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Joined: Jul 2007
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Hey everyone,

The subject of Trismus in another post brought this to the forefront of my mind regarding the Therabite device. They are so darn expensive and most insurance companies don't/won't pay for it. In our case, I was able to find one to bid on in EBay and won it but it was still rather pricey. I got it thinking Bill would need it but as it turned out, he never had a problem with Trismus.

So, when ChristineB mentioned in a post that she needed one, I cleaned Bill's and mailed it to her...not expensive to do as its lightweight. She then passed it forward as well when she could not use it. DO YOU SEE A TREND HERE??

So, if you have a need for this device or you have one that you are not using, post here or IM the "needer" and see if you can pass it on!

Thanks, Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Sep 2010
Posts: 71
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I am a "needer" that would be grateful to have a Therabite...I would be very happy to pass it on when I am done with it as well. I am just starting radiation (30 treatments - 1st one today) and want to keep it from getting worse. My jaw is pretty good right now - the bad side is a little lacking from the good side but decent.

I am just trying to keep it from tightening up more!

Let me know...I am happy to refund postage!

Michele in IL


Female - 53 no smoke/drink
tongue Biopsy 8/2010
Surgery 9/21 for SCC left side tongue stage II. Prtl removal tongue/left side lymph nodes. All Clear
Radiation started 11/2, ended 12/17
Lymph node involved left side along with gum involvement 2/9 Fibular flap failed 2/22.
passed away 1/12/12
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I sure could use one if someone is so kind to donate. I would also pay it forward after my experience. My mouth will not even open to the point where I can get a single depressor in. I have tried muscle relaxants, massaging, jaw exercises, tongue depressors, EVERYTHING To no avail. Have been losing weight even while on supplements. Thanks for the creative idea Deb. Hope people see it out there and it works.

Best wishes to all!

-Matt


32 Yrs. Male
Diagnosed 3/17/10
SCC right side of tongue stage 2
Surgery 4/20/10
Right hemiglossectomy
Right selective neck dissection levels 1-4
Right anterolateral thigh free flap
Tracheotomy
31 radiation treatments
Nov. PET and CT showed something, hopefully nothing awaiting confirmation
Joined: Oct 2010
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Hi. I went through cancer in 2007 and purchased a Therabite. It is very expensive and in my case it has not been a successful therapy tool for me. Doctors have no answers or are simply not saying.

For the cost I would encourage you to use the stack of tongue depressors. They accomplish the same thing and will save you tons of cash for something useful.

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[quote=altoman]Hi. I went through cancer in 2007 and purchased a Therabite. It is very expensive and in my case it has not been a successful therapy tool for me. Doctors have no answers or are simply not saying.

For the cost I would encourage you to use the stack of tongue depressors. They accomplish the same thing and will save you tons of cash for something useful. [/quote]

Sorry the Therabite was not successful. Do you still have the device and if so, would you be willing to share it with someone who might have better luck?? Thanks for posting and let us know if we can help get this to someone else.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Jan 2008
Posts: 4
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My wife really needs a therabite and I posted this a very long time ago. Still can't afford one. Do you still have it? Desperate. Popsicke sticks hurt her gums.

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[quote=Mark Martin1]My wife really needs a therabite and I posted this a very long time ago. Still can't afford one. Do you still have it? Desperate. Popsicke sticks hurt her gums. [/quote]

Please see this post:

Therabite

Maybe this will help.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Aug 2010
Posts: 72
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My husband uses tongue depressors to widen his jaw. They are over twice as wide as popcicle sticks and spread the pressure out at least four times as much. Your wife may have much less pain with them. You can buy them at medical supply stores. A box of 600 costs around 10 USD here. Tim doesn't need them all, so I can send you dozen to try them out.


Susan, CG to husband, diagnosed April 2010, age 56, non-smoker, no HPV
Mandibulectomy on left side May 2010 followed by 30 radiation, 3 cisplatin treatments.
Joined: Jan 2011
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What is a therabite and how does it work?


Joel, 52
SCC HN Stage IV, Excisional biopsy to remove 4 lymph nodes 12/2/10, Diagnosed 12/9/10, Tonsils removed, mouth biopsy 1/13/11, wisdom teeth out 2/7/11, chemo starts 2/22.
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David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: May 2007
Posts: 39
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Hello forum;

I haven't posted in some time, but can pass on some information about the Therabite system.

First of all, it requires a lot of discipline and in order for it to be effective, it will have to travel with you at all times.

I found it very effective. At the outset of treatment, I could open my mouth 19mm unassisted, and 23mm assisted (by the Therabite...). After 3 months, and a very aggressive treatment plan, I could open my mouth 27mm unassisted, and over 30mm assisted! I understand the normal opening is no less than 36mm.

The device started to irritate some exposed bone in my lower mandible that had suffered osteoradionecrosis, and I had to curtail the use of the device until the irritation abated (about 2 months...)

Unfortunately, in my case, the 2 month lay-off resulted in the loss of the gain I had achieved which was most disappointing.

Although there are conflicting reports out there, I believe a Therabite user will have to continue using the device indefinitely in order to retain any improvement in jaw opening. In other words, once you start you will have to continue forever.

This has been my experience, but it is by no means conclusive. I wish you every success with the Therabite system, and hope that any gain you achieve is permanent.

I still use my device on and off, and realize I will need it for the balance of my days on the planet, otherwise I would offer it to another good home.

All the best,
JT2


Age 55 at Dx,smoker 30 yrs ago, drinker 8 yrs ago; Stage 4 Squamous cell carcenoma T4a N3; 35 radiation tx, 3 chemo w/ Cisplatin, radical neck dissection,40 hyperbaric dives pre-surgery. Clinical remission since May 2006; Update: declared cancer free July 16, 2010! Miracles can happen...
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Why do you say that it is so darn expensive? Some one sell it for $300 on Amazon. Sears sell it for $399. Atos (manufacturer) said
after Medicare and my secondary insurance my cost would be $62.

Shirish

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Uh...not many people here are eligible for Medicare and many insurance companies will not cover it at all. Consider yourself lucky that you have those coverages.

And with reference to the price...many of us think that $300-400 is a lot of money.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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I think $300 is alot of money. Even an unexpected bill for $62 in the wrong month can be alot for me. In my previous life, those amounts werent significant to me but now they are.

If anyone is able to help out another member with a piece of durable medical equipment that they no longer use it could make a big difference in that person's life!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Sorry I did not want to ruffle feathers but compare to what I had to pay in thousands to Hospital, Doctors and Dentist that was not covered by insurance in past 4 years this cost to me was fair.

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Ken had one of these and if there is anyone who needs one I would be happy to clean it and send it out.


Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
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Thanks Jill...someone will be thankful for your offer.

Special hugs to you and your baby girl today...I can't possibly know how sad you are.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Jan 2011
Posts: 123
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I am sending Ken's out this week to someone. So glad we could pay it forward!


Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
Joined: Jul 2007
Posts: 939
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Thank you ...thank you. Hugs, Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Dec 2010
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Hugs that sooo amazingly generous of you!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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