Unfortunately my mother is learning the ramifications of not taking in enough fluids. She is one week post-radiation/chemo. She did not have a PEG tube inserted prior to start of treatment (big mistake). And she is lucky to get down 1 nutritional drink a day.

Yesterday I realized that she had to get some fluids in her so found out about home infusion. She started today and will receive for the next 2 days. Fortunately scheduled to see a doctor Monday so we'll have to address this.

Along these lines, we both are wondering if it's really necessary at this stage to have a PEG tube inserted. We are looking at other alternatives. One suggestion was TPN (total parenteral nutrition) done via a central line and pump. Has anyone had experience with this? Would appreciate comments on pros and cons vs. PEG tube.

Thanks in advance.

Cynthia

Cynthia....IF it were me, and I was in your Mom's situation, knowing what I know about the PEG tube, yes, I'd have one put now. I used mine faithfully for six months after chemo and RAD and then slowly as I was able to eat, the use of the PEG tube became a secondary way for me to get enough liquid and caloric intake to keep me out of the hospital. I kept my PEG tube in for a year. When I had it removed I felt confident that I could keep up with both my liquid and food intake.

I'm guessing to put the tube in would just require out patient surgery but I am not completely sure of that. I strongly encourage anyone going through chemo and RAD to use the PEG tube. It is easy to deal with, it causes little trouble, if any, and it is a huge benifit. The PEG tube assures you a decent caloric intake and less to worry about in terms of how you're gonna get food and liquid down a very painful and sore throat. I know that it kept me out of the hospital on more than one occasion since it was about the only way I could keep hydrated.

Sending both you and your Mom good thoughts and a speedy recovery. Sincerely, Donna

Cynthia, I just love to hear how your mom is doing. She is a trooper!

I am with Donna on the value of a PEG. I have mine one month post treatment end, and I use it every day for cans of ProBalance (a nutritionally balanced Nestle product supplied by the hospital, which smells so bad I could never, ever drink it, although I can drink anything else.) My problem with proper nutrition is not sore throat, but lack of chewing teeth. Back to the PEG, I really sweated this out, and there are still some embarrassing posts on this forum which show me up for a wuss. However, I was given an IV and when I woke up I had a PEG, which did not hurt. This was an outpatient procedure in the Gastroenterology Dept. Donna also clued me in to the dangers of dehydration, and did so with such force that I paid attention. When my throat was too sore to drink, I just put a large syringe barrel in the opening of the PEG, and held it under a faucet.

Whaever you decide will be an improvement. You and your mom have my most sincere wishes for her continued progress.

Joanna

I`m for the peg tube too......I`ve had mine for over a year now, and have managed to go from 118 lbs to 155 lbs......only via peg tube. I`m on jevity plus, and I use Gainers Fuel from Twin Labs, and anything else that I can blend in blender.....I managed a 6 week, twice daily dose of radiation without one, but since my last surgery, I`ve had a peg tube.....TPN has more hassles and risks of infection than does a peg tube........I came home from the hospital doing my own bolus feedings, and have never had a problem..........

Thanks for the replies guys and gals.

I guess my problem is 1) I am angry that the PEG tube wasn't done at the beginning of treatment. I knew this was coming - now that it's here I'm mad. 2)It seems incongruous to have this placed AFTER treatment. But that's my problem-more than one of you has had this done in the same time frame - I need to get my thinking "forward" not backward" and 3) My father died last year with a feeding tube in. I really think that my mother is associating the tube with death. Prior to her treatment, I told her what ALL of you had said about the tube and she was ready. Thanks to the doctors not wanting to be "foresighted" she is now suffering.

So, enough venting. I'm convinced that we go in Monday and set an appointment for placement of tube. She HAS to get nutrition and fluids and this is obviously the BEST way. I will talk to her over the weekend and try to alay her fears that she's NOT going to die with the tube!

Thanks, Cynthia

If it's any help to your mother... My mother who had a peg tube put in May 2001 had it removed just last month. She has been through quite a bit in the last year, (neck disection, tongue, jaw, floor or mouth and 8 weeks of radiation/chemo) but has managed to get to the point where she no longer wanted or required the tube. She is 79 and is home on her own preparing her own meals. She is still drinking 2 cans of ENSURE PLUS to keep the calories and weight up. Hope this helps. Good luck to you and your mother. The peg tube will enable her to concentrate on recovery and not worrying about getting enough nutrition.

Hi everyone,

After a 13 hour day yesterday, I am beat!

Mom came home with a PEG tube - it's amazing how quickly things can be done sometimes. However, mom is not a happy camper and is licking her wounds. And not speaking to me.

We saw the chemo onc. We found out that the director of the cancer facility is anti-tubes because he fears the loss of swallowing. Well, I've learned we have to pick our poison - without the tube, I firmly believe mom would have just deteriorated. So what good is swallowing if the patient can't even get out of bad?

I believe in the patient having the right to make their own decisions, but as a family member who knows my mom wasn't doing what she needs to, I felt this had to be done. Also found out from the doc that he didn't want to be the one to force the issue - but at least sided with me as to the need for it and even stated to mom that he thought she was in denial. (As an aside - out of my mother's presence - the doc said his impression is that he thought my mom didn't care whether she lived or died. I really don't believe that - that's why I'm trying to do what I can to help her. But it's not very good if your doctors have this impression. Haven't said anything to mom about this - not sure I will).

So now it's wait and see. I'm hoping that the strength and energy(?) she may get will help her to overcome this. Only time will tell.

Thanks for all the input. I know it was the right thing. I hope my mom eventually realizes that.

Cynthia

Cynthia.........I always look forward to your posts and hearing how "Mom" is doing. She really is a trooper!

I think once your Mom figures out just how much better she'll feel being fulling hydrated, she'll be back to talking with you. I know I never fully realized just how physically sick I could/would become if I didn't keep myself hydrated. I am convinced that PEG tube kept me out of the hospital on more a few occasions during my recovery period. Plus, having the tube in makes everything so much easier; no more worry about getting enough nourishment or liquid intake. Much of the time during recovery I probably would have passed on food anyway because I just didn't feel like eating. With the PEG I was able to get three square meals a day with little or no effort on my part! Hopefully, your Mom will realize the benefits before too long. It seems like it is always something, doesn't it?

Anyway, I'm rooting for you two and wishing your Mom a speedy recovery! Sincerely, Donna

Thanks Donna,

I appreciate your input and moral support.

Mom is now speaking to me and doing well with her tube.I have chosen to chalk up her surliness to being dehydrated and just feeling lousy. Her attitude is much better. It's hard to be the "heavy" but as long as I know I'm doing it to help (not harm) my mother - I'll keep plugging along.

Big thanks to all of you for your continued support and sharing of information. It is greatly appreciated!!

Cynthia