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#70267 02-21-2008 04:53 PM
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Hi all i love this thread proberbly because its right where i am, after going to my Dr tuesday he has refused to help me get any more tube feed or liquid food, this may seem harsh but he said its time to start eating, i know this i am trying but so far cant find anything i can eat everything sticks to my mouth

things i have tried ....
potatoes with lots of gravey
toast with lots of butter
veg with butter
veg with gravey
tomatoes (these really burnt and stung)
any ideas ? id be very greatful

thanks for reading
Debz



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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Tomatoes are very acidic debz and probably best avoided for a while. To start off i would try thin soups and ice cream,and see how that goes.

love liz

Last edited by Cookey; 02-21-2008 04:58 PM.

Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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overcooked broccilii,cauliflower pastas. work great with me. Things that are "wet". I stay away from tomatoes, citrus and anything spicy. No to spagetti sause however alfredo sause is good. and watered down jello works better for me then firm.
Good luck, 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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Today I went to waffle house and had a waffle and sausage, lots of lite syrup and water. I am shocked that I could eat a waffle however I can not eat bread. No longer can I have a cheeze burger and yeah I miss it (NOT) I am eating healthier now then I ever have. Only because of the restircted things that I can eat, But you have to try new things every day. And keep your water baootle right at your hand. My mom suggested that I also use my ensure when I eat because I have to swallow so much water that I don't get half the calories I am supposed to get. I am still loosing weight but I keep putting stuff in my mouth. Also I still throw away alot of stuff. As I said in my earlier post, over cooked stuff and watery stuff goes easier then not. Again keep trying , 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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Yes, stay away from tomatoes and most fruit for a while. I have just recently been able to eat tomatoes.

Things that early on were tolerable were:
Pasta, specially elbow macaroni with butter (or cheese sauce)
Mashed potatoes, canned peaches, yoghurt (no berry or fruit initially)
Shrimp, soups of course initially just a broth then cream soups etc..

Whipped cream is soothing too!

Markus






Last edited by Markus; 02-21-2008 06:44 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.
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DebZ,
My mom could eat Campbell's Double Noodle Chicken Noodle Soup. That was a staple for her for a long time. She claims it was the easiest to eat.


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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The worst thing I tried to eat was mashed potatoes. I thouht they would be the easiest. What tasted so-o good to me was cream of chicken soup. So good. Then I found I could crush up crackers in the soup and double good. Also, oatmeal with lots of milk, butter and extra sugar(sinful)but oh so good. Of course, ice cream and plain yogurt without fruit. Juices all the time of anykind will give good calories with nutrition.


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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Though many juices are acidic and if you have a sensitive mouth will cause pain just like tomato sauce. Juices that are nonacidic and easy on the mouth--peach juice, apricot juice and pear juice. I have also found some carrot juices that are blended with apple juice to be good.

I just found a Campbells chunky soup--broccoli/cheese and chicken with potatoes that blends into a really smooth soup if you put it in the blender (not all soups do--for example clam chowder leaves you with little clam bits that can cause problems if you can't do chunks fo stuff yet). It has a lot of calories if you have the entire can--which is one big bowl--I think about 450 cals or so.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Also, if you have a problem with mashed potatoes try them with LOTS of gravy--it makes a difference!

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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I have found that for me mashed potatoes are dry even smothered with gravy. They also have a "drawing" effect on me so I tend to add more water to them and make them soupier. Also I mix my broccilli or wet veggies in with them.
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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Wow thank you all so much for replying,

Liz yep your right i will stay away from tomatoes for now dont know why i didnt think before can i blame chemo brain??? LOL, soups are fine for me to eat i have got fed up of eating liquid foods but i havent tried ice cream so i might give that a shot oo i love ice cream hope im ok with it. thank you again

Brenda thank you, i cant eat pasta it really sticks to my mouth even with sauce or soup but i will try over cooked veggies, i dont know why but Jello makes me heave, go figure, well Jello and apple sauce i used to like both of them pre treatment so not sure what thats about?!!!...waffles hey wow i can imagine how you felt being able to eat that, i am finding its easier for me to eat sweet stuff rather than savoury, maybe my savoury taste buds arent back yet? i have never had a waffle so might try that too was it cooked soft? i know what you mean about the weight loss i am doing ok with that i only lost 1 lb in the 3 weeks i havent been using my tube so doing ok so far. i cant eat mashed potatoes either they coat my mouth and throat i didnt think of adding veggies to it might try it...

