| | Joined: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Mar 2011 Posts: 130 Likes: 3 | Hello family, 6 years post chemo / rads I am running into some more problems. This week I started accidentally biting my tongue . OUTCH !!!. Then the other day I was having really bad neck spasms in my neck and started to notice that I was slurring my speech a bit. Now my tongue feels like it's a bit paralyzed on one side. It's crooked and I'm unable to gather any saliva from that side. I've read a bit about this and I'm wondering what OCF members have experienced this and if there is anything they they have found helpful.
Much thanks.
Will
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Hey WIll! Nice to see you posting but Im sorry its due to a problem. My cancer was in my cheek and jaw so I havent been thru the problems you mentioned. Hopefully someone who has been thru this will reply sometime soon. I always err on the side of caution and suggest seeing your ENT for a good check up to make sure you're ok. We can never be too careful after what we all have been thru. Good luck!!!
Hope its nothing serious and resolves itself quickly. Feel better soon!!!
ChristineSCC 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  | | | | | Joined: Sep 2016 Posts: 111 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2016 Posts: 111 | If your tongue is crooked and saliva production is noticeably lower on one side, you may have something pushing on the main nerve on one side of the tongue at the base.
Don't wait, schedule a visit to your ENT as soon as possible. Could be an issue at the base of your tongue. Hard to spot and usually found only with scans.
Good Luck (Don't wait for this to resolve itself.)
1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 |
Hi Will, the symptoms you describe are what started us on this journey.
Kris began having trouble with his speech. Slurring his words. Not always in the beginning, but over a couple of months it became consistent. He also wasn't able to stick his tongue out straight. It deviated markedly to the right. Turns out that he had a lymph node that was pressing on the Hypoglossal nerve. This nerve inervates the tongue.
I recommend that you see your oral cancer ENT to get this issue looked at.
Wishing you all the best,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Mar 2011 Posts: 130 Likes: 3 | I'm please to report that (per my scans) it was neither a stroke or a re-occurrence of cancer. It is some pressure on my Hypoglossal nerve from fibrosis resulting from radiation 6 years ago. It looks like I might even have some options to correct it. HUGE PHEW and thanx for your replies !
Will
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | Joined: Feb 2017 Posts: 67 Likes: 1 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2017 Posts: 67 Likes: 1 |
Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Thanks for posting the update. Congrats on the great news. Options, no cancer or stroke are always positive things
ChristineSCC 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 | | |
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