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Need recommendation to sooth the throat from Radiation

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

Hi Folks,

We are experiencing some sores in the mouth/throat area right now. Not excruciating pain, just uncomfortable.

Do not see doctor until tomorrow for some MAGIC MOUTHWASH, but wondering if you have any recommendations for now.... ie, lozenges (that aren't high alcohol based). He's using baking soda/salt water right now.

hwt's picture
hwt
Posts: 1929
Joined: Jun 2012

I would call the after hours number and have them call you a script for the magic mouthwash today otherwise no ideas but maybe someone else will have one.

phrannie51's picture
phrannie51
Posts: 3721
Joined: Mar 2012

find some L-Glutamine. It is a powder you mix with water and use as a rinse the same as baking soda/salt mixture. It can also be swallowed for his throat...(side effect: It's good for digestion)....My Onc sells it right in his office. It doesn't sting, and it promotes healing of the sores.

When you get to the Dr. tomorrow, also ask about Mugard....Mugard can help prevent sores and it worked wonders for me (I didn't get BAD sores till I was on 5FU the last three months of chemo...and Mugard couldn't keep up with those)...but it did a wonderful job of keeping me sore free during radiation. If your Dr. hasn't heard of it, you can order it online...and they'll make ya a good deal on it (we all found that out after comparing what one another paid for theirs....).

p

katenorwood
Posts: 1827
Joined: May 2012

Hey there,
Mugard works wonderful for some...I used a equal mixture of benedryl, liquid lidocaine and maalox for the soreness. 2tbs each. But PLEASE call and ask first before you try anything ! The nurses that work with us are caring and more knowledgable then me. Also get the script for the liquid pain medication. Wish I could help more ! Keep us posted on what works, best wishes ! Katie

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

Just sticking with the baking soda/salt water rinse for now. Couldn't find an L-Glutimine around.

Thanks for the responses.

CivilMatt's picture
CivilMatt
Posts: 2954
Joined: May 2012

cureitall66,

Sorry I don’t have any good ideas other than over the counter lozenges or prescription pain meds (to make you sleepy). What I can tell you is I am one of the big proponents of Magic Mouth Wash, I loved the stuff and the relief it gave me. Don’t be afraid of it, chances are you won’t over dose (kidding here, no over dose). Take 2, 5 or 10 mls. at a time, swish it around to deaden your mouth and then sip swallow it a little at a time (to sooth and deaden the throat). It may taste funky at first, but with the disappearance of your taste buds you soon won’t notice. I use to take it to radiation treatments and would take a little sip just before walking in the door. The Magic Mouth Wash along with my Lorazapam was just the edge I needed to put up with the mask. I don’t care what you have to do to psych yourself up for this blasted journey (we are all different) do it.

Funny thing is I blasted through a six-pack of Magic Mouth Wash and never questioned the taste, but I still have some and that stuff and the taste is less than desirable today. One time offer, if you are within 300 miles to where I live, I will bring you a fresh bottle tonight, and take a swig with you for old time sake.

Best,

Matt

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

Thanks for the tips on the mouth wash. Should be getting some of that "Magic" stuff today. He can hardly wait!!! LOL.

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

Matt, can you pick up a gallon of milk for me swinging down by Florida on your way back home from Michigan...?

I'll treat you to a day of fishing for your troubles...., LOL.

Nice gester of you offering to help out my bud Cris.

JG

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

I found great relief from the baking soda/salt/water mix as well as from a special Magic Mouthwash that my radiation oncologist invented. She also recommended that I rinse with, and drink one of the Aloe beverages available from health food stores. Some of them are 100% aloe, and don't contain much of anything else in the way of color or flavor. Look for the unadulterated ones. They need to be kept refrigerated, and the cold was also soothing.

Deb

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

Deb,

Did you drink one a day?

meaganb's picture
meaganb
Posts: 226
Joined: May 2012

I don't have experience with aloe, although it sounds like it would help. Just wanted to second what Phrannie said about L-Glutamine. You may have to go to a health food store like GNC to find it, but it really worked wonders for me.I used it as soon as mouth sores started popping up and continued until a month or so after treatment. Towards the end of treatment when I didn't want to eat at all( I didn't have a peg) I would get lazy and not swish with the L-Glutamine and the sores would start up again. Once I got back on my 3x a day routine they were gone. That stuff works wonders!

