the delayed reaction? Haven't a clue, but IMO anything that delays the onset on dry mouth is a good thing. Talk to your surgeon. I'm sure you will get an answer. Whether it's one you can understand is another topic. Let us know what you are told..perhaps under your own post.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#22311 03-09-2007 06:22 AM
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Cathy,
there are many reasons for people to have dry mouth; medications and diet top the list.

Examine all of the meds labeling for clues such as warnings, precautions and contraindications to see if that is a factor.

Be particulary aware of your salt intake. Pizza and soups, for example, tend to be very high in sodium.

Another factor could be if you breath through your mouth at night while sleeping.

Low humidity and exertion will also dry you out.

Like David mentioned I had IMRT and it took 18 months for salivary function to return. The right parotid, where the tumor was radiated to oblivion, does not function so my situation is not unlike yours that I have reduced salivary function. If I am watchful and aware about it I can lick postage stamps and envelopes.

I have used a humidifier for over 4 years now and it helps a little. Mine runs 24/7.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#22312 03-22-2007 08:36 PM
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Sleeping on your side reduces dry mouth because when you sleep on your back your mouth falls open and makes dry mouth worse. Sleeping on your back increases mouth breathing. I keep a spray bottle of Oasis by Sensodyne, oral demulcent moisturizing mouth spray for dry mouth, by my bed and use it during the night. Also I rinse my mouth many times a day with water with a little baking soda in it. Keeps the mouth clean. Dry mouth can lead to infections such as candida (fungal infection.)

Barbara in Houston, SSC upper lip, perineural invasion

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