This is probably the 100th time I have typed these words since we joined OCF. The Peg tube is the reason my husband is alive today. While I admire Gary's grit, determination, and courage, I am here to tell you that John is as tough as they come. Since we have been married, I have seen him smash his thumb open with a framing hammer, shoot a nail through his palm, cut a hugh slash in his hand with a utility knife and never left the job site on any one of those occasions. But the combined surgery and radiation shut him down as far as being able to get enough nourishment. I am at a loss as to why having a peg is such an "issue" on this board. Amy

Get a PEG! I had the same treatment as you and 10 months post treatment I am still getting most of my nutrition this way. I too would have died without it.

I have a hard time understanding why getting a PEG is such an issue too. I'm another person that would nevere have made it through treatment, or after treatment, without it. Yeah, it's not pleassant to get one and eating real food, when you can, beats PEG feeding any day, but for most people (at least those getting cehmo and rad) it becomes a necessity at some point in treatment.

Hi Max
Soft Scrambled eggs with cheese!!! Not much flavor but a perfect protein. The one time in your life you can eat all the eggs you want. Like the others, the PEG seems scary at first, but boy is it worth it. If Erik didnt have one he would be in the hospital all the time, he already is having a hard time with dehydration. Try to remember that the peg is temporary, kinda long term, but certainly temporary, as is this whole ordeal. Erik is in the end of his treatments now. The nutritionist and docs all say that it could be a couple of months before he doesnt need it. How is your weight going into this whole thing? If you are on the thin side, really think about the peg. This forum has been such a blessing to me and many others, I hope you will keep coming here asking questions (there are no dumb questions here) and letting all of us help you, walk you through it.
all my love
Jennie

It sounds to me like the PEG is inevitable. I guessI will wait until hte doctor says I need it to worry about it.

Sue,
I am eight miles west of Kokomo, we have a small farm here.

My taste buds are seeming to deaden. The bad side of that it every thing tatses like cardboard. The good side is that I no longer have that horrible "rotting" taste in my mouth.

Today was a fairly good day. I even got some mowing done.

Thanks to all of you, I will continue to check in here.

Yo Max...hang in there.

Looks like you and I are pretty much on same schedule of where we are on the treatment front. I just had my 24th rad treatment yesterday. You've probably seen my 'log' on this topic page I'm doing thru all this. I really believe what makes THIS site special the stuff you can LEARN here that you never here from the Drs, etc. espceially of what it's really like to go thru this BY SOMEONE WHO ACTUALLY HAS GONE THRU IT. I'm sure almost ALL the Doctors and ALL the nurses have never had to experience this 1st hand.

I also do NOT have a peg basically because none of the Drs have pushed for it .. yet. I'm not having any of the major swallowing issues some seem to have at this point but it is so TRUE that food taste SO UNBELIEVABLY BAD that you just don't want to eat, period. Oh, I can can get down the 4 cans or so of Boost or Ensure, but even that is a chore 'taste wise'. I could handle it ten times better if it had NO taste. I'm still open on getting PEG thing if/when needed. If can do without even the better.

One thing that came up last week because my blood pressure got so low and hydration was becoming a problem...they came pretty darn close to checking me in to hospital to control it. Instead they cam up with the 'home care' people they have me set with that are supplying the 5fu pump and juice to also set me up with some bags of hyration to keep myself well hydrated. That has worked out GREAT so far. Easy to hook up (if you have a port) and easy to deal with. I'm also switching over to SCANDISHAKES which are double calories than than Boost or Ensure, etc. To me that means I only have to endure HALF as many. I found a decenet price site on Ebay that I can get 'em down to a cost factor of about $2.50-$3.00 a shake (includes price of shipping, milk, ice cream, etc.) And, I think they tast a bit better and go down easier. You also 'jack' 'em up with few more calories and stuff with ice cream, maybe some protein whey powder, some Flaxseed Oil (good source of fiber) and whatever else yoy may think of to throw in there and blend yourself a 'carcinoma shake'. I've heard Carnation Instant Breakfast are good also.

Only pain problems I'm having a bit is the burning lips thing which I think is being caused by the chemo (5fu) more than the rads. The lips can be calmed down very quckly (but not long lasting) with some decent stuff the Dr prescribed like Lidocaine liquid stuff. Only problem is I haven't been able to find anything yet that can keep the area 'moist' which equates to pain free for longer periods of time that would alow you to sleep longer than a 2- 3 hrs at a crack. I'm still experimenting there. So far Aquaphor(most likely can get free samples at rad center...ASK!!!) and Carmex (in the tube) are leading the pack for moisture retention.

So, Max...It sounds like we may even have more challenging days ahead the more we get into this. We can do it. And..to repeat....You definetly NOT ALONE thru this.

Gary O

Starting next week, they will increase my treatments to twice per day. Is this normal? What will the impact be on me? Will I get a lot sorer?

Max
You didn't say where you are being treated? Are you at a CCC? I believe it sounds like you are having IMRT treatments. I can't really be of much help as my father is having XRT radiation. He is only taking one treatment a day. I think however I have read about people who take IMRT having two treatments a day. Gary O. might be better to answer. I hope you are doing well. My father also has no tube and says everything taste awful. He has managed so far but even water is a struggle.

Max,
some of the newer radiation treatment protocols specify twice daily treatments. They will never exceed 2.0 cGy and the soreness will get worse but not because of the twice daily treatment. Let them know your pain levels so they can medicate you appropriately.

Max - Your twice daily radio treatment is familiar. My entire radio regime was twice daily. It is, if I remember correctly, a scheme that keeps the tumor site from recovering from each treatment. This school of thought comes from those theories that say the tumor "hardens" or "toughens" itself to radiation as treatment goes along. The twice daily routine is partially designed to eliminate that adjustment or hardening interval - keeping the tumor site vulnerable to all of the radiation.

Radiation treatment is cumulative - the effect on you gets bigger as time passes. Your symptoms may increase clear through the end of the rad schedule. My symptoms were the worst about 3 weeks after the final session. HOWEVER, they do get better from there - lots better. Hang in there.

Please don't wait until you suddenly realize you cannot swallow enough of anything to maintain your hydration or strength. Don't expect your doc to know when (or if) that will happen to you. You must be proactive with the docs. Weight loss and or dehydration make the symptoms MUCH worse. Don't go there, and don't risk going there. You are doing so well right now - good job. Our slogan in the treatment room was "Double your fluids, halve your symptoms." Be strong. Tom