Hello,

This site is great and has really helped answer a lot of questions I had. I am 7-1/2 months out of Radiation and Chemo with radical neck dissection prior to treatment. I have no signs of the cancer thanks to God and great Dr.'s care. It has been tough and I thouight my tongue was so hammered that I might not eat normal again. Also developed throat strictures from radiation and had four procedures to re-open my throat. Amazingly I can now eat almost normally without pain and am sensitive to food with hot peppers, but can eat Texas BBQ!
Can anyone tell me if teeth are more subject to stains, as mine have darkened unusually the past week?
Also wonder if I can ever have a beer again without worrying about a recurrence. One of my Dr.'s says anything that bubbles could be a problem. Anyway, I am so happy just to be able to ask these questions.

SCC-base of tongue-Stage IV-Surgery, Rad & CHemo
finished 9/7/02

My name is Bob and have tongue cancer since 98.
Doctors want me to have implant radiation therapy. Do you have any insight or experience with this?I would appreciate any info. I have had 4 tumors and a partial glossectomy and flap plus right lymphodes removed. The thought of drinking beer is only superficial and leads to more pain and anxiety in the end. Somebody is benefitting from all this and it isnt me. Thanks and god bless

Bob,

I have heard of, but really don't have any experience with implant radiation. Mine was external beam (not IMRT)Radiation. Thanks for the reply and good luck!

wm3250,

Welcome to the OCF boards. Glad to hear you are doing so well in your recovery.

I am out of radiation since Jan. 02 and haven't noticed a discoloration of my teeth, yet. That doesn't mean it's not something that happens. I'm sure someone will come on that maybe knows more about this and reply. Have you used the sitemap and the search features in the body of the site. There is a wealth of information there.

As far as the bubbles thing - that's a totally new one to me. Never heard that before and I know we have had discussions on the board about drinking in moderation.

Take crea,
Dinah

You gotta love a real Texan...Beer and Barbeque!!...and we do have the best Barbeque in the world. I have tried a couple of baked potatos stuffed with chopped beef BBQ and have been able to get some down, but not too easily.
I am happy to hear of your improvement Wm, as I have had three dilations of the esophagus, can eat a lot of stuff now, but still have a long way to go.
Keep up the good work.

Danny G.

Dinah,

This may be just a stain... Probably no big deal, but stranger things have happened with this stuff. I will try the site tools as you suggested.

Thanks

Hello Wm
Teeth are definately affected. Thankfully I have not had any problems with my teeth. I have used an over the counter floride treatment (my dentist recommended) My suggestion is that you see a dentist about what is happening. Ask him/her if they are experienced in post rad. dental care. If not then see about a referral to someone that is.

Danny, thanks for the encouragement. I keep trying for Mexican food, but that is definitely too hot and would not be the same right now without a Beer! (Being a Texan, you can certainly appreciate that.) I'm hoping the Ethyol treatments for my salivary glands, that I did every day, are going to work for me.

Mark,

I am going to see the Dentist next week! He is going to check with some of his professional friends to see if the problem could be radiation.

Thanks

Greetings from almost sunny Cape Cod. My husband completed his radiation treatment for tonsil cancer in late August. His bottom front teeth did more than become discolored. They all but crumbled. Just yesterday he came home with his new caps. It was expensive and a bit uncomfortable but well worth it. He has his beautiful smile back again. Regarding beer, his
Oncologist encouraged it, to gain weight. Now he is really smiling. It is still tastes a bit "fizzy" he says, but somehow he is managing. He does well with eating, but spicy food makes him sweat. Good luck LM

Wm3250, I'm from the midwest originally, transplanted to CA then China. I can definately identify with the beer and barbque, the first stop on hitting U.S. shores is favorite barbque place, then the Mexican food. My oncologist, plus some of the written material from the cancer center sugget the occasional Guiness for calories and to help saliva. I know, Guiness and barb-que definately heresy, but there it is.

Mark, could you let us (or me) know the OTC flouride treatment the doc suggested?
Bob

Hi Bob, All this talk of beer and BBQ has got me thinking summer! (not easy when there is ice on the big lake) By the way Guiness goes with anything! The old ads for guiness used to say "Guiness gives you strength" so it might be a candidate for O.C. official beverage.

The floride treatment stuff I have is: Colgate Gel-Kam .4% Stannous Fluoride It is a gell that is applied with a tooth brush by dabbing (not brushing) then leaving on for 1 minute. I do this maybe once a month. It is a little harsh on gum tissues if you have very little saliva. I was able to get the product at a larger drug store. I believe there were other brands as well (I don't have their names)

I also have 3 month visits to the dentist for cleaning and checkup. (I think that we should all do this!) I really value the fact that I still have my teeth since chewing is difficult enough with low saliva and lowered tongue mobility.

Mark, thanks for the info. Will check some of the pharmacy shops here, and also ask the dentist.

