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#24241 09-03-2007 06:10 AM
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Pierre Offline OP
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I am 47, diagnosed with Stage 2 SCC of the left tonsil in May, did 3 rounds of Cisplatin and 34 IMRT sessions ending July 31st. Treatments were rough, especialy towards the end. Luckily I had opted for the PEG tube, as it kept me alive for about 5-6 weeks as sole method of nutrition (Ensure and water). 30+ days after treatment though, I must say I have made great progress, started eating solid food about 8-10 days ago, and have not used the peg tube since. Called GI Dr to get it removed, he said you need to eat well for 3-4 weeks... so I have to wait a little longer. Biggest problem I see going forward is the dry mouth.... using Biotene, prescription strength fluoride rinse, seeing dentist every 3 months. Anyone know of really good products to help with this, especially at night?? Very frustrating, but so far I feel a lot better than at the end of July smile

#24242 09-03-2007 06:26 AM
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Hi Pierre nice to meet you and well done for your fantastic progress.
Biotene do a whole range of products for dry mouth check out their web site for saliva replacment gel and and spray,and remember to drink loads of water.A mister bottle full of water is also useful to spray round the inside of your mouth during the night if it gets very dry.Hope this helps

liz


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.
#24243 09-03-2007 06:40 AM
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Hi Pierre,

Do you run a humidifier in your room at night? That seems to help my husband out quite a bit.


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
#24244 09-03-2007 11:10 AM
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Pierre Offline OP
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Thanks to both, no humidifier at this time as we have plenty of humidity from the weather, but we do run them during winter months.

#24245 09-03-2007 01:13 PM
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Welcome Pierre

I find the Biotene oral balance gel very good for my dry mouth.
Best wishes for continuing improvement after your treatment.

Helen


RHTonsil SCC Stage IV tx completed May 03
#24246 09-04-2007 04:08 AM
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Hi Pierre, sounds like you are making good progress....I also use the biotene products for my dry mouth and they help. Good Luck, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#24247 09-04-2007 01:20 PM
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Hi Pierre, we're also from NJ and Jack is 19 months from stage 4 tonsil cancer. He is doing well. In addition to the biotene products, which he is still using, he also tried throat coat - an herbal tea he got in the natural food store. It tasted like licorice and helped somewhat. There are medications that help dry mouth but they take a few weeks to kick in. Jack benefited from acupunture but not everyone does. It all takes time and you're very early in your recovery. It may take several months for some of these side effects to settle down but it does get better. Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
#24248 09-15-2007 04:34 PM
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I had acupuncture all through my treatment, and it helped enormously with dry mouth. Ironically, three months out of treatment my dry mouth is worse than during treatment. I chalk this up to having no more acupuncture. I will have to start again. I haven't had good luck with any dry mouth product so far. Best things for me are salt water rinses and Trident White tropical flavor gum.


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
#24249 09-16-2007 06:16 PM
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The nurse practioner at the MO office suggested trying seltzer/club soda rinses or just drinking it. Mom tried it, she said initially it made her mouth feel like chaos was breaking out inside but oddly enough a few minutes later her saliva was back to her new "normal". She also uses some of the biotene products.


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
#24250 09-17-2007 02:50 AM
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Hi Pierre-
I second what Helen says about the Biotene dry mouth gel- that's the gel, not the liquid. The liquid gives me relief for a little while, but the gel lasts for hours. I put a fingerful on my tongue at night, and then try to sleep with my mouth closed. I usually only wake up once to sip water or put more gel in. At first I woke up alot more but now it's been 6 months and it's better. Sounds like you are doing great on the eating!
Melissa
Melissa


Age 36. Four years of fighting Stage 4 Skull Base Cancer
Can't even fit it in the signature line. I've tried it all! 5 surgeries, IMRT, cyberknife, cisplatin, erbitux, AIM, taxotere, carboplatin.

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