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#70606 02-26-2008 01:42 PM
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I asked my dental hygienist today if I still should be using flouride trays every day. She said she used to think that it should be for the rest of your life, but know she is hearing different things. So she said it was up to me. What were you told about flouride treatments post-TX, and do you still use it and how often?
Also---anyone hear of, or use, MI paste? It's a calcium phosphate paste that you leave on teeth for 3 min. then swallow.
My hygienist suggested it as an alternative to flouride.


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
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I would like to add that for the first time ever, my dental cleaning included an oral cancer screening. Making progress!


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
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I like you were told by my dentist to use the trays forever. I will ask him the next visit if he still is on that plan. I wouldn't care one way or the other because it's pretty much part of my nighttime routine and I take them out right before I go to sleep. I also keep them on for 30 mins.


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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I wish I had some teeth to try it on. LOL and then try the teeth on some good food.


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 #70632 02-27-2008 04:12 AM
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Yep.. here too... lifetime

Now when I go to the dentists office they do not even offer to do a fluoride treatment, cause she already knows....

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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Sorry Jim!!
Wow, David--30 mins? they told me 5. It has also become routine for me, not that big of a deal. I was just concerned about the amount of flouride I would be getting over a lifetime, and if it was dangerous in any way.


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
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I can no longer use the stuff I got with the trays in part because the trays don't fit anymore (I had some teeth pulled right before rad and they caused other teeth in my mouth to move around quite a bit--long, frustrating story) but also because that flouride gel really feels like it burns my sensitive gums, tongue aand inner cheeks. So for a while I stopped using anything--which was bad--and then I've been looking for somehting I can use.

Right now I am using an over-the-counter moutwash that my senstive mouth can tolerate--ACT Restoring Mouthwash--twice a day instead of the recommended once a day. I think it helps do what the trays should be doing but is probably not enough. I am very careful to not swallow the mouthwash, and never swallowed the gel either, so I don't think the flouride you get should be an issue.

I'm planning on talking to my dentist more about this next time I see him. It's looking more and more like I will have this surgery this summer to release the trismus in my jaw which should help my dentist get in and see what's happening with my back teeth and maybe make me some new trays. I'm mainly having the surgery because of the need for better dental care than I can get with the limited range of motion I have in my jaw right now. But the whole thing seems neverending.

Anyway, I am curious to learn what other people may be using as flouride treatments since that would help in my conversation with the dentist.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Nelie #70710 02-28-2008 02:55 AM
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I was told to keep them on for a minimum of 3 mins but not to drink for 30 so I figured I would just keep them on for the whole 30. I used to do it first thing in the am but my dentist said switch to bedtime which I guess makes more since. Anyway he knows I keep them on for 30 and he hasn't said anything and I have never had any issues so I hope I'm not creating a later problem.


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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I was told I would need to use my flouride trays for 10 minutes a day (before bed recommended). Almost every day for a year I used them. The occasional time I did not use them, I brushed my teeth with the gel before going to bed (it was quicker). My teeth are in great shape and I lost only 1/3 of my saliva. I bet it's even less now. The oral surgeon who made the recommendation recently told me that 3 times a week was fine for the trays. He said they really are not sure how often they should be used, and I would do no harm by using them more. He tells people every night and hopes for three. Now I use them 3 times and generally brush with flouride on the other nights. I'm guessing if my mouth was dryer or my teeth in worse shape, his recommendation might have been different.


SCC, right tonsil, T1N0MO, G3, HPV-33 positive, 7 wks IMRT 2/21/07-4/13/07, 48 year old female when diagnosed, non-smoker, weekend wine drinker, tumor and both tonsils removed. Ethyol for 3 weeks; no peg; only minimal longterm side effects
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hi i hope you dont mind me jumping in but what trays????? no one has said anything to me about trays, i havent been using anything other than biotene tooth paste and mouth wash, i have an appointment with my hygenist in april should i ask?

thanks Debz


Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
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