Markus thanks so much for the reply....pasta im not doing well with even when i soak it in soup it takes me ages to get it all off my teeth and gums ( i got a baby's tooth brush its easier on my gums)i am allergic to peaches but i have been drinking yoghurt, i have thrush in my mouth that wont clear up so i have been trying the old remedies...not working yet, i love cheese well i used to i cant wait to be able to eat cheese again.

Donna thank you so much, do you know i tried the chiken noodle soup i couldnt eat the noodles nuts right?!!! but your right soup is helping keep the weight up.

Peace4uall im with you on the potatoes well not right now i am determined to be able to eat them soon just cant do them yet...thank you for the tips

Nelie my inlaws just bought me a juicer thinking along thesame lines as you so im going to look around for recipies i know if you do it yourself and get it wrong it can taste yuk thank you for replying

thanks again everyone....i am off to make indian food for a party wonder if i can eat that?!!LOL yeah right

Debz







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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Deb, Have you tried kefir? It's a yogurt-y drink which I think has the same stuff as yogurt to help counteract thrush. That is another staple of mine. I get the stuff made by a local dairy near here with lots of milk fat for extra calories (my cholesterol is realy really low so I don't need to worry about that). As for pasta, try pastina--the little tiny circles of pasta that is sometimes used to feed children. I find if it is somewhat overcooked and mixed with lots and lots of Alfredo or cheese sauce to help it stick together it goes down pretty easily--it's the only kind of pasta I can handle.

Nelie

Last edited by Nelie; 02-24-2008 09:53 AM. Reason: typos

SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Deb
Have you tried canned macaroni cheese, the canned stuff is cooked much softer than home cooking (it's better just warm so it will slide down)
Also soft omelettes cooked in plenty of butter.. later you can add the cheese
When you are ready to try fruit juice peach is about the least acidic
Hope this helps
Sunshine.. love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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I make my macaronin and cheese real wet, I add extra milk. I stay away from most all of the spices. My nutritionalist told me because I have such a salty taste in my mouth to add a pinch of sugar to things and I find that is easier to swallow as well.
My mom made a wonerful chicken and noodle soup for me today she added bell peppers to it and it made it sweeter then it would have been. When you can't use salt then the sweetner (natural) is good. I have found that most fruits are hard for me to handle but I can get peach coobler (soupier) good. We tried banan pudding but to no avail it was too dry. Like I said keep trying things, don't get fustrated even when you have to throw away food you have to keep trying. I did try a chocolate donut today boy was I stupid, as a chocolate lover I can't stand the taste any longer. Heres to good food and LOTS of sunshine, 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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What worked for me was was drinking my meals while implementing small meals. Salad worked well but little nutrition. Alot of the other things people mentioned. But it seems that there is a difference in alot of us because I tried much of what has been suggested and had no luck but had luck with some things that seemed ridiculous. The main thing was drinking an ensure mixed with a carnation instant breakfast VHC lactose free followed by whatever seemed possible at first and slowly but surely I found foods that I could eat. I still have very few things that I really enjoy but it is tons better than just after treatment. I don't know if anyone else has luck with fish but I have luck with thin sliced fish. Tilapia specifically and it has to be cooked in olive oil and not overcooked because it dries out the meat and it is very difficult to swallow then.


Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you.
Lee
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Post treatment I was drinking 4-6 cans of carnation vhc a day. I substituted the lunch feeding with cream soup and pudding. I did this for a while and then substituted supper feedings with regular food. I can't remember how long I did this, but I do remember I had to retrain myself on how to swallow. It was difficult at first and I was afraid of swallowing, but I did it slowly and with small bites. Eventually I was eating frozen dinners with lot of gravey and mashed potatoes and pastas.

When the Dr pulled the peg tube, I lost 18 pounds of the next couple of months as I had no appetite and changed my diet. As the others said before, I had to experiment with differetn types of foods to see what worked and what tasted good with my new sense of taste. Also, I was drinking a sip of water with every bite of food to help the swallowing. I was getting full quicker on the water.



