We've been down this road before but here goes. I didn't get a PEG. I only had to be hospitalized twice in the ER for rehydration. I dropped over 60 lbs and slowed the healing process. I had to take huge doses of narcotics just to sip water and essentially "eat" the same stuff they put in the PEG tube. Of course either I couldn't taste anything anyway - or worse yet, it tasted like crap. Would I go PEGless again, I honestly can't say.

I am over three years post Tx now and everything is working fine.

I belong to the minority group here without a PEG during treatment despite difficulty in swallowing. I managed to go through the whole treatment without a feeding tube and lost about 16 lbs and regained all my lost weight in 6 months' time. Maybe it is a cultural difference, in Hong Kong, patients are seldom advised to have the tube before the treatment. In fact,only about 25% of head/neck cancer patients here are required to have a tube during treatment. I am glad that I didn't need one but I won't object to anyone opting for one if it is an easier path for getting nutrition.

Karen

I couldn't leave the hospital without a PEG so mine was out of necessity. Since then during my surgical recovery and now facing radiation, my PEG is my friend--in fact we've named it Margaret! I feel measurably stronger than I ever did after any of my other surgeries and these two (in one hospitalization) were by far the most invasive and radical. I feel more confident facing radiation with my nutrition not being the obstacle it could have been. I can't afford to lose weight so this is of great comfort to me that I have the means to hydrate, etc. without interfering with the site treatment and healing. I've had and am having some issues with site irritation and minor infections but dealing with those is nothing compared to the difficulties I'd face without the PEG.

I strongly agree with Brian (and others) that getting it put in before things get difficult, while your body and emotions are even more compromised, is very wise.

For what it's worth.

PEG, don't hesitate. If you discover that don't need it during treatment or post treatment it can be removed in office takes about 15seconds. Then you are left with a second navel.
Darrell

Hello Marie-Lynn
I just wanted to add my two cents worth...if your decision has not already been made?
Not only could my hubby not swallow, he also had such severe nausea that he could not use the PEG for nutrition and had to be fed thru his PORT. But, the PEG was invaluable for hydration purposes, we could not have managed without it.
I wish you all the best in the coming months.
Take Care
Marica

Just an update,

D spoke with his RO about not beeing confortable with the PEG and discussed the possibility to speak with another RO who has a different approach (just to say how the whole PRE thing troubles him) which in return the RO suggested one of his collegues. The words is out because yesterday the gastro-nurse called David and they had a wee chat and she told him that it was better that D takes another week to think about it and the postponed the insection of the PEG to next week. There is no hurry there. Radio starts in 2.5 weeks.

We all live things differently but David took the dx, the surgery and the radiotherapy with rationality and dealt with it with so much calm even the 9 teeth extraction (which were all healthy and he loves his teeth so much and takes so much good care of them) BUT the PEG is an issue that just devastates him. My wee opinion is that in all this the PEG is the only issue he has control over which to have or not to have and he wants to make the decision and not someone else. thanks again for all your advice.

m,

Unfortunately, this question comes after the fact, but if your husband's teeth were so healthy, why did they insist on removing them? I could understand the need for removal in advance if there were some existing problems that would be better dealt with before than after radiation -- but healthy teeth??

Cathy

Thanks Cathy,

Not sure what to tell you except that David had 3-4 fillings out of the 9 teeth out. Maybe I should have not said they were ALL healthy teeth and confuse you. The fillings were in between healthy teeth. Included in the 9 teeth out, 2 were healthy wisdom teeth. The RO and hospital dentist explained to us the risks of osteonecrosis and the extraction was a way to prevent that. I am not sure if they considered the fact that David took tetracycline when he was a kid and a consequence of that as an adult is that his teeth have been badly stained. Apparently the integrity of the teeth is ok but the "tetracycline generation" was short lived as it was pulled out of the market in the 70s and there is no data on tetracycline treatment and radiotherapy or should I say "I haven't found anything". Is he more at risk? perhaps. I think they didn't take the risk.

At first the RO had recommended all his front teeth be extracted as well because of the high radiation dosage he would use at the front. At the end he has decided on 52Gy and save the front teeth.

I must say that there was not a lot of time to digest all the info. I have done so much reading and I feel I'm constantly on the internet seeking for more data on the SCC of the base of tongue, its cause, treatmentetc...my head is about to explode.

You're right it is a bit late to think about the teeth issue BUT I will make sure that I learn from your input and make sure that I do all my homework b4 the next step. Thanks for your posting.

Marie-Lyne

Hi Marie-Lyne
As Gary stated, you 'opened a whole can of worms' when you opened this PEG topic. I think there are only 6 of us who did it without a PEG and I'm the only one that did not have a significant weight loss, only 4 lbs. I also stubborn and had XRT and no Chemo. It only takes about 1500 calories a day to maintain my weight. How many calories a day will he need to ingest to maintain his weight? Is he stubborn enough to swallow when everything tastes like cardboard or burns his tongue?

I do hope you have researched our previous posts on this topic because there is some very good info there. Mark has several good ideas for blender recipes and Danny has a super calorie shake.

Is your husband getting chemo? From what I have read on this board, that may effect his ability to eat or drink. He could try to make it the first two weeks without a peg and see how it goes and make his decision then, but if he losing weight, he needs to get the PEG. If he can make it to the near end, there is a nasal feeding tube that could be used for a few weeks (you don't want to be seen in public with this and certainly not playing baseball).

Just go to all the old posts and READ. While I doubt your husband will make it without a peg if he is having chemo, I'd print them off and let him make initial decision. Follow the GAILMAC thread on Barry's treatment. There is a lot of good info on coping with the problems in treatment.

Take care,
Eileen

One of the more barbaric things is the removal of your teeth. I went for a dental consult with an actual dental oncologist at a CCC and he wanted to pull ALL of my teeth. I have paid many bucks over the years for superior dental care and after researching the real risk or ORN, which is about 10% and it can happen to people WITH all of their teeth pulled I told them to go to hell.