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#68690 01-28-2008 04:17 PM
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Never could spell bisquits right but I sure can eat them. Mom made a pan tonight and I had to try one my goodness it was good. Yeah I had a glass of water right there and she made meatloaf. I still have a hard time eating potatoes and rice but I can eat alot of things only I have to keep my water ready. Still no saliva but I can eat. Is that weird?


49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
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Thats absolutely amazing!!!!!

Please share with me your secret, I struggle to eat everyday. My diet is basically yogurt and chocolate milk.



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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It's only going to get better.


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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Christine,
I had problems with many foods initially, especially things that are crumbly and stick everywhere. Meat was still another problem.. beside the taste it was nearly impossible to swallow.
Try to work your way up to cream soups and then soups with vegetable, then mashed potatoes, soft pasta (macaroni) etc. I still have little spice tolerance and a normal slice of pizza may taste very spicy... One thing that was strange, I tolerated seafood from very early on (shrimp especially).

Best
M





Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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Congratulations on being able to eat biscuits without any saliva!!!


Nine years out. New normal with limitations, but surviving and living life to the fullest.
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Marcus,
If shrimp works, lobster should work even better. All that butter helps get it down. Claws are easier than tails.

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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[quote=ChristineB]Thats absolutely amazing!!!!!
Please share with me your secret, I struggle to eat everyday.
[/quote]

I use the frozen biscuits and undercook them a bit and put LOTS of butter (real butter, no margarine for me) and jam on em.

Now keep in mind I started being able to do this at about 4 months post IMRT.

KC


9 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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Indeed,
lobster does work as well, or better. Although this is not an everyday thing....

M



Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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bisquits smoothered in gravy or honey butter meltd. Gotta be wet. I eat a lot of pasta but keep my water VERY close. I have found that if I have a cup of coffee with french vanilla creamer in it kind of coats my mouth ok so it goes down a little easier. I haven't reied seafood yet becuase everything taste so salty to me. I used to eat and cook with a lot of salt now I don't use it at all. My nutritionalist told me use gravy alot so I do try bisquits with sausage gravy from Mcdonalds I was totally shocked when I was able to eat that but man was it good. I still end up throwing alot of food away but I try eating something different every day just like we did when our mamas used to make us do when we were young children. Even things I could eat yesterday I try them again another day to see if maybe I can do it. It gets better every day.


49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
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I can't use sweet stuff but gravy is my best friend. Bisquits are so good covered in it. Meatloaf and chicken (thighs) are good too.I used to only eat white meat with chicken but found it is too dry so I switched to dark meat and can eat that with kittle difficulty.


49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
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Lep,

Stop, your making me hungry with that biscuits and gravy talk.


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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[quote=Lepreckaun]Meatloaf and chicken (thighs) are good too.I used to only eat white meat with chicken but found it is too dry so I switched to dark meat and can eat that with little difficulty. [/quote]

I hope this is not a blinding flash of the obvious, but what I finally figured out is that the more fat the meat has in it, the easier it goes down. I have already told my PCP that if the cholesterol goes up, then we will adjust the medicine to deal with it. I am going to eat!
So far, exactly the opposite has happened, it has gone down (Adkins paradox?) I had always know the the cheaper the hamburger meat, the better the hamburger, now I just look for the fattiest steak and give it the old salt treatment. http://steamykitchen.com/blog/2007/08/28/how-to-turn-cheap-choice-steaks-into-gucci-prime-steaks/
The only exception for me has been bacon, still too chewey....


9 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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A steak without fat is like a day with sunshine. You gotta have it for flavor and tenderness.


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
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I made turkey meatballs yesterday and added fresh wheat bread crumbs I made. Fried them then added them to a sauce. They were very easy to mash in with the angel hair pasta. Just have to keep everything moist and it seems to work for me. I needed some good old home made and still have enough to freeze for future meals. I like to experiment with food LOL


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
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Breakfast this AM was sunyside up eggs w a slice of whole wheat bread. Ww bread is very dry so I put my little iron skillet on a high fire and dropped the bread in while I got everything else ready. I took the bread out, dropped in the eggs and buttered the bread. When the eggs were ready, I put the bread back in for a few sec. I cut the bread in small piecs to soak up the yolks and it was easy to eat.
Malka
PS to Brian: Could there be a new Forum section devoted to food and drink?