Tom
SCC T4N1M0 left side tongue & 1 node
Dx 05/21/07 42 yrs old
40 Tx IMRT @ 70 Gy started 06/25/07
Cysplatin & 5fu 1st & 4th wks
treatment ended 08/23/07
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Something different for during the day, at work or in the car.
Try a Boost Smoothie. They taste pretty good and are a nice change from the usual fare. I tried the Raspberry.

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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Im not the best eater either, but here are a few things that I can eat....yogurt, banana pudding, canned peaches and pears chopped very small, fresh very ripe bananas or pears, cream soups, over cooked or canned veggies like brussel sprouts peas carrots or green beans

dont feel bad, I cant do pasta or bread at all either


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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Hi all thank you so much your replys have helped so much...i went shopping today i got some mac and cheese (i will add extra milk)i got a small can of pears i will try those...i got a can of chucky veg soup guess what...i ate the whole can no problem at all (i couldnt eat the sweetcorn) but everything else was soooo good i wouldnt have tried this if it wasnt for all of you i had to come and share it with the only people i know who will know how great it was, my first solid meal in months woohoo.

thank you again Debz


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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So good to hear you are trying to eat. Everyone forgot
about pancakes. I never ate sweets before and never pancakes,
but oh they were so good with syrup. I would have never though I could eat them, but someone on hear told me that they just melt in your mouth. They were right!!!
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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French Toast also. Loaded with butter and syprp. 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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Hi Debbie.... wow pancakes american style? i was going to try english ones thinking as they are thinner they might be better?, i love american pancakes pre treatment with strawberry syrup oh yummmmmm.
had my soup again today this one was chucky veg with ham i managed to eat some of the ham too it was really easy to eat but it was smoked and i dont like smoked meat so i might try some soup with steak in it see how i go with that.

Debz


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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OOo Eileen sounds good, now when you say french toast is that bread dipped in eggs and fried?

Debz


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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My recipe for french toast:

3 eggs, 2 cups milk, teaspoon vanilla, cinnamon

wisk eggs and milk with the vanilla then dip your bread in it and put in a buttered pan, sprinkle cinnamon on it and fry

then load it with lots of butter and syrup, yum!!!!!






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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Hi Debz, how did you do this past week with eating? I had a very hard time learning to eat again--choosing nutrition that didn't hurt! My docs said to coordinate it with my pain meds; so take a pain reliever and then eat, which takes advantage of the med's properties.

For specific food ideas, my all-time favorite was milkshakes! Yogurt was great. Because I didn't have my taste buds back to normal yet, I didn't have the tastey satisfaction, and it was hard to make myself WANT to eat. What's your favorite cheese that melts well? Using that, have a nice soft omelet--with mashed potatoes on the side!! And macaroni and cheese! Get out the cheese, olive oil, and cream, everybody! Debz coming to eat with us!!!

Make it fun!! For exmple, you might ask each person you're close to make something bland and soft, or give you a recipe. If you're up to it, you could have a "Soft Pot Luck" to celebrate your new status as an eater and to say thank you in person to all who have helped you thus far on your journey. You can always use egg substitutes which are TOTALLY healthy, if you're concerned about cholesterol. That'll compensate for the cheese :-) Am I guessing right that you'd like to put a little weight on while you're at it?

I apologize that I haven't read all of your posts, friend. I probably should already know the answer to the question above. However, I only just jumped into the ocf forum last week, so I've been concentrating on the "Active Topics" heading--I'd like to help my fellow "cancer colleagues" as the new needs arise.

Please let us know how our suggestions are working in your menu! With me, friends and family were actually envious (only of this ONE situation, though) that I could eat milkshakes all day, if I wanted to. It'll be year next month since my PEG was removed, and I am thrilled to say I can eat almost anything I want. Still use a lot of liquids and have dry mouth sometimes, and this is just fine with me!!! My weight has finally come up from 103 to 125, too, which is just right. It all takes time, and progress does happen! So happy eating, and may your enjoyment of food return in full force :-)

You are in our prayers, and I'll think of you especially every time I eat now. So lots of good thoughts are coming your way!


