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Seda Bug #111975 02-08-2010 04:39 PM
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Jon. ,maybe a good blender will help you with food, It will liquify them . As for the spaghetti you said you make, over cook the pasta by about 15 minutes and you can mash it like butter and it goes down so much easier. I need you here to treach you a lot of tricks with a guy that has no teeth, not much tongue and 24/7 pain in his mouth and throat. I also have xposed dead jaw bone. on both sides to put up with as it gets very sensitive.


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
EzJim #112175 02-11-2010 06:01 AM
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Hi guyS.I have taken in all you have said about diets and recipies.

I find I can drink lots of pomigranite and Grape juice also flavored Soya not milk, my diet is getting better but after a month now from 5 rads and 4 chemos I have to have my MRI scan 13th march I hope it is going to be good results my lymph node was 6cm now seems to have gone and hopefully the base of the tongue tumor has also as any of you guys had any problems after your scan do you think i will b able to continue with out any surgery in the future, .


"Base of Tongue Cancer", may be HPV cancer. swollen lymph nodes, half the tongue base Now T2/3 N2 MRI scan and simulation mask, 4 Chemo/35 rad of 35. Tumors gone. can eat. MRI April 19th , Nodes now all gone, was 6 cm, weight GAIN to 81 kg but found 2.1 grey area on MRI. Biopsy next.
Teacher jon #112178 02-11-2010 06:14 AM
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Posts: 396
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good luck with the scan in march.
we will not be able to tell u whether or not u will need surgery. only ur medical professionals will be able to tell u that.


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
homershoney #112187 02-11-2010 07:29 AM
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I never had troub;e from scans, but had sca ns because of troubles. I hope you are on the main highway to recovery Jon. You sure talk much better now than before and ar sounding positive.


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
EzJim #113661 03-06-2010 05:52 AM
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My main worry now is, not only the MRI coming up next Saturday, where the doctor told me quite bluntly as they do here, I will have 4 choices 1) cut out what�s left of my tumor in the base of my tongue, 2) cut out my lymph glands 3) or more chemo or 4th nothing so what a choice.

The other problem is as I thought I was eating enough, I have now actually lost 4 kgs so I need what I cant get here, to top up my calories Nestles breakfast 506 type drink, I have had a kind reader here, write to me and offer to send various supplements in a care package, but I cant see her sending 4 TIME 500CAL each, a day of this drink, its far to expensive.

So I just don�t know now what to eat here to put on weight, did any of you guys have a problem with putting it on, also as I have lost so much muscle, I just can�t get that put back on either. And I feel quite weak some times still, 8 weeks after the end of treatment.,


"Base of Tongue Cancer", may be HPV cancer. swollen lymph nodes, half the tongue base Now T2/3 N2 MRI scan and simulation mask, 4 Chemo/35 rad of 35. Tumors gone. can eat. MRI April 19th , Nodes now all gone, was 6 cm, weight GAIN to 81 kg but found 2.1 grey area on MRI. Biopsy next.
Teacher jon #113665 03-06-2010 08:18 AM
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John , Ilost 70 lbs in 2007, got it back up to 185, then they found a reoccurence of an aneurysm in my aortic abdominal and had 1/2 of it fixed rhen and awaiting the second operatio, I went back down to 150 and eat thru the pain to regain. I am back up to close to 170 after the last year. The weight is very hard to put back on your body. If I were you, I would watch the citruses and their juice because they contain acids which burn the heck out of your mouth and throat. Even bananas contain acids. Good luck with everything.


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
EzJim #113674 03-06-2010 10:02 AM
Joined: Sep 2009
Posts: 618
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Jon,

I'm eating much better now but have not gained back what I lost. I did not lose a lot of wieght during radiation. I went in and out at about the same wieght but lost some in the month after treatment. no matter what I eat I don't gain. I hear it takes a year before your body gets over the healing and lets you gain.

I think DavidCPA said that.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #113676 03-06-2010 11:37 AM
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Just remember, we are eating different foods than most of us did. Oh for some solid food, even just 1 time would be great.


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
Kelly211 #113680 03-06-2010 11:53 AM
Joined: Jul 2008
Posts: 507
"Above & Beyond" Member (500+ posts)
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Jon,
The problem I had for a few months following Tx was a big loss of appetite.

I was off the PEG, but most foods still tasted poorly or lost their taste after a few bites. Also I didn't like the taste of Ensure or Nutren so I tended not to drink enough of it.

The nutritionist had me start keeping a log of what I was actually eating and drinking and found it just wasn't eating enough calories. She calculated my metabolic multiplier as 14 (rounded up), meaning I need to consume 14 calories a day per pound of body weight and wanted me at 170 pound. So, I need to consume ~2400 calories/day.

As my taste gradually improved, so did my appetite, but it took a few months. Try adding some hi calorie items like chocolate, cheese cake, ice cream (anything hi-cal that tastes tolerable) and consider keeping track of your daily caloric intake.

Last edited by DonB; 03-06-2010 12:19 PM.

Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

DonB #113695 03-07-2010 03:16 PM
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Jon,
Since most of us are in the US or England, we have no idea what is available to you in Thailand. You need to eat foods that are high in calories. Do you have ice cream? Can you make any of the shakes that are the board? They must have some kind of awful tasting food supplement that they give patients that are on peg tubes in Thailand. You need to ask your doctors there about them. Here's hoping for a good report on your MRI.

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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