Dave is at the end of his 4th week and at this point still eating regularly. He is starting to get hoarse and a little sore in his mouth and throat.

I know everyone is different but I was wondering generally when it became difficult for folks to eat and they started using the PEG(if they did).
The reason I'm asking is someone suggested that he try to use the PEG before he needs it. He's not loving the idea although it seems to make sense to me. In the spirit of picking and choosing my nagging(lol) I'm wondering if there's a bit of time before we need to worry about this.
It just seems that things can really change on a day to day basis...

I went from eating to using my peg almost over night about week 5. No need to give it a trial run. I just melted down one day and couldn't eat again. I would nt make this an issue to nag about.....

IMO as long as he is able to eat/drink through on his own I would not use the PEG. I went thru this without one so it can be done.

If Dave is holding his weight, staying well hydrated and able eat, that is great.

I switched to the PEG in week four.
By then my taste-buds were shot, I was on a soft diet and everything tasted real bad.

I had a weekly appointment with a CCC nutritionist and they had me using water or a can of liquid diet (Nutren 1.0) down the PEG every day to get me comfortable using the PEG and to be sure I tolerated the formula.

After moving to the PEG I still managed to eat a couple cups of pudding a day and sipped water and juice since it is important to keep the swallowing muscles working.

Yep, starting week four, Bill could not tough through eating. It was like almost overnight when the pain became unbearable and he was forced to use the PEG except for continuing to swallow the bottle of Rain Gatorade that I place before him each day as a gauge of how much he actually was swallowing.

Deb

I'm not too surprised to hear about that overnight change. It's amazing how rapidly things change. At the beginning of this week he had great energy, now he is all about naps(not his usual MO that's for sure).

His weight is stable(knock wood) and he continues to eat fine but he did say his taste is "flattening out." But he can push past the sore throat and mouth at this point.
So, I guess we'll just wait on the PEG. Sloan is an advocate of the PEG ,if needed but they emphasize over and over that he should eat and drink as much as possible to keep the swallowing going. He would love to not use the PEG.

I'm working very hard to take it day by day but it's a bit hard to draw the line between being prepared for what's next and neurotically worrying about what's next. Don't know if that makes sense...

Susan,

What comes next is that the naps get longer, the eating gets harder, the pain increases and the taste goes.

All those things happen and then they un-happen after the treatment.

It's like a flower pulling its petals in, in the cold of night and then unfurling them again in the warmth of the day.

Right now it's twilight and you are in for a chilly evening before the warmth of the new day comes and reverses all that happened before.

It�s never the same but life is still beautiful.

Wow Kelly,I'm printing this out. That is exactly what I need to remember. THANK YOU!!!

Susan

Like DavidCPA, I advocate trying it without the PEG. I've have done it both ways now through two separate radiation & chemos about 18 months apart. As a caregiver you can see how easier it would be with the PEG, and that was indeed my experience even if I had no choice in getting this feeding tube. As the patient however, the positive psychological reward of NOT needing a feeding tube completely and totally outweighed any convenience. I have been guilty of starting PEG wars in the past by replying in kind to other poster's scoffing at giving myself an imaginary medal for doing it the hard way but I should have been clearer that their decision was equally valid.
Long post to suggest that if your patient has similar feelings to mine to avoiding a PEG, the support of the caregiver is priceless. My wife supported my decision and it made all the difference to me. I liked a quote from Stanford U's Center for Integrative Medicine's director, David Spiegel albeit on alternative therapies
[quote]Cancer patients feel helpless. Their bodies are turning on them. To the extent that we can give them a sense of power, of control, we can improve teir quality of life and, I think, perhaps even affect the course of the disease[/quote] That's what not getting the PEG meant to me
Charm

I did not want to use my PEG tube at all. Immediately after week three, I woke up one morning and there was no way I could get anything down my throat. I had no choice I had to go to the PEG. It literally happened overnight for me. On a Friday I was eating strawberry shakes and things like that. Saturday morning came along and bam. The pain was horrid and I could not even sip water.