Previous Thread
Next Thread
Print Thread
#200887 07-19-2021 11:23 AM
Joined: Jun 2021
Posts: 41
Likes: 6
steve l Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Jun 2021
Posts: 41
Likes: 6
This is in addition to an earlier thread. I am 12 years post treatment. I went to the UCLA head and Neck guys last week. They confirmed what I thought, I have significand damage from radiation to my neck, esophagus and vocal cords. I have a tough time eating and I aspirate A LOT. I know I will need to get a PEG in the future, I am bummed out about it, but am realistic.

I did have a PEG back during treatment, but honestly have forgotten much about it.. I am 70 and still pretty active. I also like to travel and backpack. Can any of you who have had to go back on a feeding tube give me an idea of what to expect??? Also, how long can one live while having a PEG, assuming they are pretty healthy to start. Very fearful for me, my crystal ball is a bit cloudy right now.

Thanks in advance for any help

Steve


steve
72 yo
SCC 2009
Radiation/Chemo, clear 2010
Active triathlete
NPO and bad voice after 12 years
But doing great
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Steve, a feeding tube should not have any impact on one’s life expectancy. However, aspiration can lead to aspiration pneumonia and hospitalization. I would strongly suggest that you find a speech and language pathologist at your hospital and make sure that you see her on a regular basis so that he/she can check your condition. You really need to fight the urge to have a small sip of some flavourful liquid to take away that bland taste in your mouth. If you get a temperature, or a cough, make sure you go see your doctor ASAP. Otherwise, it shouldn’t impinge on your travels and even backpacking, just make sure that you can clean the tube and the area around it while you are doing that, you don’t want to get an infection from that. Wishing you a smooth journey ahead.


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.

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5