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#168887 08-05-2013 07:19 PM
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sanmc Offline OP
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I'm about 9 1/2 months out from radiation and chemo and still having problems with eating. I have a PEG tube and still use it for most of my calories. I have no teeth and not able to open my mouth very wide. I am trying to work really hard to get rid of the tube. Would love some suggestions to help with that.

Lots of people have told me to try creamed potatoes but for some reason I have real trouble with them. I normally love potatoes but they just seem to stick together and won't go down well, even with lots of water. I was told it was because of the starch. Any suggestions to help them go down??

I have gotten to where I can eat soft vegetables such as carrots, green beans, cooked onion, and baked squash. Have started experimenting with casseroles with those ingredients and have done fairly well. I know I need more protein but haven't been able to do meats much yet. Any advise on starting to use some meats? Ways to cook them or something that can help with breaking it down more?

I do some shakes, bought and homemade and do well with them. I know that they are just mostly calories and not very nutritional but I also know I need that as well.

They say I may be able to be fitted with a bottom denture at some time in the future but probably not the top since that is where the most of my cancer was. Thank you so much for any advice/suggestions that you can make.


Sandra
5/15/12 Diagnosed with SSC
6/20/12 Surgery-Hard/soft palate with RND, trach and PEG, teeth taken, Age 51
8/20/12 PET scan showed cancer had reoccurred
9/4/12 Began Chemo and Radiation
1X cisplatin 2X carboplatin 35 radiation
5/28/13 Latest scans---Cancer free
12/2013 Still Cancer Free MO wants no more CT scans
(not sure how I feel about that)

Blessed and Very Much So
sanmc #168890 08-05-2013 10:25 PM
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This may help you with relearning to eat. The texture of food plays a big part in relearning to eat. Plus of course things arent tasting right all the time which makes it even harder. Recovery is a strange time full of ups and downs and setbacks but you need to keep trying different things. The trismus can make eating more difficult too.

Having no teeth makes it much more difficult trying to chew foods so its able to be swallowed. Some people have gums that will harden making it a little easier, but its not the same as eating with your own teeth. In time your gums might toughen up so it will be a little easier. You didnt mention if you had dentures or if they were a possibility.

Here is a list of foods that are easier to eat. I hope this helps.

Easy to Eat Food List


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
sanmc #168900 08-06-2013 05:31 AM
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Shakes can be very nutritious pick up a high protein powder and add the ingredients of your choice. - fruit maybe some veggies almond milk etc... I start my day off with one always smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
sanmc #168901 08-06-2013 06:41 AM
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sanmc Offline OP
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Thanks ladies.

Christine, I was told that I should be able to have bottom dentures in the future. One doctor told me I would never have top but another said there was a possibility if they put in a "post" where the most of the surgery was done for them to hold on to. My husband is worried about that. He doesn't want to bother the area and possibly stir things up again.

Cheryld, What kind of protein powder do you use? Does it have a taste to it? My husband had gastric bypass surgery 10 years ago and tried some of those then and couldn't stand it. I would imagine there is a lot of difference from then to now.

Again, thank you and I would be most appreciative for any more suggestions you have!


Sandra
5/15/12 Diagnosed with SSC
6/20/12 Surgery-Hard/soft palate with RND, trach and PEG, teeth taken, Age 51
8/20/12 PET scan showed cancer had reoccurred
9/4/12 Began Chemo and Radiation
1X cisplatin 2X carboplatin 35 radiation
5/28/13 Latest scans---Cancer free
12/2013 Still Cancer Free MO wants no more CT scans
(not sure how I feel about that)

Blessed and Very Much So
sanmc #168919 08-07-2013 05:50 AM
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Posts: 5,260
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"OCF Canuck"
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Whey powders taste the best - I'm a vegetarian with a milk issue so those kill me smile I usually buy sun warrior - it's vegan and they have chocolate or vanilla - this one is finely powdered so its not grainy - which is a plus - taste depends on your hubby they often have unflabvored, chocolate, vanilla or berry. I tend to add banana, strawberry (frozen), or blueberries, but you can buy bags of any frozen fruit or add fresh - I use almond milk - unsweetened - but you can use anything, milk, or soy, etc... you can even add peanut butter. It tastes like a milkshake but more nutritious... smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
sanmc #169135 08-12-2013 12:28 AM
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Have any of you tried Levity for protein replacement? My father was buying ensure the chocolate flavor and we thought it was the best choice until someone who had throat cancer gave him a case of Levity. We are amazed at the difference in nutrican each one has to offer. Levity provides way more good things than Ensure ever could. Levity stopped his weight loss and there is a big difference in how he feels three weeks after using this product.

Kandi #169138 08-12-2013 04:30 AM
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Is it Jevity? they are mostly made by the same companies, Abbott, and Ross products. I used Glucerna 1.5 Cal, 19.6 grams protein, 356 Cal, had Jevty too.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






sanmc #170021 08-28-2013 05:26 AM
Joined: Apr 2012
Posts: 111
"OCF across the pond"
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Hi Sandra, I still have swallowing problems, particularly starchy foods. I gave up on mashed potatoes very early on. The only way I can eat potates is a small amount of steamed new potato with a bit of creme fraishe.

Slippery food is the important factor for me. So I use lots of natural yoghurt, creme fraishe, mayo (combinations of the 3 sometimes) to help food down. For example king prawns go down a treat in my own Marie Rose sauce. I can eat a small amount of bread if it is smothered with butter and soft cheese. I keep up my calories (and good cheer!) with half a bar real (70%+ cocoa) chocolate each day washed down with a latte. Adding Chai seed, which is very healthy, swells to make foods more slippy. The best way I find to eat eggs is a Spanish ommelette (fried veg, cut small, with egg mixture added when veg cooked through, and cooked very slowley first on hob then under grill to keep centre moist). I recently also started using a slow cooker, following a suggestion on the forum, which helps to keep meat tender and means the reletless soups and casseroles are easier to make. I juice friut and veg to make sure I don't miss out on vitimins etc as cooked veg, salad and whole fruit is not possible. It is a journey of experimentation I'm afraid.

PS My diet is very light on carbohydrate and high in fats so I am curious to know what my cholesterol is and I am awaiting results - I will report back to on these. I am hopeful that I am ging to be high on HDL!


Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol.
10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12.
12/07/11 RIG. RIG removed 05/05/12.
4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
sanmc #171069 09-14-2013 04:56 PM
Joined: Jul 2013
Posts: 24
sanmc Offline OP
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So very blessed!!! I got my PEG tube out yesterday! I had gained 4 pounds and had gotten down to one feeding a day/sometimes two. Now trying so hard to keep pushing to eat different things so I can stay healthy!


Sandra
5/15/12 Diagnosed with SSC
6/20/12 Surgery-Hard/soft palate with RND, trach and PEG, teeth taken, Age 51
8/20/12 PET scan showed cancer had reoccurred
9/4/12 Began Chemo and Radiation
1X cisplatin 2X carboplatin 35 radiation
5/28/13 Latest scans---Cancer free
12/2013 Still Cancer Free MO wants no more CT scans
(not sure how I feel about that)

Blessed and Very Much So
sanmc #171077 09-14-2013 09:11 PM
Joined: Aug 2011
Posts: 269
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Great news! Blessed indeed!


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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