Swallow

You can live on a PEG tube for the rest of your life.  Many do and if you are using a nutrition that has the right amount of protein, etc. you will be okay.  My husband has been on his second PEG tube since May 2012.  So far no problems with it.  And they can be replaced without going down your throat.

As far as the back of your throat, and I'm not trying to scare you, but I know when my husband had his first round of radiation, it completely closed off the back of his throat.  Something we didn't know for 5 months.  They kept telling him to swallow and he had a therapist working with him.  When he had to have a laryngectomy, they came out and had me sign more papers because they needed to reconstruct the back of his throat due to radiation damage.  No one saw this before the surgery.  It didn't show up when they scoped him in the office or when they did PET/CT scans.  Something you might want to ask the doctor about.  

Just remember that radiation is the gift that keeps giving and giving and giving.  It is probably just swelling and with time will go back to normal.  Once they reconstructed my husband's throat and after six weeks, they did a swallow test and told him to start eating slowly with clear liquids, then soft foods and work his way up.  He was able to eat until they found a tumor at the cervical of his esophagus.  Now he relies on his PEG tube.

Wishing you the best -- Sharon

sorry you're getting hit so hard in recovery.  Take heart that since this is all being caused by swelling, that it will go down eventually....I'd give it another month to see if there is any improvement.  I don't know what you're pouring down your tube, but is there a chance you're not getting enough of it?  Maybe taking in another couple of cans per day might help....also, keep that water flowing into the tube....dehydration can make you shakey and weak, also.   I'm wondering, too....what about whey protein for part of your daily nutrition....there is a ton of protein in it, you could blend it with water to make it thinner.....and it would pour down your tube with ease.....just thinking for additional protein, this might work.....you get it at the health food store (or even Walmart, here).

p

Had to edit this.....are you walking at all....just half way down the block and back (or even a quarter of the block in the beginning), to start building up stamina.  These treatments hit us hard with muscle loss.....

JF,

If your doctor is not overly concerned, then  this is just the healing process.  Many people on here have shared the post treatment PEG problems, throat and swallowing problems.

I will hope to see improvements in your situation very soon, don’t expect too much, this is a slow process.

Matt

Decadron? Prednisone?  It sounds awful, so sorry you are suffering.

PJ

I am sorry to hear the news but it’s not all that bad and you will get use to it. I will be two years on the PEG this coming April. Went to the children house for thanksgiving everyone was there, when the bell rang to eat, I pulled the Nutribullet out and filled it to the rim with everything I could put in it. Don’t know how it taste but should made my belly feel good.

One day at a time and I am so thankful for just one more day

God Bless

Tim Hondo