Hi,
Apparently my husband has some enlarged blood vessels in the area around where the PEG was to be inserted. Luckily they found it before they went in so now he is being told that we might have to have a more advanced procedure where they can look while they are guiding it in instead of just going through the esophagus. So he asked his doc if he really needs to have it. Doc said that he would just have to keep eating but "it is not pretty" because he would lose a great deal of weight. Anyone gone through this without a PEG? If so any advice? We are going to talk to the specialist about it this week. Just wondering.

EllenB

Hi Ellen:

I had a PEG tube, but they went in through my stomach, so not sure what kind you're referring. There are quite a few members who did go through their entire procedures without any feeding tube, and I'm sure you'll be hearing from them when they read your post. Good luck with whatever you two decide.

julieann

Yes. I had a peg in but couldn't use it. I tried it 3 times and threw up at the half way point of each feed. So I sucked it up and drank/ate by mouth. I bought high calorie ensure and boost downed 4 a day plus a few bottles of water - I was okay eating up to week 4 when I lost all taste... Manuka honey helped with the pain so since I had so few mouth sores drinking my ensure was easy up to week 6 - I had 33 rad treatments - things got painful at treatment 30 not too bad but bad enough so I would take a pain med chug a mouthful of magic mouthwash and then down my ensure in two mouthfuls. It worked for two weeks post rads and then slowly I got back to eating - that's the best part my peg was removed 2.5 weeks post rads because I wasn't using it, and I've maintained my swallowing reflex. In total I lost 20 lbs. At this point sweet and salty are slowly coming back, but natural foods, fresh fruits and veggies, potatoes, soy products are all okay. Processed foods, not so much... I am 7 weeks out of radiation this wednesday. It can be done... I had the image guided placement of my peg too ...

I should have just said no.. But I was worried because I know it can be hard... I have to say I've been very blessed. If your husband is at the low end of his weight then a peg is a good idea. If he can afford to lose 20- 40 or so lbs then he can talk to his dietician to help him figure out how much nutrition he needs - from this point on they can determine how many ensure, boost, or whatever liquid nutrition he will need to maintain his weight and heal (protein is important I used to add a scoop of protein powder to at least one ensure (and half a banana etc..)) except for the two worst weeks. So it can be done.

Good luck... There are a few here who have done without the peg. Some hospitals in other countries actually don't offer Pegs, it's to help Maintain swallowing. So it really depends on the hospital, dr. And patient.

Take care.

Ellen

Short answer: Yes , it can be done. I made it successfully thru 40 IMRT radiation sessions and 8 Erbitux chemotherapies without a PEG or anytime of feeding or nasal tube. I never got dehyrdated, never had to get admitted for IV, and managed to swallow enough Ensure Plus and Carnation VHC to maintain my energy and health. I did lose weight (177 down to 140) but ended up at what I used to weigh back in college , which was still 14 pounds heavier than my marathon running days (126) and I am 5' 11". Not that I recommend radiation and chemo as a diet therapy but I did lose all my stomach fat and bulges leaving me slim and trim.
Doctors opinions on PEGs are divided: some encourage and even require PEGs, mine and others avoid them until absolutely necessary. If I had it to do over again, I still would choose to swallow on my own with my mouth and throat but I would have bought a Vitamix and supplemented the drinks
Of course that's all moot now after the cancer came back and the salvage surgery.
If you husband does need a feeding tube, the "more advanced" procedure is likely just using a fluoroscope instead of an endoscope. The doctors just cut open the stomach and insert the tube. It's not a PEG technically unless they push it down your throat with an endoscope (the E in PEG). IMO there isn't much difference in the procedures except for the costs and since it's "surgery", they can do it anytime.
You can order the carnation VHC thru the OCF amazon link, it has more calories than Ensure Plus in the same can. I hated the taste but loved less cans.
Keep us posted on developments. These are trying times for you and few people who have not undergone it can understand how hard this is for you
Charm

Ellen, Charm has been thru it both ways so he is VERY experienced with this situation. It can be done and weight loss does not have to be significant. Ive seen several members get thru this eating all the way thru and maintaining their weight, losing less than 20 pounds. Even if your husband is overweight, now is not the time to lose anything. I lost way too much weight and that was with having the tube. I had a difficult time and was hospitalized a few times for dehydration and malnutrition. That was just me, I didnt have a caregiver to help and encourage me. This is why I say your husband is very fortunate to have you on top of everything for him.

As Charm mentioned there is always the nasal tube. That is a short term fix for this. So if your husband is struggling it can easily be placed and used right away.

