| | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | David - good one.
But seriously (ok, sort of), taping one's mouth shut is interesting, as long as you have no nasal clogging issues. Wouldn't work for me but who knows, maybe someone will report in on it.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Sep 2012 Posts: 74 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 74 | Ugh, I think taping my mouth shut would freak me out. I hope my husband doesn't read this thread and get any bright ideas!
mausmarrow.com
Age 59 ex-smoker 1989
1/10 dx MDS (blood cancer)
2010-11 21 cycles Vidaza
11/10 Bone Marrow Transplant
8/31/12 dx SCC left BOT HPV 16+ T1N2cM0
10/11/12 TORS partial glossectomy clear margins
10/24/12 bilateral ND/ii-iv 92 nodes all clear
10/30/12 dx revised T1N0M0 no chemo or rads
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Tie a large Bandana under your chin and around the top pf your head. Been doing that too and it does work. The air entering an open mouth drys like a Maytag.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Using tape might cause problems. Some people have senstive skin and tape glue sticking to it could be bad.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | My husband got, for lack of a better term, "slack jawed" during chemoradiation, as his tongue was very irritated. In order to help him sleep at night with his mouth closed, I bought him a c-pap strap from the local medical supply store, did the trick perfectly. Once he started using the strap, it helped lessen the mouth sores as well.
Now that he's done with treatment, dealing with dry mouth, has found the strap very helpful in keeping his mouth closed and as moist as possible at night.
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | | Joined: Aug 2006 Posts: 294 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2006 Posts: 294 | Lefty,
Needless to say, every situation is different but I am now more than 6 years out and still have that exact same problem. I make it through the day usually with no problem although sometimes it seems to be triggered maybe by some specific type of food. Night time is terrible although now, after so long, I think I have adjusted to it. I have not found anything after this long to really help at night. I am still puzzled as to why this is as I can get up out of bed in the middle of the night and within 30 seconds I can start sensing saliva returning.
Just hang in there-
Bill D.
Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
| | | | | Joined: Aug 2006 Posts: 294 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2006 Posts: 294 | David,
Let me know how that one works out for you!
Bill D.
Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | I sleep with a water bottle in the crook of my arm (or somewhere near me in bed). Yes, the water gets a bit warm but I wake up many times a night, have a drink and go back to sleep - all while waking to only the minimum level required to complete these tasks. I use the "Thermos brand" water bottles with the lid that snaps shut plus it has a metal tab to secure the lid. These are necessary to keep the lid from popping open in the middle of the night - not fun!!
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | There's a gel for dry mouth called biotene (it also makes toothpaste and mouthwash), which has really worked for my dry mouth
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Nighttime dry mouth sucks, or I wish it did. I have a small can of squirt-spray Oasis for dry mouth by my bed, and reach over and squirt my mouth when the dryness wakes me.
Golly Jim, just your post. Please, please, please take a picture of yourself with that bandana concoction and email to me. I bet you are soooo cute!
Hugs from julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | |
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