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#69239 02-04-2008 06:08 AM
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x28007 Offline OP
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Yesterday I tried something that I didn't think I could eat, and guess what?...I could NOT eat it! It was a grilled cheese sandwich. The bread and cheese just stuck to my teeth like Play Doh. I became so discouraged that I cried all day thinking I would never eat normally again. Will this EVER get better? I am only 7 1/2 months out of treatments but I feel like I should be making better progress. Did any of you experience anything similar when you tried eating new things? I am now back to eating bean soups and Salisbury steak TV dinners. I'm getting so sick of eating the same old things. I want so badly to get off this PEG tube! Did any of you experience this kind of plateau? Hope to hear from you.

Last edited by x28007; 02-04-2008 06:53 AM.

Nine years out. New normal with limitations, but surviving and living life to the fullest.
x28007 #69240 02-04-2008 06:40 AM
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Yes it is a bummer, believe me I know.

My dogs absolutely love it when I try something different smile

It's all about trial and error, and trying not to get discouraged. I have found that food can taste great, but I can't eat it because it is either too chewy or sticky, or it simply does not taste the same as it did pre-treatments. For now stick to what works, and slowly start to add new stuff.

Kevin


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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This sucks.
However, not all cheese is created equal as is bread. You just have to experiment. Generally the more fatty the stuff is the easier I can eat it.... of course that excludes really hard (crumbly) mountain cheese and crusty bread......
Try mixed vegetables, macaroni, mashed potatoes etc. How about seafood? Shrimp etc, croissant, sourdough bread?
I got so sick and tired of canned soups that I cannot even look at them now.

Markus



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.
Markus #69243 02-04-2008 08:14 AM
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How about very softly scrambled eggs, with melted cheese on top? That was one of my son's favorites. Chicken fricassee was another which I made by boiling a chicken or just breasts until the meat was falling off the bone and then using the broth to make a cream sauce for the cut up pieces of chicken and adding canned peas and carrots. This can be spread over a piece of soft bread or mashed potatoes. My son still likes a lot of sauce or gravy generously poured over ground beef or chicken. Sometimes I blend in carrots with the mashed potatoes. Tastes do change and I had to learn not to buy too much of one thing because I never knew when it wouldn't be the "favorite" any more! You just have to keep trying new things because you never know when you'll hit something that really works for you. And things really do get better!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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I know how you feel your not alone i also get devestated when i think i will be able to eat something then it sticks to my mouth (im trying to get better ) and the taste can be awful i loved strawberry flavoured things pre treatment now i cant stand the taste at all ...we will get better my Dr told me not to be so hard on myself as it can take a good year to start to feel better

we will get there


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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One other thing about the grilled cheese sticking - I don't know if this makes a difference, but when I fixed a grilled cheese for my son when he couldn't eat much at all, he requested it made with lots of butter spread on both sides of the bread and lots of melted butter in the pan so that when it came out, it was really juicy and he managed to get it down that way.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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I am 17 months post Tx and I am just now enjoying eating again. I mean I can now eat and taste anything and I have started to gain some much needed weight back.

I felt like you many times and it has taken me 17 months to get to where I am soooo don't give up and just prepare yourself for a longer recovery period than you had hoped for.


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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It's been a 1.5 years and I'm still trying to sort it all out. How do go into a restuarant with people when your not sure if there is anything on the menu you can eat? I've found that if I put on enough of any of the following I can eat almost anything, whether it tastes good is another question.

Gravy
Mango & Peach Salsa
Whipped Cream (not Cool Whip!)
Strawberry Jam


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It all comes slowly. I loved sweets at first. Also oatmeal was my main source of nutrition and lack of irritation. Couldn't take carbonation for a year. Slowly you will be able to eat all if your saliva comes back.


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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My PEG tube came out in October, 2007 after convincing my doctor that I hadn't used it for a month and my weight had not dropped. At first if something wasn't slathered in sauce or gravy it couldn't be eaten. Bread and potatoes just plugged my mouth and were avoided. Now I can eat pretty much anything, though I still take it easy on bread. I have found that small bites and lots of water helps. The problem is that it takes forever to eat. The smaller bites and plenty of chewing starts to convinence my brain that I full long before I have eaten enough. Sometimes my jaw starts to ache from the excessive chewing, but I try to ignore it. The excess water also fills me up faster. All in all, though, it great to be eating real food and trying new things to see which I can and can't eat.


SCC lf tonsil. Tx started 03/07/07,39 rads,8 docetaxel & 4 bevacizumab. Re-occured 02/19/08 back of throat. Tx35 rads 8 chemo. Tx started 05/05/08. PEG re-inserted April,2007.
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