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I'm one year out and still find eating a chore and when I eat it's a 2yr old sized portion, no joke, my 2yr old actually eats more than me! I still supplement twice daily via peg since it takes me so long to eat and the drs think i'm way too skinny and need to fatten up.

My taste buds are getting a little better, I can taste most things but a little altered. My tongue will still burn quite a bit on random things that aren't even spicy or acidic.

I can't drink without adding some thickener to my drinks because I aspirate on thin liquids.

I say with time, he will get better, hang in there!


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
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EllEll and others,

Look the thing about our S L O W recovery is that it is S L O W but and there always is a but, do not think early on that this is the way you will be for the rest of your life. It's frustrating for sure but for the ones of us "lucky" enough to just get the chemo/rad we do recovery a great deal of our pre Tx saliva and taste and the joy of eating will return. For me, it wasn't until my 15th month post Tx that I had a bust of improvement that left me satisfied that if I didn't recovery anymore I could live with it (like I had any choice, but you know what I mean). I saw another slight improvement at 24 months and nothing since. I estimate I'm back to 90% of pre Tx levels. Even at my estimated 90% I can tell that my taste is not as sharp and still drops off the more bites I take and I still do get dry at certain times but please just try and give yourself a good 2 years to recover.


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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David, can I have the 10% you aren't using? LOL Thanks buddy.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #122095 09-22-2010 09:09 AM
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Thanks so much for all the responses. I'm sure Dave will thank you too because this means I can lay off nagging!!! He is working hard on keeping up with those 3000 calories so for the time being I won't worry about what he is eating to do it. We were just talking today about what his cholesterol is going to look like . It is so true about wanting those comfort foods. He's become a root beer float addict!!! So random.


CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
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Another big thing in regards to learning to eat again is texture. Anything that had a rough texture or of course spices I wouldnt eat. The first time I tried chinese food I was at a buffet. I frantically ran to the beverage refill section and gulped glasses of chocolate milk to ease the burning. Mashed potatoes that are homemade and arent blended smooth I cant eat.

Have Dave try pancakes with butter and real maple syrup. The chemicals in processed syrup can burn your mouth. Thats something that is fattening. It will be a while before he needs to be concerned about low cal foods.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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I would bet his cholesterol count is much lower. Now my worry is the sugar count from eating tons of cookies, but my PSA went way low and so did the Cholesterol. I sure do agree with Christine on the homemade mashed potatoes . It feels like a mouthful of sand. Christine is up on everything and I read all of her posts for their wisdom.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #131692 03-20-2011 09:41 PM
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I don't know if I can respond to old listings ...but I was shocked at how right on the food selections were ...I eat all the same things ..cookies, snack cakes, desserts, and yes too whipped potatoes get stuck up in the roof of my mouth along with soft breads, Cannot drink carbonated soda - has to be flat ..juices have to be diluted. My Ensure is mixed with Ice Cream to give it a thicker texture. But I worry about my diabetes and cholesterol. So far I am not too bad as my portions are so so small - give up often trying to work it down my throat to swallow and there is not so much pleasure - I used to LOVE food! - I just eat off my husbands plate. Desserts are more desirable.


54 Year Old Female Non Smoker - Non Drinker
Stage 3 Squamous Carcenoma middle tongue, Surgery 9/3/2010 15 hour operation, Neck distention,right - 19 lymph node removed/ok -some tongue dysplasia - free flap/forearm, left arm, skin graph-thigh, lip split/jaw 1 tooth removed/PEG
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All these posts on food tonight. I guess I have to admit I've given up on eating solids as of late.

Of course we are all different in side effects etc...but with the tongue and facial paralysis coupled with the other effects it's just too much for me if I want to try talking most of my day...and I'm not good with that for long periods either. To maintain my weight and muscle content, which seems to be ever increasing lately, I just stick to Ensure Plus mixed w protien powder. I do make an effort to eat some solids everyday, but I'd rather not.

I don't even get up for desserts anymore (as a wrestler they were always my vice sucking weight) due to my teeth falling out of my head.


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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