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#104659 - 10/05/09 06:28 AM Re: List of Easy Foods [Re: Flip]
JojoFlores Offline
Contributing Member (25+ posts)

Registered: 05/17/09
Posts: 35
Loc: Manila, Philippines
Hi everyone. This is only my 2nd time to post anything in this Forum, so pls bear with me. It is very encouraging to see your suggested food lists and how you can actually eat these foods. If any of you has a very similar case as I have, I would be grateful if you could share some tips on how to actually 'eat' foods. I made a similar post under "What is the best way to learn to eat?" but have not received any response so far, so maybe here I will solicit one: I had my tongue surgery this March 2nd, where about 90% of my tongue was removed (only a small part of the right side originally remains), replaced with a flap from my front left thigh and permanently anchored to the floor of my mouth. It's now a little over 3 months since completing my chemo (3 sessions, cisplatin) and radiation (30 sessions, @ about 15 min per session) therapies and it was just recently that I am able to drink water/liquids with no problem. But I am still using a PEG for my blenderized food and my challenge now is being able to eat solid or even soft food. Since my tongue flap is anchored to the floor of my mouth, I could only chew food between my teeth but obviously could not manage to control the movement of food in my mouth. I miss eating, as I'm sure all of you also did prior to your being able to eat again. Thank you in advance for your responses.
_________________________
Diagnosed: 16Feb'09
Pre-op Dx: Tongue SCCA Stage IVB (T4N2cM0)
Opn: 2Mar'09. Total glossectomy, Neck dissection (Levels I-V), bilateral; Anterolateral, Thigh flap recon'n; Tracheostomy; PEG
Decanullation: 24Mar'09
IMRT x30, concurrent with chemo (cisplatin) x3: May-Jun '09
PEG out: 23Oct'09

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#104710 - 10/06/09 06:12 AM Re: List of Easy Foods [Re: JojoFlores]
Karen Rose Offline
"OCF Down Under"
Platinum Member (300+ posts)

Registered: 03/13/08
Posts: 395
Loc: Melbourne, Australia
Jojo

I can understand your frustration at trying to move food around in your mouth to swallow it. It can be very upsetting. I have had about 70% of my whole tongue removed and the tongue flap attached and permanently stuck down to become the floor of my mouth.

There are not alot of active posters on the board at the moment who have actually had the same procedure. I have had nearly all of my lower teeth removed due to another surgery so being unable to chew makes it difficult.

I have lots of vegetable and other soups and mushy things. Also mashed vegetables, potato with gravy and things like peaches and cream, pancakes are okay with syrup and icecream, chocolate mouse and custard.

If you start with milkshakes or soups and then slowly but surely you will hopefully move on to the mashed vegetables and so on.

As I said, I know it is soo frustrating, and I miss eating a normal meal more than I can ever express. From my experience, it takes time to go from one step to the next. Just a little step at a time.

Karen
_________________________
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandiblectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery

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#104758 - 10/07/09 03:47 AM Re: List of Easy Foods [Re: JojoFlores]
JojoFlores Offline
Contributing Member (25+ posts)

Registered: 05/17/09
Posts: 35
Loc: Manila, Philippines
Thank you, Karen, for your reply and I'm glad to be writing to someone with very similar experience as I have (I actually empathize with you in that you have obviously gone through more than I have).

I will take up your advise and will send you a PM if I have specific questions.

Will keep in touch.

Jojo
_________________________
Diagnosed: 16Feb'09
Pre-op Dx: Tongue SCCA Stage IVB (T4N2cM0)
Opn: 2Mar'09. Total glossectomy, Neck dissection (Levels I-V), bilateral; Anterolateral, Thigh flap recon'n; Tracheostomy; PEG
Decanullation: 24Mar'09
IMRT x30, concurrent with chemo (cisplatin) x3: May-Jun '09
PEG out: 23Oct'09

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#104899 - 10/09/09 03:04 AM Re: List of Easy Foods [Re: JojoFlores]
kathyf Offline
Member

Registered: 10/09/09
Posts: 4
Loc: New York
Hi JoJO
I just bought a book call "One Bite At A Time" by Rebecca Katz. Her father had throat cancer and she has but together this great book. I was able to get it at borders. I bougtht her first and second edition books. Well written and helps you during differnt times of treatment.
Hope it helps
Kathy


Edited by kathyf (10/09/09 03:32 AM)

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#105009 - 10/11/09 06:09 AM Re: List of Easy Foods [Re: kathyf]
JojoFlores Offline
Contributing Member (25+ posts)

Registered: 05/17/09
Posts: 35
Loc: Manila, Philippines
Hi Kathy,

Thanks for your reply. I will certainly check out that book in stores here.

