| Joined: Sep 2012 Posts: 64 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2012 Posts: 64 | Please excuse me if there is a thread on this elsewhere. If there is, couldn't find it.
I am five weeks post radiation treatment and dealing with dry mouth. My Dr. prescribed Neutrasal which works O.K. during the day but is no help at night. I also drink "Traditional Medicinals Organic Throat Coat" tea which my ENT recommended. It does a wonderful job of lubricating mouth and throat but is no help at night. At night I wake up every hour, hour and a half, or two hours with extreme dry mouth. Drinking water, I learned and my Dr confirmed, doesn't really help dry mouth although it does help soften phlegm. It does make one urinate which means that I need to get up for that, so I limit my water intake and swish water in my mouth to moisten it. This has limited affect.
Is there anyway to reduce dry mouth at night so that I can get a decent night's sleep?
Thanks
Stage 3-4 Squamous BOT diagnosed 3/19/12 Molars removed 3/29/12 (Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12 Feeding tube: 8/9/12-11/21/12 Radiation 8/10/12-8/29/12 Chemo 1X/week 8/10/12-8/22/12 Last PET/CT clear: 9/17/13
| | | | Joined: Oct 2008 Posts: 3 Member | Member Joined: Oct 2008 Posts: 3 | Well this is not a refreshing reply but I'm ten years out on BOT cancer and still have problems with dry mouth. It's better but still not good. I don't drink as much water as before. Whatever you do stay close to your dentist (my suggestion only), I've had a time keeping teeth in order. I never took any of the prescribed meds for dry mouth just drank water. good luck, you'll make it! | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | Hi Lefty. This is pretty much a universal problem for us who have had radiation for H&N Cancer. I brush with Prevident 5000 Dry Mouth toothepaste, available from dentist then spray with Biotene dry mouth spray. This way I only wake up 1 or 2 times, rinse with water, spray Biotene and back to bed. I guess we can expect this to go on for the duration. Hope this helps.
Last edited by Deejer47; 10-02-2012 11:12 AM.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer. And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer. May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Lefty, ditto to the others. There's also a product called "Rain" from a company called Xlear. It's a xylitol-based spray and you might try it, keep it by your bed. Pretty sweet actually but maybe it'll help. Biotene also makes a gel. I don't particularly like it, but you could give it a shot. Since you're in a dry climate like mine you also might consider buying a humidifier if you don't already have one.
Staying close to your dentist is also a great idea, btw.
Let us know how you're getting on, ok?
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: 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 | Try keeping one of the above mentioned sprays by your bed and instead of getting up try just giving a quick squirt or 2 then you can go back to sleep right away. I get up frequently as I use a nighttime feeding machine for my feeding tube, so whenever I get up I rinse my mouth out with water instead of drinking it. I sure dont need any more liquids at night to make me get up even more. I should also give the spray a try. Im 5 years post rads and it still bothers me a little at night but it is alot better than it was when I was only a few weeks out.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I have dry mouth 24/7. I use all of the meds mentioned but they only last about 30 minutes. At nite I use biotene Oral Balance, then wash my mouth with magic mouthwash followed by Biotene Oral Rinse mouth wash, which I rub on my little bit of tongue, gums , roof of my mouth. It prevents severe dryness for a couple of hours. I'm still up every hour for pee time but at least I get to sleep a little at a time. I hope you find something that works even if it's a part time aide.
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: Sep 2012 Posts: 64 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2012 Posts: 64 | Thanks, all. I had been using a humidifier and started using the "Biotene" spray last night. It helped a lot. I'd used the "Biotene" spray during the day but saw no advantage in it. I've got "Oasis" and "Rain" on order and will experiment with them, too.
Stage 3-4 Squamous BOT diagnosed 3/19/12 Molars removed 3/29/12 (Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12 Feeding tube: 8/9/12-11/21/12 Radiation 8/10/12-8/29/12 Chemo 1X/week 8/10/12-8/22/12 Last PET/CT clear: 9/17/13
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Saliva production slows down at night, which is why people wake up with dry mouth, bad breath from the reduction of Salivor, and bacteria growth. I used biotene dry mouth products, dry mouth gel at night, along with water bedside. Here is an odd one, but heard some tape thier mouth closed, so moisture doesn't escape as fast..see your dr for that one. I never did it.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | Taping the mouth shut is interesting. Maybe I'll test that with my wife during daylight first?
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 |
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | | | | Joined: Apr 2012 Posts: 111 "OCF across the pond" Senior Member (100+ posts) | "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2012 Posts: 111 | I find that Biotene gel really irritates my throat, but Biotene mouth spray is OK. I dilue it with water, 1:1, which is better and makes it go further  Sally
Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol. 10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12. 12/07/11 RIG. RIG removed 05/05/12. 4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
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