| | Joined: Jun 2008 Posts: 51 "OCF Down Under" Supporting Member (50+ posts) | OP  "OCF Down Under" Supporting Member (50+ posts)
Joined: Jun 2008 Posts: 51 | Hello all, it has been a while since I last posted, but have had a rather busy time. I am still having much pain in my mouth jaw and neck, the tongue or what is left of it still burns constantly, I am on Fentanyl 100microgram patches plus liquid ordine for breakthrough?? pain and other meds to help with other things that have occurred as a result of my treatment. I have been told that the pain will probably be with me for years as it seems my chin bone has not come together as it should have but as far as the rest of the pain goes there are no answers. I am having another MRI soon aas my voice has become very croaky and I sill have great difficulty swallowing (I still have my peg).
Many thanks for listening,
Margie
SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Nice to see an update from you Margie. Im sorry that you are still struggling. Oral cancer treatments weather its surgery or radiation take a long time to recover from. No timeline on the peg tube, dont sweat it. Hvae you seen a nutritionist to assess your swallowing capabilities? That might help you with eating. Glad to see your pain is being managed. I read your old posts and remember how you suffered, glad that is fixed.
Wishing you all the best in yoru recovery.
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hi Margie,
Sorry to see that you are still having and suffering with so many issues after all this time.
Hope the MRI can shed some light on some of it.
Please keep us updated.
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
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