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Eggs over fried buttered toast sure sounds like a winner. I'll try that for supper tonite. Thanks for the idea.


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
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French toast is great too. I NEVER thought that eating food would be so much fun. If I had a little spit on the side things would be super great !!!!!LOL


49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
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Oh yes today was a KFC day. Took the fried skin off the thighs and ate two of them. mac and cheese and potaoes with LOTS of gravy and yea I had a bisquit too tons of gravy. I am not worried about gaining weight or anything else like that because my nutritionalist told me not to loose anymore weight but I am still loosing it. Before I came up with the C I coukldn't loose the weight I went from 170 to 130 and lost another two pounds so if I can get it down then down it will go. Just keep trying everything even things that you didn't like before because I have found that I can toletate them better now. I hate throwing away food but I have thrown enough away to feed a whole country it seems.But I keep trying.


49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
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I have gone from 218 to 186 and seems I lose a little weight each day. I can see my kneecaps now tho. LOL


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
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Tonight Im going to try biscuits with butter and jelly. I will have my cup of water handy. It must be a southern thing, but here in PA cant get biscuits and gravy form McDonalds. I wish McDonalds had it, I used to love biscuits and sausage gravy.


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 remember KFC's and Boston Market's chicken pot pies as being a part of my recovery nutrition for a few months. Don't need gravy or liquidty foods now but when I did they were one of my regulars.


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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I think Malak


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

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Oh man im starving......i think a thread with food ideas would be so wonderful especialy if people would put recipes by recovery month type of thing...i am 2 months post tx and cant seem to eat anything i have just got my hunger pains back (havent been hungry since treatment started) i didnt think to try egg.....might try that tomorrow


Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
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Oatmeal was one of the things I could eat through out most of my treatment except for some really bad weeks. You can play with the consistancy based on how your swallowing is going. I still eat it every morning for breakfast. The commercial is true, on my last visit to my HO he ran all my blood tests and said my cholestrol levels were great. A food and recipe forum sond like a good idea. And on another note I lost 35lbs when I went through my treatment. I now have gained all that back and then some.

Tim


Tim Stoj
55 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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Poached and still a little runny was easier than even scrambled eggs in the early days.
Like you Tim lost 10KG (not sure what this is in lbs) with op. 9/2006 and have also gained it back and then some crazy
Think some of it is due to not being as physically active yet.
Gabe


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

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Eileen:
I am so envious. I must have fallen asleep during the swallowing lessons because I have some scary moments with aspiration if I eat anything other than ice cream. Also, two of my three dentists spooked me with the knowledge that rapid tooth deterioration was out of control in my mouth. After a few months of Therabite use, I have only recently been able to properly clean my teeth, but with the lack of saliva, any food related bacteria would only exascerbate the problem. How have you overcome these problems? Hungry for a clue... JT2

PS: Sorry for barging into your thread with my own problems, and failing to congratulate you on your progress. What - cancer took my table manners too!


Age 55 at Dx,smoker 30 yrs ago, drinker 8 yrs ago; Stage 4 Squamous cell carcenoma T4a N3; 35 radiation tx, 3 chemo w/ Cisplatin, radical neck dissection,40 hyperbaric dives pre-surgery. Clinical remission since May 2006; Update: declared cancer free July 16, 2010! Miracles can happen...
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Banana pudding today oh boy. even had roast beef with brocilli and cauliflower. Notice every thing is very moist because if it weren't I could not swallow it. My mom made the banana pudding more soupy then normal it was so good.


49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
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I wish I could chew some food and enjoy it. After they removed my teeth for implants,and with this OC on my tongue, I settle for puddings, soups and of course Carnation VHC. Ice cream works too but burns like hell.


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
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I have four teeth in my mouth that belong to me the rest I paid for. I can't eat with them in so I have to eat things that I can break with my tounge. Its crazy the things all of can eat or not eat. I did not have rad implants put in so I am sorry for you. I don't know how that feels. I can only say that I enjoy the things that I can get down because like you I have given up alot of the things I enjoy. I can't stand icecream anylonger or yougart. It feels too dry. which is weird because as long as I have gravy I can eat a bisquit. No other bread though and forget cakes.


49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
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Love that avatar. Where are you guys finding all these marvelous new avatars?

