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Only 7 TOMO/IGRT radiation treatments and sides of tongue red and burning today, help!

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

Was not expecting this reaction so soon.  I have seen photos of mucositis and now am afraid I am headed in that direction.  Both sides of my tongue are sore and have lots of small red spots on them and I have only had 7 treatments out of 33.  This is not good.  I had asked the R/O RN 2 weeks ago to see about getting me some Mugard or Caphosol which many of you have recommended.   I did let her know that these need to be used as a preventative and not to wait until one already has sores. Well, here we are.  I received a call from the Caphosol co. Friday, they have the script and  said that it would cost $1000!    My ins. Cigna pays 0.  Wow, and I thought the Mugard was high.  

I have been doing mouth care religiously, and swishing with the saline, baking soda and water several times a day.  Also use Biotene to rinse with.  I really do not know what else to do at this point.

Which do you all think works best Mugard or Caphosol for mouth/tongue sores?  Do they work if the sores have already begun?  

 

Please advise,

 

PJ

 

TracyLynn72's picture
TracyLynn72
Posts: 648
Joined: May 2013

that things are hitting you so soon!!!  I had terrible reactions on my second day of treatment, so I truly understand.  I didn't use any of the ones you listed but I have read that they have to be started BEFORE sores start (at least that's what I understood). I had to up my baking soda/salt/water rinsing to every hour and I had to eventually lessen the amount of salt and increase the amount of baking soda.  Biotene hurt me.  The water had to be room temperature that I rinsed with.  I used Magic Mouthwash ALL the time.  I went through 4 bottles of the stuff. I've heard that milk helps some people but I can't STAND the smell, sight or taste of milk. I hope you can find some relief.  Maybe scroll through the top thread (SUPERTHREAD) and see what other remedies are listed.  Hang in there...I'm sorry you have this going on already :(

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

PJ,

By the time my mouth, tongue and throat were sore, I was using magic mouth wash.  For me, the Oregon vintage I used was a blessing.  I consumed 6 bottles throughout treatments and swallowed every drop (with NO ill effects).

I always had 1/2 gallon of soda and salt water at the ready and rinsed and spit and hacked and coughed and choked and dry heaved throughout the 24 hours, whenever I felt like it.  Lucky for me I had a utility room sink to myself.  I always felt the caregiver’s got the raw deal having to listen to what would normally be a 911 call.

I also never had Mugard, but managed.  For me, magic mouth wash was one of my top 3 go too items.  Many here could not give a hoot for it, but if you had what I had you would be satisfied.

Remember keep drinking water to stay hydrated and to keep your swallowing top notch.

Today may seem bleak, but it will get better, you just have to navigate some rough spots.

Matt

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

NC vintage, and forgot all about that option.  I went through 5 bottles of it post surgery. I just do not want this to get out of hand.   I was hoping to have a couple of weeks trouble free. Hah.   I am drinking 60+ oz of water and also 2 8oz cups of green tea daily so I think that is enough liquid.  Everything tastes like salt water to me now and I do not think it is the soda/salt solution I swish and gargle with.  Reading some of the other posts make me realize how small my problems are.  

Thanks for the encouragement,

PJ

spector551's picture
spector551
Posts: 109
Joined: Nov 2013

PJ, you're problems aren't small, my friend. We are all heading into this together or have already been there together and none of it is easy. We will all have our plates to eat. Like you, I have found encouragement here as well. Great board.

 

God Bless,

Jamie

metro22's picture
metro22
Posts: 16
Joined: Apr 2013

You may be getting some Thrush - to clear it up take 200mg Fluconazole. Often one dose is enough but I took 100mg each day for 2 months during rads to prevent thrush. To help prevent mucositis I uses NuetraSal - it is the same preparation as Caphosolbut much cheaper. They will send you a month's supply for free - it lasted me two months. Just give them a call and they wil fix you up and mail it is a day.   http://www.neutrasal.com/   

MarineE5
Posts: 747
Joined: Dec 2005

PJ,

I did not have the magic mouthwash, I was unaware of it when I went thru my radiation. I used the Baking soda and Salt solution first using 1 teaspoon of each in 1 quart of room temperature water. later,I increased it to 1 tablespoon of each in the 1 quart of water. I rinsed,gargled as often as I felt necessary, which could be as often as every 20 minutes. It helped, but in the later weeks around 4-5 I started taking neurotin (sp) which helped take the pain/discomfort away.

My Best to You and Everyone Here

longtermsurvivor's picture
longtermsurvivor
Posts: 1768
Joined: Mar 2010

The odds favor thush, as it is pretty early for mucositis to be much of a problem.  Unless someone thinks of it, the diagnosis sometimes doesn't get made, so I'd rraise the topic.  I had thrush at about the time you mention, hurt like hell.  First doc missed dx, second doc didn't.  And my thrush was resistant to Nystatin, so I had an unpleasant week waiting for help.

 

 

best

 

 

Pat

donfoo's picture
donfoo
Posts: 1166
Joined: Dec 2012

Not sure if your tongue looks like this but I can surely feel your pain. This was my mouth near the end of rads. Only thing that worked was salt-soda rinse and magic mouthwash. I did have sores on my cheek that I was able to use some dental wax/paste to offer some relief but honestly, I found upping the narcos was the best way to get through this rough patch on the journey. Good luck. 

ps - images are a bit ouchie. 

https://www.dropbox.com/s/e795fas11odzf1d/2013-05-29%2023.06.18.jpg

https://www.dropbox.com/s/ip0baytdtsrm80w/mouth-2.png

hwt's picture
hwt
Posts: 1854
Joined: Jun 2012

I had a couple of bouts with thrush and it's no picnic. Once identified, it can be treated fairly easy. I was unable to do the salt/baking soda rinse as it burned so much. I did get Caphrosal (?) and was able to use that w/o any issues. ONC warned me to check with insurance prior to filling script because it was about $1,000. I had UnitedHealthCare at the time, and they allowed it. I never had sores in my mouth but my lower lip was pretty much open after the 1st week of tx. Happily, it started healing right after tx stopped. More than a year & a half later, it is still extremely sensative. I really can't say if the Caphrosal helped or not. It did not make the sores on my lips go away. It may or may not have prevented any inside of my mouth. At $1,000 I'd stick with the MMW and get checked out for thrush. Good luck!

 

jackflash22's picture
jackflash22
Posts: 227
Joined: Aug 2013

try NZ Manuka honey. you need high grade and it has an active trademark. I made mine into rinses to swish around my mouth. I got burn and red spots after rads But was Ok all the way though then the two weeks after started to get burns on neck and tongue. 

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