Mouth Sores Are Back

OMG you guys, I just can't believe this. This treatment is absolutely killing me. I woke up two days ago with a mouth FULL of blisters. Can you imagine how bad that hurts??  All I can do is cry and cry. Last night, I went to the ER after calling my doctors exchange and being advised to do so. I waited four hours and when the doctor finally came in he looked at me like "yeah..and?"  Just blankly like he couldn't understand why I was there! He gave me 20 Percocets and sent me home. I said "Can't we do a culture or something to find out WHAT this is?" He said "No, not really-not here."

I have never felt so alone and so useless in my whole life. I used to be pretty until I started this treatment and now I look like Frankenstein or better yet, a crack *****, a street person or someone who cannot take care of themself. I don't mean to offend anyone by that statement and I hope I haven't.

Maybe if I go into the hospital for awhile they'll be some sort of help there.

I'm gonna post a picture of my mouth ONLY because it might help someone else.  Try not to puke. Oh, I can only post one so you won't get the full effect I'm afraid.  You can't see here, but I have a blister on the left side of my lower lip that is 3" long, too. And white.

[Joseph66]

hi
i also had awful mouth sores and was prescribed a dental paste - Triamcinolone Acetonide - its prescription only and it works great - relief after one or two applications - the sores still occasionally return but they are easily delt with
Joseph66

[HelloKelle]

Did the picture show up? Did your sores look like mine? Who can help me? My primary? A dentist, my GI? EEEEEKkkkkkk

[Joseph66]

yeah thats pretty much the way my first sore looked - my gp took one look and prescribed this med to great relief

[Trinity4]

I've heard others post with the same problem.  I think a GP can probably recommend something to help.  Since you have a relationship with you hep doc already, perhaps he can prescribe something as well.  I think it's called Magic Mouthwash that people have used and gotten relief from.  I'm sure someone else will chime in with other rememdies as well.  I haven't had that happen "yet" so sorry I can't be of more help.  It is one of those unfortunate sx of tx and it must be awful.  Haven't look at the pic yet, but I will and hope it doesn't scare me!!!  
I'll bet you're still a very lovely girl.  You don't feel good right now, you don't like the way your life is and I certainly can relate to that.  I just know everybody looks at me like I'm some kind of alien but alot of that is in my head.  When I feel pretty, I think I look pretty but who can say they feel anything but rotten when txing.  You are probably one of the unlucky ones and having severe sx.  I hate that is happening but it's not forever so there is some light at the end of the tunnel.  Good Luck with the mouth sores and hang in there, this too shall pass.
Trinity

[SJL]

Slow down a lttle. I am sure their are many people on this forum who have experienced this also. I for one. I finished 102+ wks. of Interferons in July of 06. Throughout these treatments, I suffered terribly with mouth sores. I used all Biotene products, toothpaste and mouthrinse, and Magic Mouthwash (which is a formularly which your druggist can make,) like Nystatin. This helped. I finished 6 Rituxan treatments in April of 08, and I still suffered with mouth sores, so I am know on Fluconazole, 150 mg. tablets. A series of 12, one tablet per week, along with the Magic Mouthwash, (which is an oncology mouthwash.) I have the formula for this, if you need it for the druggist. This will help to clear the sores up. Watch what you are eating. Garlic, heavy spices,onion, some fruits, etc., will really make your mouth flair.
Good luck-these will help you!
SJL

[merryBe]

you say the sores are "back"

can you think what were you using or doing different when they were gone?

did they come back suddenly?

the reason I ask is one week I added raw pineapple to my fruit intake, and it triggered the sores.
Sometimes taking an antibiotic can trigger them.
It might help you to avoid more episodes if you can pin point the trigger.

My dentist said keeping the lichen and other type bacterias out of the mouth was key to avoiding the sores so I'm getting cleaned more often, and also doing gum massage and flossing much more often.
hope something helps, you poor dear...
mb

[JennyPenny]

I used Magic Mouthwash (children's liquid benadryl, maalox and something like lidocaine). I also rinsed with a product called Prevention. I got it at Walgreen's and it is made for patients undergoing chemo. You risnse at least 4 times a day and it helped the most.

[Bill1954]

Are you OK with the Fluconazole? I'm not sure, but I believe most of the '___azole' antifungal drugs carry some risk of hepatotoxicity. I just noticed this, and wanted to make sure this has been discussed with your treatment doc.

Good luck with NHL,

Bill

[charm27]

I had problems early on tx with my mouth. I asked for Magic Mouthwash and it helped.
I havent had it since week 7, Im on week 37. I cant drink orange juice, pineapple juice, anything  citric, nor can I have tomato sauce. You should try Magic Mouthwash and watch what you eat and drink. Also cant drink soda it burns.

Yes tx is brutal.
Hope all gets better and it will.

[rita863]

I have them all the time, At times they are at bay, I have tried a presccription, of course with the brain fog, i cant remember what the name was.  i also have down to my throat which make swalling mashed pototes feel like swalloing razor blades.

I use magic mouth wash, i make it myself though equal parts of benadryl, lidacaine, and malox, swish and spit.  i used biotene tooth paste and mouth wash.  and i used a little hydrocortosone cream for the cracks on side of my lips.

i stay away from anthying spicet,  i mean even mustard, salty etc,  i have lost 10 lbs the first month of the mout sores.  i eat a lot of yogurt, watermelon and cantelop because it feels good.  ice cream. etc.

hopefully you can get them at lease mangeable.

peace
rita

[SJL]

I just caught your post. This is the second time that I have had to go on fluconazole, and it has been prescribed by my Hep C. Specialist. It does seem to cure better than anything else. But, thanks for the message, because I will do some more research and check with my Doctor on this.
Thanks Bill,
SJL

[Bill1954]

Thanks for responding. He’s probably weighed the risk and felt it was in your best interest, but we never know… I wasn’t sure if it was prescribed by your primary or perhaps a NP that was unaware. Again, I don’t know much about these, but the suffix ___azole was something that I’ve been warned about from pharmacists, as well as my hepatologist.

Let us know what you find out if you get time; I’d be interested in knowing.

Best to ya—

Bill