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Severe Tongue pain long after treatment #197754
01-06-2019 10:50 AM
01-06-2019 10:50 AM
Joined: Jan 2019
Posts: 5
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Sunlion07 Offline OP
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Sunlion07  Offline OP
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Joined: Jan 2019
Posts: 5
Hi everyone! New here. I'm a 7 year survivor (2011) of Stage 4A Tongue and Lymph node cancer. I had Chemo and Radiation for 8 weeks (7 treatment and 1 week in a hospital over thanksgiving) My problem is I can't find any answers to my question/problems I'm experiencing now.

I had all the expected issues following treatment, but about a year ago I started new ones. I have slight swelling of my tongue with moderate to severe pain all the time. I also have pain in my jaw. It makes it extremely difficult to chew and swallow (I almost choked to death a few weeks ago at lunch but finally dislodged the food)! It seems to be worse in the colder months.

I have had every test you can imagine by different doctors, ALL coming back negative. My ENT doctor here (along with his colleagues in the office), had no answer or even an educated guess what the problem was or how to treat it. He referred me to USC Keck Medical Center. The ENT specialist there gave me the same answers my doctor here did, no idea what is was, what was causing it, or how to treat it.

Needless to say, I am quite frustrated! At one point I lost over 25 pounds in a 6 week period. I still can't eat normal, it has to be soft with small bites, and washed down every time. Can't finish a meal if it takes too much chewing and/or swallowing. It just gets too painful to eat.

So I was wondering if anyone out there have had, or know someone who has had, the same problem. Hopefully someone can give me some information to pass on to my doctors to possibly diagnose and treat it!

Thank you for your time!

Re: Severe Tongue pain long after treatment [Re: Sunlion07] #197755
01-06-2019 03:21 PM
01-06-2019 03:21 PM
Joined: Jun 2007
Posts: 10,196
PA
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

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Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,196
PA
Welcome to OCF! Many oral cancer (OC) survivors have been thru what you have described. The late side effects can be debilitating! Im sure if you spend some time doing a quick search of our posts and reading thru posts you will find many similarities between what you have been thru and what you find others here describe. Please read the very first post (titled .... Posting Etiquette) in the first section where it says START HERE. The section is named ("New Here, Read This First) take some time to read the Posting Etiquette to quickly learn the ins and outs of how our forum works. After reading that entire thread you will better understand how/when/where to post and lotsa of little pointers. This may not seem important but it really is very important to create your own new post and avoid posting on old threads which only confuses other members and can disrupt replies other members who could be seriously ill not get the help they need. Im not quite sure how long ago you finished rads? It takes an entire 2 years for OC patients to recover from rads. The better OC patients do with their intake the easier they will have it. Every single day patients should take in at least 2500 calories and 48-64 oz of water. It sounds like a TON!!!
Its really not that bad considering how OC patients burn calories at a significantly increased speed. Its not easy but it definitely does make a huge difference in your recovery.

Best wishes with everything!!!


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
Re: Severe Tongue pain long after treatment [Re: ChristineB] #197761
01-07-2019 01:37 PM
01-07-2019 01:37 PM
Joined: Jan 2019
Posts: 5
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Sunlion07 Offline OP
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Sunlion07  Offline OP
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Joined: Jan 2019
Posts: 5
Thanks for the info Christine. I spent 2 days reviewing many posts but could not find any specifically with my problems. Some with similarities, but not total effects I'm having.

If I posted this wrong or in the wrong place for people to view, please help me correct this since this is the first site like this I have joined and attempted to post on. Thanks in advance!

Re: Severe Tongue pain long after treatment [Re: Sunlion07] #197762
01-07-2019 01:58 PM
01-07-2019 01:58 PM
Joined: Oct 2012
Posts: 1,044
Toronto, Canada
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gmcraft Offline

Assistant Admin
gmcraft  Offline

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Patient Advocate (1000+ posts)
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Joined: Oct 2012
Posts: 1,044
Toronto, Canada
I gather your problem is with tongue pain and not the inability to swallow. I have not come across another member who has a similar problem during my time on the forum. Do you still have access to your oncologists (surgeon or radiation oncologist)? They may have a better answer than your family doctor. Or can your family doctor consult with your oncologists — the latter may be ina position to give you an appointment. Whatever the cause is, maybe it has something to do with the treatment you received? That’s just my guess as a lay person.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: Severe Tongue pain long after treatment [Re: gmcraft] #197778
01-10-2019 04:44 PM
01-10-2019 04:44 PM
Joined: Jan 2019
Posts: 5
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Sunlion07 Offline OP
Member
Sunlion07  Offline OP
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Joined: Jan 2019
Posts: 5
I do have constant pain in my tongue and difficulty swallowing. My oncologist retired right after I completed my treatment. Thanks for the info about not seeing similar symptoms/problems. I am getting the distinct impression that my case is unique as no doctor has been able to diagnose the problem and are clueless about what's going on with me.

