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#58202 - 04/29/06 10:38 PM My mouth doesn't open that wide
mikejoycey Offline
Member

Registered: 04/08/06
Posts: 10
Loc: Cleveland, Ohio
Hello,

I was wondering if anyone has had trouble opening their mouth. My jaw only opens so far. I am 6 months post radiation/chemo and was wondering if this is normal and will it ever be the same again.
Also, it seems when I chew food it doesn't seem to know where to go. It either stays to the left or right, I don't know how to get it to go down unless it is really moist.

Thanks for any advice,

Joyce
_________________________
Diagoned with SCC left lateral tongue 01/05: Partial left neck dissection, partial glossectomy. Lymph glands cleared. Reoccurence in June 05 on tongue base:radiation x33 plus chemo. Started treatment on my 35th birthday! On the road to recovery...

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#58203 - 04/30/06 01:58 PM Re: My mouth doesn't open that wide
Darrell G. Rakestraw Offline
"Above & Beyond" Member (300+ posts)

Registered: 03/21/04
Posts: 417
Loc: NorthEast Mississippi
Normal, just keep excercising the muscles.... You might even want to consult with a physical therapist.
Darrell
_________________________
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.

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#58204 - 04/30/06 02:50 PM Re: My mouth doesn't open that wide
James Haucke Offline
Senior Member (75+ posts)

Registered: 06/13/05
Posts: 81
Loc: Springfield, Ohio
Joyce,

I had a real problem getting my mouth open after recovering from oral cancer. My speech therapist gave me a device called "bite blocks" (they are different width sticks about 5 inches long mounted on something like a key chain). I add to them by taping tongue depressors as I get more "stretch" to my mouth openings. I do 6-7 stretches holding each stretch for about 1-2 minutes twice a day faithfully for 18 months. It really works.

Jim Haucke
--------------------------------------------------
Recurring tongue cancer Jan 04; surgery Feb 04 - subtotal glossectomy, pharyngoplasty, neck dissection, PEG (still need) radiation 36 days ended May 04

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#58205 - 04/30/06 06:26 PM Re: My mouth doesn't open that wide
ChuckF Offline
Senior Member (100+ posts)

Registered: 07/23/04
Posts: 188
Loc: Winthrop Harbor, Illinois
Joyce,
There is a device called the Therabite available by prescription which can help stretch your jaw so that you can open your mouth more normally. If you search on "Trismus" you will find a lot of info. Trismus is a normal result of radiation treatment.
My EENT is the one who wrote the prescription for me. I used it seven times a day for several months. Some insurance companies will pay. My insurance paid 90%, choosing to classify it as durable medical equipment. I'm now two years post treatment, and only use the therabite occasionally.
The dry mouth issue continues. Though I have recovered enough saliva that I don't need a water bottle as my constant companion, I still need either a beverage or lots of gravy or sauce to eat a meal.

Hope this info helps.

Good Health,

Chuck
_________________________
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 9 years out and thriving. Dealing with a Prostate cancer diagnosis now
"Adversity doesn't build character, it reveals it."

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#58206 - 05/01/06 12:17 AM Re: My mouth doesn't open that wide
Tom J Offline
Platinum Member (300+ posts)

Registered: 11/17/05
Posts: 306
Loc: Colorado
Joyce - Keep those jaw muscles active and stretching. The treatment turns those rubber band muscles into shoe leather - without much stretch. They continue to loosen as time passes, but without regular exercise, you can loose a lot of jaw mobility. The Therabite really works.

The swallowing issues get better too, but you have to practice. The coughing and gagging is often part of the ritual to regain your swallow. Get a swallowing study done to make sure you aren't aspirating - then practice, practice, practice. Be strong. 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.

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#58207 - 05/01/06 06:26 PM Re: My mouth doesn't open that wide
Gail Mac Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/16/05
Posts: 624
Loc: Silver Spring, Maryland
Joyce --

I would realy second Tom J's recommendation and get to a swallowing/ speech therapist asap for evaluation. At many (should be all but isn't) CCC's treating HNC patients this is part of the regular protocol. In fact ideally (per the HNC conference I went to last week) you should meet with the therapist early-on to learn what to expect and how to do jaw-stretching exercises and swallowing exercises (as much as is possible) during treatment and afterwards, get a swallowing test to see what damage exists and how to correct with exercise etc. The risk is that things can and will get worse over time if the muscles, tendons and nerves are not used.

