Got mouth sores or sore tongue?

[painintheside]

Hi,
This is just something that helped me. I had mouth blisters shortly after starting tx. I suffered for awhile, my doctor not helping at all. I started researching it and found out the chemo will cause a multi B deficiancy. Look up what symptoms are associated with B deficiancy. Anyway, I started taking a multi B and drinking 100% purple grape juice. Within days, my sores went away. My tongue is still sore (kinda like freezer burnt) but I can eat again!

I drink the juice for my red blood count and hemo. It seems to be working because for the last 2 months, my count is going back up, very slowly though. But its not dropping anymore.

I am in week 25 outta 48. I am starting to feel human again! And for those who know me.....my 24 week pcr came back the same as my 12 week.....undetectable!!!!

Love to ya all,
Dana

[Nimzovich]

Lee, I just looked through the Pegasys label and don't see anything listed about optic nerve damage. When I started treatment my GI said that Roche was suggesting (not on the label though, so maybe he heard this from a conference or other providers) a baseline optic nerve measure. I don'know if this was for everyone, or just those with high myopia like me.  I've had both retina's tear and am close to glaucoma treatment so I need careful supervision. Unfortunately, the mouth sore side effect led me to the sterioids which is the likely culprit for my new dual cataracts. Given my eye history, my opthamologist wants to check every 3 mos.  regards --dave

[fishdoc]

I have to argue the herpes one.  Valtrex rules.  It is expensive, but the only difference in it and acylovir is a time release thing.  My son sets his alarm to wake up and take it.  From pain to no pain in about 4 doses (a little over 24 hours).  its the cats meow.......If you haven't tried it, you need to.  Doc said no problem with it on meds.....interferes with the replication of the herpes virus, originally developed for vaginal, but works GREAT on the mouth..

[Dale_Ray]

Hey my friend sorry the sides are draggin you a bit and hope they start backing off. Keep an eye on that depression thing its sneaky you know. I've missed your shots so the best thing for depression is to pick on me. My wife said it works well for her. I hope you get to feeling better soon. Dale

[painintheside]

Hi all,
Thanks for all your posts.

wmich, cracks in the corner of your mouth is also a symptom of low b vitamins. Look it up. I found it all to be interesting. I had the "magic mouthwash" and didnt find anything "magic" about it. Very temporary!

Goof, I miss ya buddy! Hope you are doing well. Call when you have a spare moment. I would love to see how your doing.

Sincerely,
Dana

[wMich]

Congrats on the PCR!  :)
My experiences with mouth/tongue sores are similar to Nimzo's post above. Mine seem to come and go regardless of what I do. Thankfully they have been gone for a couple weeks now but seem to pop up overnight like zits on a prom-bound teenager. Thankfully they leave almost as quickly. Painful little buggers aren't they? Mine look like pimples - white head with redness/swelling around them. And me a spicy food fanatic! These started in December about my Tx week 22 and have been there on and off since. The "magic mouthwash" turned out to be only a very temporary symptom reliever. Also this winter I have been plagued with cracking on the sides of my mouth and on the outside of one eye and both inside corners (i.e. tear duct area) that has yet to go away. I have even wondered at times if my tears are toxic to my skin! I have tried various OTC products and diflucan (anti-fungal) so far w/ no luck.

Nimzo, your comments on optic nerve and other damage from interferon were of interest as I too am nearsighted and have been type II diabetic for 12 years. If you have more info/links please share.    - Lee

[beamishboy]

yo memphis man---appreciate the encouraging words ..can't pik on my 'bud' buddy w/ out reflectin on my own lifestyle..do enjoy thots of yu messing about in boats,been there done that....hope your day is well-tuned
stator-how are you fairing my friend?? miss your presence,hope all is well or at least DOABLE

[beamishboy]

hello all,rem. that song??? maybe Cream??....great mold band.............i thk i'm gonna leave that,i'm feelin moldy today,been sleeping mega-amounts:trx sides & little depression-go figure!!...NYGIRLS news was so welcome.Kalio's not....but good to read EVERYONE's posts..
sindog i use lysine too-best trx for coldsores,herpes.....been using effectively for 8 or 10 yrs
Dyce,beagle,can-do,GOOFY,Dale_Ray.DEBBY!!!!!pain inside;EVERYONE--got nothing to say but Hey'all,great to read yur posts-Goodlick

[GoofyDad]

Just wanted to say Hi. Always nice to see you drop in.

[Mister beagle bailey]

Shot11 was last night and so far so good. Will see nurse tomorrow for procrit shot and blood test.  She is suppose to up it, will let you know how I do.  Tomoorow can't get here fast enough.  Just got back to NY today.
How did you do with #2, better I hope? Let me know how your feeling?

      Beagle

[dyce]

Ha brother, the 2nd shot wasn't nearly as bad! I didn't get the bone chilling shakes and high fever this rd. Just felt real tired and achey but it was managable.

