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#57556 12-27-2005 12:57 PM
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Hello Roxs-sounds like my dad had the exact same complications as you (severe mucousitis-hospitalized-delayed tx) What worked for him was staying with the pain meds so he could eat and drink.
Are you still on any strong pain meds? My dad's mouth was falling off in his mouth. Happy to say that he is eating everything 3 mos out.
Be paient, keep with some pain meds to take the edge off-drink the lido. You will make it though this-it is amazing how the body bounces back. He was able to completely wean off the pain meds-
Stay strong!!


Dad Treated for T2N1M0 Tonsil Cancer August 2005. 35 IMRT radiation, 3 doses Cisplatin. Selective Modified Neck Dissection November.
#57557 12-27-2005 02:03 PM
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Hi Roxs,

The dry mouth issue affects us all. I have used oralgel, plus several other oTC products, none with much success. I had some luck with Evoxac which is a perscription drug. At the end of January, there wil be two new products I think may help. Neither has any side effects. They are Numoisyn Liquid and Lozenges. They will be available by perscription and your Rad Oncol should know about them soon.

Hope this helps.,

Steve daib


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
#57558 12-27-2005 07:17 PM
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Hello Roxs, Search here for information on symptoms of oral thrush. Many get it as a result of the changes caused by treatments. One of the symptoms is a burning sensation.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#57559 12-29-2005 12:15 AM
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MY husband has found the best relief from a product called oral balance.. it is a gel and has brought tons of relief from dry mouth.. especially at night so he can get extended sleep

#57560 12-29-2005 04:54 AM
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I found the oral balance gel is the best thing to use at night too. I still wake with my mouth feeling like a cracked, dry desert though......


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#57561 12-29-2005 08:06 PM
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I really appreciate your sharing the information about oral balance gel. Is it over the counter or is it presciption? I would really enjoy being able to sleep at night without waking several times with s DRY mouth.Happy New Year!


Hacklene
#57562 12-30-2005 02:53 AM
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Oral Balance gel is one of the Biotene products (over-the counter, not prescription). I've found it at Walgreen's and I think some other people on this site have found it at Wal-Mart. Probably some of the other major drug store chains have it as well.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#57563 12-31-2005 01:51 AM
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I am still without "SPIT", it appears that this is going to be a permanent condition for me according to my league of physicians. I am a VA patient and they send me a product simply called "Saliva Substitute". Manufactured by Roxane Laboratories in Columbia, Oh. On the label the list of ingredients, Sorbitol, sodium carboxymethylcellulose and methylparaben in a pleasantly flavored solution. I would argue the pleasantly tasting thing. But, I mix this stuff 50/50 with Biotene mouthwash in a little spray bottle, fits in my shirt pocket, and this works for me. I put my own label on it, "O.P.S." (other peoples spit). I got a wierd sense of humor.
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#57564 12-31-2005 02:19 AM
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Darrell --

Have you tried either of the two prescription meds available --- Salagen and the newer one, Evoxac? As I understand it these won't work if you do not have *some* salivary function left, but if you do, maybe give them a try. Our dental onc says that Evoxac avoids many of the unpleasant side effects of Salagen (the sweats, for example) and our ENT uses it herself (she had radiation for a head cancer 15 years ago) and also endorses it.

Also, on another forum topic, a new product due out at end of January was mentioned:

ALIGN Numoisyn Lozenges
ALIGN Numoisyn Liquid.

These are prescription but as topical materials avoid side-effects of oral meds. Perhaps keep your eyes open for posts about this product when it comes out.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#57565 12-31-2005 07:17 AM
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Darrell,

I also tried the Saliva Substitute years ago and I agree I'd argue the "pleasantly tasting" part of the label.

You still may find that the dry mouth lets up bit by bit over time. During my first couple of years after the end of treatment, my mouth was very dry, but as more time has passed (and with help along the way from Salagen and Biotene products), the salivary function has improved way beyond what I ever thought it would.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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