#54991 06-01-2004 02:30 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | The inside of my mouth has improved 100% since radiation but I wonder if my tongue will ever feel more normal?? Does anyone else have issues with their tongue? I didn't have any surgery to my tongue but the radiation seems to have done a number on it. The left side that received more radiation is the one giving me trouble. First I had a horrible radiation sore that finally resolved and now I keep irritating it with my teeth. I will develop a sore then it will go away, but that side of my tongue always feels different. Any input?
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#54992 06-01-2004 06:13 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | I have radiation damage on tongue - nothing serious and nothing compared to the radiation damage in the back of my throat (I have no uvula for instance - of course I don't snore anymore either). I have one small spot that looks like a divot. It took a long time for my tongue to recover from all of the abuse. I also had radiation sores on the sides of my tongue and talking caused them to rub against the teeth - it was very painful. Thank God that's all over with...
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#54993 06-01-2004 06:34 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Minnie,
It was a very slow process for me (probably way over a year), but eventually my tongue began to feel more normal. Since I had surgery before radiation, I ended up with a lopsided tongue that took a lot of getting used to. Then the radiation brought on swelling that lasted for months, and left it feeling so clumsy that it was hard to talk or move food around when I was trying to eat. After the pain and mouth sores subsided a bit, I had numbness for a long time and, like you, I ended up biting down on it sometimes by accident.
It has been about as normal as it's going to get for more than a dozen years, and the left side (where most of the radiation was done) still feels "different", but very manageable compared with the first year or two after treatment. It's one of those things where it's hard to see day-to-day improvement -- it's more of a month-to-month process, I think.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#54994 06-01-2004 08:13 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | I didn't have surgery either. I will often feel soreness on the right side of my tongue where the tumor was. A few months after treatment ended I was scrapping this yellow-brown crusty stuff off my tongue, but they told me that was normal considering the radiation. My tongue will get fatigued when talking for a long time or eating things that require a lot of "tongue work." I'm more aware of what's going on with my tongue and my mouth than I ever was before dx.
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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#54995 06-01-2004 09:23 AM | Joined: Apr 2003 Posts: 33 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2003 Posts: 33 | I am out of Radiation/Chemo 18 months and still have a very similar problem with the left side of my tongue. I think the radiation scatter from an implanted tooth could have over dosed me somewhat. I also irritate it with my teeth or by eating something abraisive at times. I am able to eat most anything now even though the overall healing of my tongue has been slow. However it seems this place on my tongue doesn't want to completely heal. I am hopeful another year will see it resolved. You should certainly see more improvement with time!
Weldon
Base of Tongue SCC, Stage IV, surgery, Rad X 38, Cisplatin & 5FU X 3 | | |
#54996 06-01-2004 12:56 PM | Joined: Oct 2003 Posts: 52 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2003 Posts: 52 | Minnie,
When Marcy's tongue would be further irritated by her teeth she would put wax on her teeth or tooth that was rubbing against her tongue.
She got it by the dental floss area of a drugstore.
Good luck,
Michelle
Michelle, sister to Marcy
Dx January 03, partial glossectomy/selective neck dissection T2N1MO/recurrence June 03, radiation and chemo/recurrence Dec. 03 mets to spine and base of skull//palliative care//lost her April 10th 2004 Age of 32
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#54997 06-01-2004 01:07 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | Minniea,
I am over 2 years post treatment but still have problems with my tongue although not a serious one. My experience is slightly different from most people here because the right side of my tongue suffered more than the left side which received the most radiation as my tumors were all on the left. Even the oncologist could not explain why. Those 'ulcers' on my tongue had caused a lot of pain for at least a year especially when the sharp edges of some of my teeth rubbed against them. My dentist helped to smoothen the edges and it helped a bit. As time went by, the pain became less and today I can forget it for most of the time particularly when I am occupied with something else.
Karen.
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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#54998 06-01-2004 02:59 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | One other point about irritation from teeth -- I found it was going on often enough (and sometimes while I was asleep) that for some time now I've been wearing both upper and lower night guards when I sleep.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#54999 06-02-2004 02:40 AM | Joined: May 2004 Posts: 34 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: May 2004 Posts: 34 | Has anyone who experienced swelling in their tongue from radiation finally gotten over that - and how long after the treatmeent ended? My sisters tongue was quite swollen, has now gone down due to steroids but is still swollen to the point where she can't talk.
Caregiver/twin sister to Cathy diagnosed with tongue cancer Feb. 2004/partial glossectomy and neck dissection Mar 2004/recurrence may 2004
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#55000 06-02-2004 11:09 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 | Minnie, My tongue on both sides has a strange feeling like numbness at times, painful at times. It is more at the very back of my mouth. When I move my tongue back and forth it hurts back there. It can't be from rubbing on teeth because they yanken them all out.  The doc said as much radiation as I had, it may never feel the same as it used to. 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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#55001 06-02-2004 11:10 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 | Carol,
My tongue never did swell up.
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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#55002 06-02-2004 06:37 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Carol,
my tongue didn't swell up either. I had the full amount of radiation (including the "boost"), IMRT that is. Maybe if she had XRT that would be a factor.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#55003 06-02-2004 11:40 PM | Joined: Sep 2003 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2003 Posts: 30 | Carol, My tongue did swell up.
Mary | | |
#55004 06-03-2004 05:25 AM | Joined: May 2004 Posts: 34 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: May 2004 Posts: 34 | Mary - how long before the swelling subsided?
Caregiver/twin sister to Cathy diagnosed with tongue cancer Feb. 2004/partial glossectomy and neck dissection Mar 2004/recurrence may 2004
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