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#95685 05-18-2009 01:10 PM
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david1 Offline OP
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Hi, I'm a week out of radiation and chemo for tumor on base of tongue. I'm still eating with a feeding tube and sipping water to keep up my swallowing. I've read mentions of tongue and mouth exercises that I should be doing. Would somebody please tell me more about them?

Thanks!


Stage 2 SCC right base of tongue. 7 weeks radiation & chemo with erbitux. Peg tube. Concluded radiation treatments 5.7.09. Two recurrences, two surgeries. Most recent, a substantial glossectomy, 3/25/11. PEG tube. Minimal swallowing ability, but working on it.
david1 #95686 05-18-2009 02:13 PM
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I don't know abaout tongue exercises, but yawn alot. You don't want to develop trismus. Stretch your mouth as wide open as you can several times a day. And keep swallowing or you will lose that ability.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Eileen #95692 05-18-2009 03:19 PM
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Hi David, I had to do those exercises, also. Your ENT should have the name of a therapist that would have them. I just went through all of my stuff but I no longer have them. I'm sorry I was going to scan them and post them for you. Eileen is correct, the yawning is part of them. Also,as she says, keep swallowing, I had to a lesson for that. I wish someone had told me about that little swallowing trick. I never heard anything about that one. That's why these forums are so great. Take care, Carol


DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
david1 #95695 05-18-2009 04:47 PM
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David:
A speech therapist would be the best person to ask. I'm sure your team has one available to consult.

My dentist game me some exercises.
(1) Push tongue out to left, then right side, hold for 7 seconds each; (2) Push tongue out, then up for 7 sec. and then down 7 seconds.

Neck: Turn neck to left side, hold 7 sec. then do right side.

Mouth: Open like your yawning or eating an apple, hold for 7 sec. Push lips out like kissing, hold for 7 sec.

These may help, but please consult with your doctors
Sandyst


Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
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SandySt. #95700 05-18-2009 05:13 PM
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Geez, what is kissing??


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #95703 05-18-2009 05:45 PM
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I was given exercises to help with my trismus.

Open your mouth as wide as possible and hold it for as long as you can. Repeat several times and do this a few sessions per day.

Open as wide as possible and push your lower jaw first to the right and hold several seconds. Then push it to the left, hold. Same thing repeat several times and do several sessions throughout the day.

Its very very important you do these. Trismus is something you do not want to get.


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
ChristineB #95726 05-19-2009 06:07 AM
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David

Here is the link to OCF's discussion of trismus. Trismus-OCF the home test for Trismus is to open your mouth and try to put all three of your middle fingers (index, middle, ring) into your mouth between your teeth. If you cannot do it super easy, you have trismus. Even the three fingers are just the bare minimum for not having trismus.(about 35mm) It creeps up slowly but surely in the weeks after radiation if you do not do the exercises faithfully.
I beat it the first time around but this surgery nailed me although I am making progress with the Therabite (went from 12 mm to 28 mm)
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #95757 05-19-2009 08:25 PM
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Charm:
How do you like Therabite? I've been looking into it, but am not sure if it's a good investment as a preventative measure? What do you think?
Sandy


Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
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SandySt. #95768 05-20-2009 04:31 AM
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david1 Offline OP
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Thanks everyone. Very helpful!


Stage 2 SCC right base of tongue. 7 weeks radiation & chemo with erbitux. Peg tube. Concluded radiation treatments 5.7.09. Two recurrences, two surgeries. Most recent, a substantial glossectomy, 3/25/11. PEG tube. Minimal swallowing ability, but working on it.
SandySt. #95795 05-20-2009 02:50 PM
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Sandy

I LOVE my Therabite. My prothodontist thinks that the Therabite is way overpriced and he prefers that patients do the stretching exercises plus use the tongue depressers do it yourself therabite (you put them all together and slide another one in but mine just fell apart and I never used it after the first attempt). The first time TX back in 07 only reduced me down to about 25mm so I toughed it out. This time I could barely open one finger wide and with more radiation coming up, the Therabite has been wonderful. However I got it for FREE from my Speech Therapist as part of the Cancer program at Inova Alexandria Hospital. My CCC at Georgetown was going to charge me about $900 and under insurance I would have had to pay about $200 so I lucked out. Check with your insurance company to see if it would be covered,as well as if there are discounts from the hospital. It is just a piece of plastic with handles and graduated stops - not hi tech at all but it does work. There used to be a specific mention of it in the OCF materials and it is the only one with documented studies on its effectiveness.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #95820 05-20-2009 09:26 PM
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Posts: 253
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Charm:
Thanks for the info. I spoke to my doctor's nurse regarding one, and she said she didn't think I needed one, and that the Thermbite is more beneficial for rehabitative. For the time being, I'm going to be very conscientous about my exercises.

I get the feeling that my medical staff is not interested in preventative care. I'm always ahead of the game with them.
I must be driving them crazy.

Thanks again for the infl

Sandy



Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter

SandySt. #95849 05-21-2009 04:20 PM
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Sandy, you are very fortunate to be an informed patient. Going thru chemo and radiation really kicked my butt. I didnt post too often so was caught completely unaware. Ive been thru so much trying to regain a more normal range of motion and dont think I will ever get there. Its so much better to be ahead and not suffer from trismus. Being proactive is definetly a much easier way than waiting til you have something and trying to fix it.

Best of luck with your treatments.



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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