larryb,

Thank you for the story and the reality check. The moral of the story is listen to everybody, try what you think they are telling you but do what feels comfortable. Got it!

My dental surgeon didn't mention flouride anything, my wife works for a dentist that gave me flouride toothpaste and told me to put no more than a pea sized amount on and brush for 2 minutes. I then sleep with the upper or lower occlusal guard because I have been grinding my teeth all night from my jaw muscle being so tight after radiation. I go through periods of teeth hurting and being sensitive to no problem. I use Sensodyne toothpaste, too. It is funny how we adapt to whatever it takes.

Ed

Fluoride is forever, ten minutes sounds about right, at night just before going to bed. Any other time and you are drinking water all day and rinsing it off your teeth too soon. I use the Biotene toothpaste because there is some validity in their scientific claims that enzyme replacement helps prevent caries and periodontal disease, plus it has fluoride and calcium in it. If you use a Rx strength fluoride toothpaste, Prevident 5000 from Colgate is one, you can substitute that for your trays a couple of nights a week, which I do because to this day the fluoride is still one nasty thing to put in your mouth!! Afterwards you should not rinse or drink for 15 to 30 min..... I seldom make it to the 30 min mark. By the by for those of you that are caregivers and may be taking antidepressants, please note that selective serotonin reuptake inhibitors (which they all are) cause mild xerostomia, as do drugs for diabetes and many other conditions. While not an acute form of xerostomia, Biotene toothpaste will help prevent problems while you are on the drugs.

Big team effort. Surgeon, Chemo, Radiation, Nutritionist, combo PEG specialist & nutritionist, Dentist, Home Care Nurse, Social Worker

I use Butler Protect Neutral Flouride Foam. This is the stuff the dentists use for in office flouride treatments. You will have to lobby them to give it to you. It is not available over the counter. It is pH neutral so it doesn't burn. It's a foam so you use very little and penetrates very well. It's mint flavored and doesn't gag you. It's a 5 minute treatment. It doesn't leave any unpleasant after taste either.

My trays costs 200 bucks and these are custom made ones. 400 bucks is a rip. They should be ashamed of themselves.

My trays were $1,050.00 each! Fortunately, insurance paid for all of it. I think I will also start using mine more frequently. Since treatment stopped, I have been very infrequent in use but will start using it more. I didn't have a team, per se, but specialists such as nutritionists, social workers, psychiatrists, etc, were available. I have found that the best source of information are the nurses. Usually when they are weighing me or taking blood pressure, they answer lots of questions.
Regards, Kirk.

My dental oncologist at M. D. Anderson said the flouride trays are indeed forever. He perscribed Colgate Gelcam (OTC and about 8 bucks for two tubes) 10 minutes every night after brushing and flossing. He explained that our syliva is about 90% water and a number of different compounds in the other 10%. That other 10% is all important in it's protective properties. Additionally, the radiation may have not only affected the quantity of syliva, but also the quality. The flouride trays are our best defense against dental decay that is often just one more lovely after affect of radiation treatments.

In answer to the original question in the tread: I had 4 docs during my treatment: An ENT, rad onc, med onc and dental onc. I also had a nutrionist as well as access to other services such as a social worker if I needed them. I was very lucky to have a great team.

-Brett

My goodness! I was never informed about "trays", nor flouride treatment, etc. My radio/onc said I don't need to see the dentist very often, only 6 monthly checkups. But I think I'll see my dentist next week as a few things are bugging me. PT? None recommended for me as yet, I'll do my own research. Don't see my ENT/onc till mid June. I use Biotene toothpaste, and now the mouth ulcers and thrush have almost gone I feel much better - they were the real killers for me. A lot of pre-preparation was learnt through this site, and personal research.

Thanks again.

Tizz

"Radiation: The Gift that Keeps on Giving!!!"

Dinah

Like Dinah said, the radiation is bad enough but it's the xerostomia will get your teeth also. Dry mouth and tooth decay go hand in hand. I have had great dental care for years, use the trays often and have still have had 2 repairs for crumbling teeth since the end of treatment. I'm also going in for cleaning every 4 months. Biotene is a great product, I use it myself, but it's not enough. Don't get a false sense of security.

Tizz - your rad/onc flat out gave you bad advice - he should stick within his specialty.

For those of us blessed enough to keep our own teeth, there is a price to pay and that is eternal vigilance and meticulous oral hygiene. Dental trays and regular flouride treatments, along with flossing, Waterpiks, perio-aids, toothpicks, Sonicare, frequent phophylaxsis, whatever it takes. Having to have an extraction, post radiation, can be fairly serious business. There are pictures on the site of ORN (OsteoRadioNecrosis), literally radiation bone death, that should you shock into the reality of this and why dental hygiene has to be a part of the "new normal".

I am one of those lucky ones who still have all the teeth kept in my mouth. I just went for a dental check yesterday and had two minor fillings. The advice my dentist always gave me is drinking more water to keep the mouth moist all the time, frequent brush and flossing after meals. I use Oral B mouth wash and don't know if it helps or not. I start using Biotene toothpaste but do not know if it is more effective than ordinary ones like Sensodyne I have been using for a long time.I go for a dental check every 3 months and a thorough clean every 6 months. Other than that, I have no idea what you all have mentioned about dental trays,flouride treatment,etc. Gary, if you don't mind, would you tell me in greater details of those terms you have listed in your post. You may email me at [email protected] if you think these terms are common enough that others here know very well. I seem very ignorant at this point but know well that our dental problem can get really serious if not taken care of . Thank you.

Karen