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mouth sores post radiation

TBOB
Posts: 19
Joined: Sep 2010

Currently using baking soda and water rinse, magic mouthwash from pharmacy(lidocaine), biodyne mouthrinse and gel, diflucan(yeast) and my tounge is still killing me! any suggestions?

D Lewis's picture
D Lewis
Posts: 1546
Joined: Jan 2010

Time. It eventually heals all these sores. How far out are you from end of radiation? A certain amount of pain is to be expected, post radiation.

Healing thoughts.

Deb

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

My daily rinse consisted of about 1/3 cup water and a tables spoon of baking soda and a few tablespoons of hydrogen peroxide.

Everyone is different, but I had no mouth sores...I did have a sore mouth and throat though, but only when I swallowed...:)

Best,
John

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I would try the L-Glutamine if you haven't tried it. You can buy it at GNC. I think it works. Some linksf to read about it if you like:

ARTICLE ON BENEFITS OF GLUTAMINE

GLUTAMINE

ARTICLE ABOUT GLUTAMINE AND THE PREVENTION OF MUCOUSITIS IN BMT PATIENTS

One heaped tsp in a glass of water. Swish and swallow.

Ron49's picture
Ron49
Posts: 91
Joined: Dec 2010

Sweetblood, You are a wealth of info and I just wanted to say thanks! I am 1 chemo and 8 rads of 34 in and have used the info you compiled or the links to be prepared for all of the side effects. This is so helpful and there is no way I would have known any of this if not for all of the great feedback I get from here. Any help is so appreciated! Thanks to Jimbo also for the paste recommendation. I will talk to my dentist about this! You guys are amazing!
Ron

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

It is my goal to better prepare people that have to go through this. I wasn't as prepared. Wish I found this site before I started rads. Everyone here is a wealth of info. I just am trying to stick it all in one spot. :)

postie65's picture
postie65
Posts: 12
Joined: Feb 2013

Not sure if others experienced this but when I rinsed aand/or swallowed L-glutamine the chalky consistancey coated my throat andmade me choke. I rinsed mymouth with flat club soda and that seemed to help clear my throat. Rinsing with Biotene helps to heal sores because it has similar enzymes to saliva. It wont happen fast tho. 

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

Baking Soda and Hydrogen Peroxide and a ruff ride to the end of treatment

All the best to you
Hondo

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

this may sound weird, but when I started brushing my teeth four or five times a day with biotene, my sores healed up much faster...it hurt really bad the first couple of times, but it really seemed to help, along with the rinses. good luck...wish I could offer more help!

Clearblue
Posts: 188
Joined: Apr 2010

Many of you folk are taling about mouth sores after RADS.
WHAT??!!
"we"re 8 days of planned 35 into RT and she has mouth sores and her throat hurts, specially when eating. So ure saying its from now on and beyond?!?

THe Onco nurse sugested OXCYCOT fro pain, But she declined (opiate) for now, so early on.
So in retrospect how effective was all of the below?

Looks like the main 4 ive read on this site are :
Bicarbonate+/salt/+peroxide
Magic mouth wash (different types depend on where u buy it)
Biotene products(which i understand as being more for dry mouth issues? right?)
glutamine - (How soon has this wirked for those whove tried it?)

Also her voice has almost gone to whisper.
and she has a bit of a wheezy , phlegmy cough.

In admiration still
Clear

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Clearblue, it can take a very long time for the mouth to heal up after radiation.
I would use these products from the start. None of these things are going to keep the mouth sores away, but they will all help a little. Not using them it would be even worse.

Don't forget the radiation side effects do not peak until two weeks or so after the radiation stops. It is a very rough ride for about four to six moths. Was longer than that for me.

Please tell your wife to take the pain meds if she needs them. "too early" not with standing. There is no reason to suffer more than necessary. She will need her strength and sleep, pain disrupts that. Pain also is easier to manage before it gets totally out of control.

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Hi Clear,

My mouth sores totally disappeared about 2-3 weeks post treatment. I didn't have a severe problem with them. I used the baking soda/salt & the L-Glutamine. Thanks to Scam, I began using the L_Glutamine early on so cannot say how fast it worked.

