Hi folks

I have a very dry mouth (salivary glands radiated) but through regular dentist visits, daily fluoride treatments etc have been able to keep my teeth healthy.

They do discolour easily though and I wondered if other members have a magic cure for that. I clean with Biotene and treat with gel-kam after my coffee in the morning and they feel and look clean and white but after a couple of hours they become discoloured even though I drink water constantly.

Season's greetings and love from Helen

As you know I had no radiation but hope someone here will come up with that magic cure. Having said that I do not think my teeth are looking as bright (would not call it white) as they should and will take it up with my dentist next visit
Love
Gabriele

Unfortunately, I can't help with the dry mouth, because I suffer from that myself and besides the biotene spray nothing else seems to work very well for me.

I use Gel-Kam regularly on all of my top remaining teeth. After continual use of Gel-kam a side effect of it is that it discolors teeth and the stains can only be removed by a clean from the dentist. I get my teeth professionally cleaned now every 2 months, and that removes any discoloration or stains from that treatment.

Karen

That is interesting, Karen. I didn't know about the gel-kam side effect. I have been using is daily for nearly 7 years. At present I go to the hygenist 2 or 3 times a year. Maybe I should be going more often.

Best wishes for your recovery, Helen

Same problem with discoloration here and I use gel-kam too. Mine look worse than they did when I was a 3 pack a day smoker. I hate it. I think it is the stannus fluoride vs the other kind whose name I forget at the moment. The stannus fluoride is suuposed to work better than the other one according to my fancy prosthodonitst. I get my teeth scaled and cleaned every two months by the hygenist and they stay somewhat white.

Take care,
Eileen

My dentist mentioned to me about the staining but there is a message on the Gel-kam box that reads:


"Provides protection against dental decay. Helps reduce plaque and gingivitis after regular brushing and flossing. This is a preventative flouride treatment gel, not a toothpaste.

IMPORTANT: This product may produce temporary surface staining of teeth. Regular toothbrushing may prevent these stains, which are not harmful or permanent, and may be removed by your dental professional."

I have only been using Gel-kam for about 18 months.

Karen

Whoops, it's the same old story!! READ the instructions!
Very helpful, thanx Karen.
love from Helen

Hi all,

My brother who lives in Turkey got tongue cancer(SCC) almost 6 month ago. thats why I did register here. I thought I could find some answers I have been looking for.

He had a surgery, neck dissection. and then he had chemo and underwent radiation therapy for six weeks. chemo was one day per week. He has been having a problem with eating and speaking.
but the most problem for him is SALIVARY GLANDS. saliva production has been droped within 1-2 weeks after starting radiation therapy. I can not tell how much dose of radiation he was irradiated. His doctor's says his salivary glands may not recover again.

My question is that there is any thing else to protect or recover Salivary flow. mey be there is some medicene or something else, I do not know.



Iwill be really glad if you guys help me.

thank you in advance

BIRKAN

Birkan,

There are many other factors that may figure into his side effects such as type of radiation (RT vs IMRT) and the path of radiation but GENERALLY a common side effect to his radiation is "dry mouth" and diminished taste especially right after radiation is completed. Again depending on those factors, most of us do recover a great deal of the saliva production and taste but it can take all of 2 years post Tx to recover as much as it will. For me it took a good 15 months before I was satisfied with my recovery. It's not 100% but if I had to guess I would say perhaps 90% back to normal.

Tell him to just be patient and see what happens. To my knowledge there is nothing that has proven to aid in the return of saliva or taste, otherwise we would all have used it.

My RO prescribed a drug Pilocarpine 3X per day. My saliva is returning pretty well. Don't know if the drug has helped or if it is just time.

Colgate Gel-Kam uses Stannous Fluoride (0.4%) which stains the teeth.

There are other products that use Sodium Fluoride (1.1%) that don't stain the teeth.

I started with a Stannous Fluoride product, but due to heavy staining was switched to one based on Sodium Fluoride.

I was told that either product is fine. Currently I use Neutra Maxx 5000 Gel, but there are a number of other brands available.

You might want to discuss this with you Cancer Center's Dental Group or OC Dental professional.

Acupuncture may be a viable option in some cases for some dry mouth.

There are a growing number of people in my local OC Support Group who think so and are receiving an Acupuncture protocol consistent with the one being used in the MDA trials.

At one of our recent local Support Group meetings Dr. Brummund from UCSD CCC told us that acupuncture is often recommended and used here at the US (Balboa) Naval and VA Medical Centers along with the (NIH) UCSD CCC (where he is a H&N Surgeon).

