| | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | Ok here is another weird question. !6 weeks out now feweling pretty chipper. I am eating all sorts of food, still not great taste buds, they will come back. I ate a hot dog the other day, real health food. I have nooticed that my jaw doen not open as wide as it use to. I noticed it at the dentist too. Have any of you experienced the same and do you know a good jaw exercise?
When I ate the hot dog I had to eat it like a rat, little nibbles from the side. Call me rat man!
Thanks, Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | Joined: Mar 2009 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2009 Posts: 147 | LOL Ratman! Jaw opening is a definate problem - MO called it Trismus. At the onset of treatment my MO told me to not let the opening get smaller that the width of two fingers put in sideways - get the visual. Anyway, he gave me a wad of tongue depressers and said to put them in my mouth everyday as exercise. I did - sort of. Anyway I was able to keep it at "two fingers" and once out of treatment by adding more tongue depressers, I got it back to 3 fingers wide open. Woo-hoo I can get a hamburger in it now. So, get some popsicle sticks/tongue drepressers and just keep adding a few every time you can and stretch it open. I did this as many times a day as I thought of it.
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | LOL , I wonder how good that dog tasted. No my mouth doesn't open near as wide as it did. But I would love to be able to eat a hotdog with onions and mustard one day.LOL I just tried the fingers to see how many will fit. Not even 2 and I am sure glad my vertical blinds are closed. Good luck and the best to you.
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
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | There is a piece of equipment called a Therabite which is supposed to help with trismus. Do a search here and on the main page for more info.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Steve,
That is trismus and will only get worse if not treated. You need to do jaw exercises to keep it from getting worse. Some people use tongue depressers, some get a therabite. I even had PT by a someone who specilaizes in trismus which involved intra and extra oral massage. Yawning can also help. Bring this to the attention of your doctors and they should be able to help you.
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
| | | | | Joined: Feb 2007 Posts: 77 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2007 Posts: 77 | I have done jaw stretching exercises every day since I started treatment, over 3 years ago. I do 40 full repetitions, opening my jaw as wide as possible for each repetition.
I have no idea if this has helped, but I can open my jaw 4 fingers wide.
Best wishes,
Chris
SCC left tonsil, 2 lymph nodes, modified radical neck dissection, IMRT (both sides) completed 10/25/06, Erbitux and Cisplatin weekly, Ethyol daily
| | | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | thanks everyone. I will do some exercises to open my mouth up. So many of these litle things to deal with! I do know that I will get better and one of these days take a BIG bite out of a hot dog, hamberger or ???, no more Ratman!
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Steve:
3 years out and it's still a daily struggle at times. There are still days I take a page from your "Ratman" book. HAHA, that was good. At least we can still Gnaw on it..
Stay positive, keep exercising, and stay after it. Most importantly Keep Smilin', it qualifies as exercises!!
Best Regards,
Steve F.
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 |
Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | | | | Joined: Oct 2007 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2007 Posts: 71 | I am a little confused. I was doing jaw exercises everyday then when I went to my ENT claiming of pain he told me not to do that because it will make my jaw worst. So I stopped and yes the pain has decreased. I also have the 2 fingers but have 3 fingers with my teeth out. LOL Boy do I miss biting into a hot dog so now I just cut it up in little bites but it's just not the same. I think I may want to question my ENT a little.
Tammy 43 yr non smoker- Dx-10/11/07 Stage 4 Tongue Cancer Surg.10/17/07, 1/4 Tongue and 14 Lymph nodes 5 positive, Peg tube/Chemo port,Chemo 3 wks/Radiation 6 wks begins 11/07 end 02/08.Teeth removed prior to radiation. PetScan 05/08 CLEAR 09/09. 2011 diag. w/osteoradionecrosis.100 HBO's
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