Hi all -

A question about PEGs.

Last week I hd a PEG placement done. I won't bore everyone with the horrible time I had with the aftereffects of the procedure, which landed me in the hospital. Apparently my body is not adjusting to the tube very well. Besides that episode, now that the pain is managed and subsiding, I just feel nauseated all the time, constantly - I can't really eat anything because of it, and using the tube makes it even worse. This is a real problem, as I'm closing in on 20 pounds down since surgery in July entering week 4 of treatment (5x/week wide field rad, 1x week chemo, Erbitux+docetaxol), and I really can't afford to lose any further weight, as I'm not that large to begin with.

Thus far, the major effects I'm feeling from the treatment are thicker mucous and the very back of my throat is dry almost all the time. Since I'm on amifostene, my salivary function is still intact. I can't taste anything, since my taste buds bit the dust at some point in the last week, but I can live with that knowing they'll be back and I can still eat most solid foods as I don't have any sores in my mouth, probably because I'm being exceptionally careful to try and keep them away.

My question is this: has anyone ever had a PEG put in and then removed partway through treatment, or known someone who has? My only real worry is that my mouth will, at some point, become so raw and/or have sores, which will keep me from eating. On the other hand, it can't be any worse than the constant queasiness that is keeping me from eating now.

Thoughts?

Keep the PEG, your mouth will likely get worse, and you will really need it. As with all things, there are techniques that make it easier to use. I too got nauseated every time I used mine in the beginning. I found that I couldn't put anything really cold in it, and that I really had to S_L_O_W down the drip rate. As an example it took 90 minutes for me to have 4 cans of Ensure and two of water drip into my stomach to prevent me getting queasy. Of course since I was sleeping and tired all the time this just meant dozing in an easy chair in front of a TV while the process took place. That reminds me of something else don't do this lying down, another cause for problems and stay sitting up for at least 30 min after you have finished. Make sure they have really trained you on infection prevention and cleaning of the tube itself inside and out. Nothing is more of a problem than a clogged PEG. If they haven't, just say so and you'll have a bunch pf people besides me here giving you the fast track to success with the PEG

Barry was also sick and had nausea and reflux after his PEG placement and lost 3 pounds in four days from not being able to eat much (this before treatment even started). His RO prescribed Reglan (metroclopramide) and that helped immensely. It moves material out of the stomach more quickly and really got rid of the problem for him. Might ask about this.

The whole concern became moot when his PEG (and a number of other patient's) all failed on same day (a bad batch) -- the balloon deflated and they just came out. Since Barry was still eating by mouth and was at start of 6th week (yes, it can be done) they left it out. He is still eating (soft stuff, scrambled eggs, soups etc.) and will be through treatment tomorrow (we hope, tomo machine stll down argghhh!)

For the thick mucous, try Mucinex -- OTC and also as a prescription -- a timed release guafenisen tablet that really thins the secretions. Barry takes 1-2 every 12 hours.

Btw, the feeling that the back of the throat is dry may be more perception than reality -- according to our dental oncologist the radiation actually affects how the nerves back there perceive moisture. I know Barry was complaining that the back of his throat was dry and the doc showed him in a mirror that it was as wet as the front. (He also got amiphostine)

Gail

Thank you both for your replies.

Brian: slowly is the only way I can put water down the tube to flush it without throwing up, so I'm ok with that. That nauseated feeling remains, though, even with that slow pour, and the fact that there's always something hanging around in the tube when I look at it creeps me out. They didn't really give me anything about the cleaning of the tube, other than to tell me to flush it once a day if I'm not actually using it (which I am doing), but I can see from this morning's flush that there are things adhering to the sides of the tube near the base. I'm not sure what I can do about buildup like that if there's always something in the tube. Any advice would be welcome from anyone with experience.

Gail, thanks for the recommendations. The Mucinex would do wonders for me, I think, so I'll ask about that this morning at the RO along with something beyond compazine for nausea (do they make antinausea patches like they do pain meds? that would be a bonus). The Reglan might help with my something in the tube issue I mentioned above...

Cheers to all, and thanks again.

I'm assuming that they gave you some big syringes. After EVERY use of the tube, suck up at tleast two full syringes of warm water and shoot it into the tube after you detach the bag to flush it out. It should always look clean and clear, with no build up in it when you are done eating. I also used these for putting my meds in my tube and then again flushing the tube afterwards. If you have some kind of buildup in the tube it could be a breeding ground for bacteria, and they may wish to change it if they are on the ball, and that is no big deal...5 minutes of time and no discomfort. The bags themselves I tossed very week and started with a new one, ditto the syringes.

Brian,
You are lucky you live in a country where the peg is available freely. In New Delhi, where I live there is just ONE importer who imports the pegs only if he has collected a good deal of purchasers and paid up in advance.Besides the unavailibilty - they are so expensive that only the people with money can afford to change the tube as and when they want. The paients who can barely make end meet have a raw deal and one feels miserable just looking at them.

I am on the peg and have been so for over four years as I have no food passage ( it closed down due to a fistula that occured because of an overdose of radiation) - but to be honest - I have become so used to it that it no longer bothers me and even feeding through the tube over the last four years - I have been mantaining a steady weight just what the doctors want. I have posetd my story in survivor stories and would be glad if you would go through it as I recieved a message from Carol, who told me about you and wanted to know a few answers to my story.
Regards.
____________________________________________
Ananth - cancer of the larynx - final stage diagnosed April 2000/declared cancer free january 2004. Lead a normal life with my voice box intact as it was before I got the illness - with only the peg and the temprory stoma button put into my tracheostomy.

I don't have a bag attached to my tube - it just snaps shut when we're finished using it with the syringe. On the plus side, good news on the nausea front: yesterday at chemo, I spoke to the RO, who kindly gave me some samples of Zorfan (the meltaway kind) and since I am one of those uninsured types paying out of my pocket for every last thing and since Zorfan is hideously expensive (although I'd pay it willingly if it was the only thing that kept it under control, because quite frankly, the nausea part of all of this is the absolute worst for me), he also gave me a scrip for ativan, telling me that it would probably help to keep things under control for the duration, and it's cheaper. The brand name only cost me about $45 for 30 pills, something I can live with, even though I'll need three more refills to get through to the end of treatment. Only three more chemo rounds and 17 rads left, woo hoo!

As far as cleaning the tube, there's always something floating in it, as I said, which gives me the heebie jeebies. However, now that I'm not so queasy when putting something as simple as water down it to flush it, I find I can ensure there's nothing clinging to the sides by putting the tube almost horizontally after filling it with water, then gently rub the tube between my fingers to loosen up anything that has become stuck, and then shoot down some more water. Seems to be working at this point, which is good enough.

Gail, I wanted to thank you again for the Mucinex recommendation. This is working out really well to control the worst of the thickness, which causes me to gag from time to time. I might have to move up to two tabs rather than one as we get into the heart of treatment, but as long as it helps, that's all that matters. The only downer is that you can't crush these, and they're a little large so I sometimes have some issues getting them down. But then I buckle in and tell myself to swallow the damn things because in the end it's worth the temporary problem.

Cheers to all.