tykerb sore mouth and tongue
 

this is just my first week on tykerb and the fatigue is very strong. yesterday i noticed my mouth felt sore like a bad burn from something hot. when i looked last night it looked like a bunch of sores on my tongue. mouth, throat and eyes extremely dry. does anyone have suggestions how to handle the sore mouth and tongue? also i've noticed so many of you are taking herceptin, tykerb and xeloda with all kinds of variations. are you all in usa? i ask this because my onc is so emphatic about doing what is protocol with no deviations. i'm not sure if it's just her or what. going tomorrow and not sure how to handle it cause she still says se's of last week were not from xeloda. today i got a form from roche pharm. re my se's and they want docs info. but if she insists xeloda wasn't the cause then ? please forgive me if i've asked these questions before. i've been having bad chemo brain with these new drugs. thanks, gm

Hi,

Mouth sores are very common with many of these regimens. Are you using any kind of mouth rinse on a regular basis. I would recommend 1/4 teaspoon of baking soda in about 6 ounces of warm water. Rinse and spit about 4 times. I would do this at least 3 times per day.

I am here in the US and do find that my doctor is very willing to go off protocol. I think early on in my disease he was more apt to stick to protocol, but I am stage 4 and 4.5 years into this battle, and we are at the "let's try it and see if it works" stage. If you are not happy with the care you are receiving or if you don't feel heard, try someone else. Your oncologist should be your partner in this journey, not your boss!

Hi,

'Mouth sore' has been discussed extensively not too long ago. If you click on the "Search" link on the gold bar on top and put in 'mouth sore', you will find many postings, including a couple of them by Terri just last month.

Do the salt + baking soda routine as is standard for chemo. If it gets worse, ask your oncologist for the 'lidocaine, benedryl and malox' mix.

Hope you feel better soon.

I just get the occasional fever blisters on the side or tip of my tongue, but it's very tolerable for me. It only lasts 3-4 days. I only get it about once a month.