#78804 08-16-2008 07:07 AM | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | While my dry mouth has improved considerably since the treatment days. my saliva glands are burnt toast (actually rock hard nodes) I never found the Biotene gel or gum much help and still had to get up several times a night to swish water.(drinking it or sipping it from bedside was out as it triggered coughing and woke the wife) So I was pleasantly surprised to find that the Biotene "Moisturizing Mouth spray" actually works for me. I keep it on the nightstand so when I can just shake and spray at 1 am At $5 a bottle at Wal-Mart it is worth trying once. Also when I need to go without drinking for a period (the Washington DC metro subway system prohibits drinking even water and has hefty fines), it extends the time I am comfortable and its small and compact. Hope others may find it helpful also. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | 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 | Charm,
Don't give up on something that may not work for you today or yesterday. Retry things every few months. I am almost 2 years post Tx and just about everything tastes the same as it did pre Tx but it's a constant work in progress. I had a BIG improvement in saliva and taste 16 months post Tx.
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 | I will buy some Biotene Throat Spray the next time I'm in WalMart. Thanks for the post about 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: 49 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Sep 2006 Posts: 49 | My daughter's salivaries where destroyed through the radiation and the ONLY thing that worked for her was Stoppers 4 Dry Mouth (Walgreens). I bought her everything out there - Biotene spray, Biotene gel, Aqua something - she didn't like any of it except the Stoppers 4 Dry Mouth. Bonnie | | | | 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 | If she likes that, save some $ and just buy USP Glycerin and add it to water, because that's all it is. ( I did this before I found Biotene, which in my experience of using it everyday is way better) Add a couple drop of mint flavor if that is important to her and you have spent pennies for the same thing. The label says it has some enzymes in it, but laboratory testing (by Laclede who have a patent on adding enzymes to oral care products) shows the levels to be so low as to be inconsequential to oral health. The enzymes are what are so expensive in the Biotene products. But for each person it is what relieves the dryness.
David is right, the oral environment is constantly changing and what works today (or not) will be different in a month or two. Keep trying to find things that work. Experimentation in this and in what you can eat and drink yields a workable life down the road.
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. | | | | Joined: Apr 2007 Posts: 20 Member | Member Joined: Apr 2007 Posts: 20 | How much Glycerin to how much water? Recipe please. Sounds perfect for my Z. He teaches philosophy, five classes of yacking a day!
~thalia
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | thalia
While Brian will have the answer on glycerin/water ratio, since my post I have also found a somewhat less expensive method that I use during the day, keeping the Biotene spray for night. It's not original, it came from posters here: buy the Biotene mouthwash big size and pour some into a teeny little plastic spray bottle (we bought them at rite-aid for buck). It wets the mout and provides some enzymes. It does not last as long nor give the complete relief that the packaged spray does, but it is easy and cheaper. Funny, just last week my protodontist was telling me I could save money by concocting glycerin and water spray but added that his patients found it hard to get glycerin off the regular drugstore shelf (only available in suppository form). Brian probably knows where to shop also.
Good luck to Z
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | 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 | The more glycerine the more it feels slippery and the longer it stays that way. It also tastes progressively weirder. So this is an individual try and experiment kind of thing. You can ask the pharmacy for this at most of them, but I find it on the shelf at Walgreen's, CVS and others, (way cheap) though I am hooked on Biotene and don't do things this way anymore. Just remember the battle is more than the sensation of wetness, it is about protecting yourself from periodontal disease and caries. These two things become a big issue after treatments as dry mouth and radiation make both of them worse.
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. | | | | Joined: Sep 2008 Posts: 49 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Sep 2008 Posts: 49 | Hi folks,
Glad I tripped into this chat. My husband has been using the glycerin dry mouth spray since his tongue started really drying out on him. but it has been progressivly getting less and less useful especially at night. I'm going to go get him some biotene spray first thing tomorrow and also check on the glycerine % in his spray vs the others out there. Good luck to all of you with this. ~Ija~
Ija wife-husband 47y healthy nonsmoker,nvr chewed.Dx SCC 01/05 primary left anterior toungue w/2 surgeries 02/05 no rad/chemo recurrence 12/07 no rad/chemo. 07/08/08 modified lt radical neck disection 3 nodes removed 2 pos SCC. TX 090808 taxol & carboplatinx7 radx37 w/ethyol.
| | | | 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 | Try him on the oral balance GEL from Biotene at night - it is thick and stays on the soft tissues longer than their spray or liquid.
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. | | |
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