Yep, the talk about barbque has me started too. I managed to get my grill shipped over when I moved, just need to get some decent sauce, and convince the butcher not to cut up the rack of pork ribs into little tiny pieces.

The wife's never tasted proper barbeque!

All,

I think I'm trying to do most things that used to make me feel "normal", and Beer/BBQ definitely fall into that category. I consume at least one or two non-alcoholic beers per/week the past couple of months. They do sting a little,(everything burned or stung just a couple of months ago) but have a great familiar taste! I probably will do the same with real beer again after more time passes. My wife thinks I'm crazy to do anything that could cause a remission right now...and who knows...maybe she's right. My Surgical Oncologist says OK with moderation, but Radiation Oncologist says no, at least not now. Anyway, I really feel like I'm in good company with all the BBQ fans out there! The search feature really is helpful on this site. I have found a number of similar shared expriences.

Thanks!!

Bob,
I suggest that you go to www.goodecompany.com, a website for one of our best local BBQ restaurants. You can order all kinds of sauces, rubs and other BBQ stuff online, and even order a real Texas pecan pie if you want!

Danny G.

Danny, thanks, I had'nt thought about the internet mail order idea. If they ship to Hong Kong I'm in luck.

Wm32509, I just remembered something last night that might answer your qestion about the teeth darkening/staining. We never really did get that one answered, but did find good barbeque sauce!!

Seems I remember something either written or mentioned way back that fouride has a tendency to darken teeth. Like some people who had fouride treatments, or live in places with fouridated water had a tendency to have darker/stained theeth than folks who don't.

Now this may have been back in the days when some folks thought putting fouride in the municipal water supply was a communist plot to poison Americans, I was but a young pup then. But I do mentioned one of my dentists a long time ago saying something about it. Doesn't happen to everyone, but may happen to some.

Or maybe I should sleep at night and not think of these strange things at wee hours of the morning. \
Bob

You are correct, Bob, both about the supposed communist plot (grin) and the darkening effect on some teeth. The "plot" thing surfaced again not too many years ago here, when the idea of fluoridation was presented to the voters. It was narrowly defeated, due in good measure to the same people who believed the great toilet paper shortage...
Joanna

Sorry I didn't mention that on the label for the Gel-Kam Floride treatment it mentions the possibility of staining. It also says that if it happens it can be removed by a dentist. I personally have not experienced staining. I would still have ANY changes in teeth checked out.
They are worth saving!

I just saw the Dentist and had my teeth polished. We can say the teeth are not as "stained", but still have a dark-purpleish tint. Anyway, he doesn't really know, but seems to think it could be from the Nystatin that I rinsed with for several weeks, at my Oncologists suggestion, to help my mouth heal better. I did use Prevident (similar to Gel-Cam) Flouride treatment only once just prior to noticing this effect, but that one use should not have caused the problem. I should use the Flouride Gel every night(and will from here on) to prevent cavities, as a lot of you know, but it has stung too much in the past and I have been too lazy lately to use it. I guess it all will remain a mystery for the time being. At least my teeth are all still there at this time!

Bob, I do appreciate your worrying. At least your gonna get some good BBQ Sauce out of this deal!

I do appreciate the help

I have a question. My husband was just diagnosed with scc of the tonsil, stage 2. He started radiation (7 weeks) last Thursday. Both Dr's, ENT and Radology Oncologist, have told us he shouldn't drink alcohol again. RO said it was okay 3 to 4 times a year, one glass, for a special occasion.

So, is alcohol okay or does it depend on the type of cancer or the Dr?

Thanks,Kathy
(sorry to not talk about teeth, but you all were talking about beer and it got me to thinking)

Hello again, Kathy. I am really not following you around (grin). About alcohol, my radiation oncologist said an occasional drink will not hurt. It was over 100 degrees today and for the first time in well more than a year I had an ice cold beer, I think just to prove I could. It tasted really, truly great, but I don't think I will do it again. If giving up that one thing will tip the balance for my long-term survival, I won't miss it. As there isn't a lot that I can do in that regard, I have decided that at least I can do this. I think the jury is out on whether or not even a little alcohol is harmful, which I guess means it is up to each patient. Not a lot of help, am I?
Joanna

Kathy, My husband finished his radiation at the end of November 2002, and to this day - he can't drink any alcohol...simply because it burns too much! The doctor never told him he couldn't drink - but when I gave him a small glass of beer - he couldn't drink it because it felt like fire. My husband never was a drinker - his beverage of choice is diet soda - but I know every now and then he would like to enjoy a beer with me or share some wine, but alas- for now, he can't. Hopefully in time this will pass and he can enjoy a good cold one every now and then!