Pay very close attention to your husbands nutrition. The Carnation VHC is a great way to get the daily calories easier. Anytime you order from Amazon, please use the link on the forum to help OCF with a small kickback. Every little bit helps to keep the forum running.

At this point, get your husband into the habit of taking in a minimum of 48oz water and 2500 calories every single day. If one day he is short, it isnt possible to make it up the next day. Once that cycles starts, its impossible to turn it around and catch back up. An easy way I learned from another member was to get out the drinks he needs to drink for the day and when they are gone, he has met his requirement. Here is a list of easy to eat foods that will help. I would drink a couple chocolate peanut butter milk shakes a day which were very high in calories.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Ellen

I almost forgot. Perhaps your husband will be heartened by the fact that Michael Douglas, the famous actor, with access to the best treatment and doctors that money can buy also went through his entire radiation and chemotherapy without a PEG tube or feeding tube.
Christine's advice is spot on. Have your husband eat, eat, eat now. Just pack those calories on. Everybody in my radiation cohort made it thru without a PEG, just as our Radiologist said we would, and just as almost all his patients do.
As Christine noted, I've seen the PEG from both sides now. I agree with your husband's doctor that doing it without a PEG is not pretty, and it is much easier to keep up nutrition and calories with a PEG, but if he does get a PEG, he must continue to force himself to swallow. IMO, the plus side of not using a PEG is always learning how to keep swallowing so when it's over, I was back to eating regularly fast.
Perhaps those enlarged blood vessels are a blessing in disguise, you never know
But there is no wrong answer here, PEG or no PEG, both are right if that's what he needs or wants.
Charm

My son did not have the PEG and it was really rough going for a while. Hearing about the success some have had here recently with the Manuka Honey in treating the mouth sores makes me wish we had known about it while he was going through treatment. At one point, when my son wouldn't or couldn't eat and even drinking water was painful, I had to threaten to call my daughter (a police officer with a gun) over to have her help me get him into the car and to the hospital to have a PEG inserted so he could get some nutrition. Well, that did it and somehow he found the strength to get through it. He lost about 25 pounds but gained it all back and doing great, now. I have to wholeheartedly agree with Charm where he says: "PEG or no PEG, both are right if that's what he needs or wants."

Hi, I'm 13 months post treatment, the usual rads plus three sessions with Cisplatin in Canada. I really really did NOT want the feeding tube, and managed to get through without it, losing 20 lbs (I had at least ten to lose), but it was very difficult. By that I don't mean to say that I think it would have been easier with the tube, I don't know, but the whole experience was difficult.

I agree strongly with everything that's been said here. My RO was flexible on the feeding tube, but other cancer centres install it as routine, even though some never get used.

But! I did certainly struggle to eat, ultimately living on vanilla ensure plus as ultimately I could not stomach anything else. I also had several bouts of dehydration, and several sort of stop-gap IV nutrition sessions (I got really really tired of having holes in my arms all the time, and they can only do that for so long).

I had tremendous support, and this was ABSOLUTELY KEY for me for getting through this alive.

In my case I was a mess for most of a year, but now I can say I'm doing very well.

You are not alone. There are fantastic people on this site. Do come back often with questions.

Good luck!

A person will need a feeding tube when:

1) they CAN'T eat or drink
2) they CAN eat and drink but not effectively enough that it doesn't leak into the lungs and cause pneumonia
3) they CAN'T eat or drink enough to meet the body's need for nutrition/hydration

Our treatment protocols put us at very high risk of not being able to eat or drink at all, safely or enough.
There's no crystal ball - no MD can tell for certain who will make it without a feeding tube and who won't - whose swallow will "make it" through the duration and whose will not. For this reason, many MD's, understandably, take a conservative route and recommend a G-tube to be placed before potentially life threatening complications arise at the weakest point of a Patient's life.

The decision to opt for a feeding tube is a difficult one - the main reason to do it beforehand is to be better prepared for potential complications.

The swallow's going to make it or it isn't - it's not a matter of will power or mind over matter. It's a sophisticated and, under normal circumstances, very protected mechanism. Treatment is going to change that - we just never know to what degree.

Thanks all. He has decided to get the tube and it will be inserted directly into his stomach directly due to the blood vessels. I am going to do my best to keep him swallowing. Christine, thank you for the food list. I have already gotten some of the foods but there are wonderful ideas here. I hope that shakes and other high calorie smoothies will keep him going for as long as possible. I am also going to get Manuka honey. You are all a great help. Off to see my counselor tomorrow that should help me too.