My husband's ENT is treating several patients who had radiation at a local facility without adequate advice on advoiding trismus and swallowing problems and are really working uphill to regain the ability. She warned Barry about this and prescribed a Therabite, he used it all the way through, has no trismus and (like Chuck) now uses it less often. He is still doing his swallowing exercises religiously and (seven months out) still sees weekly 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!

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#58208 - 05/02/06 01:59 PM Re: My mouth doesn't open that wide
Warren F Offline
Supporting Member (50+ posts)

Registered: 04/29/06
Posts: 51
Loc: New York
I am starting radiation in a few weeks. When exactly should I see a swallowing therapist? Before treatment or during and should I arrange for Therabite ahead of treatment?
_________________________
SCC on left side of tongue 12/01 left partial glossectomy, left neck disection (clean), recurrence 3/06 on back left of tongue, 2nd partial glossectomy, no nodal inolvement, IMRT completed 6/30/06

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#58209 - 05/02/06 05:52 PM Re: My mouth doesn't open that wide
Gail Mac Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/16/05
Posts: 624
Loc: Silver Spring, Maryland
Warren --

According to the speech/swallowing therapist presentation at the Hopkins HNC conference last week, you should meet with the therapist before (or early in) treatment, as well as with a nutritionist. At that time the therapist will just give you a head's up as to what the possible side effects can be, and how best to avoid them -- or if they cannot be avoided, as many cannot -- to ameliorate them. Thus the advice to start using the Therabite (or other jaw-stretching approaches) from the very beginning of treatment. The advice for swallowing is generally to try and continue swallowing as long as possible, even if only a bit of water or Boost, to keep the mechanism from atrophying. The nutritionist will help you here as well. You may get a gastric feeding tube (PEG) -- most centers strongly recommend these -- as it is vital to stay hydrated and also, to maintain adequate nutrition throughout treatment and in the recovery period. Some people never had to use their PEG, but most do, some almost 100%, others as a much-needed supplement to oral nutrition.

The swallowing test (a barium fluoroscopic evaluation) is usually done after the gross swelling and irritation from the radiation is going away, maybe 6-8 weeks' out, but this varies by center,

The therapist will, after consultation with the radiologist, design a series of exercises to improve muscle tone and swallowing ability. These may need to be continued indefinitely, by the way, as sometimes problems (scarring, fibrosis etc.) can "creep up" on you months or even years after the end of treatment.

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!

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#58210 - 05/02/06 06:57 PM Re: My mouth doesn't open that wide
R Kenneth Offline
Senior Member (75+ posts)

Registered: 01/01/05
Posts: 94
Loc: Seattle-area
After surgery and radiation, I couldn't stick the tip of my index finger between my uppers and remaining lowers. That's OK, I was pretty much limited to eating smoothies and such, trying to gain back a few of the 62 lbs I'd lost.

It's three years later and I can open my mouth as wide as I want to. In fact, it only took abbout a year and a half. No special tools, no therapists, no no exercises.

Maybe the tools and treatments would have made things go faster, but they weren't necessary, at least for me.

Hang in there!

P.S. A bigger incinvenience for me was the inability to eat spicy food. Couldn't do it for ages. As of a few months ago, I can. Mexican, Thai, Indian... bring it on, baby.
_________________________
SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."

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#58211 - 05/11/06 10:21 AM Re: My mouth doesn't open that wide
mikejoycey Offline
Member

Registered: 04/08/06
Posts: 10
Loc: Cleveland, Ohio
Thanks for all of the great advice. I passed my swallow test with flying colors. I noticed even since the last posting I am swallowing easier. I sometimes just get impatient!
I will look into the Therabite.

Thanks again!

Joyce
_________________________
Diagoned with SCC left lateral tongue 01/05: Partial left neck dissection, partial glossectomy. Lymph glands cleared. Reoccurence in June 05 on tongue base:radiation x33 plus chemo. Started treatment on my 35th birthday! On the road to recovery...

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