Kyle,

I had tongue cancer and did not have a PEG tube (this was 18 years ago and it wasn't even presented as an option). As many others have said, it's really tough to keep eating enough, especially during the latter stages of radiation. My weight went from around 130 to 112 or so, even though I was VERY determined to keep my intake at a fairly high level.

You can't know for certain how badly your body will react to treatment -- as you can see from the many posts on this site, there's a pretty wide range of responses. I would suggest that, if you don't start with a PEG, you at least have a contingency plan in the event you can't get all the way through without it.

Cathy

Kyle, if you do decide to get a PEG, now or later, it is not a big deal. Outpatient, takes about 30 minutes, then another 30 for you to get clear headed enough to go home. Just a little sore for a couple of days, and daily swab around the entry point. Does not show under clothes, smell, or leak. Creative use of plastic wrap enables one to shower easily. A few people have reported negative experiences, but I believe by and large, it is pretty much a cake walk, as it was for me. Good luck!

Hello Kyle,

You may want to look in the "Introduce Yourself" section under the topic I posted titled "New Member-Need Support". There are several helpful replies there regarding the feeding tube issue.

Stay strong,
Sue

Hi Kyle,
The PEG tube issue was never really discussed with my MO or RO. My MO said he didn't think I needed it and I was to ignorant to question him. Apparently, I didn't do near as much pre-surgery and pre- treatment research as most of you. However, I think I am one of the few it worked out OK for. I never had a problem eating or swallowing. I maintained my exact wait throughout and only had 1 sore throughout the whole process. I was fatigued and lost my taste after 3 weeks but, that was it. I wish I knew what my secret was. I guess everyone is just different.

I was told that if I just had radiation, I could decide to not have a PEG but, had I been treated at Dana Farber, they required it for rad and chemo combined (as mouth pain and swallowing often are much worse). I know it isn't entirely true, but many people on this board who didn't have a PEG also didn't have concurrent chemo with their rad. You don't say if you are having chemo, Kyle, but if you are not I would think it much more liekly you can make it through the entire treatment without it.

Nelie

I didn't have a PEG, but I had tonsil cancer. I only lost about 10 lbs during radiation. My nurse recommended it siting patients do much better with it, but my oncologist didn't think I would need one. I did have a problem with Ethyol and I contribute that to not drinking enough water. I should have gone to ER, but I was too sick (104 temp, vomitting...). Without a PEG my WHOLE day was spent trying to figure out what I could eat or drink next. I'd stare at my drink for an hour and then take 3 hours to drink it. As soon as I finished, I tried something else. It was very time consuming to stay on top of nutrition and hydration. Overall, I was very lucky had little problems with the whole course of treatment. Of course, 2.5 weeks out of tx and I'm still staring at my drink from 2 hours ago.

Kyle, hello and good luck for starters. I too had tonsil cancer. I made it through without a peg. I had rad and chemo together. I was about 210 and pretty muscular I am now about 175 and can only lift what my wife lifted at the gym yesterday. I had a couple of struggles with nausea that had us concerned. Very rapid weight loss. I also had to have fluids the last two weeks of treatment and the week following. I have not had a solid meal in 2 1/2 months. I have started to eat small servings of soups at the end of the day. I actually am feeling pretty good though, and my docs are extremely pleased. That being said there was a point that had I not had a break in the nausea I would have probably had to get the peg during treatment. That was scarier for me for the obvious reasons of possible infections if your blood counts are low. I was lucky and maybe new meds are helping some of us make it without pegs. I don't know but I think if I had to do it over I would get the tube just in case I hade to use it. If I didn't have to use it I guess they would just remove it afterwards. I'm glad I made it but about mid way through I was extremely concerned. I think what made me not get one was that I had an iron stomach. I don't think I had ever been nauseous. When I got that way I was miserable and had absolutely no desire to eat. Thank goodness for Zofran. I took it and My nausea disappeared. If I had the tendancy to be nauseous I would absolutely get one. Good luck with your decision.

More interesting "stuff" about the differences in tx. John had a peg placed during initial surgery [athe Doc did not ask- just told us it would be done] and rad. only was part of the 1st tx. That peg was yanked about 6 weeks after rad ended. The 2nd time, the peg was again inserted during major surgery and this time chemo only was the tx. I thought the statement above about not needing a peg if you were only having radiation very interesting because rad. was harder on John than the chemo was. Amy in the Ozarks

Amy, I see people at the rad ctr at Emory that look like they are sick as h***but they are there every day. I have spoken quite a bit to this one person who's treatment has gone similar to mine and the only time he used his peg was after his chemo. To look at this guy you would think he is ready to drop but he is far from it.

Kyle I guess the bottom line is go with your gut. You know what kind of stamina and grit you have. If you feel not having a peg will impede your treatments than get it and don't look back. I am now done with ALL my treatments and I wish you and everybody still in treatments the best!!
Also let me add this, you will pull strength from people you are in treatment with. All it will take is starting a conversation and things will be said that you will find the strength.
good luck and GOD bless.