| | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) |  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | My taste and saliva came backl in spurts at 4 month post Tx, 5 months, a great improvement at 14 m onths and a tad more at 24 months. Takes many months for your body to heal from this horrific treatment.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2013 Posts: 32 Likes: 1 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2013 Posts: 32 Likes: 1 | Thanks all. Sounds depressingly like taste can take awhile. Luckily my shakes taste fine (sweet seems better for me?). Salt is totally missing which ruins all normal food. Anyway, it's still so early; I just need to learn patience! So glad to hear of so many of u doing well overall!
Laurie
42 yo
Pediatrician
No smoke, social drink, HPV neg
May 2013 - SCC Right lateral oral tongue - stage 1 (T1N0M0)
Partial hemiglossectomy and sentinel node bx NEG
NED 5/29/13
3/2014 - Cancer back (never gone) in one right sided cervical node
Modified neck dissection 3/2014, N1 with microscopic ECE,39 nodes neg
30 Rads and 2 cisplatin done June 13!
PET in 3-4 months but no clinical cancer and I'll take it!
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I was never a big sweets eater but like you post Tx and even today my sweet taste is the strongest so now I'm a BIG fan of anything sweet. 
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | I had a problem with tasting sweet for several years, especially in fruits. It's finally starting to come back, three years after radiation. I found sea salt, like pink Himalayan, to taste better than regular table salt, but still have a problem with salt either being too little or too much. I still ask others to taste my food to see what they taste, food needs.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
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