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#62089 11-18-2007 10:07 AM
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I am about a 1 1/2 years post radiation treatment with issues of dry mouth as well. I haven't tried acupuncture yet but I am considering it.

I rely on water and sugar free gum during the day. I can sleep through the night but in the morning my mouth feels awful! And yes, my speech sometime s becomes affected due to the dry mouth.

I have all my teeth but one thing I really have to do is go to the dentist for teeth cleaning every 3 months. The typical 6 months is just too long. too much plaque builds up from my dry mouth even though I am more diligent now about flossing than ever!!

I also have burning sensations in my mouth. It happens when I drink any alcohol (so I don't), pepper or hot spices and minty stuff. I can't use regular toothpaste. Biotene is all I can handle.

I don't mean to be a downer but to let you know what my experience has been like. I also tried Biotene products. They are good- but everything seems temporary- unfortunately. Overall, I've adjusted and hope that one day, it will be much better.


Female, 36 yrs. old. Stage 1 tongue cancer; no lymph nodes; surgery & radiation
#62090 11-18-2007 06:28 PM
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It has been four years and ten months since my surgery. My jaw bone was replaced with a portion of my left leg bone. Afterwards I had radiation treatments. Dry mouth is a problem at night and has been since I began radiation treatments. I have tried biotene products, warm salt water, baking soda and water,and Colgates peroxyl. The Peroxly works best if I use it before bedtime and in the morning after getting up. I have found it is most helpful in getting rid of the thick mucous that you get during the night. Now for the amazing experience I had. I am from Arizona and we have a very low humidity climate. This September and early part of October I spend in Northwest Arkansas. I did nothing different than the routine I do in Arizona. Ate the same type of foods etc. In about three weeks I noticed a big change in the feeling in my mouth. It didn't burn nor did my tongue tingle. Even taste became better. The only thing different that I can figure helped me was the high humidity. I was good until I was back in Arizona for about ten days and the ole symptums returned. Anyone else noticed any change with the higher humidity?


Hacklene
#62091 11-20-2007 11:01 AM
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I am 5 months out of treatment. I used acupuncture during treatment and have a few sessions since treatment ended. I had to chew gum alot at first, but now I am surprised that my mouth is no longer as dry as it was 2 months ago, and I no longer chew gum. I find that drinking water with lime or lemon kind of 'wakes' up saliva.


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
#62092 11-22-2007 09:49 PM
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My mother is about to complete 5 months post Radiation Therapy and has the same problems of extemely dry mouth, occasional mouth sores, thrush, complete lack of appetite..

I'd been researching on this forum for the specific after-effects and have ended up presuming that saliva returns latest. I'm not sure but looks like that appetite problems also relate to lack of saliva. I went to get my mother examined yesterday and the physician was quite articulate in admitting that the saliva might need an year to return but from the posts I read today, I suspect that 1 year is too less a time to expect (sigh!).

She has lost a lot of weight waiting for appetite to come back and she feels pukish after every (a little heavy) meal... honestly speaking, we're expecting the after-effects to subside within 2-3 months post RT but seems like that my mother needs to act a little more brave and be lesser bothered about the after-effects.


CG to Mother (Bala Saigal/55/SCC, G1, T1N0M0, RT x 33 completed - 27/06/2007 | Presently recovering from the severe after-effects)
#62093 11-23-2007 02:01 AM
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Arvind - Perhaps eating smaller meals and more often would help relieve the "pukish feeling". Always having water handy helped my son, too. He is almost one year post treatment now and still has to have water handy whenever he eats a meal and his meals usually include some kind of gravy or sauce to help food go down. The worst time for him were the 2-3 weeks post treatment and it was really difficult to get him to eat. He said that his throat felt like knives were sticking into it whenever he tried to swallow anything. I remember the day he actually managed to swallow 3 noodles with his chicken broth, it was a big celebration! It is difficult to have an appetite with sores in your mouth and throat or when you can't taste but it is important to take in some nutrition so that you don't lose too much weight or get dehydrated. My son did not have a PEG (feeding) tube but came really close too having to get one. Maybe you could ask your doctor about this if you feel she has lost too much weight. There are many good suggestions above so keep in touch. Things do get better!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



#62094 11-24-2007 08:50 AM
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See my post in Adjunctive Therapy .

Another option (recommended by my ENT), if you have any remaining salivary function is use of the OTC drug, Mucinex 1200. It works by thinning secretions, and can actually improve mouth moisture. NOTE: This is a large pill, so if you have swallow problems, it may not be for you.


Stage 3 SCC survivor, left tonsil primary (T2 N1 M0)
digtexas #70642 02-27-2008 07:27 AM
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Thanks for all your input. I've tried the acupuncture but did't notice any change. Don't want to try any meds that create night sweats. Been there, done that with menopause.I do have to say it is not as bad as it was in November; however, I do need water with me at all times. I can chew gum now (which I couldn't before, too spicy) and that helps when I don't have "hands" (i.e. walking both dogs). I read a story in People about children that can't eat anything because food can kill them and decided right then to get off my "pity pot". Just had plastic surgery to remove my "turkey waddle" and I can't wait to heal and get out there and show off, water bottle in hand!


Kristy N
Stage III SCC base of tongue survivor, 41 treatments IMRT, 9 treatments Erbitux. Completed 11/29/06. Ex-smoker, ex-drinker.
KristyN #70643 02-27-2008 07:33 AM
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Kristy,,
Welcome to the boards.

To add your signature...go to top of page..tab "MY STUFF" then MY PROFILE...scroll down and you will see a box where you can add that info.

Congrats on gettin rid of that turkey thing....now, get out there!

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
KristyN #70813 02-29-2008 04:35 PM
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Hi Kristy,

I am given to understand by my oncology dentist that it is not the quantity of saliva produced post-radiation that is the problem. Rather, the chemistry of the saliva produced is such that it no longer provides the protective function that it used to - hence the increased risk of cavities post-radiation treatment.

I asked my dentist many times whether I could stop my twice daily flouride treatments if my saliva glands produced enough saliva, and got a consistent "no" for an answer.

There is another thread on this subject, and hence different opinions on how much flouride to use, etc., but this is what I've been told.

Best wishes,

Chris


SCC left tonsil, 2 lymph nodes, modified radical neck dissection, IMRT (both sides) completed 10/25/06, Erbitux and Cisplatin weekly, Ethyol daily
ccw #70820 02-29-2008 10:45 PM
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Kristy, For what it's worth, I take the max dose of salagen and I have never had night sweats. I was very worried about that potential side effect when I first started it(not to mention one of the other side effects which is blurred vision--I couldn't do my job if my vision was blurred, let alone drive to my job) but salagen has next to no side effects for me and it does improve the amount of saliva I have. It's worth trying it before assuming that you'll suffer the side effects.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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