Previous Thread
Next Thread
Print Thread
#173303 10-30-2013 05:04 PM
Joined: Jul 2013
Posts: 17
JoelB Offline OP
Member
OP Offline
Member

Joined: Jul 2013
Posts: 17
Im almost a year out of my last treatment of radiation. Now Im experiencing severe mouth pain. Pain on my tongue where my surgery was and radiated. Pain in both my upper and lower jaw, pain in the neck which was dissected and radiated also a sharp pain in my left ear as well...My doc thinks it's nerve pain and effects from the radiation, although he did order me a pet scan next week just to make sure. My first pet ever.. Any suggestions as what it might be from? Im not really worried about the pet, Im thinking its nerve pain and radiation effects....
Thank You.


DX-JUNE 22, 2012
STAGE..III
HNC--TONGUE
HPV--QUESTIONABLE
SURGERY...JULY 17TH, 2012
40% OF TONGUE REMOVED
FREE FLAP FROM MY LEFT FORE ARM (DIDN'T WORK)
RND
RT
XERSOTOMIA

VERY BLESSED

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
It could be scar tissue or nerve pain as your doc suggested. I think you are wise to get checked out with the scan to rule out anything serious. Hope you have some good pain meds so you are more comfortable.

Best wishes!


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
Joined: Jul 2013
Posts: 17
JoelB Offline OP
Member
OP Offline
Member

Joined: Jul 2013
Posts: 17
Thanks Christine...Im only taking Tylenol and Iboprophen....Dont want to take any narcs....So far they are working but Im kind of scared Im doing damage to my kidneys and everything....


DX-JUNE 22, 2012
STAGE..III
HNC--TONGUE
HPV--QUESTIONABLE
SURGERY...JULY 17TH, 2012
40% OF TONGUE REMOVED
FREE FLAP FROM MY LEFT FORE ARM (DIDN'T WORK)
RND
RT
XERSOTOMIA

VERY BLESSED

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
As long as you arent overdoing it with those meds you should be ok. Ive heard good things about Motrin. Im not sure about all the side effects of all the over the counter meds.


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
Joined: Jul 2013
Posts: 17
JoelB Offline OP
Member
OP Offline
Member

Joined: Jul 2013
Posts: 17
Im pretty much taking 6oomg of ibroprophen then 3 hours later 2 extra strength tylenol, then about 6 hours later more ibroprophen...the cycle like that..lol...seems to work most of the time...I am a radio dj, so I talk on the air for 4 hours a day and I think that really does a number on my tongue at the end of the day...


DX-JUNE 22, 2012
STAGE..III
HNC--TONGUE
HPV--QUESTIONABLE
SURGERY...JULY 17TH, 2012
40% OF TONGUE REMOVED
FREE FLAP FROM MY LEFT FORE ARM (DIDN'T WORK)
RND
RT
XERSOTOMIA

VERY BLESSED

Joined: May 2009
Posts: 1,412
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: May 2009
Posts: 1,412
Im four years out and I still have neck pain and tongue pain. I did not have a dissection. Saw my ENT recently about a new pain, and he said its all radiation related. The gift that keeps on giving. smile


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Jun 2011
Posts: 54
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jun 2011
Posts: 54
I struggled with pain even 7 years out. Radiation gives and gives.....

Up until this February I had bad nerve damage. But at that time they removed my tongue and did a tongue flap. But now I have neck pain from my second neck dissection. I take lortab for that. Sadly, I believe I will be on pain meds for the rest of my life.


Age 44. Diagnosed at 34 (2006) with T1N0 SCC tongue on right side. Neck dissed & 6 weeks Radiation. 30% tongue removed. Never smoked;
2nd recurrence 1/2013 on left side. Surgery to remove 2/2013 forearm flap/neck dissec T1N0; brachytherapy 4/2013;
3rd recurrence 11/2015 mandibulectomy for jaw bone cancer Stage IV/no lymph node involvement
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
It could be a combination of everything...tongue surgery, RND, flap, RT, Dry mouth. Tylenol and Ibuprophen can damage the kidneys, but may not be damaged already, so ask the doctor. Physical therapy may help, and lyrica or Gabapentin for nerve pain. There are pain meds without Tylenol, Ibuprophen. Treating the dry mouth is another that can be done. Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Dec 2013
Posts: 78
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Dec 2013
Posts: 78
Hi,

My doctor has suggested mt free flap, and i saw on your signature "(Didn't work)".
Would you please explain, i what sense / context the reconstruction (free flap), didn't work in your case. You help will be highly appreciated if you can reply in next 2-3 days. I have a surgery next week, and my ENT insisted me not to operate without an option of free flap in my case. I also like to hear your experience of having free flap, its overall outcome, and reasons you believe it didn't work for you. Any side effects, or major impacts caused by this reconstruction? I also like to know, how old are you.
Anything relating to free flap, if you can elaborate will e highly appreciated.
Thanks


Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear

Moderated by  Eva Grayzel 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,924
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5