Jojo
_________________________
Diagnosed: 16Feb'09
Pre-op Dx: Tongue SCCA Stage IVB (T4N2cM0)
Opn: 2Mar'09. Total glossectomy, Neck dissection (Levels I-V), bilateral; Anterolateral, Thigh flap recon'n; Tracheostomy; PEG
Decanullation: 24Mar'09
IMRT x30, concurrent with chemo (cisplatin) x3: May-Jun '09
PEG out: 23Oct'09

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#105012 - 10/11/09 12:12 PM Re: List of Easy Foods [Re: JojoFlores]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
Jojo. If it sounds as if maybe the food can be blended and made very soft, try it. Just don't try a lot of it just incase it doesn't work for your mouth. I have no teeth and not much tongue left , scar tissue like we all have and Rad burns. Nothing any firmer than thick pudding will work at all. Just keep experimenting with foods . It seems the easiest food for me besides cream of wheat , poached eggs, some juices, spaghetti that has been well over cooked so a fork can pulverize it with a lot of plain sauce and pancakes not burned but just done are the easiest. Soups after being put in the blender and made thin also work as do some other foods. Good Luck Jojo.
_________________________
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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#105032 - 10/12/09 03:57 AM Re: List of Easy Foods [Re: EzJim]
JojoFlores Offline
Contributing Member (25+ posts)

Registered: 05/17/09
Posts: 35
Loc: Manila, Philippines
Thanks, Jim.

My intermediate goal is to be able to remove my PEG without of course sacrificing any nutritional value using this.

My breakfast is composed of muesli with additional walnuts and almonds, plus fruits (a small fuji apple, kiwi, a few grapes, banana), with a hard-boiled egg or two, blenderized in 1 cup of non-sweetened organic soy milk + 1/3 cup of yogurt juice drink + some water to make the consistency thinner. A few days ago, I tried taking in orally this concoction but the sandy/gritty consistency, no matter how blenderized it is, and the after-taste it leaves on the walls of my mouth and gums, make it a challenge. So I had to switch back to using the PEG.

For lunch in the office, I take Ensure which I obviously have no problem drinking.

Dinner is even more of a challenge than the breakfast concoction I mentioned above: vegetables (blanched broccoli, grean beans, carrots, squash, onion, garlic) with extra virgin olive oil, plus flakes of either boiled fish or chicken breast, blenderized with 2 to 3 cups of plain water.

I will have to experiment more, as you suggest, to find a better blenderized breakfast or dinner (or even lunch), consistency- and taste-wise, with adequate nutrition.

Thanks again. I'll give you folks feedback.

Jojo
_________________________
Diagnosed: 16Feb'09
Pre-op Dx: Tongue SCCA Stage IVB (T4N2cM0)
Opn: 2Mar'09. Total glossectomy, Neck dissection (Levels I-V), bilateral; Anterolateral, Thigh flap recon'n; Tracheostomy; PEG
Decanullation: 24Mar'09
IMRT x30, concurrent with chemo (cisplatin) x3: May-Jun '09
PEG out: 23Oct'09

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#105062 - 10/13/09 01:45 AM Re: List of Easy Foods [Re: JojoFlores]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
Jojo. I must admit I am jealous and admire you. Nuts too??? Wow,. I used to love nuts and always had a can of them at my computer desk. My biggest treat seems to be beef stew after I removee the chunks of beef , then i blend it. Yep Jojo I added you to my heros list.
_________________________
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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#105100 - 10/13/09 03:02 PM Re: List of Easy Foods [Re: EzJim]
mightymouse Offline
Senior Member (100+ posts)

Registered: 05/24/09
Posts: 124
Loc: Connecticut
Jojo, a great smoothie from someone on this website -- I don't remember who, but I thank them! -- has been a staple for me when I couldn't eat much. And it tastes delicious! Here are the ingredients:

1 Ensure or Boost
1/2 c. oatmeal
1/2 c. vanilla yogurt
one frozen banana (broken into pieces and frozen in plastic bag)
1/4 c. milk
1 scoop protein powder (vanilla is best)

Blend really well -- that way the oatmeal won't be gritty. It makes two LARGE glasses-full, so a complete meal's-worth, at least.

Enjoy.
_________________________
Chris

Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.

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#105140 - 10/14/09 02:35 AM Re: List of Easy Foods [Re: mightymouse]
JojoFlores Offline
Contributing Member (25+ posts)

Registered: 05/17/09
Posts: 35
Loc: Manila, Philippines
Thank you, Chris. That smoothie does appear delicious just reading the ingredients! I'll try that.

I failed to mention in my earlier post that preparing the muesli with nuts in soy milk + yogurt juice overnight in the fridge helps to soften these ingredients, before adding the fruits in the morning and then finally blending them all. This also helps save time before going to work. Microwave, if one wishes, to desired temp the overnight mixture before blending.

Cheers.

Jojo
_________________________
Diagnosed: 16Feb'09
Pre-op Dx: Tongue SCCA Stage IVB (T4N2cM0)
Opn: 2Mar'09. Total glossectomy, Neck dissection (Levels I-V), bilateral; Anterolateral, Thigh flap recon'n; Tracheostomy; PEG
Decanullation: 24Mar'09
IMRT x30, concurrent with chemo (cisplatin) x3: May-Jun '09
PEG out: 23Oct'09

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