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Swallowing and eating after radiation

louiethetzu
Posts: 17
Joined: Oct 2013

Hi everyone,

My fiance was diagnosed with head and neck cancer in June. He started chemotherapy and radiation treatment in July. We're in our early twenties and this has been a scary journey for both of us. Everyone we have talked to who have gone through this said chemotherapy is the worst but unfortunately that has not been so for him. He is able to deal with the side effects of chemotherapy but the radiation to his neck destroyed his throat. He lost the ability to eat very quickly, and as a result he had to get a peg tube put in. He finished radiation treatment the last week of August and the doctors gave him a month break to recover. He started his second round of chemotherapy on Monday and everything is going as well as expected. However, he is still unable to eat and the doctors would like for him to start eating again to gain some weight. He will be doing a swallow study test next week and proceed with a speech and swallow therapist. He stopped eating the end of July and he is is very scared that it may take months before he starts to eat again and on top of that his appetite has returned and he's starting to crave food again. 

Is there anyone out there that has been through a similar experience and could offer some advice on what lies ahead for him? How long does it normally take for these patients to start eating again after seeing a therapist? I know we will get some answers from the therapist next week but I was looking for some quick advice from persons who have gone through this personally.

Any advice that could ease his mind would be much appreciated.....thank you.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

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

louiethetzu
Posts: 17
Joined: Oct 2013

Thanks for replying! 

Yes we have come to realize that radiation is the worst!

And yes they did tell him to take sips of water and swallow his saliva everyday...he has not been able to take sips of water since the end of August but he continues to swallow his saliva whenever he can (couple times a day). He could not eat because of the pain/burning in the throat and inflammation and at this point the doctors told him not to attempt to eat until he sees the therapist out of fear of aspiration. He is also worried he will not be able to eat soon because whenever he tries to swallow his saliva he says his throat feels very tight (like it is shutting off) and its hard for the saliva to go down. 

I guess after he does the swallow study test and speak to the therapist we'll know how bad his situation is but thanks for your input.

Take care,

Nikki

Viilik70's picture
Viilik70
Posts: 59
Joined: May 2012

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's picture
Viilik70
Posts: 59
Joined: May 2012

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.

phrannie51's picture
phrannie51
Posts: 3819
Joined: Mar 2012

the only person I could think of who might think that chemo is worse than rads is the rad doctor (who has never been through radiation) Smile.  At least my radiation Dr. was very glib about the effects of radiation. 

Get your fiance through the swallow test, so the Speech Therapist can see if his swallower is or isn't working the way it should....then you'll know if he needs to start exercises to get it going, or if he's just got more healing to do before he can get down some real food (even if that means Campbell's soup). 

We can all relate to the appetite coming back but being unable to dive in and eat something real....I watched the Food Channel for two months....thinking I would starve to death if I didn't get something other than Ensure.  Slowly....ever so slowly....I started getting soups down....and they were wonderful!!

p

CivilMatt's picture
CivilMatt
Posts: 3062
Joined: May 2012

louiethetzu,

Welcome to the H&N forum, where eating and drinking are on our menu.

You must try to swallow water at every chance and to use your PEG to the max (if you do not eat).

I used a lot of magic mouth wash to help tame my throat, mouth and tongue.  I figure you must have a deluxe case of pain to keep you away from water.

I tried to eat from day one of past treatments, but was off from eating (seriously) for 7 months, due to the feel of food.  Today, I eat everything and drink about 10 glasses of water.  I started drinking water since day one of treatment and have never looked back.  I had pizza tonight.

Because you are going to do a swallow study, I say pay close attention and do everything they say to regain your swallowing ability.

You will get past all of this and start to enjoy your new normal.

Good luck,

Matt

By the way rads had some bad moments (neck burn)

dunedintech's picture
dunedintech
Posts: 69
Joined: Apr 2013

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
Posts: 17
Joined: Oct 2013

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.

 

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

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

 

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

My worst time of not being able to eat was around Thanksgiving. The entire family was over and my wife is Italian, hence the aroma of wonderful meatballs was in the air. Into the blender went a meatball and sauce, from there into the syringe, and from there down the peg tube into my waiting stomach. Heaven on earth. I was kidding about the Merlot. He may not be able to taste it but he can eat anything he sets his mind to. Thankfully, life goes on, don't be afraid to adapt. Welcome to our world where liquid meatballs rule! 

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

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.

 

 

Roar's picture
Roar
Posts: 248
Joined: Mar 2013

I know that during my treatment I breezed through radiation- on chemo days I dreaded it. Always felt like crap for days afterward. Yes side effects from radiation linger on but chemo days really sucked

Ruben and Jude's picture
Ruben and Jude
Posts: 154
Joined: Apr 2013

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

 

nick770's picture
nick770
Posts: 195
Joined: May 2012

I wish the best of everything to you two, tell him he will get through this but also have him use every tool possible (the peg tube and humidifier) and whatever else that will ease the pain and help him get to his new normal.

For me the rads were the worst hands down. And the phlegm , I thought i was going to choke and die many times. 

He will get through this, it WON'T be easy but it can be done.

 

oh and last word of advice is exercise the throat and jaw as much as he can

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