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"OCF Down Under, Kiwi"
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"OCF Down Under, Kiwi"
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Joined: Nov 2009
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Pain is like that from my experience. Pain seems to be referred to the ear in my case too but of course you should report the pain to the docs! I wonder if it's positional in that when you're lying down things seize up a bit and set of a pain chain reaction. Last time I had no pain at all towards the end of my 10 days in hospital and then had such bad pain when I got home that I rang the hospital and they sent me to A & E to have my meds sorted out.There doesn't seem to be a straight line decrease in pain.

Good luck and congrats on doing so well otherwise.


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.
Joined: Apr 2015
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Thanks Alpaca. I did speak with the Dr's PA and she thought it was referred pain. I agree there maybe a connection with lying down so have been trying to sleep with head elevated and staying on prescription meds at night. Did much better and actually slept later into the morning. No rhyme or reason....just when something feels better something else starts to hurt. Go back to see Dr on Monday


Biopsy 4/14/2015
SCC stage 1 Right side of tongue
Full Body PET all clear except for above
Partial glossecetomy and rt tonsilectomy 6/2
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
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SO glad you did okay... pain is weird... it could be fluid or something too. Hugs and keep feeling better. ;o)


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: 11
Thanks Cheryl! Everyday is better! Had a great follow up visit on Monday and heading to finish recovering in Hopetown Abacos Bahamas!

Thanks to everyone! This group has been so great and supportive! A true treasure chest of information and advice!!!


Biopsy 4/14/2015
SCC stage 1 Right side of tongue
Full Body PET all clear except for above
Partial glossecetomy and rt tonsilectomy 6/2
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
Posts: 5,260
Likes: 3
I did the same thing. Ran away to mexico to recover post surgery and prior to rads...
heal and feel better...
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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