First off, thank you for this site and forum!
My husband who is 49 was diagnosed with SCC in his tonsils in January of 2005. He underwent the whole radiation and chemo deal and is now Cancer Free! Now three years out, his docs say it is unlikely the cancer will return in THAT area. However, at each routine scan we are terrified. In January of this year, he had just been "promoted" to scans every six months (from every three). This first one showed 4-5 lymph nodes to be "hot and enlarged" outside his lungs. Something we never wanted to hear. He had two different styles of biopsies, the results were negative each time for Cancer. They couldn't give us a reason for the change, but assured us that there was no Cancer and the nodes have not changed in size since. What a relief! His scans now will be every four months. It's been a long, hard battle, but he's a fighter and is beating it thus far! If you ask him how he's doing, he'll pretty much always give you a thumbs up! The hardest thing now (besides the fear) are the side effects of the treatment: trismus, muscle spasms (jaw) and xerostomia. He's a teacher and football coach, so talking, yelling and enduring cold weather are all affected by these side effects. We've been very active advocating for ourselves, and have much to share/gain through experiences. Knowledge is definitely power.
Anyway, thank you again for the support we hope to gain, and we'll give back as much as we can as well!

Kudos to Your Achievements , seriously its a very big deal to fight it and get out of it so gracefully !
Please do help us with your experiences !

Curt'swife,

That's great news and I hope he never has anymore close calls. Was he a tobacco user? What did his treatment consist of?

Hi Curt's wife. Your husband, who is the same age as me, was diagnosed the same month and year I was. I am also a teacher (though not a coach) and am also dealing with xerostomia, jaw cramps and trismus. Also some swallowing problems thrown in on top of all that! Welcome to this board.

I just had my every 4 month checkup - I only have scans once a year--and got the all-clear but, like your husband, every time is nerve-wracking and I hate those false alarms.

Nelie

Curt and Nelie, you both deserve a round of applause. Having your careers in the education field, around all the younger ones had to be tough. Congrats.

Thanks, Jim. In my case I teach college so I'm around young adults (at least in theory they are adults ;-) and some older adults as well. I have to say, thank God online teaching is something I already had training in and was something my college was glad to have me do more of when I was diagnosed and since then because I don't have the voice to teach most of my classes in the classroom anymore. If it weren't for that, I wouldn't be able to teach at all which would really stink. As it is, I miss being in the classroom more.

Nelie

Nelie
Nice job on the "all clear"! It's ALWAYS good (and emotional) to know Cancer's getting it's butt kicked.

Have you found anything specific that has helped calm down the spasms? Anything effective with the trismus? We're trying to deal with that now, as it is affecting his job (he opted out of Spring Football because of spasms), and symptoms are getting worse. He's just recently began using a Therabite, and I hooked him up with a friend/co worker who is a rehab doctor for a consult to see if he would be a good candidate for Botox. She thinks yes, so now we're awaiting that. I also left a reply regarding xerostomia last night, don't know if you've seen that.

Also, David - no, he wasn't a tobacco user at all. Like many in the 60's, he grew up in a smoker's house (both parents) so who knows if that contributed??? His ENT says "Cancer chose him."

Hang in there all - Curt'sWife

Hi,

my husband had a similar diagnosis. He had severe trismus which got better once the tumor went away but during treatment we got a therabyte (our insurance paid most of it) and he uses it every day to keep his mouth opening. When he was diagnosed it was difficult to get two tongue compressors taped together to go in his mouth. Now his mouth opens "3 fingers width" which is pretty normal. It is very easy to use and only takes a couple of minutes a day to use. It should help Curt even if it doesn't resolve the problem completely. Plus, many on this board are using a new biotene mouth spray to increase moisture (you can read about it on this Board and I believe that Brian Hill made a post where he explained that it not only helps in the moment but it increases enzymes to continues to help. I wish I had suggestions on spasms but he doesn't have that particular problem (although he has some others!) but I'm sure others on this Board can help.

Take care- Sophie

I find that if I am very conscientious about using the therabite 5 or more times a day that it cuts down on the jaw cramps although it doesn't help me open my mouth a whole lot wider. The other thing I will do if I'm in a place where I can to do it after I have a spasm, or if I have a few in a row, is put heat on that part of my jaw--either a very hot washcloth or the corner of a rice-filled neckwrap that I heat in the micorwave.

Mainly I'm hoping this coronoidectomy surgery I have planned will help with the jaw cramps. My ENT says he thinks it should.

Nelie