Non-smoker non-drinker, 50 when diagnosed 9/11/06 stage IV scc of oropharnyx, malignant lymph nodes both sides of neck. Cause=HPV16. Daily chemo & daily IMRT for 7 weeks. In 2 clinical trials at Johns Hopkins, good results. Peg tube out March 07. Update September 2014: gratefully in good health!
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Christine i am going to try that recipe tomorrow sounds yum i hope i can do it.

Hi Carol, grin i had my best week yet eating wise i cant believe i found a solid food i can eat im loving it....for me i dont have pain problems any more my thing now is no saliva thats causing all my problems, i love your idea about a party i did just make everyone some cookies as a thank you for helping me through they went over really well plus i have never beena cookie lover so i didnt care that i couldnt eat them...LOL

pre treatment my most loved foods where fresh bread and cheese in all combinations...bagel cream cheese...cheese and onion sandwiches...right now i cant eat either of them they are too sticky for me so i am really missing them, my fav cheese that melts is sharp cheddar love that on toast.mmmmmmmm

i am doing ok weight wise i was very over weight pre treatment so loosing 46lbs so far has made me look great...typical right crazy i have a spare 15lbs on me right now i wouldnt mind loosing ;)(my hubby doesnt agree) but im not concerned with weight just getting all the nutrition i need so i can loose the peg tube.

we are going to get a slow cooker tomorrow so i can make my own stews that way i can make a big pot eat all day and change it up just untill i can eat bread and cheese again.i will let you know what recipes i use and what works for me.

really nice to read you...Debz

Last edited by auntypebbles; 02-28-2008 12:53 PM.

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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Add some healthy blueberries to those American pancakes once the season starts.

I use 1 tablespoon of milk per egg. Never thought to add vanilla. That sounds delicious. I made it this weekend and 3 eggs made 10 slices of peppridge farm bread. How many slices dose your receipe make Chris and what brand of bread do you use?

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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Eileen:

Sorry, I forgot to say that 3 eggs makes a ton of it. My recipe can be cut down, its not exact cuz I dont measure when I cook. I would make a big batch for me and my 2 teenagers, my guess is 12-15 peices of bread. The best is texas toast bread you can get at any major grocery store. I prefer that kind, but since I struggle now opening my mouth and swallowing I use Maiers Italian bread.

Another good thing for eggs is scrambled soft with cheese. I add a little milk or 1/2 and 1/2 to make the eggs fluffier. I also just discovered Dannon fruit smoothies 10oz has 260 calories. I never thought I would have to count calories and the more the better.


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
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I scramble my eggs with a Tablespoon of heavy cream per egg and lots of butter. I don't measure the butter, just cut off pieces and put in whisked up eggs. Could be as much as a tablespoon per egg. Lots of calories. If you really want to get indulgent, add some white or black truffle butter.

I think we ought to be adding these to recipe section. Oh well.

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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oh man you are all so fab....i am so hungry i have had all my shakes (sorry for not mentioning the smoothies christine) yeah they are a really good calorie filler although i dont like the taste too much, i had to go shopping today for clothes i cant believe i am in a size 4 i have to stop there though thats small enough i am 5'8". so im off to make some scambled eggs(i call fluffy eggs)it would be a great idea to put them in the recipe section for everyone they sound so good.

I couldnt eat the pancakes i got aunt jemima ones with blueberry syrup and loads of butter still too dry for me but i will keep trying...

pepperidge farm bread i might try that i was using potatoe bread not had much luck with it or i had thought about hawian (i know thats spelt wrong) but i think it has more butter in it right?

thanks again debz


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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Hi there, fellow food-lovers and calorie monsters!!! Happy Leap Day! I'm really enjoying our discussion and am getting good ideas from you all. I forgot to mention what is maybe THE most nutritious, calorie-rich, GOOD-fatty food: avocado! My sisters convinced me that it's the magic food of the universe, so I started making mild quacamole with it (mash it up, add sour cream and salt, and garlic if you can tolerate it). Of course if you like it, just eat it plain. For you, Debz, I thought it would be useful because it's very slippery so won't be sticky like cheese is. It's easy for the rest of the family to add stuff (lemon or lime, hot sauce, onions, etc.) to theirs after I take mine out of the bowl. I would just eat it with a spoon before I could manage bread or tortillas. Very satisfying, too. Nice texture. SOOO .... Happy eating, and I hope you enjoy every calorie! Good night for now (it's almost 9:30 for me), and take care. You are in my prayers every day.