My dentist gave me Solcoseryl, which is dental paste. It worked wonders on the mouth sores. I only had a few sores overall and it helped to clear up most, though I had 1-2 persistent ones. After applying the paste to the mouth sores the relief I felt from the pain was almost instantaneous and it lasted for hours. Cheers

Jimbo

connieprice1's picture
connieprice1
Posts: 299
Joined: Oct 2010

Clear, My wife's speech therapist told us that the cough you are referring to can be caused by water going down the wrong pipe. The danger is if water is contantly getting into the lungs it can cause pneumonia which would be a really bad development for your wife. She told us that there are products made with nectar that will reduce the risk. It is available over the counter at most drug stores. The nectar thickens water and reduces the risks of splatter and although it changes the texture, it does not change the taste. I just wanted to warn you that this can be dangerous as pneumonia would postpone your wife's radiation treatments. I am sorry to hear she is having such a rough time so early in treatment and I will say a prayer for her tonight. Good luck, Homer & Connie Price

Clearblue
Posts: 188
Joined: Apr 2010

Can u get me a name of one of those nectar products.
We know that, and some time back she unfortunantely landed up in intensive care. A she has had two partial larengectomies, unfortunately youre right , she is suseptible to this.

How long does one stick to a certain "remedy"?
Like if it burns like hell, throw it out. or let it burn like hell and stick in there for a few days or so before trying the next one.

I fell that i really need to apologise to all my good friends here.
I read the posts but just dont get round to responding. I know you all are as eager to get responses as i am.Each time i dash into the computer room, do a quick read, write and dash out. Just cant seem to get the sitting time to respond in kind to all of you.

Clear

connieprice1's picture
connieprice1
Posts: 299
Joined: Oct 2010

Clear, I do not know the name but I will call the speech therapists and ask her. My wife declined when the speech therapists suggested the Nectar. Of course things are changing daily and my wife needs the Nectar products whether she likes it or not. Hopefully the Nectar products will enable Connie to drink more liquids. I will check on this tomorrow and get back to you. Homer

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

Tell the wife not to be afraid to take the pain meds when she needs them. From what she is going through sometimes she needs a little help, the Dr can help her get off of them after treatment is completed. Keeping you both in prayer my friend.

Hondo

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Like HONDO said, take them if she needs them.

More than likely she won't have any problem not taking them after she doesn't need them any longer. Usually when taken as directed and for pain it's not a problem. I took drugs ranging from Percocet, Hydrocodone, Oxicotin, and even Liquid Morphine (Roxynal).

My chemo MD, told me, "what ever you have a problem with, let me know, I have something for it" and she did....

Even worse case, you need to survive the treatment frst, deal with an addicition after the fact.

Dawn (LINK QUEEN), there's a new one for you ITALICS, and BOLD...LOL.

Thoughts and Prayers,
John

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

You realize I still have no clue how to make a link. I just use the template you made for me every time. :) Plus you did color. Lol.

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

LOL, I got so carried away telling you about the Italics an Color...I spelled BOLD instead of COLOR, LOL....

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Oh. Lol. I see. :)

DominicM's picture
DominicM
Posts: 18
Joined: Nov 2010

I'm now two weeks post radiation (35 treatments) and 4 weeks post chemo (3 rounds cisplatin)43 year old male.SCC, BOT, met to neck, HPV+
A week post rads my tongue would sting/burn no matter what I tried to eat or drink. This only lasted a few days and now only stings in one area which I noticed a blister. I have been experimenting with all kings of food and drinks to see what i am able to tolerate....spicy things are the worst. Also I have new small blisters coming and going daily which also sting but not so bad. (FYI...no peg, lost about 8 lbs)
I have not been taking any meds (but do have a lot on standby just in case), just toughing it out and eating as much as i possibly can. I have no pain swallowing but some days it does take a small effort to swallow and some days there are no problems at all.
The first week post radiation I was secreting large volumes of thick ropey mucous from my mouth that lasted about a week and my mouth does get a bit "pasty" if I go too long without eating or drinking.
There seem to be a lot of "scare tactics" about having sugar due to thrush but I am taking calories any way I can get them. I got thrush after the last two chemo treatments but it cleared up fast each time.
Biggest issue for me is taste, or lack thereof. It's coming back a little bit everyday and I can taste most things now about 1-5%.
Although i did see a prostadontist for an original consult there was no need to follow up, but of all the docs I've seen the prostadontist seemed by far the most beneficial person to speak with relating to mouth and tongue issues due to treatment.
My medical and radiation oncologists and nurses see me every single week and just tell me that things take time and that everyone is different...I'm getting tired of that line, there is a wealth of knowledge on this site and others that have helped me volumes more than my docs.
So my philosophy has been to just keep experimenting with foods and drinks to find things that dont hurt/sting/burn and to just keep toughing it out one day at a time. The only thing I've been taking for the past 3 weeks now is a daily multivitamin and I have been using biotene mouthwash.
Although I have been eating basically everything these days, at first I found that oatmeal, frozen yogurt (ice cream would sting my tongue)and carnation instant breakfast did not hurt/burn/sting to eat. One site even suggested cold flat mug rootbeer which did work fine for me. Anything else that had a mild burning or stinging effect on my mouth I just chased with water.
I think that I got through the treatment better than most...no peg, no pain swallowing, lost less than 10 lbs, no loss of hair, no fatigue. My neck skin did peel away once but very similar to having a sun burn so nothing I wasn't used to and most of my facial hair stopped growing except for the areas that were protected (salivary glands and voice box). The worst for me has been the taste changes that have led to loss of appetite and also the last month of treatment I always felt like there was something caught in my throat so i woke up a lot at night coughing/gagging.
I have been able to stay extremely positive with all the help from this site and the statistics that say that this illness can be beat, I think that has been the best medicine for me....staying positive.

