I need help! I just finished my 3rd week of radiation and I am beginning to get mouth sores and I have a horrible taste in my mouth. The doctor has given me Gelclair but I can not stand the taste of it. Does anyone have any other suggestions or home remedies for me?

My radiation oncologist gave me a prescription for Lidocaine (2%) in a viscous solution. I applied it as needed with a Q-Tip and it worked well for me. Maybe you can ask him about that.

Tim

Joleen, I got a version of that miracle wash from my ENT and from my medical oncologist I got something called "Carafate" that is used more commonly for stomach ulcers that I can either swab on specific cores with a qtip or rinse my entire mouth with--its soemthing that coats and reduces pain temporarily. I am using both of these--and rinsing with baking soda and water about every hour too.

I just finished week two of raidatoin and am having problems with sores already(but I'm having concurrent chemo which can aggravate things--what about you?)

While we're asking about mouth sores, though, mybe I can ask a question too which is right on my mind just now. Since I have suddenly gotten sores all over my mouth, inner lip and gums, it REALLY HURTS to do my flouride trays at night. Can I skip these at all until the sores go away? If not, how have others of you handled this? Just grit and bear it?

I had to skip my trays for a while. Are you using a pH neutral flouride? There's always pink magic. Which has various combinations of meds but is usually morphine, lidocaine and some other thing. It is a "swish & spit" and generally should not be swallowed. It should give you about 1/2 hour of relief. The other pain meds should hold down the fort the rest of the time. Using the pain scale of 0-10 (10 being the worst) you should be reporting your pain thresholds every week so they can keep adjusting your pain meds. You will need 3 types of meds - long term opioids, short term, fast acting opioids (for breakthrough pain) and a topical.

Some people have been able to rinse with a solution of saline (1% salt) and baking soda. Personally I couldn't do it - the salt burned too much. Make sure that you floss nightly. Use the braided floss and a babys toothbrush - it's much easier on the gums. Oral hygiene is critical thoughout this. I also used a water pick. There's not much you can do about the taste. Both radiation and chemo affect the taste buds. They will eventually recover.

I asked the rad. onc. today and he said skip the trays for a while. But I'll be sure to keep flossing. Can't be too luch to floss out, though since I'm mostly eating through the tube and everything else is totally pureed.

I have no idea whether the gel for the trays is Ph neutral....I'll have to check. I got a rpescriptionn for Gelclair today too that I will be able to get filled tommorrow. Thank God for good prescrip. coverage on my insurance. I hope the Gelclair taste doesn't keep me from being able to use it.Am haivng more nausea lately too.

Try Oral B Minute Foam for your trays...it is PH neutral, just as much flouride content and is easier to use.

Good Luck!

Weldon

Do I need to go back to my dentist to get that? I guess I probably do--probably needs a prescription

Nelie,

Yes, your dentist can get you a script. I'm told the product was developed for kids, but it really did the trick for me. I had mouth sores so bad at times during treatment that trays for my teeth were the least of my problems and impossible to do regardless of the PH. Anyway, I like it a lot better than any of the Gels.

Weldon

You can also use a Butler Nuetral Flouride Topical Foam. You will have to have your dentist get it for you. It is prescription strength and not available over the counter. The stuff I use is 0.9%. They make even stronger. I may try the Oral B stuff when my can runs out.

I went back and looked at what I have-- a 2% ph neutral gel. It must be developed for kids too--it's strawberry flavored (yech).

I got the Gelclair today and found the taste bad but no worse than the taste of some other stuff. I followed directions-swished and gargled all of it for a minute or two and the spit out and I found it soothing at first but 45 minutes later (as it has dried in my mouth) I'm in as much or more pain than before from the sores (they are all over my inner lips, the roof of my mouth and the back of my throat when I look in the mirror with a flashlight).

I guess maybe this pain is unavoidable. I have been giving myself liquid tylenol through the tube for it and it seems to make it more managable sometimes but not always.

Nelie,
Sounds like you need to address the pain relief issue first, there is no need for the pain to be so much. Ask the Docs to adjust yours meds.
Sunshine... love and hugs
Helen

Nelie, Your teeth will be fine if you skip the floride for a while until it feels better. Not everyone will have instant crumbly teeth if a treatment (or several) are missed. I personally did my treatments weekly at first and then only monthly for a while. I continue to get rave reviews from my dentist because my teeth are fine and I haven't done a floride treatment for over six months.

