To Peg tube or not

Ed,

For some the PEG is life or death, for some it is a struggle with or without and for a few it is uncomfortable but doable without.

For me, I had two, but looking back I may have been able to wing it, as I always managed to drink 1 meal a day.

My first one was the PEG from h _ _ _ and the second was pleasant enough.

You get used to tucking it away so it is unobtrusive, EXCEPT you can’t sleep on it very well.

Whether you should PEG or not isn’t for me to say.  I did have my second one during treatments without incident, so who knows.

Matt

When we found out that my husband had laryngeal cancer, our doctors wanted him to have a PEG before treatment started.  We were told easy to insert and easy to remove.  They also talked to him about having a port for the chemo.  He decided to go with the PEG tube but not the port. He had no problems with the PEG but half way thru chemo he needed the port because the chemo (Cisplatin) collapsed his veins.  He needed the PEG because the radiation did a job on his throat.  When he had surgery we found out that the radiation had closed off the back of his throat and it had to be reconstructed.  He was able to swallow again 6 weeks after surgery.

A year later after a second primary was diagnosed at the cervical of his esophagus, at first they decided against the PEG but then changed their minds after learning of all the trouble from the first round of radiation (different doctors).  So another one was inserted and we were thankful they did.  Once again the radiation did a job on his throat but thankfully they were able to open his throat.  He is still on a PEG because he can't swallow at all now due to the second primary.  He had to have it changed last summer and it was done by hospice with him reclining in his chair.  He has had no problems with having a PEG tube, others do have problems.  Just remember everyone is different and many don't need them and many do.  Just like many have their opinions for and against them.  My advice would be to follow what your doctors say.  If you don't need it it can be removed and my husband always tapes his to his skin and has no problems with that. I have read where some use an ace bandage around their body and put the PEG in it and have no problems.

Wishing you peace and comfort -- Sharon

...I was a feather weight when I went into treatment and so they just put one in like it was the standard thing to do.  I...having no experience in the cancer world, thought ok.  I managed all through radiation and the first three chemo's to avoid using the little bugger....I even asked my Onc to have it removed now that rads were over, and he said nope, let's wait.  Within 3 days of the first adjuvant chemo (Cisplatin and 5FU).....my mouth turned to bleeding hamberger and I found myself looking at my tube and loving it  .  She was my best friend for the next three months.

There are folks that made it all the way through without one....Skiffen and Don Foo come to mind....and a number who got them later in treatment when they realized it was getting too difficult to get enough nutrition and hydration....and one person on here who got his the last day of rads....

Tube or no tube though.....you're going to have to swallow something every single day....it's going to be your mission.  You don't want to lose your swallowing abilities.....

Not much help, huh?  There are ways to keep it contained during the times you aren't using it, tho....so it isn't too much in the way.

p 

There is no simple answer. I posted this on another thread, but will give you my thoughts again. Because of the location of the cancer, I had chemo (Erbitux ) and radiation, but no surgery. It was never suggested that a feeding tube be installed although they did put in a port for chemo. I lost 40 pounds over the 8 weeks of treatment and the month following. Being a little on the "fluffy" side, I was okay with it, but the dietician and doctor were not happy. Losing weight can indicate lack of nutrition. They gave me fluids several times when I just couldn't bring myself to swallow anything and really pushed for me to drink Ensure or a special protein broth I made at home. I'm glad they didn't put in a PEG, but I would have followed my doctor's advice on it. One can be put in later, but you will not feel very good or strong at that point. You'll be in my prayers as you start this chapter in your life. 

My husband never used his for more than irrigation but we were told that putting it in after problems start can be a nightmare.  Jim never regretted having it.

Hi,

As you can see, this is the right place to find answers and support. My husband's doc wanted the tube placed since the begining. My dad who is the chief of surgery at the oncology hospital he works for suggested we wait since we would not know how he would react and if he would need it. We almost went with what my dad said. Though at the end we decided to do it up front just in case. We are glad we did! By the time Dima started using it, he was already dealing with enough stuff as to want to have had one more thing to do. The procedure was not hard/bad/long. Rather, by then things just were hard all around. He has had the tube since early September. It only bothered him at night since he could not sleep on his stomach anymore. We are probably getting it off soon. He doesn't use it anymore but he is not gaining weight and the doc does not want to take it out until he gains some weight.

I wish you the very best. I hope you journey through treatment is full of support, healing and blessings.

I went through treatment twice with no PEG, but about 3 years ago I lost the ability to swallow and now live on a PEG tube every day. It is not all that bad, had I knew then back in treatment how easy it was I would have got a PEG each time

Here is a PEG to you my friend

Tim Hondo