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Joined: Dec 2003
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Gita,

It sounds like you need to visit our home and whip up something to eat! All your ideas are not only calorie rich but I see lots of protein, too, which is great for maintaining muscle mass and energy for the body to heal.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: May 2004
Posts: 80
Senior Member (75+ posts)
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Senior Member (75+ posts)

Joined: May 2004
Posts: 80
thanks, guys. this has been a priority focus for me since i've been here with my sister. a few more things to add:

- you can get liquid multivitamins from any health food store or drug store. it's not that much more expensive, but it helps to have that instead of crushing solids, particularly for tube feeders.

- along the same line as mark's suggested greens, i make a green puree with spinach, aragula and any other greens handy. i've found them tricky though becuase if they are used raw they don't quite get smooth which is not good for tube feeding. so i steam them for a few minutes before throwing them in the blender (with the juice and all). add a bit of avocado for calories or aloe vera juice to thin it out if needed.

- india/caribbean daal (very small yellow or orange lentils) is very high in protein and cooks rapidly. add a bit of brown rice (takes more cooking time) for carbs. it blenderizes (is this a verb?) pretty well.

for me, it's important to have diversity in the diet. most of this stuff can be eaten by others in the home as well, so it's possible to make my sister's food at the same time and in the same pot. oils and powders can be added at the time of blenderizing.

ed, i would gladly visit your home if it were possible.

be well.

gita


sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
Joined: Nov 2003
Posts: 12
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Joined: Nov 2003
Posts: 12
Sweety and Gita: My mom got the PEG tube the day before she started chemo and radiation 11/03 and didn't lose any weight during treatment. After treatment, she got pneumonia and mucositus so bad she was hospitalized and then in rehab, but they put her on a slow-drip IV to stop her from throwing up so much. She was so weak anyway(partially from being way over pain medicated) that her lack of mobility with the IV didn't matter. Also, it could help to have the slow drip just at night while sleeping. My mom had her PEG tude removed 4/04 and has now lost about 15 lbs.- she has no appetite and eating is painful.Good luck---the PEG can be a wonderful thing.

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