Went to get fit for my mouth splint to hold my tongue in place and my jaw open just right yesterday. Will pick it up and make sure it fits and works well on friday morning. Then friday at 3 pm will go for my planning appointment for radiation where they will make the mask and take a ct scan so they can plan the attack.

After that they say 3 to 5 days after will start radiation. So a monday may 31st or sooner will start radiation.

Pretty nervous and a bit scared, but I am sure I will make it through this.

Also supposed to move on the 1st of june, so wish they would wait till after the move and we get all settled, but cancer isn't kind nor considerate of life, so i am stuck.

This is a very nerve wrecking time in the treatment process. Hurrying up to wait for the next procedure. Even thought it is not the ideal time to move, generally speaking, the first few weeks of radiation are not so difficult as to make moving impossible. We are all here for you. Just keep putting one foot in front of the other......one step at a tine. Good Luck

I couldn't have said it better than Carmen. I'll be thinking of you tomorrow. The mask is a drag. There's no other way to say it. I found that listening to music or an audio book during treatment was a lifesaver for me. Had to balance mini speakers on my stomach as they wouldn't let me use my iPod earbuds, but it was worth it.

Keep us posted!
D2

The Moffitt radiation nurses had a boom box in the room and encouraged bringing our own CD's. There was also great incentive to do that unless you liked their country & western ones!

I remember my wife coming into the radiation room for my first rad and seeing them clamped me down her knees buckled and she was helped out of the room never to return again.

You have been through so much already. I'm sure your a real trooper. I don't think I will ever forget the day I got fitted for the mask. A tranquilizer taken before the fitting would have been nice! I just had no idea of what to expect. They need to form the mask very quickly while it is still warm. All in all, I was out in 15 minutes. Good Luck, post back & lets us know how it went.

Appointment went ok, but mouth stint/appliance is very uncomfortable to use while laying down, and the mask forming was a bit creepy, but i dealt. I Will start my IMRT 30-35 treatments on wednesday june 2nd. So at least I get to get moved in before starting.

Does anyone know of any good meds, rinses, or vitamins to take that help reduce side effects from radiating the tongue and neck?

Or anyone know of any exercises they did while going through radiation to reduce stiffness and trismus?

Sounds like you have already been through a lot . The radiation will probably be troublesome for you. I did not have any radiation of my mouth, just my neck. I used a cream, Biafine on my neck that worked beautifully. I never peeled and unless you knew I was having treatment you would not have known. The Biafine is not greasy, my whole neck actually looks better. The mask thing bothered me some, especially farther down in the treatment when I would cough etc while in treatment. I was initially surprised that during treatment, you feel nothing. The techs played an FM station while I was on the treatment table. I figured out my time was about three songs plus ads, haha. I would tell you to eat as much as possible now. Even though I had no lymph involvement, my RO increased the field of my treatment of my voice box to catch the lymph nodes adjacent. He called it microscopic treatment for anything that might not of shown up on my initial CT. Good luck. I think the hardest part may be behind you. I will start my after treatment scans soon and praying nothing shows up. I basically have been in limbo all year so far. Time to get better and have some fun.

I am receiving radiation for microscopic cells as well. They removed the lymph node that had cancer and they removed all of the cancer from my tongue. But because of the perineural invasion, how deep the tumor went in my tongue, and how much cancer was in my lymph node they are choosing to go with radiation.

Bethers - there are a lot of good products out there and of course everyone's experience is different. I used just about everything my RO and her excellent nurse prescribed and it was still tough.

For eating (i.e. the liquids, which was all I was on for several months) I would first use viscous lidocaine. It's a gel that you hold in your mouth to dull any sores you might have. It works, well, it helps, I'd say. Impossible to get it really down in your throat for any lesions down there, alas. But it's something.

Caphosol is a saliva substitute that helps moisten the mouth during treatment. Very expensive though.

There's a rinse that comes as a powder in a plastic bottle to which one adds water. Trying to remember the name... hmm... it's not coming to me but if I remember it I'll PM you.

If your neck blisters, Silver Sulfadiazine is great. It really helped me.

Don't be shy about asking for painkillers. If you're in pain you absolutely need them and your docs should be prescribing them freely. I found plain Oxycodone worked the best for me, at least eventually, as Percocets (Oxy + Acetominophen) are quite large and hard to swallow. I also used a Fentanyl patch during the last couple of weeks when the Oxys weren't enough. But ask your docs and see what they say.

No question, radiation is a bitch and the immediate aftermath no better. But you'll get through it without a problem I'm sure! So good to hear you can complete your move before you start. That must be a huge load off your mind.

Keep us posted all the way, okay?

D2