I had two beers with dinner a couple of weeks ago and they were great! I did have some stinging, but not any more so than the non-alcohol variety that I drink from time to time. It is very frustrating that the Dr's don't seem to really know anything for sure about drinking alcohol except that it is a cause/catalyst for SCC. I have been told that it is ok to drink moderately, but perhaps not until after my second year of treatment passes. I have also been told not to drink at all! I guess it is better to err on the side of caution until further notice. It is a blessing just to be alive, but it is also human to want to enjoy things that life has to offer. I hope that research will get more answers to this and more importantly find a cure for this cancer soon!

Will carbonated drinks do that as well after treatment is over? Or is it just alcohol? What other things will be way off or does it really depend on the person?

Kathy, if you are asking if carbonated drinks are a causitive factor for oral cancer, the answer as far as I have read is a resounding NO. If, on the other hand, you are asking if they sting, yes, and for how long is an individual thing depending on how much radiation, whether there was also chemo, whether there was surgery, and just individual rates of healing and tolerance. And if I misunderstood your question entirely, please accept my apology.
Joanna

Hi Kathy, I agree with Joanna, as far as I know, there was no mention about carbonated beverages being a risk-factor for oral cancer, although one could get into a debate about the aspects of "artificial sweeteners" in diet beverages/foods that some say could lead to forms of cancer. I know topics such as this has caused much conversation in the past - and I don't want to rehash that if possible. Anyways - getting back to your question, carbonated beverages WILL sting for ahwile, at least I know it did for my husband while he was going through radiation and for a good 2 or 3 months afterwards. Now he is going on 7 months post-radiation, and MOST soda's don't bother him now -except for a few every now and then. It's also weird because sometimes he can tolerate certain spices and condiments like ketchup but other days - it still stings. It's a mystery to me. But like Joanna said, everyone heals at a different rate - so only time will tell. Good luck and sending best wishes and positive thoughts your way.

I was referring to carbonated beverages after radiation with stinging referrence only - not causing cancer. Thanks for the info. My husband isn't wanting to read anything about all of this and he doesn't know what to expect in many ways. So, I am checking things out and I will at least have some idea as to what might be next etc...his attitude is, if he knows too much he might think it is happening to him (he has done that in the past). He is only 40 so he has a, "okay I have it, now let's have treatment and be done with it." That's great he has that attitude -but,he still has no idea what could possibly lay ahead. I am sure I will worry enough for the both of us, but I do try and let it go too.

Thanks for the info on alcohol and sodas. I might be asking a few more questions if I think of them.

Kathy

The mystery is actually pretty simple. Once xerostomia takes hold and chronic dry mouth is a problem (particularly in the first 12 months after treatments), the tissues in the back of the mouth and throat become chronically dried out. These soft tissues develop microscopic cracks in them, not visible to the naked eye, that are the source of all the discomfort when spicy, acidic, or carbonated things come in contact with them. Depending on the degree of moisture remaining in our mouths these are a big problem, or a little one. It

Brian, everything you say is correct, as you know from your own experience. This situation is somewhat different for people who receive IMRT, though. In my case, I can drink wine (although I have given up alcohol), eat salad dressings and enjoy citrus fruits. For all of which saying that I am extremely grateful doesn't begin to cover it!
Joanna

"My name is Bob and have tongue cancer since 98.
Doctors want me to have implant radiation therapy. Do you have any insight or experience with this?I would appreciate any info. I have had 4 tumors and a partial glossectomy and flap plus right lymphodes removed. The thought of drinking beer is only superficial and leads to more pain and anxiety in the end. Somebody is benefitting from all this and it isnt me. Thanks and god bless"

I think we all missed the important question on this thread. I'm not familiar, so if someone else is, please reply.

Mandi
--------------------------------------------------------------------------------

Mandi, when Bob originally posted, I asked another member of this forum who had implant therapy to reply to him and she did, so he had his questions answered. But you are very correct that this thread has meandered far from where it began.
Joanna

I'm sorry....I didn't catch the wave. Sorry. I just wanted to make sure that his questions were answered. :rolleyes:

Several people mentioned to me that Bob was responded to via email. But herein lies the problem...People with new ideas need to start new threads. With all that I have going on, I am not very diligent about closing threads to prevent further postings when the idea is done. Invariably some new person comes to the site that is unfamiliar with how message boards work, and their important question gets put at the end of, (and eventually in the middle of) someone else

Like Joanna, I also had IMRT and I am able to eat (or drink) mild salsa, mayonnaise, some salad dressings, coke, and a cranberry with fresh lemon and seltzer, after only 80 days out from treatment. I find that the carbonation helps to clear my throat and also helps with swallowing which has not been the same since treatment.

Brian

I will take the heat for getting this off track. I am not used to this type of forum at all, so I don't know the "rules".

I asked about the alcohol because someone metioned it. How do I get those to respond when it pertains to that subject, such as the question alcohol. How do I get those who were talking about it to respond to me if I go into new response area - how will they know where to find me? I started a new subect matter with "treatment questions but haven't gotten much response")

Please send me in the right direction.

Thanks, Kathy

When you post a new thread it comes up on "today