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Tongue Still Sore #199681
01-14-2020 11:36 AM
01-14-2020 11:36 AM
Joined: Jan 2020
Posts: 2
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Bethesda Offline OP
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Bethesda  Offline OP
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Joined: Jan 2020
Posts: 2
Diagnosed with SCC HPV 16 in July. Seven weeks Chemoradiation treatments ended Sept 30. I am now 15 weeks from the end of treatment and my tongue still hurts in the same place where this all started. Post treatment MRI was "clean". Eating is ok and speech a bit strained. Is it normal to have residual pain at the site of the where the tumor started. ?

Re: Tongue Still Sore [Re: Bethesda] #199683
01-14-2020 12:25 PM
01-14-2020 12:25 PM
Joined: Jul 2012
Posts: 3,263
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
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Joined: Jul 2012
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NYC
Bethesda,


Have you discussed this with your doctors like ENT, radiation and medical oncologists? What did they say and gonna do? It’s also where you received the most radiation at the original site? I know after radiation there can be an inflammatory response and or dead tissue. What my radiation oncologist did for me was to monitor the site, and I didn’t go for a PET scan until the 5 month mark. Some may do a scan at the usual 3 months. The can do a scan eatkier, but depending on when there still could be swelling, and show a false positive.

If you haven’t already, discus your concerns with your doctors! Good luck!


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Re: Tongue Still Sore [Re: Bethesda] #199685
01-15-2020 05:24 AM
01-15-2020 05:24 AM
Joined: Aug 2019
Posts: 48
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Barry Toronto Offline
Contributing Member (25+ posts)
Barry Toronto  Offline
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Joined: Aug 2019
Posts: 48
Bethesda. Discuss with your radiation oncologist and/or your pain treatment specialist. Coincidentally I was at the cancer centre yesterday under very similar circumstances. Completed treatment in October but recently felt pain in my tongue near the location of the original tumor. Mri and CT scans were completed over the Holidays - Dec 27 and 31.

Oncologist thought that the pain I was feeling was normal radiation pain. After radiation, scar tissue develops which can prevent normal draining of the area. Fluid build up compresses nerves which creates pain. Many nerves in the mouth area creates good conditions for pain recurrence. To put my mind at ease about a recurrence of cancer, oncologist scheduled a PET scan with a sucrose injection (?) which will “light up” active cancer areas in body.

I was relieved somewhat but still a bit nervous about PET scan.

I have come to realize that cancer is one of those things that causes you to be “always looking over your shoulder”. Every little ache or pain or rash is going to make you rush to judgement about a recurrence. I think this is natural - it is for me anyway. I’m just that psychologically vulnerable at this point.

My palliative care doctor also adjusted my pain medications to help with the pain. Hasn’t helped yet...

Good luck with your treatment.


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Re: Tongue Still Sore [Re: Bethesda] #199702
01-20-2020 09:53 AM
01-20-2020 09:53 AM
Joined: Jan 2020
Posts: 2
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Efrain Offline
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Joined: Jan 2020
Posts: 2
I am experiencing some irritation to the right side of my tongue where most radiation took place. I was diagnosed in March of 2019 underwent 8 weeks of Chemotherapy and Followed by radiation since my tumor responded well to chemotherapy. I finished Treatment in August of 2019 and had my first scan on November 2019 showed cleared!
But I wanted to ask if you as well have irritation with spicy foods? I think I might have irritated my tongue with the spicy food I ate, I also contracted the flu frown and now I think I have fever blister on the same side of my tongue.
Just wondering if you have had similar situation?


Efrain Quintanilla
Re: Tongue Still Sore [Re: Efrain] #199704
01-20-2020 09:59 AM
01-20-2020 09:59 AM
Joined: Oct 2012
Posts: 1,188
Toronto, Canada
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gmcraft Offline
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Toronto, Canada
Welcome to the forum.

It would help you get responses if you could let us know where the cancer was found — was it oral tongue, the mouth cavity, etc.

As far as I can see, I think it’s a bit too soon for spicy food. The radiation data age to your mouth will need a bit longer to heal.


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.

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