#55806 11-16-2004 07:47 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | OP  "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Dan has been experiencing left sided jaw pain (tongue and neck cancer side) for about a week now. We can't feel any lumps but there is pain. He does have an oncology appt next week, but just wondered if anyone has experienced this. He has some swelling on that side, but I think it's always swelled on that side since surgery and treatment. He does not feel like it is teeth related. Any thoughts would be so appreciated.
God bless,
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#55807 11-16-2004 10:23 AM | Joined: Jun 2004 Posts: 85 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jun 2004 Posts: 85 | Debbie,
Do not jump to conclusions based on my situation. My swelling was an additional tumor that we subsequently removed. It manifested itself in an inability to masticate well, a chronic pain from the top of the ear to the base of the jaw and an increased pain during swallowing. My radiation oncologist didn't seem concerned, but the surgeon had it biopsied three weeks later. Good Luck.
T1N0M0 Partial Glossectomy 2/04, Recurrance w/ another P.G. 5/04. IMRTx33 7/04-9/04. T2N2M0 recurrance in throat, 11/04.
2nd tumor 1/06/05, Chemo 1/11-05 Died 02-16-05 Wife: Brenda
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#55808 11-17-2004 09:32 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Debbie
We have had an ongoing problem with jaw pain also but it has been diagnosed as TMJ.
Another problem we exprienced was a swelling in front of the ear in the same area. The swelling went down after acouple of days and the ENT diagnosed that as a blocked salivary gland.
Whatever it turns out to be it scares the hell out of you until diagnoses.
Let us know , we will be thinking about you.
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#55809 11-17-2004 10:53 AM | Joined: Jan 2004 Posts: 12 Member | | Member
Joined: Jan 2004 Posts: 12 | Debbie,
I had swelling for several months after radiation was over. It turned out to be swollen tissue. If Dan had his lymph nodes removed then it is very normal for the side of the neck to swell up, as the fluid that is usually dealt with by those lymph nodes has nowhere else to go. It takes a while for the body to learn how to 'deal' with that fluid. It does improve gradually. I have recently experienced jaw pain on the operated side, and it turned out to be apical abscesses which were infected. I had the pain for several weeks before the abscesses became apparent. I am told that they occured because I have several dead teeth resulting from the radiation to that area of the jaw.
You and your husband will worry about every twinge or anything abnormal with his mouth or face. It is normal!! I think that you just learn to live with it. Just make sure that you get everything checked out. That is all you can do.......and try to think positive.
Love Debbie
xxxx
Debbie T, from Southampton, UK. Cancer of tongue - stage 2(diagnosed 04/03). 45% tongue removed and reconstructed from left forearm, plus radical neck dissection (06/03). All followed by 33 sessions of radiotherapy (ended 09/03). Diagnosed at 43. Non -smoker, social drinker, don't know why!
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#55810 11-17-2004 07:12 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Debbie, I too have jaw pain that ebbs and flows on a schedual of it's own. The first time it happened I worried, now it is just part of the "new me" along with the neck muscle spasms, ear funkyness, headaches, ocasional thrush, thyroid issues, dry mouth, gray hair, etc.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#55811 11-18-2004 11:45 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Debbie,
I had a little scare a few weeks ago with swelling of many nodes in my left side neck and behind my left hear. There was no explanation and I had a PET scan just a few days before. I noticed when the weather got real cold overnight, it was very painful. This past week I have had a lot of tingling and itching on the left side. It seems like there is something different week by week but nothing to be alarmed about that I know of.
I did not have any surgery, just radation/chemo. I have heard from several nurses that the Cisplatin affects joints by causing deterioration. I have now developed arthritis in my right hip and am having surgery on my left shoulder tomorrow to remove some arthritic bone on my collarbone. I believe it was from the chemo but don't know how to know for sure.
I hope things are settling into a good routine down in Bama for you.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#55812 11-18-2004 07:37 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: May 2004 Posts: 137 | I am so so glad to read all of this, well not GLAD, you know what I mean. My left side is so swollen right now. It kind of feels hot to the touch too. And it isn't the side that I had the most work done on. Go figure. I was just about to post this question when I read all of these. I was thinking it is because I am trying so hard to get the mouth to open that I may have just over worked it since it never gets any movement. I still haven't recieved any word about the therabite or the dynsaplint. Though I have contacted both. I sure could use one of them...I wish there was a place here I would already have it. Thanks for the answers....Miss Vicki | | |
#55813 11-19-2004 03:42 PM | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jul 2004 Posts: 188 Likes: 1 | Miss Vickie, I got my therabite through ATOS medical. My ENT faxed them a prescription, and I had to pay in advance ($404.00) They then filed with my insurance, and I was reimbursed 90%. Here's their web address. http://www.atosmedical.com/ They're located in Wisconsin, and it took about 4 days to get mine once they got my credit card number. I was stuck at about 20mm and now I'm at ~35mm (2 fingers plus  ) It has made a significant improvement in my range of motion. Your ENT or ONC should be able to write you a prescription. Hope this 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 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
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#55814 11-20-2004 05:44 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Vicki, oh my gosh, you should have gotten some kind of feedback from dynasplint or therabyte by now. I am so sorry they haven't contacted you, do you need the # again or do you still have it. They are located in Maryland so I can always call for you if you want. Let me know! God Bless You, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#55815 11-20-2004 06:26 AM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | Regarding the vendors in question, a couple of years ago I contacted them and never, ever received a reply. So I did it myself using my fingers and now can open quite normally. Some people have used popsicle sticks. So Vicki, keep trying with whatever you have on hand. It can be done! | | |
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