Non-smoker non-drinker, 50 when diagnosed 9/11/06 stage IV scc of oropharnyx, malignant lymph nodes both sides of neck. Cause=HPV16. Daily chemo & daily IMRT for 7 weeks. In 2 clinical trials at Johns Hopkins, good results. Peg tube out March 07. Update September 2014: gratefully in good health!
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Hi guys - I have been reading your posts to get ideas as my husband starts his treatment next week. I want to have several items on hand for him to try as he starts having the side effects. One item though that I thought some of you might enjoy is frozen mac & cheese with little bits of smoked ham. The reason I know about it is for my toddler. I buy it at Wal-mart frozen section and it's in a single serve box - mac & cheese with ham. It's a pretty "wet" mac & cheese and the ham is tiny. The flavor is really good, it doesn't have a salty flavor, but there is salt in it of course because of the ham. The brand is Michelina's and it's like $1 per box. Good luck to you all and your information is so helpful. I think I will have a prepared pantry for my husband. Of course I'm only going to get like one of each thing, until I see what he likes and how he handles specific things.


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

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Michelle,

This is really difficult to try to understand unless you have experienced it but forget what anything tastes like, good or bad, because that's not really going to be a factor in whether he eats something or not. In a very short time nothing will taste the same and some things will flat out taste horrible. It is quite demoralizing to experience and I used to keep trying different things that I used to love only to be kicked in the head when I put it in my mouth. He will soon just need to focus on maximizing daily caloric intake however he can. That's why I stuck with the CIB VHC because it was the quickest and easiest way to achieve that goal without dealing about the taste issue.


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,

You are so on target. At least from our experience. Dan would crave foods and I would make everything he craved...sometimes I'd try 3 or 4 dishes at a time. And, one bite, or partial bite, and he and I would both be discouraged. But, that didn't really happen until about week 4 of treatment, so hopefully Michelle's hubby will be able to eat and enjoy for awhile.

When the going got really tough, Dan couldn't even handle the VHC for weeks as it was too thick and by the time he thinned it down enough it was 16-20 ounces instead of 8. So, he stuck with the Ensure Plus.

Michelle, not trying to discourage you, but if I had to do it all over again, I'd have not tried so hard to push food vs. calories. I threw so much food away. And, Dan got so discouraged each time he couldn't eat something I made.

I think some people are able to eat all the way through treatment, but it's a difficult scenario to plan for. You almost have to take that one day by day and the only thing I would do is have some liquid protein supplements in reserve. I'd have a variety. Dan couldn't tolerate Boost, but he liked Ensure. Some people love Boost. Many people, like David, lived on VHC.

Dan wanted variety, and I tried to provide that even with the Ensure. But, ultimately, the only flavor that he could tolerate was vanilla. When he and I finally accepted that fact, things got easier...and, it wasn't such a craze-fest at the super market or in the kitchen anymore.

It was not a fun time, because as the caregiver I couldn't understand when the issue was how "wet" something was or whether it was taste or texture. And, Dan had a hard time articulating why things didn't work. I still can't say I understand it. When things like ice cream or popsicles "burn" instead of "soothe"...well, it's just hard to understand unless you are the person experiencing it.

But, on a great note, there is very little Dan can't eat now. And, lucky dog, he gets to eat all he wants without gaining an ounce. It's a small reward for the grueling summer he went through. But, he's finding great joy in eating again.

The other thing we were advised to do was put in as many calories as we could before things got tough...so no skim milk or "lite" anything. It was a huge shift for our health and calorie conscious home.


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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Yes, I think that's the key is to use those first couple of weeks before the sense of taste bites the dust to eat as much and as much high calorie food as he can. David is right about flavor really becoming and issue that can't be understood unless it's you once radiation does its thing to your tastebuds. This seems to be especialy true for what tastes salty. Many of us found our taste buds really sensitive to salt as we began to recover. I liked things with a little bit of salt because the salty taste was better than nothing BUT some things that didn't taste salty before tasted overwhelmingly salty to me.

