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Frankie #185140 09-12-2014 10:13 PM
Joined: Dec 2003
Posts: 2,606
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Frankie, with cranial nerve XI irritated, it may take a while to get the muscles going on the top of the shoulder and scapula on the side it was moved around. I hope the PT explained even if it hurts, you need to keep it stretched and iced as often as possible along with some exercise to keep the blood moving. That's the biggest challenge in preventing permanent atrophy. It may hurt for a while but you should get decent range of motion and reduced pain with time.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Frankie #185158 09-15-2014 07:25 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
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Alpaca... The nerve they cut in your lip will likely regenerate over time - just a longer time. Each cell in the body has a lifespan based on the type of cell it is. You may never get 100% but you may get close. It just takes longer for nerves. Eric statler here (he's in and out of this forum) I'm not sure how long it's been since his battle and surgery but he's started going for therapy and now able to move his mouth etc... Where before he wasn't. Kudos to you for troubleshooting and coming up with solutions. Hugs


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
Frankie #185279 09-18-2014 03:24 PM
Joined: Nov 2009
Posts: 644
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"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
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"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
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Thanks Cheryl. Music to my ears. SLT is not encouraging about return of feeling but RO said feeling could return but might take about 2 years. I met a man the other day whose sense of taste came back after that time so as you say, the lifespan of cells.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Frankie #185288 09-19-2014 07:34 AM
Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
I have to tell you every day my taste improves and i used to avoid bread because it was not only bad for you but hard to swallow. Now I can eat a sandwich or bagel if I choose. It's been 40 months since I finished treatment and this has only happened over the last few months. Patience smile and hugs


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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