| | Joined: Jul 2007 Posts: 30 Contributing Member (25+ posts) |  Contributing Member (25+ posts)
Joined: Jul 2007 Posts: 30 | Hey Gary isn't this fun! I also have a small humidifier in the bedroom and I use either Oralbalance Dry Mouth Moisturizing Gel from Biotene or a product called Mouth Kote Oral Moisturizer(spray). I order them from a place called Dental Depot. I also use Thayers Dry Mouth Lozenges when I have to attend a long meeting at work and at church. I am almost 5 months out and can sleep 5 hours now without waking up with my tongue stuck to the top of my mouth. And yes I have a bottle of water with me almost always.
Bruce
Age 57 SCC Stage3 BOT and 1 node PEG 35RADS
7CHEMOS Tx over 9-17-07 tube out 10-12-07 back to work 10-15-07.
| | | | | Joined: Dec 2007 Posts: 138 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2007 Posts: 138 | Stoppers 4 Dry Mouth Spray is another alternative to Biotine spray. It has a very light minty flavor that is good for fresh breath and it doesn't burn my mouth. I buy mine at Walgreen's.
Nine years out. New normal with limitations, but surviving and living life to the fullest.
| | | | | Joined: Oct 2007 Posts: 83 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2007 Posts: 83 | Picked up some of the Oasis spray....and yepper's it works. I get maybe three hours before I really dry out. The mint though...Holy jeppers....that first shot was like a big bite of Habenero...WOW. Of course my tongue is super sensative, but that sure was a surprise.
Thanks one and all for the great info!
Stage 4b BOT and node on right of throat. did 38 trips of TOMO PEG tube,Cysplatin,Taxotere & 5fu 1st 4th and 7th week, changed to Erbitux for the last 4 weeks. 1st PETS since end of TX..CLEAR 6mos out and 2 nodes are hot. Bilateral neck dissection on 10/31/08. Clear Scan 3/31/09 & 8/02/2010
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | The magic mouth wash my RadOncolgist came up with works for a few hurs, but my Ins doesn't want to pay for it. I'll get the Dr to call them tomorrow while I'm having rads. If he says it is medically necessary, they will pay. This is the script the Druggist never heard of.
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: Feb 2008 Posts: 16 Member | | Member
Joined: Feb 2008 Posts: 16 | Gary - I'm sorry you got some burning from the Oasis spray. I guess everyone is different. My tongue burns a lot from different things, but I spray the Oasis under my tongue, so it doesn't burn it. I've started using the cool mist humidifier as someone else suggested, and that does seem to help at night.
Lisa - Diagnosed 8/14/07 with Stage 1 metastatic squamous cell carcinoma, unknown primary, most likely nasopharyngeal, status post 2 surgeries, completing 6 weeks IMRT radiation on 11/26/07.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Every liquid I put into my mouth burns, even the ones with narcotics in them. I rinse with water and in a few minutes , the burning sensation eases up and the meds can do their job. Now the pain is on my bottom gum in front and behind my lip. It seems to be spreading.Where in the hell is that magic wand? LOL It's past time to wave it.
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 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 | Jim,
If it makes you feel any better, you are NORMAL in how the Tx affects most of us. There are a very few that breeze thru it and a few that really really get clobbered but most just get hammered big time.
Hummm, I wanted this post to cheer you up by making you feel normal but in reading what I just said I doubt it?
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | David , you did good. I sure am learning the after affects and fast.
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 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Jim, according to my son's experience - some things worked for him for a while, and then they didn't but when he went back to them, they started working again. He tried the Oasis and Magic Mouthwash and Stoppers 4 dry Mouth and Biotene. It would seem to me that even if something doesn't work or only for a little while, it doesn't mean that it won't work again later on. David, you always made me feel better when I was helping my son through his recovery and you gave us both hope that things would get better - and they did!
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: Aug 2006 Posts: 167 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Aug 2006 Posts: 167 | Hi GaryG
Yes this is pretty much normal. My Dad uses a humidifier at night; sometimes my mother says the bedroom is like a rainforest ha ha. My Dad likes MouthKote at night; he keeps a bottle on his night table and takes a few squirts when needed.
Everyone is different; so it's hard to say as to when you will get some releif. For my Dad things have improved with the dry mouth. It takes time.
Best wishes,
LisaB
My Dad (Sam) at age 69 dx SCC Base of Tongue T1N2C Well-Diff - March 2006.
35 IMRT rads & 3 Cisplatin chemos - Apr-June/06. Nodes shrunk 50% Dr's suggest ND. Negative PET - he declined ND.
March/07 Had Bilateral ND. No Cancer!! Doing Well!
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