Dyce

[Dale_Ray]

Debbie let me know when you get your test results back. I've got my fingers, knees, legs and eyes crossed for you:) I know it sounds painful but it takes my mind off of my side affects:)

I used to just put oral gel on my tongue to kill the irritation for a while so I could eat or just not have that soreness in my mouth. Someone else mentioned "thrush" and I am not familiar with it but I know there was a posting on it around the first of the month (this month).

Hey I did the Debbie jam and push procedure with the needle Friday night and overall other than passing out it wasn't so bad. Wife didn't care for all the screaming though:) Dale

[dyce]

How are you guys?

paininside- thanks for that post! I was about to post a ? on a natural way for us to maybe keep our red blood counts up. So far so good on the riba bumps in the mouth, I'm keeping my fingers crossed on this one. Good deal on being undetectable and your in my svr prayers.

Ny girl, was thinking about your pcr today and I can't wait to see your results! Your a real soldier in this war and I believe your gonna win! Best of luck to you.

Beagel, how did shot 11 go? Good I hope . Today I had to install new rotors and brakes on my truck, talk about a chore while on tx! Been praying your hmg. levels come up. Procrit dosage increase today right?

Dyce

[NYgirl]

Do you know how bad it feels posting my news after Kalio's? I wanted to wait until tomorrow but until I posted it I just didn't think it was real...now that I HAVE posted it I wish I had waited.

I've had bad news so many times that honestly I can't believe I got some good (even though this thyroid thing is a mystery now).  

Love you Beamer!

[beamishboy]

perish the thot of waitin to share your NEWS!...been waiting w undue apprehension for your PCR -i am sooo happy for you!!!!! Rockstar& Dragonslayer,not to mention singlehandedly supportin the New York Dairy industry...i am doin ice cream nitely now too

[kiltedguy]

Ice cream! Did someone say Ice Cream. I work for a chain of beauty salons. I work in the ware house at the main corperate office.  The owner has decided to branch out so he is preparing to open 2 Maggie Moo's in town real soon. It's real fancy ice cream, like stone cold where they mix in goodies. One is going to open only 6 blocks from my house.  :)  

Jerry

[Nimzovich]

I've had mouth sores for a long time that have become particularly bothersome since I started treatment (now at 37/72). My symptoms include the white patches on the tongue and sores on my cheeks and gums. In addition, once in awhile I get standard cold/canker sores on my lips.

I eventually made my way to an oral surgeon who biopsied my tongue (ouch!). I was negative for dysplasia, but the biopsy was inderminate for the root cause and didn't help the pain go away. I was referred to the oral medicne clinic at the teaching university hospital near by. They think lichen planus (anecdotally associated with Hep C) some sort of viral thing that can break out on your skin and genitals or show up in your mouth. I've had it in all areas, but the stay on my skin and genitals was short (a couple of years in my 20s), but the mouth stuff has been lingering on (30s and 40s).

We've tried a steriod rinse (dexamethasone) and now a concentrated steroid gel. Unfortunately, I just had my every 3mo. eye exam with an opthamologist (high myopia and worried about optic nerve damage from interferon) and he noticed cataracts forming on each eye. These are known to associated with steriod use (among other things) so I'll have to look for something else.

[sindog]

My dental hygenist suggested taking lysine(?). It's a vitamin suppliment for better general mouth health. This works very well for me, I used to get alot of mouth sores anyway, and after taking lysine for a day or two the sores clear up.

[Algernon]

White patches may mean that you have thrush.  I had it just last week.  Really painful too.  I was prescribed a very icky medicine that worked within a day or two--Nystatin.  There's a pill version and a liquid version (you "swish and swallow").  I have the liquid and it's a bit disgusting.  If the pill is just as effective, go for that.  Deb

[Mister beagle bailey]

Hi,

How are you doing?  Guess the mouth cleanser by colgate didn't work on you like it did on me.  Hope you had a better weekend  then the last one.

        Bob

[NYgirl]

I've got one little patch on the left side of my tongue that is white like it's freezerburn dead or something.  Not the bumps (which look like swollen taste buds) this skin is like just dead white.

It hurts so much all the time. I hate to complain about it because it seems so LITTLE compared to things like anemia but ouch.

I just called - no PCR report yet (didn't really expect it until Wednesday at some time but of course i'll call back tomorrow afternoon too. Even though I have a bad feeling - I can't help calling! Maybe that is good though...I had a good feeling the last two times and that didn't work out so well!)  :)

[Dale_Ray]

I had the sores - freezer burn was the best explanation I've heard yet and they just disappeared at about 12 weeks in. Still have the sore dry throat but the sides of my tongue and inside of my mouth are doing fine. The only change in my diet is I started drinking a glass of 2% milk every night and don't have a clue if that had anything to do with anything. I hope both of you can shake those sores. When I had them it seemed like I thought about them all day long. Dale

[NYgirl]

AHHHHHHHHHhhhhhhh I will try drinking the juice - I do take a B supplement but maybe it's not enough...it IS the one vitamin that hurts my stomach so I skip it sometimes!

I HATE these sores and thought it was a C deficiency so I've been taking a good deal of it - but alas wrong one!

Thank you SO MUCH for posting this...this has plagued me the entire course of treatment. It would be so nice to be out of paininthemouth!  :)