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mouth sores need advice

BSNC
Posts: 14
Joined: Mar 2005

Man, only the first treatment and one week later I have some nasty blisters in my mouth. Tell me what you did to relieve the pain, how long did it last for you, what did you eat that didn't feel like pins and needles, etc. I'm on FOLFOX plus Avastin, plus Panitumumab, which is a stage 3 clinical study drug. HELP! Chemo sucks...Brian.

tkd3g
Posts: 768
Joined: Aug 2004

Hey Brian.

Sorry about the side effects. It totally sucks.

I was fortunate and didn't get the mouth sores. They did give me a mouth wash type rinse called Biotene (sp?). I used it often, just in case.

They say stay away from spicy foods and citrus fruits.

I think some have tried chewing on ice chips during the chemo treatment. ( guys, did I get that right?)
I can get back to you in the morning with some other suggestions.

Definately tell your docs and nurses. There is no reason to suffer.

Feel better,

Barb

tkd3g
Posts: 768
Joined: Aug 2004

Brian,

Here's a link I found that gives a bunch of suggestions:
http://www.chemocare.com/managing/fullstory.sps?iNewsid=24406&itype=1875

Talk to your doctor about any medications they speak of.

hope that helps.

Barb

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Ahoy, Brian -

I got em. They suck. Here's how to treat them and mitigate them in the future...

To treat them, do the mouthwash (my doc didn't give it to me) If you can't get the mouthwash, do what I did, use Zilactin Swabs. You can get them over the counter. They are medicated cotton swabs that also contain benzocaine (think pain relief).

To mitigate them in the future - and maybe avoid having them - it worked for me - suck ice chips as they push your bolus of 5FU. You know that metallic taste you get? Yep, that's the chemo. By sucking ice chips, you reduce the blood flow to your mouth and thus the taste and side-effects in your mouth; vis-a-vis sores.

Hopefully tis will help you.

- SpongeBob

CAMaura
Posts: 719
Joined: Feb 2005

Hey there Brian,

I used the mouthwash - they call it "Stanford Mouthwash" out here in California....but what seemed to work better wre probiotics and yogurt. Since the chemo is killing randomly, it is killing the "good"bacteria that helps the natural flora in our mouth. Give it a try.....plain yogurt and the probiotics from the health food store.

So sorry that you are suffering. Best wishes and nag your doc for help!! hope you have some relief soon.

Cheers,
Maura

PhillieG's picture
PhillieG
Posts: 4685
Joined: May 2005

Hi Brian, I was on a similar chemo for stage IV colon cancer with a side of liver mets, the only thing I didn't have was the Panitumumab. I had sores at first, and they gave me this precription for this stuff called 'magic mouthwash'. I'm sure there is a more clinical name for it. I still have it at home. I will get the name and if I can find this post again (I'm new here) post the reply. I did only have sores for the first 2-3 treatments, then I got neuropathy....
Phil

MJay's picture
MJay
Posts: 132
Joined: Aug 2004

Hi Brian~
I got those, too, the week after my first treatment. Man did they hurt. Not a spot in my mouth was not covered by a sore.

They gave me a gel mouth rinse but it didn't do too much. Better than nothing.

I did start rinsing with something called Noni Juice for my next treatment and I didn't get one sore. Don't know if it was a fluke or it really did the trick as I only lasted through two treatments and wasn't able to prove my theory.

Noni Juice can be purchased at any health store, GNC and even Costco has it.

Good luck. After the mouth sores went away I got Angelie Joile lips. Boy did I look wierd!!

MJay

madu
Posts: 53
Joined: Mar 2005

Definitely tell your doctor - I didn't want to bother them over the weekend after my first week of treatment and by Monday I couldn't open my mouth all the way. Silly me! I got a prescription for "magic mouthwash" and it worked very well. I'd start swishing it before eating around Thurs. of my week of treatment and it worked. Even works on canker sores. I've also heard that Tom's toothpaste and mouthwash doesn't contain alcohol or something that regular toothpastes have that aggravate the sores. No need to suffer, get the magic!

Heidi

markatger's picture
markatger
Posts: 315
Joined: Feb 2005

Hi Brian,

I didn't have problems with mouth-sores but I am on FOLFOX and Avastin myself. I just wanted to chip in to say that I'm not sure if you will be able to use the ice ships trick as suggested here. I think Oxaliplaitin is part of all FOLFOX regimens and you can have cold sensitivity because of this drug. I'm sure you're familiar with this but just wanted to address it.

Also even though I don't have mouth sores, I have definitely have pins and needles / numb tongue..not fun and not sure how to deal with it. But I have been off chemo for a few weeks and it seems to have gone away some.

Sounds like you got a lot of good advice though for prevention and mouthwash treatments for the sores. Handy for me too if I ever have trouble with them. I think I have a lot of chemo ahead of me...ugh. Hope your docs can help too.

Good Luck!
Maria

timlou
Posts: 60
Joined: Jul 2004

My husband used magic mouthwash from Moffitt Cancer Center in Tampa and my daughter used Biotine mouthwash from Roswell Park Cancer Center in Buffalo, low and behold they had the same ingredients, both used it prophylactically and never got sores, he was on fulfox and she was being treated for breast cancer. You got nothing to lose by giving it a try and my husband says stay away from the ice chips you will think your throat is closing up. Louise

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Yep - I dished out some bad advice there re: ice chips. Sorry; I completely forgot about the hot/cold sensitivity induced by the FOLFOX treatment. I only had 5FU and Lekovorin - no hot/cold sensitivities induced by that treatment.

Sorry, Brian!

- SB

tkd3g
Posts: 768
Joined: Aug 2004

Oh man, I did the same thing!

Sorry, Brian.

Barb ( how ya feeling today?)

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Brian can't talk right now because some people told him to chew ice chips during chemo and that made his tongue fall off...

We will be in touch shortly.

Sincerely,

Ima Shafter

Shafter, Shiftless, & N'astee
Attorneys for Brian

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