| | 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 | Jojo, welcome to OCF. Most new members will start a post about themselves under the heading 'introduce yourself'. Its best to always start a new thread so that your post (just like the original post here) gets the attention it deserves.
You can rinse your mouth several times per day using 16 oz of warm water, 2 tsp baking soda, 2 tsp salt. Use a humidifier at night. Biotene makes several dry mouth products that can help. Some will coat your mouth. It will get better in time.
To avoid losing your ability to swallow, you should be taking tiny sips of water. If you have had some type of surgery or procedure that affects the swallowing muscles then you will need to have a swallow test done by a physcial therapist. Drinking water if you have trouble could lead to aspiration, where the water gets into your lungs instead of going into your stomach. Always ask your doc about things like this before attempting it.
Hope you take a couple minutes to write an introductory post so its easier to answer your questions.
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: Aug 2010 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2010 Posts: 72 | Hi Jojo,
My husband is 5 months out of treatment and has dry mouth, too. There are a lot of products available in rinse, spray, gel and lozenge. A pharmacist can tell you the options. Tim doesn�t like the rinse, but the gel helps when he has to speak a lot. It also helps him to clean his mouth often. He brushes what he can with a regular toothbrush and toothpaste, then cleans the rest with a small sponge on a stick and salt water.
Tim can�t swallow either and I don�t recommend trying it without the supervision of a speech pathologist. Tim has been battling aspiration pneumonia almost since treatment ended. It�s not fun.
I wish you the best.
Susan
Susan, CG to husband, diagnosed April 2010, age 56, non-smoker, no HPV
Mandibulectomy on left side May 2010 followed by 30 radiation, 3 cisplatin treatments.
| | | | | Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2010 Posts: 179 | Hi Jojo,
I find that the biotene products are pretty good for dry mouth. I work in retail and have to talk to people, i squirt their saliva replacement liquid in my mouth every once in a while and it helps alot. Before going to bed, i rinse my mouth with the Biotene mouthwash and it provides a few hours of relief. Hope it gets better for you soon, for me it hasnt gotten better but i know how to manage the problem better over time and now it is not so bad anymore.
Minh
35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | My main dry time now is when I wake up. First move is to the bathroom and biotene to loosen up my whole mouth which sticks together while I sleep. Almost have to pry it open.
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: Nov 2010 Posts: 27 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2010 Posts: 27 | Biotene has a terrific mouth spray to help!! Tom has used it through his entire treatment. Good Luck!!
Wife of Tom, 42
SCC/Tonsil DX 9/23/2010
PEG/Port 11/2010
TX Begins 11/16/2010
Chemo ended 12/28/2010
Radiation ended 1/6/2011
Neutropenia 1/7/2011
Osteoradionecrosis 09/2011
Jaw Resection/Flap 01/2012
*********************
How do you want to be remembered?
| | | | | Joined: Nov 2010 Posts: 167 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2010 Posts: 167 | I've been swishing and drinking a bottle of aloe pulp juice every day since mid week 2 of tx when the saliva decided to cease the bulk of it's production. The juice is way better than you might think!
It's naturally thicker than water so it's a little bit easier for a weak or sore throat to swallow, is sweet with LOTS of empty calories to go along with the hydration, and SEEMS to soothe and keep my mouth clean and moist during the day (not the night - I think we all must sleep in the same Sahara desert!)
I've found it on Amazon, Trader Joe's and Whole Foods.
I also use the biotene dry mouth wash and see a big difference in the viscosity of my saliva every time I use it - so I'm a big fan of that product - as well as Tom of Maine's silly strawberry kids toothpaste - doesn't burn AT ALL!!!
I'm just about to finish week 3 (Half way - yay!) tomorrow so the symptoms I'm battling have not reached their maximum threat level just yet but I have been grateful for the positive effects they've had thus far.
Jennifer
Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!
| | | | | 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'm still trying to figure out if the dry mouth or the slobbering is #1. LOL Either too dry to open this mouth or too wet to close it. Need a good inbetweener to develope now.
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 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | | "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | My dentist recommended TheraMints which are sweetened with xylitol, which doesn't promote tooth decay. I carry and use these to this day (8 months since end of treatment) and they make it possible to be out and about without necessarily having to carry water. This is more applicable to life after treatment if you have the dry mouth problem. http://www.3m.com/product/information/Dental-Xylitol-Theramints.htmlPS - I don't know about the fruit version
47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
| | | | | Joined: May 2005 Posts: 24 Member | | Member
Joined: May 2005 Posts: 24 | I have tried many over the counter products to no avail. I have been on Evoxac 30mg TID for the last 6 years and I can feel a difference. Ask your MD about it! Good luck
Maria 33 when diagnosed with SCC, partial glossectomy with skin graph from thigh,rt side nodes removed,ten nodes positive, PEG, 30 RAD tx, 1998. Scans clean.30 HBO tx-Massive dental work 07-08, ORN present 2009.
| | | | | Joined: Dec 2010 Posts: 6 Member | | Member
Joined: Dec 2010 Posts: 6 | thank you for all your replies.have just got the all clear after 4 months.but still no swallow doc it may not come back but i will not give up hope
jo | | |
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