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Joined: Jun 2009
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Hi Bethers,

I am about 18 months post treatment. My taste is basically to normal. However, many things that aren't spicy taste too hot for me. For example, last week I found crab soup and a balsalmic dressing too spicy! I can now handle carbonation (limited amounts of beer and diet soda) with ease but had to stop drinking wine (metallic taste).

I would say that my ability to handle acidic foods or carbonation was very up-in-the-air for the first 9 months post treatment. What I could handle or crave would change even week to week.

Most everything is normal at this point. Occasionally, I am surprised (like the crab soup and dressing) but most things are predictable. However, I do find myself subconsciously avoiding foods that require more chewing (grilled meats) but that seems natural with limited saliva.

Good luck with the biopsy! Hoping for good results!





Age 23 at Dx - Oral Tongue SCC, Stage IV, T3N2bM0, HVP-negative
Non-smoker, occasional beer, exercise daily
Treated at MD Anderson (consults at Johns Hopkins and Sloan Kettering)
3/2009, 6 rounds paclitaxel, carboplatin, cetuximab
5/2009, Partial glossectomy and left-neck dissection (39 nodes removed)
6/2009, IMRT 60 Gy in 30 fractions, PEG
10/2010, Spontaneous Pneumonmediastinum
Now, Still doing great with minor long term side effects (low WBC, neuropathy, arthritis in jaw)

Joined: May 2010
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thank you. Ya i find myself staying away from any meat that isn't ground. And it's sad cuz i used to love boneless skinless chicken and it always tastes dry now no matter how i cook it, and i used to love poached turkey breast, and i haven't tried that yet, but will for thanksgiving, so hopefully that wont be so bad.

My preliminary results from todays biopsies came back negative. they biopsied my tongue by my reconstruction seam, my lower jaw right below my bottom front teeth, left and right soft pallet and anterior floor of mouth. They also said that 90-95% of the final results match up with preliminary results. So I am happy and consider myself to be ok for now.

thank you for all the support and help.


25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
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Posts: 8,311
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White meat chicken is the hardest thing for me to eat even now unless it's smothered with thick, juicy, fattening gravy! Dark meat is better and so is a well marbled steak like a delmonico.


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.
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Try chicken wings in a wine sauce. They are pretty moist. I can't eat white meat chicken breast at all and don't like dark, so it's wings for me. They are also good fried. Turkey breast works with lots of gravy. A nice rare steak or lamb chops too. I can't eat ground meat at all unless in something like stuffed pepper. Hamburger just gets lost in the gutters of my mouth.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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I lump legs & wings in my "dark meat" category.


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.
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The "trick" is, the more fat content the meat has, the easier for most of us to eat.

I told my GP that if that messed with my cholesterol then they would have to adjust my meds because I was going to eat smile. In actuality, my LDL and triglycerides have dropped post treatment, almost to the point I may get to come off of the cholesterol meds.


18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
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I am 18 mos post treatment and I still can't stand the sight of a piece of chicken..........it even looks dry. I can eat almost everything as long as it is accompanied with water or covered with a sauce. And my husband and I subscribe the the "Jack Sprat" method of eating steak - he eats the steak and I eat the fat. I will attempt to eat steak at home but never eat it in a restaurant as I am always afraid of choking on it. I am finally enjoying food again, but have never gotten my sweet taste bud back.


DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
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