#22294 02-19-2007 04:56 AM | Joined: Feb 2007 Posts: 9 Member | OP Member Joined: Feb 2007 Posts: 9 | Hi to the world. Just found this web site and I am relieved to see that I am not a complete nut and there are other people out there zapped from the big C cures. I am a genuine Irish "Paddy" , 18 months postradical neck surgery, tonsilectomy, chemo (cysplatin) and 38 course radiation. Tumor in the tonsil and 1 stage III and 2 stage II lymph nodes. Doing pretty well with one exception.
"Please tell me that there is somebody out there with a remedy for lack of sleep due to dry mouth."
On the cure side "Arthur Guinness" is a pretty good remedy for weight loss.
For now " Sleepless in Galway" | | |
#22295 02-19-2007 05:58 AM | Joined: Jan 2007 Posts: 9 Member | Member Joined: Jan 2007 Posts: 9 | Hi there sleepless in Gallway. Well John enjoy the stars if they ever come out in Ireland because I have dry mouth also. I take the dog out for his ablutions to get me tired again. About every hour or so I have to get up and pour water into my mouth and blow my cheeks off my teeth and pry my tongue off the roof of my mouth. Isn't it a fun game to play. I guess you'r on the liquid diet too? I mix an ounce or so of Jamesons in with my mega shakes helps convince me to keep drinking the high protein stuff. Guinness is good for anything so keep up the good work, just add uncle Jamie or Bushmills as desert and all will be well. Everyone says alcohol is evil and adds to dry mouth. Horse puckies, you can't get any dryer than the Sahara. I was born in England to Irish parents who's family emigrated there from Ballaghaderreen, Co Roscommon,formerly county Mayo Ireland. SO we are southern catholic folk (ha ha) and if anyone knows about drink it's them guys. I've long since moved to Canada and have a wonderfull family and my strength comes from my wife who supports me and pushes me to stay alive, shes a wonderfull colleen. Our family name is Towey and their having a reunion in Ireland this August, I can't make it 'cause of this cancer radiation teatment recovery still hanging on These cold winter nights in Ontario make for good star gazing. Start with the the plough (big dipper) and from there find the North star. It'll take your mind off a bunch of stuff and you don't need any equipment. Venus is the bright star in the North East just after sunset, she's pretty bright. Have fun and sleep in shifts. Use any kind of enzyme charged mouth washes for the dry mouth they work for a few minutes but untill they invent pumpable artificial spit enjoy the stars and Jamies. Dan | | |
#22296 02-19-2007 06:27 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Paddy You might want to dry having a humidifier in your bedroom, every little bit of moisture helps. Are you rinsing with Biotene or whatever you can get there..ask the chemist he should be able to help you. My hubby is a scouser, you know, an Irishman that can swim...lol. Best of luck to you. Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#22297 02-19-2007 12:23 PM | 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 | John,
My mother's name was O'Gorman and my father's was Hastings. A Irish and English marriage filled with constant fireworks and excitement to say the least. Both were so stubborn it's a wonder I turned out so perfect. LOL
I swril Biotene or the other one before I go to bed and whenever the cats wake me and I don't have any problems, but each of us is different.
May the Luck of the Irish be with you.
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.
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#22298 02-19-2007 07:10 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | I did not have radiation, but I do have a dry mouth problem related to my surgery. I keep a mister bottle, used to mist plants, beside my bed. I wake numerous times a night with my tongue stuck to the roof of my mouth, and my lips stuck to my teeth. I mist all around,,,,down my throat, beside my cheeks....along my front teeth....and I end up with a little drink, without having to tip a cup or bottle, and without having to worry about spilling. I hate waking up, but I am thankful to have discovered my mister bottle. I can not get much relief from just the humidifier.
I also put a little vaseline on my front teeth, and it helps keep them from sticking to my dry lips.
What is Biotene? How is it used, and how does it work, and where does one get it...ie. prescrip. or OTC?
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!
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#22299 02-20-2007 02:13 AM | Joined: Aug 2006 Posts: 294 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2006 Posts: 294 | John,
Beautiful area there! Spent a couple of days there on the way to Connemara.
Sleeping with a humidifier is about the best thing to try. Also, Biotene has an oral cream type product for dry mouth and it helps to use this for coating your mouth before sleep. I keep it at bedside at night in the event of waking.
Tell us more of the details in your case.
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.
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#22300 02-20-2007 02:36 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Colleen -- Biotene makes an entire product line (mouthwash, toothpaste, oral spray, gel, and gum) specifically designed for people with dry mouth problems. I've found them to be extremely helpful, as have many others here. They don't require a prescription, and most of the major drug stores have them. I've also found them at Costco -- not on the regular, bulk shelves but behind the pharmacy counter. I think they may also be available at Wal-Mart.
John C. -- in addition to some of the other suggestions above, if you haven't tried any of the medications made to increase saliva production, you might want to ask about them. I've been using Salagen (oral pilocarpine) for years, and it has definitely made a difference for me, although I know the results can vary from person to person. Another medication for this purpose is Evoxac (I don't know if there's a generic name), which I haven't tried, but quite a few people here have noticed real improvement with it.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#22301 02-20-2007 01:38 PM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Hi there Sleepless in Galway - My son also experienced sleepless nites because of dry mouth and tried all sorts of things but for him what really worked was "Stoppers 4Dry Mouth" - available over the counter at drugstores like Walgreens. The first time he tried it he was able to sleep through the night. He also uses a warm air humidifier. Sometimes you have to try different things before finding what works for you.
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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#22302 02-20-2007 03:07 PM | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | Just a note re "stoppers" - they soon will be off the shelves. Their product infringes patents owned by Biotene, and the resulting lawsuit is likely going to take the product away. But since the active ingredients in it and in the Biotene products are so similar, its removal from the marketplace will not leave us without products that work well.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#22303 02-20-2007 04:12 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | I've had a prescription filled for Evoxac since June of 06 but haven't dared take any of it! Can you believe that? All I've been through and for some reason this medication scares me, not sure why other then I've heard it may make you vomit and the thought of doing that on my damaged throat is scary. Anyone else taking it?
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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