Eating after throat cancer radiation treatments and use of pain meds.

Great news! Chicken fried steak and enchiladas! Those sound like awesome Texas meals (I live in Texas). Enjoy your new foods. I remember when my husband got his PEG out. It was the best day. I was not even with him at the appointment, and he was so excited that he texted me a picture of his stomach after the removal! Keep up the great work and congratulations!

K9jo,

Chicken fried steak, mashed potatoes and enchiladas does not sound like a picky eater to me.  More like a H&N success story.

Getting back to normal eating took me 7 months, but my Kung pao chicken, Broccoli and beef.  Mushroom chicken and fried rice tonight for dinner is proof to me, it gets much better.

Matt

I"ve just started my treatments and already the thought of food is making me so sick I can't stand it. Got an ensure down yesterday only to have it come back up. Cisplantin I think is the culprit right now but the rad will affect me later.

My husband had severe taste and smell aversions after treatment.  Six months out it has improved greatly.  He had his PEG tube for less than 4 months post treatment.  Eating is still a huge challenge as he has early saitety which is likely related to all the liquid he uses when he eats to compensate for his lack of saliva.  However, honestly we are still seeing improvment with his eating but of course it is not as quick as we would both like.  Hang in there as many things will improve.  

Hello,

I had a neck dissection followed by 30 radio and 6 chemo therapies. I have tried to eat, I am having a problem with food going down the wrong way. I have had 3 swallow tests and have been given exercises to strengthen my tongue muscles along with jaw exercises which give me tremendous pain, ENT team and speech therapy seem to be lost as to what to do. I have been using my peg now for 18 months and just want to get rid of it,but for now it is still needed as I am still reliant on it.

Best wishes Keith

lewcap said:

Tubes, teeth, etc.

Still have my tube in and had to have all teeth removed. I'm using Glucerna in the tube, drinks by mouth, and pureed a hamburger and bun to eat orally last night. I don't understand what shape we're to be in before tube removal. Were those of you who had it removed able to do so before you had new teeth, Was chewing essential?

Along a related line, has anyone noted what feels like a fat tongue (I'm serious). Are corrections ever made to initial tonque results?

Thanks, all. Difficult time for me. Husband died unexpectedly last week (apparently a symptomless abdominal tumor), and I expect to be turning to you here often for help and support. Hope it's not too against our rules to let the personal stuff in here.

So sorry for your sudden loss.

Linda C. said:

I'm having the same problems

I'm having the same problems with smell and taste.  My Oncologist wants me to start eating but I can't get past the taste on my tongue and gag and spit it out.  I'm just not ready.  Had a Swallow Study and I do have a problem with aspirating a small amount of liquid sometimes.  So they want me to use a thickening agent and go on a pureed diet.  I tried but I can't.  I'm not even two months out of treatment and I think it is too soon.  I continue to use my PEG tube and am thankful I have it.  I miss eating so much.  

Dear Linda,  Try this.   I hope it helps.  YOu don't want your teeth to get loose from not chewing real food.

If you have little or NO SALIVA, dry mouth, or just a very hard time swallowing, loss of soft pallet, this is for you.  Buy frozen bags of OKRA. ($1.00 a bag at regular groc stores).  I put 4 bags into a deep covered pan and cover the okra with water.  I simmer it for 8-10 minutes to speed up the process.  Then I turn off the heat and let it ‘steep’ for 3-5 hours. The ‘product’ is the liquid not the okra.  I save the drained liquid and repeat the process (without the heat). I even repeat a 3^rd time.  Take a bite of food and a sip of this liquid and down it goes.  Warm the liquid for some foods according to taste.  Like making sun tea.  The ‘tea’ is the liquid.  The tealeaves, which get tossed, is the okra. I end up with a very thick heavy liquid. The thickness of this ‘tea’ protects the raw, sensitive skin in the patient’s mouth.  With no saliva, teeth edges can feel like steak knife blades.  This thick liquid keeps food trapped in a heavy solution and away from a sore mouth and tongue. If you don’t have such a hard time swallowing, then you can thin the ‘tea’ to suit. Great because it last longer and you have escaped a bad quality of life derailment. FYI: It is a challenge to pour.  Gravity can steal it and dump it on the counter.  I pour/transfer it over a bigger bowl using a small cup to help control this part.  I use a funnel to fill bottles. You can put the liquid into a small Gatorade bottle and take it to a restaurant. You can tint it orange or red.  It ‘looks’ like Gatorade to everyone.   There is not much of a flavor to this ‘tea’ and it takes on the flavor of some foods which makes it nicer. I make up a batch of this every other day.  Okra ‘tea’ makes swallowing EVERYTHING easy. No, it not fun but it works. I can eat steak, some breads, angel food cake, etc. It beats Ensure Plus 24/7.  It is easier to eat what the patient used to LOVE than trying to get the patient to eat something they never liked. Also learnt to enjoy the smell of things.  Maybe we always enjoyed the smell of our favorite foods as much as the actual taste.  The smell and texture. I think all 3 were/are linked to the foods we love. Texture is often shot along with taste.  Maybe all that is left is smell. Smell is better than nothing. FYI pick food that stays together when you chew.  Think bubble gum. You chew, and it stays in the same – one piece.  Find foods that do this.  Chicken and tuna break all up. Rice goes everywhere. Angel food cake stays but regular cake crumbles up. Ham stays together, hamburger does not and is sharp and hurts a raw tongue. Some brands of potato chips crumble up but some stay in a paste. Sweet potatoes stay together but Idaho potatoes (mashed, fires) are like a sponge and stick in the throat.  Steamed new potatoes are good and have a nice flavor that hopefully the patient can ‘taste’.   

Linda C. said:

I'm having the same problems

I'm having the same problems with smell and taste.  My Oncologist wants me to start eating but I can't get past the taste on my tongue and gag and spit it out.  I'm just not ready.  Had a Swallow Study and I do have a problem with aspirating a small amount of liquid sometimes.  So they want me to use a thickening agent and go on a pureed diet.  I tried but I can't.  I'm not even two months out of treatment and I think it is too soon.  I continue to use my PEG tube and am thankful I have it.  I miss eating so much.  

linda could you let me know how long it was before you could eat ? i think you are a little ahead of me. i wish you the best. i thought i was tough old man,but,this is scarey and hard....

your complete story helps so much. the dr.s think they are doing you a favor,telling you to eat as soon as possible. FALSE HOPE.....does you no good. the fact i might be able to eat at all is a BOOST,thanks for the truth.

lewcap said:

Severe mouth and neck pain months after treatment

Been so long since I've posted no longer remember how to start something new.

Having major pain issues. Ent thinks it's TMJ/D but I don't see a dental specialist until tomorrow afternoon. Severe pain and head and neck mobility issues. Basically, I cannot function.  To top that, CT showed an ("unrelated") new spot on my throat scheuled for a biopsy on Wed.

In my experience, the  mouth, neck, ear, etc. pain  is a level 10 and now unrelenting. Very swollen, talking is difficult, as is swallowing. Pills get caught in my throat.

I'd really like to hear if the severity of this corresponds to your experiences.

As I read here, I'm scared.

thanks. Please share what you've gone thro.ugh

Well,  specialist says  it's not TMJ and clearly doesn't know source of tremendous facial swelling and pain. Biopsy tomorrow, and I'm terrified. Do not unerstand how this could show up after last scan was normal.. fast growing tumor??? what happens if this is a recurrence. Please, please answer.