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#139369 09-06-2011 02:32 PM
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Nothing tastes good.i am four weeks out of rad and all i can eat so far are eggs one piece of breakfest sausage, sometimes hash instead of sausage. ounce a day and it takes forever to eat that small portions. how long does it take. have a peg that helps keep my weight up as i've lost 55 lbs. all i keep hearing is everyone is different. so what is the average time? how long can i keep the peg in? I also have a hard time watching tv except sports programs. can't concentrate. ps where is the spell check on here. Thanks Pat

Last edited by patrick2128; 09-06-2011 02:33 PM.

dx mucoideperdermoid stage 1 .9cm tumor removed from
lower left tongue 5-3-11 rad 5-31-11 till 8-10-11 three weeks off in june 9 days in hospital healing mouth from radiation burns. 33 days of radiation.wife is caregiver
peg tube july 7-11 age 59 male.
patrick2128 #139370 09-06-2011 02:47 PM
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Well eating again is a step forward at least. It may take a while Patrick. I have no real idea because I am in post treatment recovery myself. I guess I am lucky, most things I can't taste at all but I can eat. I have basically been living on Raisin Bran w/ almond milk and progresso chicken noodle soup. The soup has liquids and carrots and some protein, I eat 3/4 of them a day. Best I can do really. I have lost coming up on 30lbs myself. We just have to tough it out I suppose, look for small improvements that help keep our eyes facing forward and spirits up. This is only my 5th day out from rads, 8 days out from my last dose of chemo so I haven't seen a lot of improvement yet personally. Not sure what to tell you but to hang in there and don't give up. Everyday forward is a day of healing.


Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]


HankXavier #139374 09-06-2011 03:03 PM
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Sorry no spell check. Dont worry about typos, we can read thru them.

It will take a while longer to return to normal. I know it stinks! Be patient, you will get better in time. I was 6 weeks post radiation and returned back to my office job part time. I think about 3 months post rads, I really felt back to normal again.

Best wishes with your recovery!


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
HankXavier #139376 09-06-2011 03:18 PM
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Hi, Pat
my husband wasn't able to manage a fried egg until about 3 months out, so you're actually doing pretty well on that score. He drank his nutrition before that (no PEG). We found that the shakes that I made at home tasted less bad than the premade ensure and boost varieties. If you have a nutritionist available, you could get ideas from them, but we started with a packet of carnation breakfast essentials, and added milk (dairy and soy), benefiber, ice cream and whey powder. We started adding a little fruit (canned peaches seem to be the mildest) as he was able to tolerate the acid.

Keep trying to find something that supports your nutrition, doesn't taste actively bad, and that you can swallow without too much grief. It is important to keep swallowing to keep your muscles in shape, even if the food doesn't taste fabulous. This is one of the hardest things about recovery - but you are not alone in it!


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Maria #139390 09-06-2011 06:20 PM
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It took 18 months before I could mange even that. Sounds like you may be one of those lucky enough to get back to eating in short order. I hope so. Try country gravy all over the eggs and sausage.

Last edited by Deejer47; 09-06-2011 06:22 PM.

David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
Deejer47 #139433 09-07-2011 07:18 AM
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I think you are all doing good with your eating! Emmett is 9 months from end of treatment - is still using the peg to maintain and started eating soft foods with lots of liquid added and water to wash it down 7 months ago but it takes a long time to eat just a 1/4 c of food still so there is no way he can maintain his current weight (down 45lbs) without the peg or a liquid diet yet. His problem is due to the limited ability of his new tongue to move the food in his mouth and lack of natural silva to help.


CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.
Karenj #139447 09-07-2011 09:16 AM
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thanks everyone for the support. I just had my two eggs a
nd one salt potato. still going down hard. no real intrest in food at all. having a hard time sleeping. ro wants me to see a psychiatrist {sp} as I'm not able to watch anything on tv but sports. i dont want to be around people because i get anxious. Atavan helps but i want to get away from that. Ps i have type two diabeates. I havent had cemo,just radiation. that ended 4 weeks ago.

Last edited by patrick2128; 09-07-2011 09:20 AM.

dx mucoideperdermoid stage 1 .9cm tumor removed from
lower left tongue 5-3-11 rad 5-31-11 till 8-10-11 three weeks off in june 9 days in hospital healing mouth from radiation burns. 33 days of radiation.wife is caregiver
peg tube july 7-11 age 59 male.
patrick2128 #139448 09-07-2011 09:24 AM
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Posts: 945
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Hi, Pat
You should be able to get the nutritional drinks formulated for diabetics - if you have access to a nutritionist, take advantage of it! I like your RO's suggestion of getting a little counseling help - anxiety was certainly an issue for me (and I wasn't even the patient). Take care and keep posting!


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Maria #139451 09-07-2011 09:55 AM
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i drink glucerna (sp) for diabetics and it seems to help. I guess Im looking for quick answers. i have a lot of doctors and now counseling on top of everything else.


dx mucoideperdermoid stage 1 .9cm tumor removed from
lower left tongue 5-3-11 rad 5-31-11 till 8-10-11 three weeks off in june 9 days in hospital healing mouth from radiation burns. 33 days of radiation.wife is caregiver
peg tube july 7-11 age 59 male.
patrick2128 #139452 09-07-2011 10:15 AM
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Posts: 945
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Sorry - no quick fixes ... except maybe - are you using any of the BMX / magic mouthwash stuff? That might help with the swallowing. Glad the glucerna works for you, though.

My guess is that once you can get the sleeping part of it worked out, you are going to start feeling a lot better. It will take a while to get your energy back though. If you are keeping a journal (you can use the forum designed for this on OCF), you will be able to look back and see that you are doing better now than you did, say, a couple of weeks ago. Try to think of it in a positive light - last week I could only eat one egg, this week I can eat two!


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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