I am 5 weeks out of radiation treatment and my mouth is burning and very dry.I have tried salivart and it makes me nauseous and just recently bought stoppers 4 and biotene and they do not work.I can't eat,but I have the peg tube.I can sip small amounts of water.Does anyone have any suggestions? stage 2/3 tonsil cancer-6 weeks IMRT and taxoland carboplatin x2.

Roxs, Your condition is familiar. There are many ways to re-hydrate and comfort your mouth. Your rad-onc may have a mouth rinse with some lidocaine (sp?) that will quiet your nerves a bit. There are also some over the counter throat sprays that have some of that same ability - the relief is short lived but very welcome. Keep your water bottle near by at all times and hound your doc till s/he finds the right saliva aid for you. It gets worse for a while, then it gets better - lots better. Use your peg tube and keep forcing the calories in - your body needs the fuel. The first few months AFTER treatment were the worst of it for me. It DOES get better. You can do it. Be strong. Fight hard. Keep us informed of your progress. Tom

Thank you for your reply.I have the lidocaine which I use for the mouth sores but this dry mouth is very difficult to deal with. I received Ethyol for 2 weeks but had a severe reaction to it. It destroyed my mouth and I ending up in the hospital for 9 days which interrupted treatment. Guess I have to be patient But when does the dry mouth get better? Roxs

Roxs - That dry mouth issue is likely different in every single one of us. Your body is recovering from a very major trauma (treatment) and it will do so at its own pace. Put your energy into healthy diet, bits of exercise (walking?) and resting as much as you can. Find meds / habits / foods / beverages that give comfort while you heal. Get yourself stronger and your mouth will follow.

The healing can be really slow. Many of us worried that we weren't healing 'fast enough'. Some folks here have posted that they needed a month of healing for every week they were in treatment. I think my recovery may have been even longer. I am 27 months out of tx and I am still healing/improving a bit each day. Be deliberate in regaining your strength. A year from now you will be amazed at how much you have recovered. Be strong. Tom

My rad/chemo treatment lasted 7 weeks. 7 months past it will be the beginning of January. I am still fighting severe drymouth, painful tongue and mpith, problems swallowing. I truly hope I keep healing after that! Nelie

Hi roxs,with IMRT, your dry mouth problem shouldn't be too serious as I have heard from members here that most of the salivary glands won't be permanently affected. In my case, it is already 4 years post treatment and the mouth dryness remains a problem with me but it is tolerable. At least, even though I need to carry a bottle of water with me whenever I go out, I seldom have to drink the whole bottle to moisten my mouth. Chewing gums and candies help me a great deal. Swallowing dry food isn't difficult with small sips of water. Be patient and I am sure things will improve gradually.
Karen

Dear Roxs- this is fight time for you-my husband is almost 6 mo.out of IMRT and is having one heck of a time with mouth problems.[it is my opinion that he had his peg removed too soon] Our oncologist says "only time will heal". And that is what I have read from most of the people here. I guess you just have to be as strong as you can be and look forward. Wishing you strength.
Amy

Hello, Roxs. Karen is absolutely correct when she says those of us who had IMRT, including you, now, regained a good deal of salivary function. At 5 weeks I wasn't eating anything by mouth because it was still so burned and sore. The saliva will return very slowly. I remember very clearly the first time I licked an envelope! At one year you will probably not need a water bottle, and maybe sooner as we are all different. At any rate, you are on a normal track and it will only get better. Once treatment is finished, patience is in short supply, but it really is downhill from here on out. Hang on!

The general rule of thumb is one month of recovery for every week of radiation. It takes a LOT of patience.

Hi Roxs - My husband is three months out from tx and battles severe dry mouth constantly. Other than the salivart, you mentioned you are using biotene. Are you also using biotene toothpaste? I have personally started using biotene (dry mouth from medications) and was really pleased with the results. However, on a recent trip I used 'regular' toothpaste from my travel kit and was shocked at how much it dried my mouth out. The toothpaste plus the mouthwash does work. Biotene also has a gum. Ask your pharmacist (it's over the counter here in Arkansas).

One other suggestion you might try, we have a cool mist vaporizor next to Ken's bed (near his head). With the heat on now, the humidity in the house is very low and the vaporizor helps some. Keep drinking as much water as you can - small sips add up.

Don't give up. Just take things one day at a time.

Hello Roxs-sounds like my dad had the exact same complications as you (severe mucousitis-hospitalized-delayed tx) What worked for him was staying with the pain meds so he could eat and drink.
Are you still on any strong pain meds? My dad's mouth was falling off in his mouth. Happy to say that he is eating everything 3 mos out.
Be paient, keep with some pain meds to take the edge off-drink the lido. You will make it though this-it is amazing how the body bounces back. He was able to completely wean off the pain meds-
Stay strong!!

Hi Roxs,

The dry mouth issue affects us all. I have used oralgel, plus several other oTC products, none with much success. I had some luck with Evoxac which is a perscription drug. At the end of January, there wil be two new products I think may help. Neither has any side effects. They are Numoisyn Liquid and Lozenges. They will be available by perscription and your Rad Oncol should know about them soon.

Hope this helps.,

Steve daib

Hello Roxs, Search here for information on symptoms of oral thrush. Many get it as a result of the changes caused by treatments. One of the symptoms is a burning sensation.

MY husband has found the best relief from a product called oral balance.. it is a gel and has brought tons of relief from dry mouth.. especially at night so he can get extended sleep

I found the oral balance gel is the best thing to use at night too. I still wake with my mouth feeling like a cracked, dry desert though......

I really appreciate your sharing the information about oral balance gel. Is it over the counter or is it presciption? I would really enjoy being able to sleep at night without waking several times with s DRY mouth.Happy New Year!

Oral Balance gel is one of the Biotene products (over-the counter, not prescription). I've found it at Walgreen's and I think some other people on this site have found it at Wal-Mart. Probably some of the other major drug store chains have it as well.

Cathy

I am still without "SPIT", it appears that this is going to be a permanent condition for me according to my league of physicians. I am a VA patient and they send me a product simply called "Saliva Substitute". Manufactured by Roxane Laboratories in Columbia, Oh. On the label the list of ingredients, Sorbitol, sodium carboxymethylcellulose and methylparaben in a pleasantly flavored solution. I would argue the pleasantly tasting thing. But, I mix this stuff 50/50 with Biotene mouthwash in a little spray bottle, fits in my shirt pocket, and this works for me. I put my own label on it, "O.P.S." (other peoples spit). I got a wierd sense of humor.
Darrell

Darrell --

Have you tried either of the two prescription meds available --- Salagen and the newer one, Evoxac? As I understand it these won't work if you do not have *some* salivary function left, but if you do, maybe give them a try. Our dental onc says that Evoxac avoids many of the unpleasant side effects of Salagen (the sweats, for example) and our ENT uses it herself (she had radiation for a head cancer 15 years ago) and also endorses it.

Also, on another forum topic, a new product due out at end of January was mentioned:

ALIGN Numoisyn Lozenges
ALIGN Numoisyn Liquid.

These are prescription but as topical materials avoid side-effects of oral meds. Perhaps keep your eyes open for posts about this product when it comes out.

Gail

Darrell,

I also tried the Saliva Substitute years ago and I agree I'd argue the "pleasantly tasting" part of the label.

You still may find that the dry mouth lets up bit by bit over time. During my first couple of years after the end of treatment, my mouth was very dry, but as more time has passed (and with help along the way from Salagen and Biotene products), the salivary function has improved way beyond what I ever thought it would.

Cathy