The real deal is to get to know your dentist on a first name basis. Be sure he/she is familiar with post radiation issues. I would recommend a monthly visit for the first six months until you know how your teeth are doing.

On the sore mouth, are you sure that this isn't thrush???

I asked the oncology nurse who gives me the amifostine every morning if he could tell if it was thrush. She topok a good look and said she was pretty sure it wasn't. My WBC is quie good--just had it chekced Monday--despite the chemo so far--so I shouldn't be especially vulnerbale to thrush just yet. But I have a checkup with the rad. oncologist tommorrow so I'll ask him his opinion too.

Question about thrush--does eating yogurt help control it? I heard yogurt intake can help control yeast infections at the other end. I ahve been trying to have some plain yogurt (several tbsp) every day because I know it helps good bacteria in the stomach and I figured it can't hurt the mouth either.

Since Mark mentioned it, have you read the web site section on Candida, or oral complications? It isn't always painful unless well developed, and is white in color. A very simple test to see if it is Candida (thrush) is to drag your finger nail across it. The white will come off. This isn't going to make it go away, just tell you what it likely is. You are going to need an Rx for Diflucan to get rid of it...about 7 days for a low grade case of Candida, one pill per day. You may have residual mucositis and for that right now most trreatments are acting on the symptoms and not the underlying problem. It has to run its course, but there is something to be said for relief of the discomfort.

Thanks for pointing that section out, Brain. i did go read it much more carefully than I had earlier (when it was all theoretical). The pictures there of mucositis looked like my mouth. Then again, the pictures of small white spots of candida also could have been what's in my mouth in acouple of spots. I'll ask the radiation oncologist if he can take a sample today during the exam. Perhaps if I get the guts, I'll drag my fingernail across first although that sounds painful.

The magic mouthwash I am using 4 times day has Nystatin and tretracycline in it. I assume that if I had thrush, that would help control it? I assume if what I have now is "just" mucositis, it will get a lot worse before it gets better since I still have two chemo treatments and 4 weeks of rad. to go so hopefully I can at lest find some relief for the discomfort. So far, the Gelclair seems to be helping a little more .

Yogurt is supposed to help but it has to be the type with acidolphalus (sp?).

yup, thats the type I'm using. That's good to know, Gary, because the yogurt has stung a little bit when I eat it lately. But I think I'll keep it up if it might help prevent thrush.

Since I saw the Nurse-practitioner in the med oncologist's office, lots of changes happened as to what else I'm using. I've put away the Gelclair for the time being and I'm using more of the Carafate rinse. I swab it on with qtips, especially on the inner lips and cheeks where I seem to have lots of irritation and I think it especially helps keep my lips from cracking and bleeding from the sores too badly.

I also have a new magic mouthwash I use 4 times a day without the benedryl (which would interfere with the strnger painkiller I now have)but with lydocaine that numbs my mouth and throat, so I can't eat or drink for 15 minutes after swallowing it, but it really takes care of the more intense burning pain and helps me eat for a while after the 15 minutes is up.

And I have some "oxydose" for pain that I take every 3 hours by dropper as needed. I haven't started taking that round the clock yet because I don't feel I need it all the time and I like having full use of my faculties to read, etc. sometimes(I'm also in the last week of teaching an online class and prefer to grade student work when I'm not on painkillers :-).

But the oxydose, I am finding, really helps me at night and I like that it doesn't last for too long because that means I wake up often enough at night when my mouth gets sore that it doesn't get as badly sore and dehydrated during sleep without me getting up and gargling, using the Carafate, etc (I also am using saline/baking soda gargle at least very hour or so when I'm awake and use it a lot when I wake at night).

I am still brushing with Biotene and a baby toothbrush after every time I eat anything, flossing once a day very gently and carefully but not using trays. I think I could use the trays without too much pain right after the numbing magic mouthwash but I am reluctant to do anything that would make the mucositits worse.

Right now this new routine seems like it's effective and not too much stuff to rememeber to do. Probably it will all have changed again by next week. I am starting to have some of the thick stringy mucous that i need to clean from the mouth once in a while but that has not gotten too bad yet.

I do have a humidifier next to my bed but I'm thinking of getting a second one to help even more to keep my mouth moist when I sleep. I really appreciate all the advice I've gotten here. Even little things like getting Puffs Plus tissue for wiping away mucous.

Nelie