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.

Charm,I wasn't sure what the PEG wars were about(that sounds funny,doesn't it? I picture little PEGS lined up like a game of Stratego).

Your post makes lots of sense though. While any caregiver will know just how deeply we too are affected,I also realize that Dave is experiencing anything I am in terms of family,lifestyle changes,etc AND he is experiencing a million changes in his body.
I used to say to him "how's your mouth",then it was "how's your energy", then it was how's your mouth, your energy, your throat." As the list grew we just shorthanded it to how's your "various ailments."

He is amazing with this. Really. And I figure my job is to support his best way of making it through. That said, my amazing guy is a stubborn guy so I also want to make sure he's making healthy choices.

What I'm realizing from this post though is things are coming his way but who knows what or how he will handle it. The important part is that it subsides and that there is a light at the end of the tunnel!!!

Any tips for not using the PEG???

If someone already has a PEG in place, there are several reasons to start using it while still able to eat.

- able to start with small amounts of formula, allowing the GI system to adjust gradually.
- trying out several different formulas, if necessary. Sometimes one is tolerated better than another. Often the RO office will give you one or two samples to try.
- allows adjustment time to actual mechanics of doing the feedings.

Having this all figured out before the patient is completely tube dependent (if that happens) is the advantage. Lottie

Susan

My wife just verified how worried she was the whole time I refused to get a PEG the first go round, especially when I would vomit up the Ensure Plus I had painstakingly forced down. Still she knew how important it was to me to maintain the feeling of active resistance to this cancer so supported me. She knew when she married me just how stubborn I am and it sounds like Dave may have a similar streak.
Again, while there is certainly no shame in getting a PEG if it gets too much for Dave, I was exuberant that I got thru 40 rounds of radiation and eight chemos without one. For me the trick was to sip Seltzer water and then spit it out with the mucous between each and every swallow of Ensure Plus Sounds worse than it was. Again, this elective decision is highly personal but I was always that guy in the 10K race who started to sprint at the 5 mile mark when others were slowing down, or started to pick up the pace at Mile 25 of the Marathon. Amazingly I would end up passing literally dozens of people at the 10K and hundreds at the Marathons because they did not think the extra pain and effort were worth it at that point. It was that way with the PEG for me - I knew if I just hung tough and kept on I could finish the TX without it even while the rest of my group in the waiting room faltered.
As for healthy choices, even with the second round of radiation and chemo less than a year ago, I just finished spreading out one thousand four hundred pounds of while marble chips to make a little patio for our fire pit (with lifting each 50lb bag twice, that's over a ton).
Dave is lucky to have a caregiver who can understand that sometimes a man's got to do what a man's got to do.
Charm

The objective is to:
"...hold a good weight, keep your energy up, maintain your muscle mass, good nutrition and hydration"... Otherwise you need a feeding tube".

"At MDA a feeding tube can be placed at anytime during treatment... and should not be your only source of eating and drinking".

(Source: Denise Anderson, Sr Clinical Dietitian , Clinical Nutrition. University of Texas, M.D. Anderson Cancer Center)

I know at the 'bitter end', even with a PEG, the nausea made it hard for me to keep enough down.

You're right.Keeping the goal in mind is what's important. He does have the PEG in. Sloan advocated putting it in before you felt crappy. They made it clear it was a choice but a highly recommended one. That said, they constantly speak of the importance of swallowing and are thrilled that he's not using it.

Charm, your wife sounds awesome. As I'm sure you know being happily married for many years has it's perks(to say the least). One of them is knowing what battles you can and can't win. So,I know to let Dave take the lead on this(cause a man does indeed need to do...) UNLESS I see his health sliding(then the man's gotta do what his wife needs him to do...LOL).

In addition to the mouth and throat pain, did people have issues with the mucous creating eating problems? That is getting quite nasty(or as Dave puts it"frothier than anyone would want...").
I remember reading about it and suggested drinking seltzer(that stuck in my mind from a thread).
But when I searched for it I didn't see tips to help with it.

I know from speaking to Wanda that it can be a real problem in terms of stomach upset.

Wow. Did I just hit the mother lode. Went back and searched some more and hit 200 possibilities.

It really is a baffling to me that every hospital doesn't have info posted about this site.
And that more support groups aren't offered.

I feel that once we got to Sloan(after hearing things from DR doom and gloom) we were kept very well informed. But the additional ability to seek practical and emotional support is invaluable.

I had so much mucos that I could take a handful out of my mouth with one swipe. I just could not bear the thought of swallowing anything and did not. I didn't even swallow water for 4 weeeks. I did not loose my ability to swallow luckily. We are all different. I am very stuborn but when it was necessary I had no problem "crying uncle" and using the peg.....gladly.

susanW, thank you for the kind words about what those that come to this site have to offer others. We just picked up a new person in the office, Jamie, who spends 2/3'rd of her day each day doing outreach to treatment facilities. It isn't an easy job to get through to someone at the hospitals. Our best success has been in getting staff in the social services department to want to have our literature there. Getting it into the hands of the nurses in the radiation treatment areas and in the chemo areas is harder. We actually have two cards, one of them tells about the OCF web site and the information, and the other is a direct set of instructions on how to navigate via the web right to this board. They are just as big as a postcard.

Getting those cards at the radiation check in desk racks, and elsewhere in the hospitals is difficult, not because they don't ant them, but because they are swamped with dealing with the daily workload, and too busy to take the time to talk to us about what we can help them with. Of course separating them from an email address or other means of contacting them is even harder. But we do make progress. Anyone on these boards that is going back for treatments or recall visits that would like to hand carry a few cards for these places with them, please contact [email protected] or call her at the OCF office (949) 273-4400, and she will see that you get some to take with you on your next visit. Your help would be greatly appreciated.

Brian, no problem. Happy to help.
I'm not sure how other centers do it but Sloan requires that everyone speaks to a therapist at their facility at least once.
Of course,as a therapist I was thrilled to hear that.
My husband probably won't want to talk to her.Have I mentioned he can be stubborn(and in his defense he hears therapy talk more than he wants I'm sure). And emotionally he is really hanging in there.
But I'm looking forward to meeting her.My thought was to talk to her about OCF.

You guys are probably way ahead of me on this but I would strongly recommend any center that has therapy services be on the top of your contact list.
We spend a lot of time finding resources like this for our patients.

ONLY TWO AND A HALF WEEKS TO GO!!!

I have a question to throw out here...were any of you having problems with swallowing PRIOR to your diagnosis? My father was diagnosed in May,started treatment 6/28/10 and had his PEG placed last week because his weight loss was already significant. He has had no surgery. (The Dr. feels it would do more damage than good and will use it as a last resource.) Dad had his 2nd dose of chemo this morning (Erbitux) and is starting his 2nd week of radiation as well. What I am wondering is will it be the radiation that makes it worse? Because the tumor has already made it bad enough!?!

Susan

My husband had trouble eating before his diagnosis due to a tumor around his jawbone. He had already started to lose weight before his surgery and treatment. Several of the chemos made him sick and he had trouble with sores in his mouth and throat as the treatments went on. His PEG was placed right after his surgery which was about 1 1/2 months prior to the start of treatment. The PEG was major in giving us some more time with him.