The link below contains info on acupuncture trials at MDA.

www2.mdanderson.org/depts/oncolog/articles/09/6-jun/6-09-brief.html

Researchers at M. D. Anderson have found that acupuncture made patients less likely to experience xerostomia�severe dry mouth�following repeated radiation therapy for head and neck cancers.

I am acquainted with Dr. Chambers at MDACC. Please note how careful he was in his quote about acupuncture's ability to improve salivary flow.

In the study, 19 patients suffering from xerostomia due to radiation therapy underwent twice-weekly acupuncture sessions for 4 weeks. The patients were then tested for saliva flow and completed questionnaires designed to gauge the effects of the acupuncture sessions on their quality of life. �Patients in the study had improvements in their physical well-being and in subjective symptoms,� said Mark S. Chambers, D.M.D., a professor in the Department of Head and Neck Surgery and a study author. �Although the patient population was small, the positive results are encouraging and warrant a larger trial to assess patients over a longer period of time.�

There were only 19 people in the study, which is microscopic in its scope and ability to draw conclusions from it. Also notice the careful use of the word "subjective" in his quote. And while he comments on measurement of salivary flow pre puncture, he does not mention a measurable improvement in actual flow post accupunture.

The problem with all the acupuncture studies so far in the US, is very few of them took the time to actually, in a scientific method, measure salivary production/output pre acupuncture and post. They relied on the patients "perception" that something was better. None of the positive studies ever claim to have restored salivary function, and the impact of placebo effect is heavy in most of them.

Agree with the treatment veterans above. Saliva glands may recover from radiation enough to produce sufficent fluid. Pilocarpine can stimulate remaining cells. Current research will soon provide a clearer picture of the effect of gene therapy on individuals who have not had a return of saliva nor been helped by pilocarpine. Dry mouth is still a big problem for many.

David,
thank you so much.
as I understood there is nothing for that. but Carmen mentioned about drug which is called ' PILOCARPINE'. what is this? do you know?

Carmen, do you think my brother should use it.

thanks,

birkan

I tried PILOCARPINE but I was not a good candidate for it. Every pore in my face and neck seemed to DRIP moisture - except of course for my saliva glands. I literally could have worn a towel around my neck. Not the desired result so we stopped use. Hope it works better for you.

Donna

I took Salagen which is the generic for pilcarpine for two years and I believe it did help with my saliva production. I started taking it at the beginning of radiation to help prevent the destruction of my saliva glands. I was on 5mg 3-6 times a day. I would perspire heavily for about 5 minutes about 30 minutes after I took it. If it gets unbearable, cut back the dosage. I think I only took it 3 times a day after radiation but that was a long time ago so I don't remember whne I cut the dosage for certain. He might try it for a month or two and see if it helps.

Take care,
Eileen

Very interesting posts here.

I will discuss with my dentist re Don's recommendation of using a sodium fluoride based product. Acupuncture is also something I will investigate - I guess it can't do any harm, even if it doesn't help with xerostomia.

Don, you are fortunate to have a local support group.

I wish my fellow members a healthy and peaceful new year.
Helen

The Colgate Neutra Fluor Sodium Flouride toothpaste that Don is using is available over the counter at the pharmacy and also at the warehouse Discount Chemist Shops. (usually cheaper than buying it at the dentist)

Karen

Thanks for that, Karen. Helen

Birkan, I would definately have your brother talk to his RO or MO about trying the Pilocarpine. Worth a try. I did not suffer any of the potental side effects. I am taking a 5mg tablet 3 times per day. They are not time released so they can be crushed if they need to be put through a PEG.

Carmen

Carmen,
thank you so much. we asked his RO and said he can use it. i was just wondering about side effects. but he will use it.
can i get this from any pharmacy? because in Turkey we do not have it. i live in Dallas so i can get it myself for my brother.

thanks
birkan

Side effects listed on the pamphlet included with the RX included burred vision, Jitters, Excess sweating, excess tearing and runny nose. There were others, but this is all I remember. I have the runny nose = but that is just an annoyance.

I had no trouble getting it at a local pharmacy. Good Luck.

I am searching it on internet and they require prescription.
Do I need a prescription to buy it from local pharmacy either?

thanks

Yes you need a prescription for it. Ask your RO. The only side effect I had was excessive sweating for about 5 minutes after I took it. This problem can be much worse in a very humid environment.

Take care,
Eileen

Sorry Birkan - I should have been more specific - I had no trouble getting it at a local pharmacy with a prescription.