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Thanks so much everyone for the great comments. Bart, I had a horse growing up in small town Texas. She threw me, kicked me, stepped on me, bit me, etc. & I still got up & rode her again. Guess that was good training for taking the lumps & getting up again !


58 yr old male, SCC left side of tongue 2/13, partial glossectomy, flap, 30 IMRT, 6 Chemo. Recurrence 10/13, lymph node removal, Brachy therapy 100, pec flap.
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That's the attitude right there, Compadre!

You'll do fine wading through this river of stuff. I can't promise you'll enjoy any of it, but you'll get through it and that's what counts!

Best of luck to you, Compa�ero!

Bart


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
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Keep up the good fight and hang tuff. Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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Hi Ammonsmg1 - I think we're in the same boat and maybe at the same stage, where the positive feelings from big goals reached in initial recovery (being able to speak again, getting the trach out, getting the feeding tube out) have sort of plateaud and now the big improvements aren't coming. So I think this may be a common phase that really sucks, where the improvements stop coming and all you think you have to look forward to is choking down 6-7 Ensures a day for the next 20 years. It's hard to keep from comparing myself to how I was before the surgery at this point, and not how I was in the hospital immediately after the surgery, which is what I'd been doing in the early intial recovery.

I'm going on faith and the attitudes of so many here in this forum that this phase will pass and that time will do its thing.

btw I feel the same way about this rebuilt tongue I have - way too big. Seems to me I'm going to have to have a discussion about 'de-bulking' it with the doc, though I have no idea how that will be received.


Joe
SCC BOT T3N0 Aged 36 (1999)
Unknown HPV status (before they knew)
SWOG Protocol - 2 rounds chemo, 6 weeks radiation
Recurrence Age 50 (2013) - same site
SCCa BOT T2N0M0
HPV negative
60% Glossectomy/Free Flap from Latissimus Dorsi Recon,
Neck Dissection + 6wks Rad Tx
Non-tobacco user
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Jneal - sorry to take so long - I sort of stopped looking. Your response was very encouraging. I feel like you understand my particular stage of recovery. Are you able to eat at all, or just surviving on ensure. I feel like that might be an easier option for me, since eating is a nightmare.


58 yr old male, SCC left side of tongue 2/13, partial glossectomy, flap, 30 IMRT, 6 Chemo. Recurrence 10/13, lymph node removal, Brachy therapy 100, pec flap.
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Ammonsmg1

Depending how large the tongue flap is you could seek advice about having the flap de-bulked. I�ve had it done a few times. It�s not a huge procedure, but nevertheless it�s still surgery. Surgeons build the flap bigger because radiotherapy treatments aimed directly at the flap can shrink and shrivel the flap, especially with chemotherapy combined. Most plastic surgeons allow the mouth cavity to settle at least 12 months before considering further procedures, but de-bulking is not uncommon.

Good luck.


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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