Re: Severe Tongue pain long after treatment [Re: Sunlion07] #197779
01-10-2019 06:41 PM
01-10-2019 06:41 PM
Joined: Jun 2013
Posts: 270
alabama
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KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)
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Joined: Jun 2013
Posts: 270
alabama
Have any of your specialists tried the term 'referred pain' on you yet?

I was going through some very severe jaw pain over a year ago, and for quite a while. None of them could figure out just WHAT was causing it, and they all had (opposing) guesses, none of which seemed to be right when I'd try the suggested treatment. It's rather a long story on all that, but my best guess at the time was trigeminal neuralgia (which would have nothing to do with your tongue, so don't worry about that, I don't think it is the same nerves) ... they kept thinking it might be my teeth ... we all know what radiation does to those ... and that the tooth pain was being felt in my jaw instead. That was the closest anyone came to a consensus, but no treatment found.

Anyway, a year ago I had to have all my teeth out prior to getting dentures. While that's been a nightmare and a half all on its own, it did have one benefit ... somehow it triggered something that caused the jaw pain to stop. I really don't think it was the teeth, but maybe there was something further on in the jaw that got fixed in the process, who knows. But .... to make a long story a bit shorter ... 'referred pain' would be the key term. Your tongue is where you're feeling it, but the pain may be coming from another source altogether. Considering what a number the radiation does to our muscles and nerves, might that be a possibility? Something tightened up that's pulling a nerve in your tongue, even, and causing pain ... wouldn't show on a scan but sure could hurt.

If that's a remote possibility, and you do still have any scar tissue issues, one option might be to see a speech / occupational therapist. The one I saw to help with swallow way back, after my tube was out and I was doing better, had the most marvelous massage exercises for my neck (scarring from the neck dissection on top of the radiation issues), and I bet some of that would help, if there was some sort of strained muscle or nerve pulling away inside. I know that's a long shot, but at least it wouldn't hurt, not the way some med side effects do. (She had a colleague who was a master at calming migraines, too ... man, I wish I was still a patient there!) She also had massage techniques for the tongue scarring itself, some of which made the oddest nerve twinges ... so in a way, those might even help in a backhanded diagnostic way ... see if anything sets off a similar reaction, to help narrow it down?

It may sound weird, but I hate to think of you or anyone else suffering with no ideas left to go on, so I toss this one out just in case it gives some ideas.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Severe Tongue pain long after treatment [Re: KristenS] #197786
01-12-2019 09:16 AM
01-12-2019 09:16 AM
Joined: Jan 2019
Posts: 5
S
Sunlion07 Offline OP
Member
Sunlion07  Offline OP
Member
S

Joined: Jan 2019
Posts: 5
Thanks so much for the insight! I will discuss this with my PCP and ENT when I see them. It sounds similar but at times all I have is tongue pain which eventually leads to jaw pain and difficulty swallowing. I have had numerous swallow tests which always show a minor problem swallowing, but no treatment needed for that issue. I have also started teeth repair, but dentist says everything is normal except for the damage to my teeth from radiation, which currently is repairable.

I believe the main problem might be scar tissue in my tongue (which was indicated by all my doctors as a possible cause), but can't get one to definitely diagnose it or tell me what course of action needs to be taken to fix it.

So I keep trying to find an answer myself and appreciate all the feedback I can get! My list keeps growing of things to discuss with my doctors...LOL!

Re: Severe Tongue pain long after treatment [Re: Sunlion07] #197787
01-12-2019 08:20 PM
01-12-2019 08:20 PM
Joined: Jun 2013
Posts: 270
alabama
K
KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)
K

Joined: Jun 2013
Posts: 270
alabama
Try the speech therapist route, then. If you get one as great as I had, she (or he) should know a LOT of exercises for scar tissue in the tongue. Who knew that could be a specialty? Or that tongue massage was a thing? LOL. But it really did help recover a lot of maneuverability for me, and worked out a lot of the scarring ... if that happens to be what's causing your pain, then that's where you'd end up for treatment anyway. Might as well see if they'll give you a referral ... our doctors can be great specialists, but they don't spend solid minutes massaging our tongues the way a therapist might. (Yes, totally weird, and it's to teach us how to do it ourselves ... but they sure learn a lot about the way things 'should' feel in there and give tips how to make it work better.)

Anyway, good luck and please keep us all posted! Whatever you find out is bound to help others, too. ((hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery

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