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#69392 02-06-2008 09:48 AM
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GaryG Offline OP
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I'm about 10 weeks out from the end of my treatment...got a little taste, toothpaste, some soups etc. Have made friends with my water bottle..BUT, I wake up three or four times a night with my mouth nearly dried shut. I'll have to sit up and take two or three drinks of water and let them sit in my mouth to kind of get things back to normal. Then I can go back to sleep and wake up a do it again. If this is fairly normal...and I assume it is...about how long on average will it last. Kinda ruins the sleep cycle.


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
GaryG #69395 02-06-2008 09:56 AM
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I get that dryness too , but I just take a little biotene mouthwash swish it for about 30 seconds, the a little water and i get some slobbers going. It doesn't last all night but maybe for a couple of hours. Maybe a little hydrocodone solution helps too if you have 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
EzJim #69403 02-06-2008 11:32 AM
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I think I can say that for most of us, it is normal, unfortunately.

Are you sleeping with you mouth open? I find that I do sometimes and that really adds to the effect.

Some here have suggested wearing some sort of chin strap to keep that sucker closed.

I am 13 months post IMRT and still have both the Biotene and Water bottle on the bedstand. It is not as bad as it used to be so yes it does get some better for most.

Kevin


18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
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Some people get humidifiers and put them next to their bed. Being in Fl and having my Tx end when the air here is still very moist, I didn't have to do that but you're in Tn in the winter so it may be beneficial. Also keep a mister full of water next to the bed and spray your mouth frequently.

Good luck but this phase will to soon pass.


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.
davidcpa #69418 02-06-2008 01:03 PM
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The Biotene folks make a mouth spray. I haven't used it, but used a different brand that was available when I had rad. Worked great. Humidifer for non-FL folk is also good idea. Try to keep your mouth shut.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Eileen #69423 02-06-2008 02:42 PM
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Besides the water and biotene I also have a large humidifier by mu bedroom door. LOL Maybe there's something else like a slingto make you sleep without an open mouth. If there is I'll try anything to stop this dry mouth.


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
EzJim #69432 02-06-2008 07:44 PM
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I didn't have rad., but I have problems with a dry mouth when sleeping since my surgery for other reasons.

I find that using a spray bottle does the trick for me.....I keep a spray bottle of water, and a spray bottle of Biotene by my bedside, and some lovely lip salve. I find this easier than actually drinking.....and easier than taking a chance on spilling my water. I sometimes use my Rubbermaid "suck bottle" with a flip spout. It doesn't drip if knocked over or lost in your bed. You sip it without having to tip it up.

It seems that someone--Brian, maybe it was you.. on the forum mentioned a mister that was operated by a battery pack, and he wore it all the time for (am I remembering this right?) a constant misting. Brian, am I making this up? It would be great to sleep with something like that. If I am making this up, then somebody needs to invent this!


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
August #69463 02-07-2008 08:32 AM
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GaryG Offline OP
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I'll get a humidifer set up and try that spray bottle with a 50/50 of biotene and water (or maybe scotch and water). I sleep in a recliner and I don't think I sleep with my mouth open but the idea of keeping it closed will be looked at....thanks again, ya'll are great!


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
GaryG #69468 02-07-2008 09:10 AM
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Gary - I've tried the Biotene spray that others have recommended, but have found Oasis mouth spray to be much more tolerable, and it relieves the dry mouth much better than water. Good luck!


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.
GaryG #69469 02-07-2008 09:12 AM
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Gary

My experience is that the warm mist humidifiers work better and are quieter that the cool mist units. Plus they do not cool off the room like the cool mist units do. The downside is that they use more electricity because of the heating element (about 250-500 watts).

Just food for thought.

Kevin


18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
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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.
GaryG #69570 02-09-2008 09:54 AM
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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.
x28007 #69685 02-11-2008 10:28 AM
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GaryG Offline OP
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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
GaryG #69689 02-11-2008 11:21 AM
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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
GaryG #69948 02-16-2008 06:26 AM
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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.
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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
EzJim #69955 02-16-2008 10:20 AM
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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.
davidcpa #69958 02-16-2008 11:36 AM
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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
EzJim #69960 02-16-2008 12:28 PM
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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.)



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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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