Here's the deal, stage three, inoperable, but radiation and chemo should work fine.
Surgery would have meant removing my tongue.
It is at the base of my tongue, and one lymph node. Both small tumors.
Thursday I get my radiation mask. They said they have art classes for decorating them after treatment. One such piece is on display in the lobby. They were impressed that my wife received radiation from the inventor of the mask.
60-80% are the odds.
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I am so hoping you do just fine and add to the positive side of the odds. 
Last edited Wed Mar 2, 2016, 03:38 AM - Edit history (1)
Buy some Eucerin and/or Aloe lotion (real aloe, nothing added). I used one after treatments and one for while I was sleeping.
You can ask for silvadene when the burns get bad. I blistered up and it was painful. The silvadene helps a lot.
Your hats need to have a large enough brim to shade your entire head. Wear them when you're outside, even in cloudy weather.
Your chest will also get red from the radiation, so use the Eucerin or aloe on it.
The Cancer Society will send you a care package of products. They did me. Your Cancer Center should have the sign up for it, and they will send for it, addressed to your house. Mine did.
Lip Balm! Medicated and regular. Unscented. Make it the highest SPF you can find.
Biotene products!!
Your taste buds...well, everyone is different but the taste of food will be diminished. You have a tube already, so that shouldn't be a problem..taste, that is.
Swallowing can become hard. I'm assuming you'll still take some liquids by mouth, such as water.
Drink lots of water!!! Helps the skin and makes it easier for the needle during chemo. (to find the veins)
Sunscreen. Sunscreen. Sunscreen.
Wear loose, comfortable clothing. Use a warming blanket during chemo - feels wonderful. Your center should have them available.
If you're nervous, ask them about liquid benadryl - helps take the edge off during chemo. It can also help with reactions to the chemo - the skin reactions, that is.
Don't hesitate to ask for something for nausea. If the skin reactions become too bad, they can give you something in your IV to help with that...usually a steroid.
Keep your mouth rinsed. A warm salt water solution with a touch of baking soda will ease the soreness in the mouth from the radiation. The baking soda can neutralize the burn. The salt water helps reduce the swelling.
All of this comes for my experience, and everyone is different.
I'm so sorry you have to go through this, alfredo.
don't think you're one of them. You seem to be insightful, pragmatic, and smart.
So, what kind of radiation mask is it? When I did a round of stereotactic radiation (they immobilize you, then shoot two concentrated beams at the target (which was in my lungs). I was hoping I could quickly find a picture of me in mine, but my iPhone's all screwed up.
Basically, though, what they did for me the first day is they lay some mesh in water (about 140 degrees celsius - just kidding, fahrenheit - kind of warm bath water) and then they lay it on your face and shape it. As it cools, it hardens, and you end up with some kind of thing you could decorate for halloween - cross between football mesh and Eddie from Elm Street.
The next time in, you reuse it, they strap you in. If this is what happens in your case, don't be afraid to speak up if it's really not comfortable. 'cause you'll be in it for 40 mins (in my case, at least the first time) and immobilized, and then it becomes hard to complain.
In my case, they also had a little background music on a multi-disc CD player, but it was really so I could hear it, not them, and unfortunately they had it set to something like "sample every track for 5 seconds". We'd have 5 seconds of cajun (yay!), 5 seconds of blues (yay!) 5 seconds of Tyler Swift (errr....), 5 seconds of Aerosmith, 5 second of James Taylor (okay) and then get buried into 5 seconds of Butthole Surfers or something (which is actually okay, but you get the point, and 5 seconds of anything is either too long or not long enough). By the time we were 15 minutes into doing it over and over, I realized how this was happening and couldn't really say anything. I mean, you can say things like "help" or "stop" or "yes" or "not", but usually it's not an involved explanation of how their CD player is on sample mode and it's driving me nuts.
It also physically hurt, so next I made a point to describe - while they were applying the mask - what they had to tighten or loosen to make me comfortable. All remaining sessions (maybe 5?) were comfortable after that, and I bought in my own CD of music so I wouldn't be stuck listening to their stuff 
So, if it's similar, there might be some starting pains, but after I took care of the uncomfortableness and the music problem, I actually started looking forward to it as relaxing, particularly with my choice of music.
Hope the radiation and chemo work just fine. In your case, once you take out the tongue there's no putting it back, so that sounds like a worst-case / last-option scenario. It sounds like you're right to take the chemo/rad first.
Good luck and tell us how it goes!