| | Joined: Sep 2008 Posts: 49 Contributing Member (25+ posts) |  Contributing Member (25+ posts)
Joined: Sep 2008 Posts: 49 | Brian,
Thank you! I've got it written down and will be off to the store shortly. If this will help just a little it will make such a big difference for him.
I'd also like to thank you for being so wonderful and sharing your experience and knowledge with all of us. All of your advice and information is so right on. You are an amazing person and I feel so blessed to have been lucky enough to have found you and OFC. Thanks again Brian. Your an angel.
Sincerly, ~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: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | I found it interesting I went to a pharmacy and asked for biotene spray cause I found when I went out walking just water wasn't cutting it my mouth got so dry anyway he didn't even know what I was talking about. Yet I went to my normal pharmacy and she knew exactly what I wanted. This other glycerin and water now I will have to check that out cause the spray was expensive. I also asked the first pharmacist about difference biotine mouth wash and other mouth wash and he was speechless as well...
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Sep 2008 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2008 Posts: 49 | Brian,
OK, I found the gel you recommended. Now could you advise how best to apply it. Hubby tried to smooth it over his tongue with a small spoon. that didn't work well at all. His tongue ended up on fire. If he just tries to squirt it in his mouth it's just a glob that sits there and won't spread out or coat his tongue. ????
~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: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | I just squeeze some out of the tube onto my tongue - and then I rub my tongue all over the soft tissues inside my mouth. Everything gets coated. When I wake in the night, or have had enough drinks during the night for it to all be gone, I just reapply the same way. I guess you guys never ate cheeze wiz out of the can!!!! (It's a bachelor thing.) I use the liquid during the day.
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 | Brian,
heh,heh...Cheeze wiz! rofl. we'll give your way a try. Will be challenging for him considering he has a very short tongue now. He can't even touch his tongue to the teeth in the back of his mouth any more. Not sure if he can reach his cheeks or not?
~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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I guess I bettertry the Gel. It seems the biotene spray has lost it's effectivness and only lastsfor a minute or 2. The green bottle of biotene mouth wash is still doing it's job. Dianne, I think the difference in the 2 colors ofthe bottles is just the 75 cents LOL Gotta pay for that little bit of gold color they use.
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: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Well go figure who would have thought color costs...it is good to have a pharmacist you can trust for sure...mine tonight I talked to her about Biotene mouth wash and cheaper ones that have anti bacterial and no alcohol...and she stood by biotene saying in my position it was better to be safe and use what she considered to be the best...there are other makes a couple of dollars cheaper but she still suggested spending the little extra for it...
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | The green bottle has a protein in it that really cuts into bio films, which are necessary for plaque and calculus to form. I use it regularly along with the matching PBF toothpaste, especially at night. The blue bottle is the original formula, and it does not have this proprietary protein in it, but it seems to make my mouth feel slippery and all a lot longer. I use it a couple times during the day. Prevident 5000 Rx fluoride toothpaste right before bed each night, to try and protect things as much as I can. I use my trays about once a week.
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 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 | I brush my teeth about 5 times a day w/ Biotene and use the trays at night for 30 mins. I also chew the Biotene gum just about nonstop throughout my waking hours. This works for me.
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: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Wow I am glad all I have to worry about is gums cause have no teeth...I can immagine that would take a lot of work....I am just concerned with infection of my gums after my surgery...I am wondering once it is healed if I will still need the mouthwash
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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