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

We can do both Magic Mouthwash and this L-Glutamine. Of course at different times. But wonder if it's ok to alternate them since he is limited to how much MM he can have in a day. Should we ask his Dr?

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Don't swallow the magic mouthwash; or if he's reached his maximum dosage, just hold the stuff in the mouth till the lidocaine causes mouth numbing. No help for the throat, but at least the mouth will be numb.

L-glutamine works in an entirely different way. You can use both.

Deb

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Aloe sucks. It's bitter. And kind of phlegmy textured. Mostly I'd swish it around in my mouth and spit it out. It was so thick it gagged me. I could hardly look at it without gagging. All you really need to do is coat the inside of the mouth and leave it in there.

Make sure you buy the pure Aloe drink, rather than the pure Aloe topical lotion.

The other thing I would do with the drink (unsweetened, unflavored) was rub it on my neck and jaw where the skin was burned.

Also - on the Magic Mouthwash; the longer you hold it in your mouth, the better. It takes the lidocaine a while to work. My Magic Mix had just a bit too much benadryl in it for me to be comfortable guzzling a lot of it. Again, I did a lot of holding this stuff in my mouth for a couple of minutes, then spitting out. I only sipped a tiny bit.

Deb

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

They did not put lidocaine in his MM. I'm not sure exactly why. They do have benadryl in it. He says it's not doing a great deal of help to his tongue.

Skiffin16 suggested dividing up his doses from 2 (allowed)into 4. We're going to try that tomorrow.

I will also suggest he keep it in his mouth for a few more minutes, then spit it out. Thanks for the tip Deb.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

what's the point? ;-)

I've had two different MM recipes:
first (thrush formula) was lidocaine, benadryl, and nystatin.
second was lidocaine, benadryl, and maalox.
sure, the lidocaine is only temp. relief...but even temporary helps at 2AM when you need to sleep.

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

Guess I'm going to see why they don't have it in there...His tongue is driving him crazy right now. He does take some Morphine but still tough.

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

They told him no lidocaine because of the tongue condition from radiation. They are afraid he will aspirate it into his lungs

He is in excruitiating pain right now. They are letting him have 15 mg Morphine twice daily. It's not helping the tongue.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Sip, swish, sit a while, and then spit.

Deb

phrannie51's picture
phrannie51
Posts: 3721
Joined: Mar 2012

that's the thing that numbs the mouth and throat! I think that every phramacy or Oncologist has their own recipie, tho (before I got my MM, I looked it up on the internet, and there were many recipies)...I'd ask why not. My Onc first gave me MM, then prescribed straight Lidocaine.

p

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

P,

See my post above to Blackswampboy...

CivilMatt's picture
CivilMatt
Posts: 2954
Joined: May 2012

Cureitall66,

My magic Mouth Wash must have been the “Gold Standard” because it worked great for me and I did swallow it and never over dosed on it. I never ever took more than the maximum 10 mls that little funnel would hold and usually got by on 2 to 5 mls at a time. It worked great for my delicate throat and sweet mouth. I agree, you can hold, swish and spit, but you don’t get the full throat relief without sip swallowing the juice. Maybe the other recipes used for Magic Mouth Wash were not as magic as mine was. It got me through a few bad weeks last February and March. It helped me sleep through the night and enabled me to drink at least one meal a day (the rest by PEG). If you are unfortunate as I was with similar cancer and you have some Magic Mouth Wash made with the same recipe as mine was you are ready to do battle with mouth and throat pain.

Best,

Matt

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

I'm sold!
you're not gonna hold out on us with that gold standard recipe, are you?

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

Matt,

Treatment for him is BOT and neck.

He doesn't seem to be getting any relief for tongue. He has the Magic Mouth Wash he can do twice a day. He was told my NP that he could swallow it. The bottle says not to.

His tongue is so tore up and painful. He can hardly stand it. Broke down on me today. The apparent reason for no Lidocaine is because they said he could aspirate it into his lungs due to the condition of tongue.

Allowed 15Mg of Morphine twice daily. Can't sleep either.

Did you do any of the L-Glutamine?

He's getting his Rads right now. I'd like him to talk to them there and see if they can offer any other suggestions.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Ask again for the lidocaine. Tell them he won't swallow it, he will just swish and spit. And he will promise to hold his breath whhile doing so.

