Hi all, after my diagnosis I have felt very much like I landed on a strange planet where I don't speak the language but....I'm learning. I have my 14th treatment on the tomo radiation machine today. Yesterday's chemo (cisplatin) was cancelled due to bad reaction. My throat and tongue are blistered so I am only eating soup and sustagen - with great discomfort. Being my age and female, my disease is odd esp. Since non HPV. I look fwd to chatting with you all.

Sharie - welcome to our family. Sorry you have to be here, but we're here to help in any way we can. Christine will doubtless be along in short order to give you her great advice and expertise. Please ask any and all questions that come to mind, however odd they might seem to you. There's always someone who's been through it!

Sending good vibes from LA and best of luck with your treatment.

Welcome to OCF! You are in the right place to get info and support to help get you thru your treatments. There are several members who are young and have no known cause. Im sure its very frustrating not knowing what caused your illness. But even though you dont know what caused it, the treatments are still the same.

best thing you can do for yourself is to focus on what is in your control..... your intake. This is what will make all the difference in how you get thru this. By ensuring that every single day you take in a minimum of 2500 calories and 48+ oz of water you will do better. More is preferred, the above numbers are the bare minimums. Plus around chemo days push the extra water up to 64 or even 80 oz daily. I know it sounds like alot but with everything your body is going thru this is a necessity. If you struggle with fluids, ask for an open prescription to get hydrated in the chemo lab a few times per week. The brutal treatments really can do a number on your body, your resistance, morale and stamina...too much to worry about for one person! Thats why I said to focus on what is within your control... your intake. Everything else comes second.

If you notice any difference in your hearing, even slight buzzing or very minor changes, notify your doc immediately. Cisplatin is known to cause serious hearing loss in some patients.

Best wishes!

Welcome Sharie from a fellow Aussie. There are a few of us here!
You will find this is the very best place for support and the members here are fantastic and knowledgeable when it comes to answering any questions you may have.
Wishing you the very best with your treatment and recovery.
Gabriele

Hello Sharie:
Well you sound pretty upbeat for being this far into treatment and suffering the side effects you mentioned. That will certainly help you throughout the remainder of treatment and make our job of supporting you that much easier.

In the end it won't really matter much what the cause of your cancer is or was. You have it, that's the reality, so we treat it and then move forward back into a productive future. Worrying about any of this is just counter-productive. It doesn't help anything, but it sure can make the rest of your life miserable.

You haven't written much, but you don't strike me as the worry-wart type. We will get to know you better over the rest of your treatment.

Hang in there, it looks like you are approaching half way done.

Tony

HI there... you had the same surgery and are having the same treatment I did. I know it's like stepping into a whole different world. You are almost at the half way point. This is when it begins to get hard. Mouth sores and everything. Protein is very important - invest in a protein powder and maybe make yourself a shake once or twice a day to help with healing and immunity. Hydration and nutrition is very important during treatment. Rinse your mouth frequently. I found lukewarm temperatures helped the best. Go for mild and blandish foods and flatten club soda and drink it if you can... it helps heal and sooth, and clean, and hydrate. Hugs and welcome... you'll get through it.

Thank you all! I am feeling pretty good in myself, just a bit battered physically. My therapy centre are great about fluids and push 3 Ltrs through IV every Thursday, plus additional if needed. I'm on sustagen and resolve to boost protein. The blisters have worsened significantly today and I am bleeding at every rinse. I got the ringing in my ears Christine, but it was the loss of/blurry vision that made the decision to call last weeks chemo off. My surgical margins were clear (4mm) and only one micro metastasis in neck so I don't fit traditional guidelines for chemo anyway, my surgeon is just being aggressive with what was an aggressive cancer. I got horrible thrush and mucositis in hospital after my surgery and I found this forum during a late night desperate web search and found the tip re: club soda - been using it since. It's getting a bit too sore now though. My RT was talking about a naso-gastric tube last week, I think it may go in when he sees me on Tuesday. It's almost impossible to keep my nutrition up at the moment, and I know it's important.

I should also mention that my step father (no genetic link) had oral cancer of unspecified primary coming on up to five (magic marker) years ago. So if I appear to be unusually informed - that's why. As my Mum's doctor said "I don't want to even think what the odds of it hitting your family twice are?!?"

Hopefully it's not...