While many people mention the benefits of using PEG tube during treatment here, I am wondering if those who inserted it at the same time of treatment lost any weight at all or suffered from stomach pain and discomfort. I won't argue over the choice of using one but I tend to agree with Eileen that it is wise to have one when the need is absolute. I went through 48 rounds of radiation and 4 chemo without using a PEG tube. Of course there was time when swallowing even the milk posed great pain but it lasted about a week or so and eating became easier gradually and slowly.My experience may not apply to others but I still emphasize serious consideration before any choice is made.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Like I said before, some have been able to tough it out through the physical problems associated with radiation in particular, and also surgical wounds and chemo. As most of the regular readers here know, I am diametrically opposed to getting any drug or treatment that is not completely necessary. Due to the benign nature of PEG tubes, it is one of the few things that I would consider getting prophylacticly. Because of the individual nature of patients, the treatments types they receive, the amount of those treatments, the location of those treatments, the duration of those treatments, they will have varying degrees of associated problems such as mucocitis, sloughing tissue which leave raw open wounds behind, xerostomia, etc. They will all have different responses the exact same treatment in the same location, though to a lesser degree. They will have different abilities to tolerate pain, and different psychological perspectives on what having a PEG tube placed means to them. So suffice it to say that the standard of "need" is obviously malnutrition or weight loss. If this is happening, the PEG is no longer an arbitrary issue. You need the nutrition. So the next logical answer would seem to be that getting one is predicated on a patients degree of physical discomfort and ability to get proper nutrition without a PEG system, with measurable weight loss of 10% of the pre-treatment weight being the maximum allowable, and this being the visual and finite definition of weather or not proper nutrition is being obtained, rather than a patients tolerance to pain and willingness to tough it out till the end. You don

JC and Robin .... About the PEG tube -- It is such a minor issue compared to everything else you will be going through that it really isn't worth the worry. I didn't have a choice about the PEG tube, my ENT just said it was going in and that was it, so by that time I had to trust that getting the PEG was the best thing for me.

The thing about the PEG is that you don't have to use it until it is necessary. You can eat orally for as long as you like, and even thru the whole treatment process if that is what you choose; however, the PEG just makes eating and drinking so much easier. With the PEG you no longer have to worry about getting enough nourishment to promote the healing process. You don't have to struggle with food and liquid and the pain involved in swallowing, nor do you have to worry if you're getting enough calories. Dehydration is a huge concern while going thru treatment and with the PEG getting enough liquid is so much easier. So much. The PEG is easily hidden beneath clothing so no one will ever know it is there and it does not stink. (my biggest concern) I cannot think of one reason not to have a PEG tube inserted. Not one. The surgery to put it in is minimal, and while there is some pain involved it too is minimal. I was sore for one day, I think. The PEG is easy to take care of and rarely needs to be adjusted or removed or replaced for any reason.

At about four weeks into treatment you won't be able to taste food anyway and it does become difficult to even want to eat. I know that had I not had the PEG eating would have become a major issue for me. I didn't want to eat, or even try to eat for a long period of time while I was going thru treatment, yet I knew that if I didn't have some sort of nourishment the healing process would take so much longer. I also had a difficult time keeping myself hydrated enough to keep me out of the hospital and that was with the PEG tube.

OK, I'm getting carried away here .... but as you can see, I am clearly an advocate of the PEG. Having a PEG tube inserted just simplifies everything making it easier for you to get on with the process of healing instead of worrying about how you're going to get enough caloric or liquid intake. Hang tight JC and Robin, we'll be here rooting for a speedy treatment and recovery. Keep us posted. Sincerely Donna

Eating during/after radiation seems like a tuff go, but I'm wondering if there are foods available military Meals Ready to Eat that are packaged like astronaut foods in squeeze tubes. These are top quality nutritional meals.

MRE's are currently undergoing a revamp by the government since so many of what few choices they have are disliked by our troops. These guys should have been eating the "C" rations that I ate in Vietnam, the dates on the cans were Korea era!!! That was one dead chicken in my dinner, older than I was at the time. The problems with MRE's will still be related to how wet they are, (only sort of) and how well a patient can swallow with all the mucous build up, xerostomia, mouth sores, etc. etc. Make your own nutritional blender drinks with protein powders, fresh veggies and fruit, and of course ice cream for tons of calories. They go down easy and you can pack on nutrition and calories at the same time...a some point in this treatment process most people come to the determination that without taste, it gets down to ease of consumption and nutrition. Everything else is meaningless.

