Radiation and tube feeding

we want to say "OH STOP".  But everybody is different.  I got the tube before treatment as a precaution.  I didn't need mine at all during radiation....not until I had adjuvant chemo did I need it.  Then I used it exclusively for 3 months.  I had rads on both sides of my neck, tho my tumor was behind my nose.

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irishkass258,

I had 2 PEG’s, one very bad and one very good.

You should use it just prior to it becoming impossible to eat by mouth.

Remember, to keep trying to eat by mouth and always, always drink, drink, drink, swallow, swallow, swallow.

And days when you do not use the PEG remember to flush it out.

I always managed to drink at least one meal a day by mouth and the other two by PEG.

As soon as you manage to consume enough calories and protein by mouth again you can get your PEG popped.  I was very jazzed to get rid of it and managed to, 2 weeks after rads ended.

I hope you have an uneventful ride, the rest of the way.

Matt

Barbaraek said:

My husband started using the PEG

at week 2 due to thrush, severe mouth ulcers and mucositis. We are now 6 months post treatment and he still uses the tube for approximately 1/3 of his calories and protein. We have been told it can come out when he has gained back sufficient weight and can keep that weight on. For us it has been a long slow process weaning off the tube. It was entirely necessary in his case, but we are sure looking forward to getting rid of it. It is a delicate balance now between needing the tube to get adequate calories and using the tube because it is faster and less scary than eating by mouth. A few choking episodes have made my husband a little tentative. Couple that with the fact that it seems to take forever to eat and that nothing really tastes good...well you get the picture.

Nevertheless, we are pushing on and I've no doubt we will eventually be able to remove it.

Phrannie is absolutely right...everyone is different.

Barbara 

Barbara,

I lived mostly on smoothies and some food for 7 months, until the awful taste and feel of food switched off and food was pretty ok again.

Matt

We had a pretty rough go with the feeding tube.  Oldvamp refused to have one put into place along with the pic line (which he also refused, and lost the battle) , he works in the er dept in a hospital and sees them quite often.  He wanted to go through the whole treatment without one, and work also, much to my chagrin.  He started his 33 rounds of rad on July 6 and chemo on the 7th.  He handled both okay, except for the chemo hiccups (which were really bad) and he immediately started getting chemo fog.  The following monday he called into work and told them he was taking leave due to fatique and the sore throat was setting in, still refusing the peg tube. July 20 (14 days out) he finally conceded, his throat hurt too much to even drink water.  His initial appointment with the gi was set for the 22nd .  He had to suffer for a week longer before the tube was put in (July 28).  We came home and 4 hours later he was able to use it..but, he wouldn't touch it, so I told him not to worry, I'm an old hat at it, after all I had taken care of a woman for 5 years, who was fed by one (she had a sub-arachnid hemotoma, which destroyed her ability to swallow, talk, you name it).

So the first feeding came about...all I can say is go slow, plenty of water, keep the tube up a bit (oldvamp would hiccup, cough, sneeze, yawn and the fluid would start coming out) I had to clamp it off on a few occasions because of that.  I don't know about you, but I really choose not to wear it.  After feeding, as mentioned above, drain the tube by holding it high in the air so it drains below the clamp and clamp it tight.  I also put a small piece of tape over the top of the stopper and then wrapped another small piece over it and around the base of the stopper at the feeding end of the tube, just in case something should happen and it popped open and the clamp came open also. (don't laugh too hard, but it happened to me once and once was enough, lol.  It was one of those "WHEE!" moments lol).

He ended up in the hospital 2 days after the tube was put in, for 5 days due to an infection, high temp and his white cell counts were below 1.  None was due to the tube.  Very scary time 

I started giving him a protien shake Sept 6 (2 months out from the first rad treatment), it was only 865 calories, but that was on top of the tube feeding.  Over the next 3 weeks we managed to get his oral feedings to 3500 to 4000 cals per day, so we quit the tube on the 22 of sept.  The rad onc told us that he had to be on 2000 cals per day for a month before he would authorize the removal.  But, you can never keep an old vamp down.  He was doing so well, that they pulled it 1 week earlier than they had projected.  He's doing fine, eating food that is pulvarized (thank goodness for an immersion blender).  I crush all of his vitamins and put that into his egg omelette, liquid vege iron I put into his apple juice.  He likes bananas with mayo and peanut butter on it (its all about the taste, if he can taste it he'll be more prone to eating it)

Just be patient and things will get to some form of new normal, we are still trying to figure that one out, things change from day to day.  We are shy of 6 months out.  But things are starting to gel some.  There are a wealth of ideas and suggestions here..everyone is wonderful on this site. 

Try not sweat the small stuff and as hard as it is, find some humor some where along the way during the day and hang on to it.