D Lewis's picture
D Lewis
Posts: 1546
Joined: Jan 2010

Dominic

Welcome to the site, if you haven't been formally welcomed yet. Thanks for your informative post. It sounds like your positive attitude has really helped you through this process. You're whining a lot less than I did when I was at that stage of the game.

I'm SCC, BOT, mets to both sides of neck, HPV+ and nine months out from treatment. Taste is back for me. I think you will be pleasantly surprised about how quickly it returns. The doctors really couldn't shield my salivary glands, so the return of saliva is a lot more slow for me, but I'm still improving. Here's to great health and a cancer-free future!

Deb

Deb

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I think you are doing exceptionally well!

The flat Mug root beer does work. That was all I could drink for quite a while

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Dominic, Sounds like you're doing great. My first pizza several weeks post treatment smelled so good but tasted like cardboard. One bite was all I could manage. 6 months later and the pizza tastes great. I believe your taste will improve sooner rather than later. I began to notice improvement after about 1 week and it has been a steady progression since. Cheers

Jimbo

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

I echo the welcome Deb, Sweet and Jimbo have extended, and great to hear of your Positive handling of C and treatment. Excellent.

I also echo John and Hondo's contributions to this thread. For me, Hydrocodone was with me all thru treatment (got 100 pills/prescription), except when the Morph became necessary. I didn't have trouble getting rid of the Morph, but must advise that is probably because I didn't care for where it took me, so I didn't like the stuff. Would advise to not be wary of the pain meds, as they can also do good by reducing the stress the body experiences.

kcass

Clearblue
Posts: 188
Joined: Apr 2010

Hi

She is now 14 days into rads.inside cheek sores, lips and tounge.
Her chin is red and lip, speacially bottom one is like blistered. Did u use the aquafor for the skin. Does it actaully help?

Wish we could find something that actually anaethetises her mouth so that she can eat.
For first time today, she said that she has a terrible taste in her mouth and also that most of the food burns or tastes bad.So eating less. The eating issues is worrying, just wish i could find something that would be palateable.

She also asked me for first time what you guys say about this.
Her breathing , has taken on a wheezing sound and she coughs alot, possib;y from phlegm or just swollen inside throat. So her sleep is disturbed.

Got some of the MI paste. Is this like a flouride type mouthcare product?
It reads like this?

I wonder if its ok to use biotene stuff, eventhough she doesnt feel that she has drymouth?

This is so familiar to all of you, i know.
Cant imagine that if this is the dynamic, what each week will be like and how much shell be compromised.

Hondo, SWEET, Deb,Kent, Rat ,Ekden,Jimbo,Connie,Sabrine
Keep on posting, and personal tnx

Clear

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

You can get the thickener from Resource (Nestle) - it's called "ThickenUp" and comes in packets that you mix with 6 oz of liquid. Doug didn't really like the texture but it did seem to be easier to swallow for the day or so that things were going down the wrong way.

