Well, I've just reached week 4 of the 7 radiation treatments and am still able to eat by mouth (soft, smooth foods like Jevity, Ensure, puddings, cream soups, yogurt (lowest acid ones) and frozen yogurt. I was told yesterday that the side effects from radiation should have plateaued, meaning that the effects I'm currently having will continue, no better, no worse, until I'm finished with the 7 weeks, then will start the healing process.

If that's true (and I pray it is!), I won't have needed this PEG stomach tube (first OR second ones) at all. All that pain and fear twice, but I'm glad I had it installed just in case.

Guess I can put up with it for another 2 months, but as soon as I'm able to include chunkier foods (soft fish, meats, veggies), I'm having the sucker removed ASAP.

In the meantime, I don't know if it's just my tube or not, but the dumb thing tends to ooze stomach contents out the feeding end. And it smells like vomit and smelly feet no matter how often I clean and flush it, not a happy smell! So I bought some of those thin panty liners for female hygiene, the ones with the sticky backs. Put the tube end on half of the sticky back and just fold and press the other half over it. Cuts the smell WAY down, plus is more comfortable against the skin because of the soft cotton covering.

Hope this suggestion helps someone else that might have run into this problem.

On the plus side, the first tube that was removed healed in nothing flat, just leaving a red dimple right under my ribs. That I can live with. But no leakage or infection at all from it.

Sharon

Sharon,

I don't know who told you that the radiation effects would plateau in week 4 of 7, but it sounds like someone who has never actually experienced radiation. I can't recall a single poster on this site who has reached a "plateau" in side effects midway through treatment, so I'm concerned that you may have gotten some misleading information. Personally I found the first few weeks to be pretty tolerable, and I was eating about the same things you are, but the remaining weeks of treatment (and several weeks after that) got much worse in terms of pain, thrush, and eating difficulties.

While I was able to get through without a PEG tube, eating became an increasing struggle in the last several weeks of radiation and for a couple of months after that. Since you have the tube available, you may find that you want to make use of it at some point.

Cathy

Hi, Sharon- just wanted to let you know that John's tube also has liquids back up into it. He finishes each feeding with an 8 oz flush of water to keep it clean. He uses peroxide around the incision if it starts getting yucky looking and always wears a gauze pad next to his skin. Amy

Hi SharonD:

I posted something in reply to you under "currently under treatment." Sounds like you're doing very well, but as mentioned, be prepared for things to get worse, and well beforehand, request the proper pain manangement such as Fentanyl patch and liquid morphine for breakthrough pain! I can't stress this enough. My husband suffered horribly during his last week of treatment because his pain was not managed correctly.

I will pray for you!

Like Cathy, I did really well the first few weeks of treatment. Shoot, I was a little cocky about it all! Then the side effects kicked in and I was miserable. Sharon, like Cathy I have never heard of anyone being told that the side effects peaked at 4 weeks. That simply isn't true. If anything, the WORST two weeks are the two weeks AFTER the last treatment, as the effects of radiation are accumulative and are STILL at work. Again, I hope your good luck continues but don't want any newcomers mislead by your very unusual circumstances.

My whole treatment lasted for 7 weeks and I remember the side effects started getting worse when I was in week 5 when my neck was burnt and swallowing had become a big problem. I even suffered from high fever and was finally admitted to hospital for 3 weeks.I am not sure at what time I faced the worst situation but I agree with Minniea that side effects are accumulative and can be working even after a few years of remission. That may sound scary but people who have intensive radiation are likely to experience this. Yet, I also believe that everyone's experience is unique and some can be luckier than others. We are here to share our own experience and it is important that when reading the posts here, members understand that what apply to others may not necessarily apply to them. For instance, some think that inserting a PEG is a walk in the park but some may think the opposite. I won't comment here as I never had one.

Karen

I just need to chime in that week 4 was far from the peak of side effects from radaition for me. For me they peaked about two weeks after the end of radiation.

I also had a PEG that I wasn't using into week 4 and I think one thing you need to be aware of is that even when you aren't using your PEG, you do need to flush it at least once a day because yes, the contents of what's in your stomach will back up into it. Flush it with somethinhg fizzy and nice-smelling is my advice. I used gingerale for a while. Much better than sticking some artifically scneted pad over the top--god knows what chemicals are in that that ccould go back down into your stomach!

Nelie

Sharon, If your peg tube is one of the types that has a "whip" end (extends away from the body) you should be using a rubber band on it. Fold the thing in half, and then in half again, and put a rubber band around the bundle. The kink nearest your body will prevent Anything from coming through it, and the bundle of tubing is a bit easier to tape down.

At one point, when I was still using whip type peg tubes, I slid a paper clip over the tube near my body to pinch it shut. I wore a simple string lanyard around my neck, that hung low enough to hold onto the top of the tube and keep in vertical under my shirt.

Get creative with pinching the tube shut. Tiny clothes pin, paper clip, bobby pin, crimped and rubber banded, crimped and tied with a shoe string. Make certain your clamp pinches tight enough to completely close the tube, but not so tight that it cuts into the tubing.

Only docs who have never worn a peg tube continue to install tubes with whips. The real pros install the MicKey type tubes that are flat on your stomach and have no whip. The head of the peg has a valve and fitting. A whip with a special end is inserted and twisted into the peg when feeding, and then removed. No tubing, no leakage - very nice. Some of us live by our pegs and have learned many of the lessons the hard way. Be strong. Tom J

I have a peg question as well. In addition to the problems that Sharon is also having, I am still having a lot of pain where the peg was insterted two weeks ago. Is this normal. I would give it a 7-8 without painkillers on a scale of 10.

Sarah

Sarah, call the Doc who inserted your tube and tell him that you are having that pain. If he tells you it will subside in 4 or 5 days, o.k.- but you need to tell him that IF it doesn't go away, you want to come see him. Amy