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#19086 12-01-2005 01:05 PM
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Brian,

I've had the thera-bite since the beginning. I've had great difficulty opening my mouth even to use the contraption. My ENT suggested it straight off. I've pretty much resigned myself to the fact that this is how I'm going to be. I've had an operation done to remove scar tissue, but I did not see any improvement. My ENT was pretty dissapointed. He thought I would be helped by the procedure. I think it bothers other people more than it bothers me. I've had people ask me "Doesn't it bother you that you can't eat regular food?" I always answer with a resounding no. There is a lot more to life than food. I look at it this way. There are people starving in third world countries who would love to be able to eat what I do everyday. I feel fortunate that I'm able to maintain my weight and that I'm healthy.

One of my greatest concerns was my ability to communicate with the people that I manage at work. I've had to make a conscientious effort to slow down when I speak and try to annunciate more clearly. I have trouble with certain sounds. But I've been back to work since the first of February and I haven't missed a beat.

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
#19087 12-01-2005 01:54 PM
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John - I too got little benefit from the Thera-bite. Months of PT and painful exercises did almost nothing to increase the movement of my jaw. Like you, I had resigned myself to a tiny opening. My ent described the muscles like rubber bands before rad, and like shoe leather after rad. Poor me, stuck with a tiny mouth. Not even a large enough opening to insert a denture. Then I went back to teaching, talking alot, having to project my voice to the back of the classroom. Lo and behold, my jaw began to loosen.

My last radiation was in 9 of 03 and I am STILL recovering jaw movement! Its exciting and very encouraging. Don't believe for a moment that you are stuck forever with that limited motion. When the muscles are completely healed, they will begin to stretch a bit. With your encouragement and effort, you may still get more motion back. I'll never be Grand Canyon mouth again, but I am better than I was a year ago!!

Keep the Thera-bite. Its a great conversation starter..... Tom


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
#19088 12-01-2005 02:46 PM
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OCF Founder
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J,Cherup.... whatever your final outcome, including the improvemnts that may occur as time passes, you have a first class winner's attitude. The willingness to adapt, the positive attitude regardless of where you are in the process, are marks of a winner in my book.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#19089 12-01-2005 02:52 PM
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Tom,

There is always hope. I'm just a realist. If this is as good as it gets, I accept that. Anything over and above what I have now is a bonus. Believe me, for what I've gone throguh, LIFE IS GOOD. I finished radiation back in the first week of January. Some days are better than others. When I first get up in the morning, I can open wide enough to at least brush my teeth. As the day progresses, I lose a lot of opening. By evening it's almost gone. I've tried using the thera-bite and tongue depressors to pry my mouth open. The pain is excrutiating. I've had enough pain for two lifetimes.

I kept my mask from my radiation. I have it mounted on a wall in my office. It, like the thera-bite is a great conversation starter. I consider it a badge of honor.

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
#19090 12-01-2005 02:55 PM
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Have to weigh in here and say that I am really enjoying some of the recent "joiners" to our club that nobody wants to join. Some excellent perspective, some good thoughts, some tasty humor.

Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
#19091 12-02-2005 05:23 AM
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Although it's discouraging news about the therabite. I did jaw stretches with no therabite (JUST opening as wide as a could and holding it for several seconds and repeating several times a day) during rad and I think my mouth stayed pretty limber then but during July and August, 2-3 months after rad, I started to gradually lose felxibility without realizing it. I didn't even GET a therabite until October. I find my mouth opening is narrowest in the AM but with the therabite I can widen it a bit duing the day and in the evening it's wide enough for me to be able to floss everywhere, even my back teeth (its a little wider than two finger-widths--I know it's supposed to be three.

Tom, I am hoping you are right about the classroom thing since I return to the classroom, for two classes anyway, next semester (I've been teaching part time online all through treatment and will continue with that too to try to avoid overdoing it and straining my voice at first). I'm also hoping if I keep regularly using the therabite it will get my mouth open a little wider since I need it to be a LITTLE wider to get some dental work done.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#19092 12-02-2005 07:22 AM
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Nelie,

I'm just the opposite as far as opening. I have more range in the morning. As wide as I can get is barely enough to force and I mean force a toothrush into my mouth. As the day progresses, my mouth opening regresses. Thank God for a food processor. I have to puree everything. I also have to have some dentql work done. Mine will be done in the O.R. They will pry my mouth open. I lost a few teeth during the initial surgery and I have others that moved during the course of radiation treatments.

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
#19093 12-02-2005 08:47 AM
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Friends,
I recently bought a therabite after being 3 years removed from treatment. I only learned about it on this site...no one at MDACC ever mentioned or suggested it. I put it by the breakfast table in its little blue bag so it will be convenient and I will use it. However, since I don't like it, it's easy to forget and I don't use it all that much.
I am glad to learn that it does not work that well anyway!

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#19094 12-02-2005 08:59 AM
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Hi --

Barry was prescribed a Thera-bite by his ENT (the one who herself had HNC and has some trismus from her radiation treatment) -- she told him she had been negligent about doing the stretching exercises prescribed to her at the time and didn't want the same thing to happen to him. She really rattled his cage about getting on this up front.

So he did and started to use the Thera-bite from the beginning and still does, 8 weeks' out from treatment -- his ENT and dentist both say he will need to continue for at least another year to be sure that late scarring and fibrosis don't "creep in."

So whether it was due entirely to the Thera-bite or not, his mouth opening is the same as before treatment. At one point mid-radiation he was having a problem getting his mouth all the way open but he thinks this was inflammation and soreness as now he can open the device all the way again. He says it is a bit stiff the first stretch so he thinks that trismus could sneak up on him if he let things slide. He religiously does 7 stretches, 7 times a day for 7 seconds as the Thera-bite liturature recommends. I read the brochure as well and recall that they said something like "three sessions a day" was insufficient to achieve desired results.

So it can work, at least for some patients. The published studies say that many but unfortunately not all who use it get some improvement.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#19095 12-02-2005 09:05 AM
Joined: Apr 2005
Posts: 2,219
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Hi,

Your positive attitude and great sense of humor are an inspiration.

As a dentist, I have several questions for you.
1. What procedure is the oral surgeon going to perform in the OR?

2. Will the bridge work be done while you are asleep and who will be doing the work? Another dentist or does the surgeon also do bridges?

Just curious.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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