Hello Everyone,

As you all know by my previous posts, my mom has suffered pretty badly with 3 surgeries and 6 weeks of radiation. Unfortunately, my mother NEVER had a PEG tube, feeding tube or anything for that matter. She has gone from a size 16 or 18 to a size 2. As a result, I agree with Mark, that without it, infections can result. Mark, Do you think that is what my mom has, Thrush? What is that? My mom has a constant liquid infection dripping under her chin. It has been there for months and antibiotics arent helping. So the docs are saying that her tumor is likely back. They cant do a biopsy to her jaw bone because they say they will have to break her jaw, etc. and that there is no further treatment for her anyway. So Mark, I have to say that I wish my mom had a feeding tube, My mother and family would bite my head off when I would suggest it. She is eating an egg here and there like Sarah, but it is not cutting it. It isnt enough food...I think body weight is a good indicator and I wish her doctor had looked into that. We meet with him again on Monday and I am going to bring it up. THis is ridiculous. My mom is 9 months post radiation and not any better, in fact worse, and I do blame the lack of nutrition. Sarah's daughter, hang in there and I do think a feeding tube is a good idea after watching my mom of 65 years old go through what she is going through. Get her help now.
Good luck to you and everyone. I am praying for you all
Stephany

Stephany, I am very surprised that the doctor taking care of your mother never thought of getting her a feeding tube. I think it is a general rule that if a patient loses about 10% of his weight, there is a need of a feeding tube to maintain nutrition. Even though I am happy that I went through the battle without a feeding tube, my standpoint is rather open since I am not biased against any choice. When I lost over 10 lbs, my oncologist already suggested inserting a feeding tube. I hated the idea and promised him that I would eat enough food and water. The pain was enormous but I managed to overcome it and the doctor didn't insist on placing a tube any more after my weight has stopped decreasing. Mark, you and I belong to the minority group when talking about the PEG issue. We are also the lucky ones, I think, because we managed to eat by a normal means throughout the treatment.Everyone's case is so different and I am here to share my experience rather than to convince others of what treatment is the best. I always believe that the doctors should know best and if they are not doing their job, get another one who can!

Karen

Not that I really have anything to add to this discussion other than I lost 35% (60lbs.) of my body weight (170 lbs.) and didn't have a peg. My RO was thouroughly pissed at me for refusing to get one. In 2 years I have gained about half of that back and my weight is pretty stable now.

My opinion is identical to Karen's about her standpoint. Surviving without a PEG is a tough road to hoe. Mark, Karen and I are definitely a PEGless minority here. I was fortunate that I could even make the choice. In some facilities they won't even give you the option - get a PEG or no treatment. I am sure that this is based on their experience that most H&N patients end up malnourished without it so it's just protocol.

I think we need to have a PEG debate at the next OCF reunion! Just kidding, but maybe a separate topic for it since it is always such an emotion rousing topic (for some) and that might make archive searches easier since everything in this thread has already been said several times over the past couple of years.

OK Guys
What I don't understand is the difference between a PEG in the USA and the UK, mine was a single narrow pipe with clip to be a one-way valve, about 6 inches long and unless it got it my waistband, no pain. Am I missing something here? I lost 21lb even with a peg so for me no choice I understand that for radiation it's a different issue than surgery, SO... RIGHT NEXT OCF MEETING... Badges For or against..
Everyone is different, no 2 surgeries or treatments are the same, we are supposed to be helping each other here!!!!
Ok, am off my high horse, the USA beat the British at the Boston Tea Party. LOL
If anyone takes me serious...TOUGH
Sunshine love and hugs
Helen

Gary,
Next time don't forget to include me in the happy PEGless minority. No one is suggesting anyone follow in our footsteps. Everyone is different. Every surgery is different even if it is the same surgery. Nutrition is important to fighting this battle. Do it with whatever vehicle suits your mind and body best.

Take care,
Eileen

Sorry I left you out Eileen. I like Helen's idea of the badges for the next OCF reunion ;-)

Just for the record, I was also PEGless (in fact, I don't believe the subject ever came up back then). I just knew I had certain calorie goals for each day and I was determined to prove to my radiation oncologist that I could get it down, no matter what. I ended up losing just over 10% of my starting weight -- but I was 39 and otherwise healthy up to that point, so I suspect that made a difference.

Cathy

Karen,

I am suprised as well by the fact that her doctor did not suggest a feeding tube. I have heard that feeding tubes can lead to infection, and my mom has been battling a nasty infection for several months now that is in her mouth...It is leaking fluid continuously from her chin and now inside her mouth. Her lip is huge and swollen. I feel so bad for her. I am happy to hear though that so many of you did not need feeding tubes, even with the weight loss. That gives me a little hope.
God Bless,
Stephany

Karen,

I forgot to say that we are all meeting with the doctor tomorrow to ask questions, and that will be my first question. Thanks again
God Bless,
Stephany

Stephany, your Mom and your family are in my thoughts and prayers. Love, Carol

p.s. I too am in the PEGless minority and I lost almost 40 lbs total during my treatment.