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#115211 - 04/09/10 02:10 AM need to stop losing weight
walknlite Offline
Patient Advocate (1000+ posts)

Registered: 05/13/09
Posts: 1398
Loc: Oklahoma
I need some help. My RO told me today that when I go two weeks without losing weight they will take out my PEG tube. It is still hard for me to eat a lot of things, but I am eating mroe and more, but still losing weight. What can I eat that will help me stop lsing weight or even gain a few pounds back so I can get this PEG tube out? Any ideas?
_________________________
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12

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#115222 - 04/09/10 04:13 AM Re: need to stop losing weight [Re: walknlite]
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4646
Loc: Laguna Niguel, CA
There is no magic formula. It is strictly a function of loading calories..... even if it predominantly through your PEG. You are burning 2000 calories a day doing not much. Your brain burns them, your body burns them to move, stay warm, and more. Sitting still you are burning calories. If you eat 2000 calories you stay where you are. If you eat 3000 calories you will add weight, not necessarily lean body mass, but weight. You are gong to have to be aggressive about getting high density calories into yourself every day, and you are going to have to bust the 2000 calorie number regularly. If you have the strength, light exercise will also build back some lean body mass that weigh more than fat. But do NOT over do this, if you burn too much in exercise you are going to defeat the whole formula. Except for the calorie loading, everything else in moderation. If you find that you have to do most of this through your PEG.... be honest with yourself, you are not ready for it to come out. If you can do this without it, the thing is history.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#115223 - 04/09/10 04:14 AM Re: need to stop losing weight [Re: walknlite]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8187
Loc: PA

You are still recovering and need alot of calories per day for your body to rebuild itself. Radiation as you know can knock you on your butt for a long time with after effects. Shoot for 3000 calories per day and that should help to sustain you. Are you using the peg tube at all? I eat and still use my peg tube cuz i cant eat enough daily.

Its nice to see you doing so well after everything you went thru.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#115231 - 04/09/10 12:11 PM Re: need to stop losing weight [Re: ChristineB]
walknlite Offline
Patient Advocate (1000+ posts)

Registered: 05/13/09
Posts: 1398
Loc: Oklahoma
I am trying not to, because I want it out. I do not mind the weight loss, but after 100 pounds, I need to stop. Don't you think??
_________________________
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12

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#115233 - 04/09/10 12:27 PM Re: need to stop losing weight [Re: walknlite]
davidcpa Online   content

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8246
Loc: Gulfport, Florida
Angelia,

I was consuming 3000 cals a day post Tx and wasn't very active until about 9 months post Tx when I resumed biking and I didn't gain a pound my first year. IMHO if you can eat solid foods without choking then demand that thing be removed. I am now close to 4 years out and I don't have the same propensity to gain weight as I did pre Tx. I was never overweight but pre Tx it seemed like I could gain a pound by just looking at a cheeseburger, riding a 100 miles a week or not.
_________________________
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 14, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#115240 - 04/09/10 03:15 PM Re: need to stop losing weight [Re: davidcpa]
CherylR Offline
Gold Member (200+ posts)

Registered: 01/08/09
Posts: 216
Loc: Indiana
Mike has a hard time getting anything down and has lost about 70#. Had his PEG out way to soon IMHO. Anyhow, to stop his weight loss I concocted a shake to give him calories. It consists of 3 ensure plus, 1 envelope of instant breakfast, 1 cup of Haagen Daz ice cream (highest calorie I could find), peanut butter, half cup of heavy whipping cream, choc syrup (helps the taste a bit) and at least one cup of whole milk - more if he needs it thinned down. I figured one blender to be about 2340 calories. Have also used vanilla ensure and added some strawberry jelly instead of peanut butter. Just a thought.
_________________________
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10

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#115246 - 04/09/10 05:04 PM Re: need to stop losing weight [Re: CherylR]
Eileen Offline
Patient Advocate (old timer, 2000 posts)

Registered: 05/21/02
Posts: 2152
Loc: Trenton, New Jersey
I didn't have a problem with weight loss and was put on a diet of at least 80 gms of protein a day. The only way I could come close to that was by supplementing my meals with Ensure Plus (use VHC has more calories) and milk fortified with Carnation Instant Breakfast. If you want to get rid of the peg, you have to be taking all these calories orally and not lose any weight for two weeks. You are back to work at school full time, so that is burning calories also. How tall are you and what is your current weight?

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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#115256 - 04/09/10 08:37 PM Re: need to stop losing weight [Re: Eileen]
walknlite Offline
Patient Advocate (1000+ posts)

Registered: 05/13/09
Posts: 1398
Loc: Oklahoma
I guess I need to eat it whether it tastes good or not. The only things I crave now are fruits and vegetables. I can eat most of the fruits in those fruit cups. I have also learned that I can now eat shrimp, not the fried kind. I loved it so much. some things I used to love I can not stand now. Just thought of eat ice cream makes me nauseated. I used to want it all the time. Isn't that strange?
_________________________
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12

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#115257 - 04/09/10 09:14 PM Re: need to stop losing weight [Re: walknlite]
davidcpa Online   content

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8246
Loc: Gulfport, Florida
I also found cooked ham slices easy to reheat and they usually contain a high amount of moisture. I combined that with mashed potatoes w/ gravy and baby peas.

Pancakes with sunny side eggs and plenty of syrup makes a messy treat for any meal.

Many TV dinners are high in moisture and calories. Sodium is also usually high but I figured I would deal w/ that later.

I always drank a can of VHC mixed half and half with whole milk with every meal which added over 700 calories to whatever I was eating.
_________________________
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 14, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#115272 - 04/10/10 01:10 AM Re: need to stop losing weight [Re: davidcpa]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
I just lost 10 lbs the past 8 days that it took me a year to gain. I have no iidea why and I force feed myself all day long. I am very active but make sure I take the time for food a few times daily, I was up to 175 last week and this morniung, it was 164. Maybe if the food had taste and I didn't hurt and my mouth burn so much, I could do better. Just keep trying Angelia. I still have much faith in you.
_________________________
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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