Swallowing and eating after radiation

Everyone that told you that chemo is the worst...

They don't know what they are talking about.... I'll be willing to bet that 90% of the people here will tell you taht radiation is the worst, and the bad thing, it keeps on giving for a very long time...

As for the ability (or lack of) to eat... Hopefully durong treatment, and having the PEG, they did mention to him that he needed to keep those swallow muscles working occasionally or he could possibly lose the ability to swallow after Tx... Hopefully that is not the case and he's just on a slow schedule..

When you say he "can't eat, is it that he physically can't swallow, or it's just very painful due to inflamation and rads damage?

If it's the latter, more than likely he will get better given time... But usually by now, most people are having some luck even if it might be a painful initially.

Sounds like you are on the right track though seeking medical assistance...

I know the above isn't totally what he wants to hear or ease of mind, but hopefully they'll figure it out..

Best,

John

Be patient : ) it took me about three months after I went through radiation the first time. I've been through this twice and some here have done it three times! I can swallow and eat mostly soft food, but my first time through I was starting to eat like a champ as I said at three months. I still remember what I ate, it was a beef & cheddar from Arby's and I swear it was the best meal I ever ate! Lol! It will happen just be patient and jam as much down that PEG tube because that will also get you healing faster because you will get all of the nutrition you need get back to your fighting weight! Hang in there and pray often...God bless

John J

Viilik70 said:

Hang in there!

Be patient : ) it took me about three months after I went through radiation the first time. I've been through this twice and some here have done it three times! I can swallow and eat mostly soft food, but my first time through I was starting to eat like a champ as I said at three months. I still remember what I ate, it was a beef & cheddar from Arby's and I swear it was the best meal I ever ate! Lol! It will happen just be patient and jam as much down that PEG tube because that will also get you healing faster because you will get all of the nutrition you need get back to your fighting weight! Hang in there and pray often...God bless

John J

Sorry, just to be clear I meant 3 months after radiation was done that I was eating. I ate a lot of really soft fried or poached eggs when my throat wasn't having anything else.

Very sorry to hear about your fiance. However as others have mentioned things do come back online but it does take time and you have to believe this. The radio also messed my throat up and once it stopped (30 Rads) I had thoughts I would never be able to eat again. I am now 6 months out and can eat anything, albiet slower than before. It is a good sign he wants to eat and as I am sure you know, it is important to find something that works to get swallowing again. Others here and myself found milk to be a good thing to try.

Personally I found both rads and chemo equally as tough.

louiethetzu said:

Thank you all

for your kind words and wisdom. Hopefully the swallow study test will yield some positive news and he will be on the road to recovering his swallowing muscles. 

How about the excess phlegm? How long did it take to go away? His oncologist gave him mucinex and robittusin but they have not made a difference....was there anything used to stop/lessen the phlegm? 

We pray that his days will get better physically and emotionally but he feels it will never end.

 

The phlegm is a problem for awhile after rads for most of us.  Rinse a lot with salt/bakng soda, none of the meds work well at all for this.  It will get better, but it takes time.  Speaking of which, don't panic about this, either one of you.  He is still pretty early out from treatment.   It takes time, sometimes lots of it, to get past this stuff.  I've had rads twice.  The first time was a piece of cake.  The second time, not so much.  My mouth ulcers took six months to heal.  And the swallowing dysfunction even longer.  Just take it a day at a time.  The improvements are incremental, so you can't see them from day to day.  But when you look back and compare today to last month, they will be more obvious. 

He can gain weight with a PEG tube. Concentrate on that now, rather than wishing for eating ability that won't be there for awhile.  work on pain issues, and phlegm issues.  See what the speech and swallowing studies suggest.  I think a lot of us aren't prepared for the fact that, once we are done with treatment, the real work begins.  They should do a better job preparing us for this.

PS, read the superthread as it has lots of helpful stuff/

best to you both.

Pat

Hi Lou

as others have said, don't fear the PEG tube.  I believe that it saved my life during treatments.  I lost 75% of my tongue, so swallowing was quickly gone for me.

Staying hydrated is probably the most important piece of advice anyone can give you/him.  I was lucky in that I was able to suck on crushed ice (not ice chips...crushed ice like for a sno cone).  I would take a baby sized spoon of crushed ice and it would eventually melt and I would be able to sip small amounts of water.  It was way more interesting than plain water.....I kind of made a game out of it....and it kept me going.  Plus my hubby bought me a Sno Cone maker.

Don't worry about taste buds (they will be gone/dormant for a while).  Try and do the nutrition you need thru the PEG and you can start playing with soft foods that are "slippery".  He will notice that things don't taste quite right, but go ahead and try different things.  He will find his go to food.

If you haven't already, check out the SuperThread (first item on the discussion board).  It is loaded with helpful tips and includes a section on foods to try.

GOOD LUCK to you both.....I think he is doing great considering where he is in the big scheme of things.

And do remember...it does get better.  We are all proof of that.

Hydration is your best friend, whether by PEG or by mouth, but get a minimum of 1000 ml in per day. Not only does the hydration help one feel better, but it thins out the phlegm and loosens it.

Ruben is just about 4 months out from completing treatment, and is having a hard time with eating, so he get's 9 cans of Osmolite 1.2 per day. He eats only to stimulate his salivary glands and taste buds.  He feels guilty that he's not eating and it tears at my heart to see him try, but hey, he's alive and getting  stronger everyday. Getting the nutrition in is more important than anything. The eating will come later.  But I agree, make sure your sweetie swallows some water or some kind of drink on a daily basis. More than once or twice. I used to treat the swallowing and mouth opening excercises as if it was physical therapy. It drove him nuts, but he did it, an he has no difficulty with opening his mouth or swallowing.

Phlegm.... it's horrible, but it will not last forever. If I remember correctly, it took about 3-4 weeks for it to stop completely. Thank God, cuz that was a nightmare! My poor guy thought he was nearly going out of his mind with that crap!

Hang in there. Stay strong. You two will get through this. There is light at the end of the tunnel. You're not alone. Trust God.

Hugs and best wishes.

Jude

Currently getting nutrition via a PEG tube.  Saliva is just about non existent while mucous/phlegm is plentiful. I have an appointment for a speech evaluation in 2 weeks that I’m looking forward to since I hope it will give me a better idea of a timeline to improving swallowing.  A  glass of water is very difficult to get down, & taking a pill is very uncomfortable it’s as if my throat has become more narrow.  cant open mouth as wide as I used to.