Brian,

I hate to hijack the thread but what does help with the neck stiffness and constant cramping. I am really struggling in the radiated areas of my neck, particularly the left side that received the most.

Ed

Ed,

There's a recent thread on the General forum (topic: Hi all, almost 3 years) where there was quite a bit of discussion about ongoing neck problems and different people's experiences with physical therapy. Hope that helps.

Cathy

Hello,

Has anyone had implants for a full denture in a radiated jaw after HBOT?

Hal

I should mention also that the chance of ORN is about 10% and sometimes even occurs in patients that had all of their teeth pulled.

Jill the stuff I use comes in a can ready to use (just shake well first). It's called Butler 0.9% pH Neutral Flouride Topical Foam. Oral B also makes an equivalent and in more flavors. It only take 5 minutes for a treatment. They are both prescription. In the dentists office they use a 1.8% strength. This stuff is easy to use and won't burn because of being pH netral. Don't use the OTC stuff and tell your dentist to get into the 21st century - he'll have to order it for you.

From a dental perspective you want to avoid, at all costs, having any extractions in the immediate radiation field, particularly the lower jaw. You can NEVER take dental hygiene for granted EVER again!

Others here have gotten successful implants after HBO therapy.

Radiation sometimes kills the flap - at least that's what my H&N surgeon told me so the HBO probably wouldn't have helped. Actually if there are residual cancer cells left behind HBO can actually accelerate their growth.

To add to what Gary has posted -- our dental oncologist (who is an expert in side-effects of HNC radiation) also encourages chewing xylitol gum after eating. It is a known cavity preventative (reduces amount of sugars in the mouth) and the chewing stimulates the production of saliva, again helping tooth health. We use a brand called XyliMax, from Finland, availabel at dentists' offices. Barry has found it better than sipping water or in fact, almost anthing else if his mouth feels a bit dry.

Barry's regime similar to that of Gary, daily flouride trays, cleaning 4x a year, careful daily dental hygiene --flossing, brushing, Biotene products etc., minor "routine" fillings would be OK to have done by Barry's own (good) dentist as our dental oncologist is now comfortable with his skill but any serious work, such as extractions if he cracks a tooth would have to be done by a surgeon experienced in radiation patients and might well involve HBO treatment. They see less than 3% ORN in current HNC patients, possibly because they are mostly getting tomoTherapy and only back of mouth gets much radiation.

Gail

Hello all,
I am 3 months out of radiation and am begining to have some difficulties with my molars on the side that was heavily radiated, in fact I am in agony as we chat and I want these teeth (3) pulled, my dentist says to hold on as long as possible, but they need to go now, pain meds no longer help. I did not have any teeth pulled before radiation treatment, what should I do? What problems will I be looking at? anything has to be better than constant, severe tooth aches?
lenny

I take it that you did have a dental evaluation prior to starting treatment. You can't just have the teeth pulled. You have a very strong risk of ORN if you do that and that could result in losing your jaw bone. You will need HBO therapy first - at least 20 or more "dives".

They should be able to manage the pain. See your MO for that.

I kept all of my teeth and had no problems before, during or after (and I had the total amount of radiation w/boost).

You should get an immediate consult with your ENT or head & neck surgeon to determine what exactly is the source of the pain.

The reason they recommend pulling teeth has less to do with pain as much as it does with the stresses put on the teeth from dry mouth and decay and possible future extractions which could have serious complications.

Gail - thanks for the update on the ORN statistics - now I really feel good about my decision to keep my teeth (practically A.M.A. I might add). The key to it, I understand, is to limit the radiation through the teeth to 62.5 Gy or less. I believe that the targeted radiation, IMRT, 3D conformal and Tomo , sparing the salivary glands to a large degree, is the primary reason for the uptick in the numbers.

I second what Gail said about the chewing gum. My dentist also suggests having chewing gum after each meal and in fact, it can make my mouth feel less dry when I have one. I have no particular choice of which brand as long as it is sugar free and the taste is not so 'refreshing'. I don't know how much radiation is done through my teeth but I am glad that I still have 28 teeth with me. I have lost all my wisdom for many years already. Frequent dental check and extra dental hygiene before, during and after treatment are keys to keeping our teeth healthy.

Karen

Gary--

I recall what our denatal oncologist said when we met him prior to Barry's treatment -- "we never pull a tooth without just cause..." -- he said that "in the old days" (his words) "we used to pull lots of teeth before radiation but now we can prepare them better beforehand and also, we have more precise delivery of radiation AND better approaches for improving salivary function after treatment. He is a big fan of amifostine and of Evoxac. Last December he told us he had subitted a paper on radiation effects on oral and dental health to Lancet, but that they had "better print it soon" as things were changing fast enough so that it might soon be out-dated.

I know he told Barry that the tomoTherapy radiation field for his particular treatment plan (he had tonsillar and base-of-tongue, + two nodes) did not significantly impact his anterior oral cavity and only the very back teeth on one side got much radiation (and that not the full 66 Gy dose). Still, he did warn that serious dental work needed to be done by a oral surgeon experienced with radiation patients and might (depending on where in mouth) involve HBO treatment.

The gum he recommends is one of the brands which contain Xylitol and are made especially for dental hygiene. Ask your dentist about this...

Gail

Gail,
I whole heartedly agree with your dental oncologist, but like he says, not all of them are on the same page. Fortunately my regular dentist son, had recently gone to UCLA dental school, had a class on post oral radiation issues and loaned me his textbook. In spite of the UCSF dental oncologist initial recommendation to have ALL of my teeth pulled, later revised to molars only - sent all kinds of flags up! I had my own dental consult and have paid much money, out of pocket, for years for maintaining good dental health wanting to die my own teeth. Both of my parents had false teeth and there was NO WAY I was going there. My teeth are hardly perfect - I have lots of crowns, filings, etc,. but no gum disease (just the normal "long in the tooth" recession for someone my age). Your dental health is also a window into your general health.

I actually suspect the DO at UCSF wanted to use me as a demonstration lab rat for his students (it would have been done in the OR there). Screw them! Not every CCC is perfect - just because you are at one doesn't abdicate being your own advocate.

Many here have mentioned that the MOST DIFFICULT thing of their cancer experience was losing their teeth.

I have plenty of salivary function and my dentist is quite pleased with both my lack of decay and gum health (and plaque buildup). If you have no plaque - you have no saliva. For me, it was the correct choice. Of course if dental hygiene is not on your high priority list then maybe you had better re-think your strategy.

I bought some of the Biotene gum and the package sits up-opened. I haven't been a gum person since I was blowing Bazooka bubbles in my youth.

My RO actually recommended "Jolly Ranchers" (because of the tartness) to stimulate saliva production but those things are VERY high in sugar.

Last week I cut Coke (I won't drink "diet" anything -or anything with sugar substitutes) out of my diet, replacing it with Calistoga either plain or carbonated, unflavored water and other than the sugar and caffeine withdrawals I am over the hump now. I may be able to throttle back to 3 cleanings a year according to my hygenist.

I have already mentioned in other posts the extreme measures (or not so) I took so I won't repeat them here. I will say one thing - it didn't matter how weak or sick I was, I flossed every night, used the Water Pik after each meal and the dental trays w/flouride almost every night. I never once skipped over no matter how difficult it was. The same amount of determination to go PEGless I might add.

Occasionally I have an opportunity to visit Silver Spring, when I go to the FDA headquarters there, maybe Barry, you and I can meet up for dinner next time I am in town.