Think fine French food. Comes with lots of good sauces. Chicken wings and thighs are much more moist than breasts. While I was having radiation, breakfast foods and soups went down easiest until all I could taste was salt. Then I just gave up and just drank Ensure Plus. More calories per swallow and I actually liked the coffee and butter pecan. Didn't know about the Carnation VHC. I only had 12 front teeth for year and a half so like you chewing was a challenge. Felt like a rabbit and it took forever to eat anything. Keep at it. Things do improve with time.

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 went to the store and bought some baby food. LOL That's what I ate after surgery in Aug and it works just as good now. I give up on trying to make food that doesn't burn my tongue or mouth. I have about anything possible to help with this pain, but nothing kills it enough to even eat blended food. Baby food and tapioca . LOL


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
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I feel like my avatar just jumping around. its happy. I have come to really like the ensure and boost. That is a shame too. because when I first started I could not stand the smell of it. I have found in the freezer department a dinner by weight watchers smart choice it is roast beef. It has brocilli and cauliflower in it lots of gravy and really good. Try it you'll like it. Oh a plus on that is you can eat it with or with out teeth.LOL Take care, Brenda


49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
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During radiation, I ended up with a blister the size of a dime under my tongue due to the radiation bouncing off of fillings in my teeth. I pretty much stuck to alfredo sauce with noodles, chicken noodle soup with an egg mixed in, and lots of scrambled or fried eggs (sometimes with grits).


Lisa - Diagnosed 8/14/07 with Stage 1 metastatic squamous cell carcinoma, unknown primary, most likely nasopharyngeal, status post 2 surgeries, completing 6 weeks IMRT radiation on 11/26/07.
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I can deal with the alfredo sause but I hate eggs. Its fun learning things we can eat isn't it


49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
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For those that like eggs, poached and soft boiled worked well also.


----------------------
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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If Brian is watching, this new food forum would be great. Not only for those who are not able to chew and swallow, but also for
the nutrition facts that are needed for us all. I could not swallow whole foods for a long time, but you had to pay for cookbooks with recipes. I even called the American Cancer Society. A lady had made one, but there was a fee. I needed it that day!!
My youngest son just graduated chef school and has watched me struggle. He is very sensitive about my needs when I could not eat and made me really great soups and homemade bisques! We could all publish on here and everyone could benefit for free.
Just a wonderful thought. We could feel like we are contributing something.
Thanks for listening
Debbie


Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
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Brian has added a new forum just for us cool huh. Thanks Brian


49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
One thing that would be useful is to separate the food into different categories/stages. i.e. stuff you want to try at the end or after radiation, then add items that may be palatable 3 months later and so on. Obviously, there will be a lot of individual differences too.
I just made turkey and gravy (frozen in roasting pan {Jennie-O}). Just put the thing in the oven.. (so much for gourmet cooking....). In any case it was very easy to eat, I feel I could have tolerated that a long time ago. I also had a beer. If you must have one try a dark beer with little carbonation. As I found out tonight guinness works well for me. ... and I am now a cheap date.

M





Last edited by Markus; 02-23-2008 03:42 PM.

Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Mar 2005
Posts: 58
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Supporting Member (50+ posts)

Joined: Mar 2005
Posts: 58
I was delighted to find this new subject on our forum. Having struggled with trying to come up with something new to eat for the last five years has become a hassle. Now we can share ideas that are necessary for our survival and get some variety in our food we can eat. I already learned about the Roast Beef by Smart Choice. Thanks. If we all just share one item, can you inagine how many new foods we can try that many of us never thought of. I am looking forward to more ideas and suggestions.

Hacklene


Hacklene
Joined: Sep 2007
Posts: 148
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Joined: Sep 2007
Posts: 148
ChristineB,
I have found that if you take the pork chop rib )the part with out the bone, have it cubed like cubesteaks cut it up bite size then quick fry it in butter, make a gravy with it it is better then sausage because it doesn't have the sage and pepper in it. I can't tolerate spicey things yet. But that is really good. It doesn't take long at all. Our meals take no more the about 20 minutes to fix any more. Its just trying to find something different that takes the longest. Keep going. Brenda


49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
Joined: Sep 2007
Posts: 148
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Sep 2007
Posts: 148
Yeah I can see my knee caps and my feet. I have now gotten down to 120. Heck another 20 and I will be what I weigh 30 years ago. I keep trying new foods though. But I seem to always get back to Macaroni and cheese. Its the easiest to swallow.
Brenda


49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
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