| | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Biotene stuff might help it coats and therefore lasts longer.
You can also try a humidifier and keep the room very humid.
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Sone, good job!!!! Keep up the good work, you are now past the 1/2 way point. Keep it up and we are here to cheer you on. Im following up on your progress and very happy each time I see you are continuing.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 |
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Keep it up, Sone. We are cheering for you.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 155 | Yes on the biotene and the vaporizer. Bob thought the vaporizer was an exercise in futility when I first set it up. Actually it did help some, not alot but it he said it made at least a little bit of a difference.
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | I just opened and closed my mouth as wide as I could several times a day. I wish I knew or thought about the tongue suppressors. I never had a large mouth to begin with (well compared to my mother's mouth which is HUGE) so now I am wondering how many tongue suppressors would have initially fit? I suppose I will never know...
Margaret--When you brought up the four fingered test--you really had me worried!!! I looked at my fingers and was like, "NO FREAKIN' WAY! I could never get four of my fingers in my MOUTH!"(I was thinking vertical) THEN I realized that you said "sideways"....I have no problem doing that--vertical? Different story--I can fit three and then some vertical...fingers too fat.
How many months post tx do we stretch our mouths?
Sone--How are you doing?
Last edited by Ray1971; 07-07-2009 03:42 AM.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Sone,
Just keep a bottle of water on a table in every room of your house. Keep several in your car as I always was leaving a bottle somewhere in every store I went into. At night keep a small spray bottle filled with water on the table beside your bed and when you wake up just give it a mist.
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.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Ditto what david said Rob had a spray bottle.
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.
| | | | | Joined: Jun 2009 Posts: 13 Member | | OP Member
Joined: Jun 2009 Posts: 13 | 21 down and 12 to go!!
Thanks everyone for your suggestions! I have been sleeping with a cool mist vaporizer since the first radiation treatment, and I agree it helps. Can't sleep without the sound now.
But thanks soooo much for the Biotene recommendation!!! My husband ran out last night to Walgreens and bought the mouthwash and spray bottle (I was already using the toothpaste, but didn't realize they had other products). Unfortunately he couldn't find the gel, but the spray bottle really worked! I sprayed my mouth before I went to sleep and slept for 3 hours straight. Yippee!!! And today I was able to take a 1.5 hour nap!! And when I woke up my mouth wasn't bone dry. I do sip water continuously throughout the day, but it's hard to keep your mouth wet while you sleep. I hope some salivary gland function returns when I'm done?
You all are really fantastic! Thank you so much for your encouragement and support and suggestions.
Sone | | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Sone,
You might want to consider asking your doctor for a script of pilocarpine or any other saliva producing med. It helped me a lot!
Just by chance are you doing fluoride treatments?
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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