| Joined: Apr 2008 Posts: 117 Likes: 1 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2008 Posts: 117 Likes: 1 | Because radiation treatment damaged my salivary glands, I get dry mouth. When I sleep it is worse, because sometimes I open my mouth to sleep better. But I also wake up a few times every night.
Next to my pillow I keep a small basket that contains a small sprayer with plain water, a different-shaped small sprayer that contains Biotene mouth wash, and a tube of Biotene Oral Balance Gel.
When I wake up, what I usually do is spray liberally with water first. Usually 10 sprays. Then I either do two or three sprays with mouth wash, or I squeeze some gel into my mouth. It all depends on how I feel.
The big advantage in this is I don't have to get up or turn on the lights. Nor do I have to keep a glass of water by my bed that I might knock over.
One thing about the gel. For awhile I didn't like using gel. It seemed to gunky. But now it is one of my main solutions, at night and in the car. Because when my mouth gets very very dry, it gives me longer relief. And as it dissolves, it even gives some relief to my throat.
Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
| | | | 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 | Good ideas. Another reason for dry mouth is that the salivary glands basically cease production when sleeping. There are snoring chin stats that help keep the mouth closed when sleeping or some use tape. Another is using a humidifier.
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: Apr 2008 Posts: 117 Likes: 1 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2008 Posts: 117 Likes: 1 | My problem is my nose gets stuffed up and so my mouth opens so I can breath.
Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | There are also adhesive strips that help to keep the nostrils open a little wider and I just saw something recently that fit inside the nostrils that do the same thing and don't requite the breathe-right strips across the nose. My son had two kinds of humidifiers, and I'm not sure which one he found was better but I think it was one that used water. And he slept in a recliner or with his head elevated on the couch. Seems like the nose get stuffy quicker if you are in a more reclining position. He had a plant mister which has a finer spray than a regular spray bottle. You can get these at a garden shop but they are more expensive than the regular spray bottles.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | I find that sometimes when I climb into bed, those cold covers make my nose want to stop up. What works for me is to pull the covers up over my head and breath under the covers for a few minutes. The warm air reopens both nostrils and warms up those cold sheets. Then I can come out from under the covers and go to sleep normally.
I don't think I open my mouth while sleeping but apparently I have started drooling during sleep. Many a time I wake up and the the pillow case next to my mouth is wet. I never drooled before treatment.
Lastly, I seem to have lots of sinus drainage that dries in my throat during the night. I wake up every morning feeling like my throat is coated in dried glue. Warm water gargles loosen it up and then it's a bunch of hacking and spitting to clear all that gunk. During the day it seems I have a lot of very sticky rope mucous, hard to clear out. Fortuntely my throat is not burned up from radiation so it doesn't hurt to hack.
Oh well, life goes on.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Anything cold, as in sheets,air, etc., to the chest will increase secretions in the lymphatic system. Once warm they reduce. In compromised area the lymphatic draining isn't happening like before. This probably causes that stopped up nose. Proper lubrication of the nose in the evening before bed is the best thing you can do. Either a saline mist around .5% or a eucalyptus type herbal inhaler can keep it moist and open. If you are good before bed, you will sleep better.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | If you're a mouth breather you're kind of screwed. I'm 11 years out and I still use a humidifier (I'm not a mouth breather). Still get dry mouth. You will pay the price for anything salty you eat, so don't eat pizza before you go to bed. If you're fresh out of Tx, and had targeted RT, then your parotids should recover in about 18 months or so (except the one immediately in the radiation field). Water helps, but it doesn't act as a substitute for the enzymes found in saliva. Products that mimic the enzymes may help, especially to protect your teeth. Many medications will also cause dry mouth as well (even a saline IV drip). Saliva is one thing we take for granted until we don't have it then we realize just how important it is...
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Gary,
Have you tried PerioSciences hydration products. The dental gel has an antioxidant as well as xylitol. You put a bead between the lips and gum, top and bottom. Keeps the lips to the back taste buds on the tongue lubed. ProVantage Dental Gel is the product name.
Dr. John xylitol candy does an incredible job also. 2 mg/piece.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Apr 2008 Posts: 117 Likes: 1 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2008 Posts: 117 Likes: 1 | [quote=Uptown] Have you tried PerioSciences hydration products. The dental gel has an antioxidant as well as xylitol. You put a bead between the lips and gum, top and bottom. Keeps the lips to the back taste buds on the tongue lubed. ProVantage Dental Gel is the product name.
Dr. John xylitol candy does an incredible job also. 2 mg/piece. [/quote]
Assuming you tried both, how does the provantage gel compare to the biotene oral balance gel?
Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
| | | | 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 | Andrew, in case you missed the October thread...the Biotene products have all been changed and the active ingredients removed. Biotene is not what it used to be and isnt comparable to anything anymore. Biotene Changed thread 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 | | |
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