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#153507 08-21-2012 09:00 PM
Joined: Mar 2011
Posts: 1,024
tamvonk Offline OP
"OCF Kiwi Down Under"
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
I am so excited. Kris had the usual monthly follow up today and we asked about the speaking valve. They went ahead and inserted it right then and there. Oh to hear him make noise was sensational. I am so excited and weepy with emotion too. Now he can't use it for a week to allow the swelling to go down so I will have to be patient. Then the practice will start in earnest. Not having a tongue to make the sounds will make this a difficult process, but practice, practice, practice. He wont ever get clear speech and many sounds will be impossible to produce, but any form of speech is surely better than none. He has been very isolated without speech so here's hoping.
Oh and his scope was great. (I'm still scared to say ) NED.
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: Oct 2011
Posts: 225
"OCF Down Under"
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"OCF Down Under"
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Posts: 225
Tammy, that is so fantastic! Best wishes to you and Kris.


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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"OCF Down Under"
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You already have my best wishes for Kris and yourself on his ability to be able to communicate with time and practice.
Nothing better than to hear the NED and I am looking forward to hearing how he gets once the swelling goes down and he can make a start.
Love to you both,
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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"OCF Canuck"
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That's so fantastic!!! Hugs to you both - it's a long road but you're doign it together and will get there!! Take care!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Posts: 945
"Above & Beyond" Member (500+ posts)
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Joined: Jul 2011
Posts: 945
Tammy - great news. When I was in college, I tutored other students in math and statistics. Since I could do it pretty well, I was soon assigned students with physical handicaps. My blind students always felt that deafness was the worse handicap, as it impacted communication. Although we never discussed that being without speech would be like, I think they would consider it equally as hard! I am very glad that Kris will be getting his speech back - for both of you!
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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