hello everyone,

i'm here to introduce myself. my mother (age 60) was recently diagnosed with base of the tongue cancer (in october), here in south korea. she is stage 2 localized, with no spreading to the lymph nodes.

she's getting 6 weeks of radiotherapy (tomotherapy), and today was radiation day 9. starting yesterday, she noticed that her mouth is getting slightly dry -- dry enough so that eating bread felt uncomfortable. otherwise, no side effects yet... she's still eating a lot, and her throat or mouth hasn't started hurting yet.

one thing i am very concerned about right now, is her dental care. the national cancer center here is renown for its curative treatment, particularly it's radiation department. but they are not providing her with fluoride trays.

not only did her radiation oncologist not send her to a cancer dentist, but he didn't even mention dental care (and side effects) until i voiced my concern about her teeth last week. even after asking about fluoride trays, and requesting them, he was nonchalant, merely saying that "once her mouth starts getting sore, she won't be able to use them anyway, but if she wants to, she's free to start them anytime she wants." i assume he left it to us, to find a cancer experienced dentist.

i was under the impression that ALL head and neck radiation cancer patients should be fitted with fluoride trays before treatment starts, and use them daily, to protect against dry mouth tooth decay. has anyone been exempt from using them? is it necessary for all radiation patients? it is ok to start using them after radiation treatment? will the damage already be done if she doesn't start using them now?

i'm really worried that my mom isn't getting the overall care she needs, besides the radiotherapy itself. no one is checking her bloodcount. no one is telling her about the possibility of trismus. no one is mentioning any jaw or shoulder exercises, or planning physical therapy afterwards. no one is discussing pain medication, which will probably be necessary in the near future. i had to do all the research myself, most of my information coming from this amazing site, and the amazing people here on this forum.

and the fluoride trays are the last straw... shouldn't there be something done about preventative treatment for radiation side effects?

please help, i am so worried for my mom, and frustrated from what feels like the hospital's neglect.

soo.

Im so glad you have found OCF. We will help you with all this info. Its a god thing that you have started to do research to help yoru mother. I do not know what other countries offer in their cancer treatment centers so its not possible for anyone here to know if her doctors are following procedures. Best thing that can be done is to have an educated patient and caregiver. That way you can speak up and ask questions and insist that she gets what she needs.

Yes, your mother needs to find a dentist right away. She needs to get the dental trays and begin the flouride treatments as soon as she can. Even with a sore mouth, the trays need to be used daily. Radiation can do alot of damage to teeth. I used the trays but I still had problems and eventually had to have my teeth removed. Even though she didnt start out with the trays, she can still use them. Only time will tell if any damage has already been done.

She needs to stretch her mouth open wide and hold it for 7 seconds. Do the exercise 7 times in a row and repeat it & times daily. This will help her to avoid getting trismus which is no fun!

Her blood counts should be monitored if she is receiving chemo. As far as pain meds go, once her mouth starts to get sore it will be difficult for her to eat. Ask for magic mouthwash which is a combo of lidocaine, malox and benedryl. There are several variations for this medicine. She should swish it around in her mouth for about 10-15 seconds then spit it out. That will help numb her mouth long enough for her to eat easier. She also should start using pain meds if she begins to feel pain. Make sure she lets you know if she is uncomfortable. Nobody should have to hurt, it does not help the patient at all.

I wish you and your mother all the best.

I am going on 5 years post Tx. I started my trays 1 month prior to my concurrent chemo/rad and I still use them nightly. I had excellent teeth going in and I still do.

Hi Soo,

I'm from Perth, Australia. This topic is something that have been on my mind because I'm one who doesn't use fluoride trays. I enquired about it with my cancer dentist and she said I don't need them if I follow her instructions which are :
"brush and floss after every meal"
"use colgate neutrafluor 5000 plus toothpaste in the morning and at night"
"reduce sugar intake-which means no cakes, ice cream and soft drinks except for special occasions like birthdays"
I have been following her instructions and don't know whether it's the right thing to do or insists on the mouth trays. My dentist says she will be keeping a very close eye on my teeth and if signs shows that the above is not working then I think we will do the mouth trays. She too said that my mouth was too sore and sensitive to use the trays during radiation, and I tend to agree with her. However the majority of people on this website seems to use the trays even during radiation. I have checked up on my dentist and she actually does quite a bit of research on oral cancer and teeth. I dint know if she is right with regards to the trays, guess time will tell. I do think your mum definitely needs to see a cancer dentist who will keep a close eye on her for the rest of her life. With regards to things like physio etc, I too was not told about them. This is why it is so good you have joined this website so you can learn about it and make your own enquiries with the right specialists. I have learnt to not expect docs to tell you everything because they won't. I too had to ring around and enquire about everything myself. This is why it is so important for you to know as much as possible about this disease so you can make the best and informed decision for your mum. Hope all goes well with her treatment.

Minh

dear christineb,

thank you so much for getting back to me! i am having her do the 7-7-7 exercises. :-) i also ordered her the therabite system, just in case... my brother is bringing it over next week. she did start to sound different since a week ago, but she says it's because of her mouth sores... so i had her open her mouth, and she can still fit 3 fingers between her teeth. i am watching her closely, recording her speaking every few days, to see if there are drastic changes.

i asked about the magic mouthwash, but no one has heard of it. so i asked my dentist about that spray he uses to numb an area about to be injected with that gum-numbing substance before dental work... he said it's illegal to give it to me, and can't write a prescription. so i went onto amazon.com, and ordered something called "ulcerease". hopefully, it'll work...

but good news! i got her fitted with fluoride trays! i had to fight a war to get this to happen. it took some convincing, and begging, cooperation with my dentist, who is wonderful. he's not cancer experienced, but he did his own research, and is trying to help in any way he can. but soon, we will have to find a real cancer dentist.

thanks again for your advice, and your encouragement. she has 12 more fractions of radiation left! christmas eve is going to be particularly festive this year. :-)

soo.

hi minh,

thanks for getting back with your experience. it does make me a bit more reassured that there are dentists who prefer not to give fluoride trays unless absolutely necessary. it's great that she's experienced with oral cancer treatment!

my mom, unfortunately, doesn't have access to a cancer dentist right now. so i am going to have her do everything that can be recommended for preventative treatment regarding possible side effects...

2 weeks into the radiation, she noticed that her gold caps and fittings were starting to chip and peel away! if radiation can do that to gold, i am sure it will damage the enamel on her teeth... i also heard that radiation changes the chemistry of saliva, so in addition to dry mouth, that is an extra danger to the teeth.

the good news is that i had her fitted with fluoride trays, and have started her on the fluoride treatment starting yesterday. it took some convincing, but our regular dentist has been so helpful and cooperative.

for physical therapy, christine mentioned the 7-7-7 excercises (holding mouth open for 7 seconds, 7 reps, 7 times a day). i am having her do those religiously. and a therabite system i ordered is coming soon... i may be overdoing it, but still...

congratulations on finishing treatment! i see it's recent -- sept 10. :-) all my best to you and your continuing health!

soo.

hi david!

good news -- my mom started her fluoride treatment yesterday. :-) she is starting the fluoride halfway into her radiation treatment, but still, i think it's better now than later.

i also had her brush her teeth with a fluoride toothpaste until her trays were ready... hopefully, that helped a little too.

soo.

Soo,

Great job!!!

Without you Caregivers (Angels in all other languages) us patients would be in serious trouble!!