Also, many folks on here who had a lot of pain did better with the fentanyl patch. Also, someone here once mentioned a fentanyl lollipop. Maybe that would help to concentrate the pain relief directly on the tongue.

Deb

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

He's going to see if they will give it to him. I don't know about the fentanyl patch. He has had a heart attack and triple bypass in the past, so they are cautious on pain meds they give him. He is allowed the morphine(15MG)twice daily

dales2loud's picture
dales2loud
Posts: 45
Joined: Sep 2011

I stopped the soda/salt aftertreatment and had to deal with 6 months of Thrush and "hairy tongue. I did not think the soda/salt was doing any good but it was, don't be in a hurry to get off mouth wash's until you are better healed.

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

Thanks for sharing that...I will see to it that he still keeps up with that as well.

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I am with everyone else. David has had base of tongue surgery and was given the MM with lidocaine. He is just not supposed to swallow it.

luvofmylif
Posts: 344
Joined: Sep 2012

My husband had BOT surgery and radical neck dissections x 2. First surgery in Aug and six weeks later had second surgery. He has been using Miracle mouthwash for about 6 weeks because he had some thrush post op. He has continued to use it since and no thrush. I so hope things get better for your loved one. It's torture going thru this. But, it will be worth it in the end...

Joan

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

Hoping the Morphine patches will work. No budging on the lidocaine. I just don't get it...but they are concerned badly about the aspiration to the lungs with his tongue in that condition.

The radiation has been horrific to his tongue. The side (left) to which they are radiating for the neck mass/BOT is the side the tongue is most affected. It literaly looks like someone took a jagged knife to the side of it and cut it zig zag and then stitched it with some staples and left a bunch of bumps all over it. UNBELIEVABLE. He can barely talk or eat at this point. I think I will be asking for advice on a PEG next week...unless this morphine kicks in.

We are going to get back to the salt/baking soda regiment as he backed off of it when starting the MM. I will take the advice of others and have him continue both and try to locate some L-Glutamine.

The hospital told him that H & N cancer is the worst of treatment in comparison to other cancer treatments just simply because of the mouth problems(infections, eating, swallowing, dehydrating, lack of nutrition, etc) .

We'll get through this...one day at a time.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Does your Sig Other have dental work? Fillings or crowns? During radiation, both sides of my tongue were very severely burned. I attributed it to radiation scatter off my dental work - I have crowns and fillings, top and bottom on both sides. It got worse and worse every day. Eventually I figured out to pull my tongue up and back a little during the radiation treatments, so it wasn't pressed up against the dental work. The burns diminished some after that.

I know they tell us not to move at all, within the radiation mask. My tumor was BOT, and I fretted a bit about the subtle repositioning of my tongue in the radiation field. It did, however, appear to reduce the burning somewhat.

I still have scarring on the sides of my tongue.

Deb

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

I thought that's what the mouth guard during treatment helped to prevent? I will give him this piece of advice and have him check with the rad people and see if they can get him to do this during those treatment.

Thanks for sharing this Deb.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Double post - sorry.

Deb

phrannie51's picture
phrannie51
Posts: 3721
Joined: Mar 2012

and I kept a plastic bottle with the L-glutamine next to my chair all the time, as it was the just about the only thing I could put into my mouth that didn't sting. I also kept up on the salt/soda rinses. L-glutamine is an amino acid, and not harmful in any amount...

I sure hope the morphine patches work better for him...poor guy. Mouth pain is just about as bad as it gets, I think...

p

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

P-

I will have him do all the above and see if we can get this thing controlled.

How did you say you mixed that L-Glutamine? And you got in a powder form correct? I contacted Walmart and they only have it in a pill form. That probably wouldn't work unless we crushed it.

C-

phrannie51's picture
phrannie51
Posts: 3721
Joined: Mar 2012

form at a health food store (I know they have it here in the health food store)...My Onc sold it right in his office, so I never had to search it out. I have a little funnel that I'd dump two tablespoons into the bottle, then fill the bottle up about half way...this was just a store bought water bottle, maybe full it would have been 16 oz.

p

phrannie51's picture
phrannie51
Posts: 3721
Joined: Mar 2012

form at a health food store (I know they have it here in the health food store)...My Onc sold it right in his office, so I never had to search it out. I have a little funnel that I'd dump two tablespoons into the bottle, then fill the bottle up about half way...this was just a store bought water bottle, maybe full it would have been 16 oz.

p

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