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Kellie Offline OP
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My sister Julie's Dr wants her to start to weaning from her tube feedings. Nothing seems to taste good. She takes bites of things and then throws them out. She has found that she likes yogurt. Are there any foods that worked better than others?

Thanks for the help.
Kellie

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Kellie-
Well, here I go again. I really should get some Starbucks stock, but their frappicinos were about the only drink I actually liked from the 4th week of radiation on. Made my RN husband crazy since he was working on the nutirition side and I was going for anything that I could taste! Must say they helped me put on the weight...which is why I no longer get them :rolleyes: Garlic mashed potatoes were pretty good. Anything chocolate is NOT good. - Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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Kellie,

Believe it or not, I opted for Ragu with spaghetti noodles. The tomatoe didn't bother me and the noodles went down good. I downed jars over a week. Cottage cheese wasn't bad. Soups were harder for me to swallow and caused me to cough and choke. The taste preferences will change by the hour. Start with the favorites of past and work through them but don't make too much of any one because it can change by the mouthful, even a year later.

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
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It's been a long time, but I remember being able to eat soups, scrambled eggs, cream of wheat cereal made with water and having hot milk, butter and honey on top. Couldn't taste sugar at all. Rare steak and lamb chops cut in the tiniest pieces. Apple sauce, mint jelly. No potatos made any way. Peas, string beans. Turkey with lots of cranberry and gravy and stuffing. Lettuce that has lots of water in it with blue cheese dressing (anything with vinegar burned). Pasta with alfredo sauce. Ice cream, pies. Apple juice, ginger ale or frasca if I left the can open in refrig so bubbles went away. Lots and lots of milk, even fortified. Beer after about 3 weeks.

As Ed says, what tastes good one day may taste like crap the next. It all takes time and perserverence. Basically you need to pick foods that contain a lot of moisture, little to no spice and no citrus. Lots of gravy or sauces. Get out the french cookbook. Took me forever to be able to taste sugar. Also, does she have thrush? Get that taken care if she does because that affects what she can and should eat.

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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Hi Kellie,
If I'm not mistaken your sister is only about a month out from the end of radiation. I didn't really eat anything at this stage, I kept using my tube. Each day I would try some soup or something like that but it was very difficult. I ended radiation July 15th 2003 and that Thanksgiving I was able to eat a tiny bit of the meal. I found that soups and potatoes worked well and I am one of the few that could handle the carbonated drinks. I would eat what I could and keep my nutrition up with the tube.
I LOVED chocolate Krispy Kreme donuts, I ate the heck out of those things!
The most frustrating thing for me was that after a few bites anything I was eating would lose it's flavor.
Now, over a year past radiation, I taste everything and the flavor stays with each bite.
Tell your sister to eat what she can and use the tube to make up for what she cannot get by mouth.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Hi Kellie,
If I'm not mistaken your sister is only about a month out from the end of radiation. I didn't really eat anything at this stage, I kept using my tube. Each day I would try some soup or something like that but it was very difficult. I ended radiation July 15th 2003 and that Thanksgiving I was able to eat a tiny bit of the meal. I found that soups and potatoes worked well and I am one of the few that could handle the carbonated drinks. I would eat what I could and keep my nutrition up with the tube.
I LOVED chocolate Krispy Kreme donuts, I ate the heck out of those things!
The most frustrating thing for me was that after a few bites anything I was eating would lose it's flavor.
Now, over a year past radiation, I taste everything and the flavor stays with each bite.
Tell your sister to eat what she can and use the tube to make up for what she cannot get by mouth.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Julie,

I never had a tube, so I basically resigned myself to the fact that everything would taste bad for awhile, and the most important thing was to eat things that would go down easily and pack on calories. They included many of the things listed above -- anything that involved minimal chewing, sauces to help with swallowing, and avoiding acidic foods entirely. Eventually the taste buds do come back after a good many months, but you can't wait for that to happen in order to eat.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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Kellie Offline OP
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Thanks for all the input. Julie has been rather frustrated with this aspect of recovery. I think her biggest fear right now is that she will have to go back to work with the peg. Minnea you are correct that she finished radiation about a month ago. She is healing very quickly. Although the nutrionist thinks the Dr is pushing her too wean very early. Sounds like the key is sauces, soft food and to try lots of different things. The Krispy Kremes and garlic potatoes sound delicious regardless.It's nice for us to know that we are not alone.

Kellie

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For me, it's not so much soft as slippery foods - to my great surprise I found out that by six weeks post radiation, I could eat rice crispies with lots of milk, while any kind of cooked cereal was impossible. Keep trying different things, as everybody says. Chinese buffets are great, you can try a little bit of lots of things, and go back for what works - just avoid the spicy stuff - and a lot of things are slippery.
Often thick drinks, like milk shakes are easier than water or juice.
Good luck, Leena


scc right tonsil T1N1M0, right tonsillectomy + modified neck dissection 3/04, radiation IMRT both sides X33 ended 6/04.
Also had renal cell carcinoma, left kidney removed 11/04
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Hi
I agree with Leena, slippery works best for me, omelettes made with plenty of butter is a good standby for me, pasta with cheese sauce, wish chocolate still tasted good! Oh Well!!
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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