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#112491 02-15-2010 07:24 AM
Joined: Sep 2009
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Flip Offline OP
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I am now 8 months post radiation. My jaw muscle on the radiation side has started getting stiff. In the morning it seems a bit swolen and is painfull when I bite down.
Is this just the normal scar tissue type reaction. What have others experienced in this regard.

On another note, I think I have lost most of my sweetness taste. I can taste honey, but it no longer tastes sweet.


Flip
_________________________________
Age: 54 SCC Tonsil + 3 nodes
Radiation and Carboplatin
Treatment 4/1 - 6/7/2009
No surgery, no PEG
Never smoked
Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years)
CT 11/4/09 No sign of envolvement in Tonsil or nodes
Flip #112498 02-15-2010 09:46 AM
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Flip,
I had the stiff jaw, and still have problems (after 13yrs) of opening my mouth very wide. Also, had ear pain after my rad.
Had tonsil cancer in 97. Hang in there and be strong.
Best of luck for a speedy recovery.
Jean


I started in 1997 with a swollen glad in my neck. It was stage 2 tonsil cancer. Had radiation and a week hosp. stay. 2 mo. tube in throat. Lost 40 lbs. c. free until 2005. Tongue had surgery. Did good. 2007, another tongue, surgery. Am cancer free now. Went to OHSU. they are wonderful.
Jeanie51 #112510 02-15-2010 02:53 PM
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Flip,

Are you doing any type of mouth or jaw stretching exercises? I have a whole regimen that I used to do daily and still try to do once a week or so. The muscles can tighten and atrophy so you have to keep working them out. My speech/swallow therapist worked with me on these.

- Margaret


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
margaret_in_ma #112537 02-15-2010 08:00 PM
Joined: Jun 2007
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My jaw is stiff ans hurts too after closeing in on 3years, It sure can't be from, lack of execising it with the way my mouth runs. LOL At times it feels as if it is riping loose especially when I yawn. I am like Edith Bunker and try to stiffel thatyawning tho.


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 #112551 02-16-2010 05:31 AM
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Flip Offline OP
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I have been stretching my jaw. It only opens a little more than 2 fingers. I started getting worried after this discomfort started. It does not hurt to open, but when I close my mouth, I have to really bite down to get my right teath to hit after the left side has. It seems like the muscle is swollen a bit. Also when I chew on that side, I feel a tearing sensation at the top of the muscle up on my skull.
I have been massaging it to try and get it to loosen up. I am guessing it is scar tissue from the radiation. I don't get back home for another month, so I won't see my Doc for a while.


Flip
_________________________________
Age: 54 SCC Tonsil + 3 nodes
Radiation and Carboplatin
Treatment 4/1 - 6/7/2009
No surgery, no PEG
Never smoked
Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years)
CT 11/4/09 No sign of envolvement in Tonsil or nodes
Flip #112560 02-16-2010 06:57 AM
Joined: Mar 2008
Posts: 3,082
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Flip

With less than three fingers, you definitely have Trismus. It's been over 3 years for me, and I still have to do my Therabite exercises 5 times a day, each and every day. My jaw muscles ache, especially on the left side where I had the neck dissection. When you see your doctor again, ask about a new prescription for a speech therapist to work with you (even if you had it before - I am on my fourth round of therapists)
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 #112563 02-16-2010 07:50 AM
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Flip,

Just saw my ENT recently with just about the same complaint. He questioned my about how much it hurt and how often. I think the issue is fairly subjective as he took my answers and concluded that i was having normal issues with the radiation traetment to the jaw. He let me know that if it got any worse or the pain sharper, I should make an appointment and come back in.

He also wanted me to keep up with my jaw exercises (I'm at three fingers)

I'm not sure if this helps.

Kelly



Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #121197 09-01-2010 05:06 PM
Joined: Jun 2010
Posts: 153
"OCF Canuck, across the pond"
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Posts: 153
Hi,
FWIW, I just logged on with a similar question. My right jaw, where I had my radiation about four months ago, is getting stiff and sore when I close my mouth, and my teeth don't want to come together the way they used to, especially in the mornings (I wear a night guard that holds my jaw slightly open all night long). I've been told this is almost certainly from the formation of scar tissue in the area of the jaw.

As for opening my jaw, I can get three fingers, which I think is pretty much where I started (maybe a slight reduction). I only had radiation and chemo, no surgery (so far).


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #121922 09-19-2010 02:45 AM
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I just joined the group. I had radiation in 2000 (tongue tumor) and excision of a small lung tumor (metastatic?) in 2003. I had two dilation of the upper esophagus but I have to drink liquids in order to swallow. Got completely used to it.

Strange things are happening, however, now. After the radiation my left jaw joint (they call it, I believe, TMJ) always bothered me limiting opening of my mouth. Now, for a second time, I got some infection there resulting if further limitation of mouth opening and excrutiating pain. It has to be an infection - a week standard cure with amoxicillin brings an end to it - the worst pain is gone in 24 hours.

Anyone experienced something like that? Next Thursday I am going to see a specialist who will run a detailed X-ray of my jaws and joints. In the meantime, the infection will be gone so he will probably see nothing... The infection has to be in soft tissues - the almost immediate response to amoxicillin indicates that.

And I thought I was done with cancer afterf 10 or 7 years. OK, maybe with cancer but the radiation caused a lot of damage as all of us who got it know.

I was fortunate to have a general practicioner who referred me to a gasto-entero specialist who performed the dilation. Prior to that - only liquid food (Ensure). Still better than the gastric feeding tube - very impractical in restaurants.

Well, at 76 I am doing reasonably well except for these little unpleasant occurrences.

Goo luck to all of you!


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