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Joined: Aug 2014
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Thanks everyone. Yes, i loved a few beers when working outside, fishing, sitting around a camp fire, etc. I, m gonna talk with all 4 of my doctors. My RO said moderation would not hurt me.

Yes, i love messing around with different stuff to throw in a shake. Since tube is out, gotta find different mixes for boost and ensure.. I made strawberry, banana ensure shake with berries. ~mmmmmmmmmm


Tongue Cancer
1/2 tongue removed, replaced by flap from forearm. April 15, 2014
neck disection, 1 lympnode involved, doctors removed all to make sure cancer is gone.
30 rad treatments and 2 cisplatin chemo, doctor said I did not need the third
one. Finished up July 30,2014
Chemo treatment was my choice. The board felt surgery and radiation was plenty to take care of my cancer.
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John is hoping to lose the PEG tube at some point, now that he is able to swallow. The problem is when he drinks his Ensure 1.5, it seems to get stuck in his throat and creates a lot of phlegm and stops him swallowing more. The MO has made it very clear that he has to keep his weight (which is 183 lb). Is there any advice or suggestions on what he can try?


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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The following list are foods that geared towards patients who are relearning how to eat. The foods are less spicy and easier to swallow.

Make sure for at the very least, the first year after finishing rads calories are at least 2500 and water is 48-64 oz every day. After rads, the patient needs a long time to recover. It takes a full 2 years for a complete recovery. Intake, especially higher protein is what will help make the recovery easier.

Congrats on the feeding tube removal and best wishes!!!

Easy to Eat Foods list


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
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Though my PEG has been out for a while, I still drink Ensure several times a week to help keep my weight up. I have found that my appetite is not what it used to be so I often have a high calorie shake as well. I buy the Boost VHC (530 calories) through Amazon and mix with ice-cream, milk and a few scoops of Carnation Breakfast powder. The texture, while thick like a shake, can be blended with more milk or ice to thin it out; maybe that consistency will be easier than Ensure/Boost by itself.

While not the healthiest, I used whole milk in all food preparations - trying to add calories whereever I could, and ate a fair amount of mac & cheese, potates with butter & sour cream, etc.

I hope John's progress with swallowing continues and becomes easier with each day. I share his story with all my doctors so they become aware of it and can know of his success!

Contined best wishes and prayers for all,

Nancy



Last edited by Nancy14; 01-06-2015 07:01 PM.

Nancy
Age 56 at diagnosis
Neck Lymph node removed 11/2012
Tonsillectomy perfomed 12/2012 - identified as primary
SCC Left Tonsil with Left Node involvement, DX 12/2012
RX started 1/29/2013, finished 3/23/2013;
Daily IMRT (35 Sessions)
Weekly Taxol/Carboplatin (6 weeks)
PEG placed after week 4 (3/1/2013)
PEG removed 6 1/2 months later (8/12/2013)
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Thanks Nancy14 and ChristineB for your suggestions. I guess we will try and take it slowly so that he won't feel he has "failed." I also spoke to the visiting nurse who is going to try and arrange for a dietitian to come see John and give us pointers on how to manage the transition.

Nancy, I am so glad you are talking to the other doctors about John's procedure. Even doctors have told us that they don't often come across people who have a blocked esophagus. In response, I always say that people just give up and go away since it looks like nothing can be done.

John's IR will be presenting his new technique at an Endoscopy Conference in Europe sometime this year. It will also be published soon, I think.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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