He also wheezed and coughed a lot, from the "thick saliva" - when he was really dehydrated and unable to take his spit pills, this was very bad. He coughed and spat rather than swallow for many weeks, but it did keep him from sleeping well.

I was very worried about aspiration pneumonia because he really couldn't swallow well and had the wheezing. It turned out to be not much of a problem, but neither of us slept well during those times.

Biotene burned - Caphasol seemed to help the most for the mouth sores. It seemed like forever at the time, but he got better very fast after the radiation stopped.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

The magic mouthwash or magic swizzle will numb her mouth. It is prescription. It's benedryl, maalox and lidocaine. The Biotene will probably burn her mouth. Aquaphor does help, I had a perscription for Radiaplex and I think it was better.

I had blisters on my lips too and then the dang mask stuck to my lips and when they took the mask off it ripped off some of my lip. :/ Not good. We then put Saran Wrap on my lips before putting on the mask so that it wouldnt rip off my lip and keep making it bleed.

Clearblue
Posts: 188
Joined: Apr 2010

Her parched lip has very superficially startd to bleed and looks like skin on jaw might be headed in that direction too. Does she just continue to put these creams on it?
Also ive heard from some that goats milk is good for mouth sores? Anyone got a goat?
Clear

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

I think Dawn has a few in her immediate vicinity...;)

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Omg! You are so bad!! Very funny. I feel slightly guilty for laughing out loud. Now I am coughing and cannot stop.

Clearblue
Posts: 188
Joined: Apr 2010

"spit pills"?
Clear

Clearblue
Posts: 188
Joined: Apr 2010

Ive read sporadic articles on propolis mouth gel for mouth sores,
but cant seem to find a brand of the stuff anywhere.
see article:

http://www.associatedcontent.com/article/6052578/a_new_natural_mouth_ulcer_gel.html?cat=70

akbear49's picture
akbear49
Posts: 50
Joined: Jul 2011

I completed my 35 radiation treatments 7 days ago and my 3rd and final round of Cisplatin 14 days ago

I have been gargling with salt and baking soda for the entire treatment phase and that seemed to work quite well keeping my mouth and throat from ever getting too sore. The Biotene mouthwash seemed to make my saliva thicken and I really didn't care for it.

Now I have mouth sores and an earache which brought me here. Wish I had found this site earlier. It seems like the medical community doesn't share a lot of their knowledge with you unless you ask a specific question. I suspect it is because we are seeing so many care providers they all just assume someone else must have already told you.

As far as eating goes, I gave up on any solid foods about a month into treatment, everything I tried to eat tasted the same, like crap. I quickly developed a very salty taste in my mouth that persists to this day. I can still taste foods but the salty taste quickly overwhelms any taste and turns the food into a ball of crap that my stomach signals to me "don't send that down here or its coming right back up"

My "meals" now consist of Carnation Instant Breakfast fortified with protien powder, Ensure, some consomme soups, and a special coffee that I add syrup and flavorings to jack up the caloric content - I've lost 16 pounds so far ( I started at 217 ). I also drink flat ginger ale to ease my stomach.

My tongue burns too and I rinse my mouth out frequently with just plain water - seems to help a little.

One last comment - by my 2nd round of chemo I had decided to take my anti-nausea drugs ahead of symptoms, that is, I didn't wait to feel nausea I just assumed I would and took the drugs faithfully for a few days. It worked for me.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Salty taste. Yep. I had that too. I am over two years out, and I still avoid salt and packaged foods because the salt content just makes it inedible.

Biotene could still be too strong for you. It took me a very long time before I could use it. Actually it still burns, but it is doable.

Not sure if you have ever heard of l-glutamine. There is research to support that it helps with mucositis and quite a few of us on here have used it with good results. It comes in powder form and you just mix a heaping tsp into a glass of water and swish and swallow. It can be found on line or a place like GNC or vitamin world or Health food and whole food stores. If you would like to read more about it, i have supplied links for info about it on the HNC Superthread, which is found on the first page of our board.

