| | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) |  "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 |
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
| | | | | Joined: Jan 2012 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jan 2012 Posts: 26 | I'm getting radiation directly to the tongue, and submandibular lymph nodes. Encouraging to know taste will come back eventually, though it could take months or years. Ugh. Today, eating some hot cereal (quinoa and strawberries) I gagged a *lot* and coughed for the first time. Here we go... Day 11 of 27 tomorrow.
-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Usually months - Ive gained 3 lbs recently because i am eating more because things taste better. There has been improvement yearly for some people but I found the bulk of it returned within 6 - 12 mos (I'm at the 10 month mark -post rads) now if only I could find my sweet  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
| | | | | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Dec 2010 Posts: 291 | On one of my busiest days I find myself drawn to this website and even posting . . .
My taste experience is that I kept it mostly through treatment until the end, then afterwards it was bad, or hit and miss for a while, not sure how long.
Then sometimes I was better, sometimes it seemed like I went backwards, but I think it was just that my taste was changing slightly (an adjustment).
Now a year out it is pretty good, not perfect, but my saliva is a lot better, and that seems to help my taste buds. I don't doubt that for some people it is two years. That is maybe not good news to you Ben, but it is great news if you are 1 year out and would like it to get better.
Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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