Robin & JC,
Back to this PEG tube thing. I do not consider having a hole punched in my stomach something of 'a benign nature' as Brian calls it. My radiologist never even suggested I have one at the outset or later.

Are you over weight or underweight? I'm certainly not suggesting losing more than 10% of your weight. I only suggesting that you take a wait and see position. If you can afford to drop some weight, you just got the perfect opportunity.

Let's look at some facts. I went into this at 5'5" and 122 lbs. I could stand to lose 5 lbs and even 10. I only lost 4. I had to consume at least 3 and preferably 4 or 5 cans of Ensure Plus a day to maintain my weight. The only other thing I could drink was ice cold bottled water and then I had to be careful of the brand. This routine lasted from about day 10 for about 5 weeks. I may have been able to eat some other things like ice cream but didn't because of the mucositis. I did not develop any sores in my mouth like Brian did. Had they given me my tongue protector early on, I probably could have eaten soft foods for while longer. My problem was everything burned my tongue.

Since you are a man and presumably much larger than I, you will have to consume more cans of these nutritional milkshakes than I.

Another thing to consider is that both Brian and I had our radiation 5+ years ago and presumably some of the newer drugs for saliva protection will help you not develop the problems we experienced as severely although mucositis still seems to be a major side effect. I did take Salagen for saliva during treatment.

How long are you going to need this PEG tube? 2 weeks? 4 weeks? It is not the only option. They can run a line through your nose down your throat that can be used to feed you. Not pretty but it works. This was actually the method that my radiologist would have used on me if I had developed problems with drinking my Ensure. I actually had one of these 4 years later for 9 days after I had a total larnygectomy and to me is certainly preferable to having a hole put in my stomach.

Find out how many grams of protein you have to consume a day to maintain your weight. Buy yourself a sixpack or more of Ensure Plus (make certain it is PLUS -360 calories and 13gm protein per 8 oz. can, I don't recommned strawberry) and live on it, ice cream and water for day. Do you think you will be motivated enough to pour this down yourself when it may be difficult to get down? While food tasted awful, I found the Ensure did maintain it's flavor. This can be good or bad depending on your outlook. Your radiology dept should also have other high protein shakes you can make or you can make your own.

Good luck and do whatever it right for you

Eileen, I lost 45 lbs. WITH the PEG, so it was necessary. Had I not gone on a crash eating program prior to treatment and gained 40 lbs, I would have been in big trouble. Getting it was no problem, no pain, the care and feeding was no problem, and when I needed strong pain relief FAST, that was the best route. Now I have a slight indentation where it was. If I was going to wear a bikini it would not bother me, but I am past the age where that is appropriate beach attire anyway (grin). Not disagreeing with you, just pointing out a positive experience with no downsides.
Joanna

Re my benign comment... I think in terms of getting radiation, neck dissections, chemotherapy, partial glossectomies, etc., having a hole smaller than the diameter of a pencil put though into your stomach, in a procedure that (for me) took less than 10 minutes, is benign.

Hi all - okay, JC is 5'7" and about 170 lbs (he lost 8 lbs after the surgery) so he really cant afford to lose any of his weight. he has already tried the ensure (which he didnt care for at all) and something called ProSure (made by the same people) which he didnt like either - both left him with an upset stomach - he said they were too rich for him - (he is not a big "sweet" fan - meat and potatoes all the way). we still have the "boost" to try tomorrow. and since he isnt a big fan of water either we are truly leaning toward the PEG (for my sanity as well as his) and to keep him hydrated. he has a very high tolerance for pain, so that isnt an issue right now, as is yet another scar on his body. and i know how he did with his eating after his tonsil was removed....turned his nose up to just about everything i could think of. i think we would rather have it in place and ready to go just in case we hit a rough spot in the road with the eating thing. i just want him to get the nutrition he needs when he needs it, and if this is what it takes, well, then it is something we must do.......and if we dont have to use it, thats great too, but it will be there just in case (guess its kinda like having a spare tire...just in case) thanks for all your wonderful imput. He goes in on the 31st to get the mask made and on the 1st of april for a CT scan....and we are on our way.....

P.S. JC has a beard - has had it for 32 years, he has to shave it of course and that isnt a problem. i guess my question is for the men out there - after radiation, how will his beard grow back or will it? he is concerned about it as it has been apart of him for half of his life and i must admit, it is a beautiful long white beard.