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Questions about mouth sores during head and neck radiation

Hummingbird3's picture
Hummingbird3
Posts: 67
Joined: Aug 2013

Hi, 7 weeks out from surgery. This is the third regrowth in 7 years. The first two removals were done thinking it was a cyst. The second pathology showed it was a pleomorphic adenoma on the parotid gland. I saw an ENT/head and neck surgeon last August. We Watched the area with MRI’s and decided to go forth with the paridectomy.  After a 6 hour surgery and over night stay I have healed for the most part with no bruising and the scarring is already looking really good. She removed 80% of the parotid gland and old scar tissue from other surgeries and tissue in the jaw area. i still have no movement around the right nostril and right upper lip…however hoping this is muscle trama and not nerve damage. time will tell….The tumor was benign ..praise God…showing branching to multiple sites and radiation was highly recommended. Due to regrowth the probabilty of carcinoma and permanent nerve damage.  I have only 20% of gland left and if they go beyonthesis capsulthis would involve severinneed verve,  I am now 7 days into radiation...any advise or previous experience with this would be so appreciated. i have developed a thick on right insode of my mouth and ne mouth sore has develooed.  My rad team has been amazing and so compassionate. Using all the Biotene products, wearing flouride  trays at night and drinking aloe juice.  Gargling with salt and baking soda warm water.  

Thanks so very much for any advise and so happy to find the blog. It good to hear from others experiencing the same. I had never heard of this before last summer. Definitely a learning process and a lot of patience involved. 
Again, thanks for any advice about the radiation experiences on head and neck moving forward. 
Christie

phrannie51's picture
phrannie51
Posts: 3725
Joined: Mar 2012

that is what saved my mouth during radiation.....it needs to be started before the sores get too far ahead of you.  I got mine from my Oncologist.....you may have ask your RO.  Mugard also has a site on the internet, and they can contact your RO, also.  Just a little heads up on it.....the price of the stuff is huge, however several of us on here have learned that if you gasp, and say no way can you pay THAT much the price drops astonishly Smile (they wanted $350 from me, and when I gasped they dropped it to $100....somebody else on here gasped twice and got it for $50).  I just saw one of the other member's has 3 unopened bottles of Mugard....to give away.....you'll want to ask your RO about it, get the go ahead to use it......most say yes, even tho they know little about it.  When I was in treatment just a year ago, Mugard was being clinically tested on patients.....it still may be in clinical trials.  I does work tho to keep those sores at bay.  I only had that first one, then started using the Mugard....no more sores.

Welcome to this forum, Christie.....you will find a wonderful world of supportive, knowledgable, kind, and humorous friends here....it's a great place to be.

p

PS.....I also used L-glutamine powder mixed with water.....hold and slosh it around in my mouth, then swallow.....I got that at my Onc's office, but they sell it in the health food stores, also.

robswife87's picture
robswife87
Posts: 178
Joined: Mar 2013

Phrannie, when we got the Mugard and they called me on the phone. They said that I had a $60.00 co-pay. I said "Oh", the girl said if you can't afford that then they could said it to me at no charge.

I said I really couldn't afford it, that I was the only one working and none of his eneteral supplies and food was covered by the insurance and she said no problem. 

It was delivered next day. I had remembered what you had said about the money and it worked for me.

Because I didn't have to pay for it I want to give what I have left to someone who could use it and not be able to pay.

Sandy

phrannie51's picture
phrannie51
Posts: 3725
Joined: Mar 2012

Three gasps and it's FREE....way to go, Sandy!! Laughing 

p

TracyLynn72's picture
TracyLynn72
Posts: 702
Joined: May 2013

I love your giving heart!  These are the things that make CSN like a family!!   :) 

CivilMatt's picture
CivilMatt
Posts: 2955
Joined: May 2012

Christie,

Mugard seems to be popular around here (must be because it works).  I mostly just used the salt , baking soda and water concoction.  For mouth and throat discomfort I was a big Magic Mouth Wash user.

Welcome to the H&N forum, it is the place to be (for some).

Hang tight and good luck,

Matt

Skiffin16's picture
Skiffin16
Posts: 8086
Joined: Sep 2009

Like Matt, I didn't really suffer from mouth sores, but I routinely several times a day, swished and spit a mixture of about 1/3 glass of water with about 1/2 teaspoon baking soda and a teaspoon of hydrogen peroxide (was prescribed to me by the MD's)...

Also, check out the SuperThread, first on our forum, tons of great information on there for pretty much anything you can think of...

Best,

John

Hummingbird3's picture
Hummingbird3
Posts: 67
Joined: Aug 2013

Thanks everyone.  I got the magic mouthwash today to have on hand.  I also bought the L- glutamine.  The lady at the Vitamin Shop said she could seeh where it would be great for this.

 

i wasn't expecting the mouth sores to  start this soon into the treatments.  However, knowing it temporary will make it doable.  Did any of wear the fluoride trays at night?  I will see my RT doc on Monday and see what she is expecting moving forward.  

Have a great weekend. christie

 

oh yeah...my rad team had never heard of Mugard. 

hwt's picture
hwt
Posts: 1931
Joined: Jun 2012

I had a perododectomy several years ago for a benign Warthins tumor, No radiaition for that and it healed nicely. I had one incident during the healing where it drained behind my ear when I ate anything. A couple of air sick patches cured it. Several years later, 2012, I had cancer of the mandible (jaw) and I used floride trays but only for about 2 weeks into tx, then it was just too hard for me.  Good luck

Hummingbird3's picture
Hummingbird3
Posts: 67
Joined: Aug 2013

Christine,  I also had a seroma behind my ear on week two after surgery.  I had it drained over a two week period and they applied a pressure bandage.  Experienced frst bite syndrome which is improved greatly over the least two weeks.  All healed beautifully this far and now able to chew. Still no sour, tart or spicy.  That will be a while just yet.  Enjoying eating while I can :-)

how are you doing now.  I pray you're healing ok and your path reports or follow up scans/biopsy has been good news.  

Thanks so much for your informaton.  Best of blessings for a healthy happy life!  

Christie

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