Welcome to our board.

postie65's picture
postie65
Posts: 12
Joined: Feb 2013

Hi there, I have been reading all your posts and soaking in the infor. I am a Canadian girl, 47, with stage 2 Squamous Cell Carcinoma of the tongue. I am going for rad #10 of 30 today and have had one round of Cisplatin of 3 treatments. Round 2 is on Feb 19th 2013. I can't believe how much my mouth changed overnight as far as pain. A day or two ago I was telling everyone how great I was feeling and this morning I woke up at 4 a.m. coughing and choking with dry mouth and pain. It feels like if I try and lift my tongue the skin underneath will tear. I cant imagine the kind of pain I am in for by the end of week 6. Please tell me that I won't choke to death in my sleep :( I have consulted a Natuopathic Doctor along with my regular Docs and the L-glutamine was suggested to me too. Of course I didn't start using it till yesterday, because up until now I've been great. I hope I didn't screw things up by waiting. I know with radiation everything gets worse days after treatments, so I should have been smarter and done some preventative care. Anyway, I enjoy reading the tips from everyone and because you are all still posting, I'm assuming that I too will survive this crap. Oh yeh, I can relate to the food tasting like crap...I am in love with food, and this taste thing is like the ultimate curse to me. Again, I'm only into week 3 of 6 and already I feel doomed :( I will keep reading and hope for the best. Brenda

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

A sudden increase in mouth symptoms, while on chemo and rads, often means oral thrush.  You should get them to look at your mouth today or tomorrow, as this is a common, and very treatable problem.  Most of us get at least one episode during treatment.  This is an old thread we are posting on, dead for a couple of years.  When you post it is suggested you start a nex thread, otherwise lots of potential helpers will miss your message.  Welcome to the board.  Keep coming back.

 

Pat

postie65's picture
postie65
Posts: 12
Joined: Feb 2013

I don't know how to do what you asked me to with this old page and I was wondering why all the posts are so old. Can you tell me what to do? lol The canadian Cancer society doesn't even have a blog that I can find, so i was glad to join this one.

phrannie51's picture
phrannie51
Posts: 3849
Joined: Mar 2012

on the left side just under the "Search" thingee, you see "Post New Forum Topic"....click that and you will have your own thread going.  You'll get a lot of responses.

I used L-glutamine when my mouth sores got really bad from the 5FU chemo....during the radiation part of treatments I used MuGard, which is basically a preventative (it really worked for me)....Mouth sores were absolutely the MOST miserable part of treatment....I cried on here for days on end.  I could at least put L-glutamine and water into my mouth without the stinging, which also kept me hydrated.  I also got thrush at the same time....Diflucon cured it fast.

p

postie65's picture
postie65
Posts: 12
Joined: Feb 2013

Not sure why but I  hav elooke and there is no search line and there is no where that says "post new forum topic"...I swear I have looked and paged thru from the main page and have looked everywhere. But I am happy that people can at least see me and read my stuff. I will keep looking thru the pages tho. Thanks for the response tho :)

postie65's picture
postie65
Posts: 12
Joined: Feb 2013

Not sure why but I  have looked and there is no search line and there is no where that says "post new forum topic"...I swear I have looked and paged thru from the main page and have looked everywhere. But I am happy that people can at least see me and read my stuff. I will keep looking thru the pages tho. Thanks for the response tho :)

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

...

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Most everything I can think of regarding mouth pain has been covered... Of course always check an communicate with your MD's, they might have something new.

I never had mouth issues and was very lucky compared to many. I did have pain from the rads, lost all taste and saliva for many weeks.

Eventually after a month or so, I did have very slow improvement... After just a few months, I definitely could survive on what taste I had gotten back along with limited saliva... After two years I completely had all taste return and around 95% of the saliva...life is good...

You too will more than likely have most taste and saliva return..., unfortuantely it's never as fast as we would like...

Best ~ John

postie65's picture
postie65
Posts: 12
Joined: Feb 2013

I've been reading all of the posts, and on my tablet I was actually on the page that had the current ones. For some reason this old site is the only one i have access to on my CU and I can't seem to find where the new ones are. Anyway, you guys have all given me great tips thru this crappy jouney :)

Hoorayjackiee
Posts: 1
Joined: May 2013

My boyfriend is going through preconditioning for a stem cell transplant in a few days. He was chosen for a clinical trial at Sloan Kettering of a drug called palifermin, that is known to greatly reduce/eliminate mouth sores during radiation. They administered it to him 3 days before he began 5 days of total body irradiation, and has yet to have any Mucositis in his mouth, 7 days later.

its worth asking your doctor about this drug, there have been lots of studies and trials on it and it is not experimental. I imagine one day it will become a routine part of radiation treatment regimens.

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