You just have to be prepared to experiment but espeially to recognize that the main issue after a while becomes calories, and, if he doesn't have a tube and needs to get those calories orally, finding something that is easy to swallow and doesn't burn the mouth (and Margaret, like your husband, I found that very sugary things did feel like they burned and actually still do to a lesser extent, though my experience with it remaining that way is rare--apparently radiation threw my nerves enough off kilter that my mouth has remained very sensitive to some things). The list of those things may get smaller and smaller as radiation goes on. But he will recover eventually. Just keep pushing nutrition even when it gets hard for him.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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One of the most frustrating things we all deal with is our mind still tells us that if we eat that hamburger or seafood or steak or mashed potatoes or pizza or gatoraid or OJ or whatever that it will taste just like it always did so we get up the courage and tell our spouse/caregiver...get me some and we put it in our watering mouth and WHAM it tastes horrible. It's really hard to get past that feeling and we have never eaten anything in our lives that didn't taste good to us so we push it back and say maybe I'll try something different next time, I'm sure it will taste alright but alas it doesn't either.

Remember we can all react somewhat differently to these Tx's but a very large % of us had pretty much the same reactions to our Rad. Margaret said Dan started loosing his taste at 4 weeks, mine started going bad after 2 weeks and a few said they noticed changes after only a few. I hope he never notices what I have described but if he does, he's just normal and that's equally important to reinforce to him.


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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Thank you guys so much for sharing that deep with me. It helps to have insight and I am taking all of your suggestions to heart. I just cannot imagine how he will feel and I want to do anything/everything I can to help.


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

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Michelle--what kept me on target with eating was the thought that I was not eating for pleasure, I was eating for survival. My analogy was that of putting gas in my car to keep it running; I was doing the same thing for my body. So what If it tasted horrible---it was the fuel that kept me going. I thought this over and over again throughout the day. Also, My caregiver tracked calories and fluid throughout the day. I had to get the minimum amount in everyday before I could go to bed. I was forunate enough to be able to keep my weightloss minimal. Wishing you the best of luck! Teresa


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
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Amen Teresa,

As a caregiver, I had tunnel vision about getting to the end of the day with the optimal fluids and calories consumed....nothing else seems as important. I always felt like a failure if, that day, I had failed to keep Bill on track. It was hard...he never felt like eating so I just had to watch the clock and every three hours or so get those cans and water out. It was like having a newborn in the house...he depended on me to keep him alive! But, the results are worth it and you reach the end of treatment with the best chance to recover.

Deb



Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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Aw your all so amazing, and i agree with all you have said, i think after everything is done trying to deal with the taste issues after treatment is one of the worst things, it has been for me, i was actually getting depressed and im always so positive but like David said your brain telling you you want something that you used to be able to eat and enjoy then finding its nothing like it used to be was the worst thing. It does and will get better but its very hard and frustrating for both of you...we will be here though

Debz


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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Yes just pretend the liquid food is rocket fuel and power on through this stuff. Try and find other outlets for pleasure right now until your old favs come back on the menus. Nice smelling candles-- showers- walks in the park-- fav tv shows movies-- music a soft blanket- emails with friends-- buying flowers- Anything but food needs to be your focus right now. Its really hard but it will get better. Weird how obsessed with food everyone is isn't it?? I never realized it until it was taken away from me. ITs everywhere- people's whole lives revolve around it-- social functions revolve around i-- commercials on tv-- its non stop.. After awhile of being totally upset and frsustrated I actually just tried to enjoy the smell of food while I couldn't enjoy the taste or swallow of it-- and once I trained my mind toenjoy it and not let it torture me I was OK. NOT an easy task.

Feel for ya Debz! Hang in there babe.


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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misskate what a wonderful idea, fill my life with the good things, i love that and am going to follow your advice, thank you.

Ok well hubby told me i got the wrong syrup?!!!! ding bat i am, he went and got the right stuff and man oh man it works a treat pancakes waffles french toast all melt in my mouth sooo yummy

off to go get fat...read you all later..debz


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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