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.

Well said, Jenslp!

Ellen, let us know how it all goes.

I tried the honey treatment going into radiation, although I didn't have Manuka honey until very late. It may well have helped, but as I was warned, eventually it became quite horrid! Yech!!! So, please be understanding if/when your husband can't stand the stuff any longer. Makes my stomach turn just thinking of it, and it's been more than a year.

I do enjoy honey now, but on toast or something. Not straight off a spoon. Ugh.

Me too can't stand it but I'm only 7 weeks out so I still use it... Ack!

this is proly a dumb question, but what are you to do with the honey specifically, spread on sores?

Hey - actually you can use it topically - externally for sores, from radiation burn ( any kind actually) mouth sores ? Take a spoonful, put it in His mouth, let I melt - swish and swallow! If he already has mouth sores it'll burn! But I would suck it up and a few minutes later I actually felt better - then I began to heal. I still burned but not as badly! If full strength hurts too much, mix it with a little warm water and do the same - swish for about a minute - 3 depending on tolerance. It takes a few days to kick in, if there is already a problem with mouth, and sore throat! But for me it really worked. So I figure 3-4 minutes a day., was worth the pain! I used it 3-4 times daily. if there's a really bad sore - another poster on the forum would take tinfoil, place a drop on the foil and freeze, then he'd take the frozen drop and place it directly on the sore. That worked for him. Good luck! And re your previous post - your dad needs to take in his nutrition - liquid or solid it doesn't matter - you have to swallow both, as long as he is getting enough calories, protein, and fluids that's all the matters! take care

thanks cheryl! do you/anyone know if this stuff is pasteurized and where to get it? i would so not like to cause an infection as his mouth is already sore as hell. thanks so much!

Hi, I don't know this, but you should probably do some research before just sticking honey in there. When I was going through treatment in Canada there was a study on to see if the Manuka honey (the real stuff typically is coming from Australia and is quite expensive, and plain ol' honey might help, but isn't the same) actually helped, but they were very specifically applying it FROM THE VERY START OF TREATMENT, not after the fact. You might just make a sticky painful mess. Please get some knowledgeable advice (no, I'm not saying anything negative about anyone on here at all, just jumped on briefly and found this conversation).

cheers,

-Seth

stily good points. drs were quentionable on this as his sores are indeed raw, and i read the label, it is unpasteurized. also includes bee venom which he is allergic to, so not going to chance it.

Yikes! Yeah, I would avoid any possible allergic reaction! Wow, that would, um, bite?

Sorry, couldn't help it.

Have you been told about the salt water rinsing? I used a combination of salt and baking soda in warm water, and it really did help. I sure hope this is part of his routine? If not, again, don't just try it, but get the right advice.

yup, definitely using salt water (and unflavored meat tenderizer when i remind him) and that helps. his meds have definitely knocked out most of the pain. it takes a while to get the right balance of what to take/how often, but when you do, it's a great thing.

Meat tenderizer???? I have no idea what's in the stuff, but would NEVER have thought that would be a good thing. Interesting. And congratulations on finding that right balance of meds, which of course will probably keep changing over time.

I'll never know, but I may have ended up taking way more Fentanyl than I needed, and for me, coming down off the stuff was its whole own nasty experience. But I may be "sensitive" too. And now, ~18 months out, I'm doing very well, and in fact just had another consultation and nasal endoscopy (not as bad as it sounds) and they sent me home with a pat on the back "all's well in there". Yay.

-Seth

sweet, seth, love it! that's great news. nasal endos are a treat huh? like heraldo riviera going into al capone's vault.

meat tenderizer is basically salt with bromelain which is used for inflammation, although he prefers using salt.

i think it's neurontin that's tripping him out the most plus the dreaded chemo brain. we had a long talk with his dr and fav nurse today, as he feels out of it and needed to hear from someone else other than us why. would really like if they could script him something for anxiety but they aren't too keen on the idea as he is finally pain free and still very coherent with the exception of the times he hits the wall emotionally which isn't often enough--he finally let go today about how confused and scared he is. spilling a glass of water can flip him out easily, even though he gets why it happens. we agreed i'll call every few hours (AND he'll pick up the phone) when i'm not with til he gets over this period. that way he can snarl at me instead of my mom.

we watch the prostate patients in the waiting room, they breeze through treatment, my dad's sort of jealous (jealous of someone else's cancer, lol!) man this disease/treatment sucks!

Hi Caco,

Allow me to jump in with a warning! Years ago I got royally messed up on an "anxiety" scrip called Ativan, which you *will* hear discussed on here. Again, maybe I'm a freaky sensitive type, but if you look into it you'll find a whole camp of people who feel very strongly that the stuff is VERY inappropriately used. The thing is, IT REALLY WORKS, it was amazing, I was going through a rough time (by the way, very likely caused by some other meds I was on.....that were probably causing anxiety attacks) and I could pop the little white pill and in 30 minutes the anxiety would fly off of me like layers of an onion being stripped away by the wind, it really was amazing.

Unfortunately! For me and for many others, it is cumulative and highly addictive, meaning if you take it daily, you need more and more, and then to stop taking it you basically, in my opinion, have to suffer through all of the anxiety and agitation that it "saved" you from.....as if it just somehow stored it up in some corner, but once you stop taking it you still have to live through it all, but now combined with CRUSHING INSOMNIA!

Can you tell I had a really really really really bad time coming off the stuff? Before cancer, it was the worst experience of my life.

Perhaps not everyone will have this reaction. And perhaps if you NEVER took it on consecutive days. But I consider the stuff to be very dangerous.

So, be careful what you ask for. Maybe there's something else out there, but be careful.

I feel for your dad. I really do. Some people get through this with just the physical challenges, but I certainly went through some extreme emotional/mental challenges as well and wasn't myself for a time. Please don't hesitate if I can help in any way.

I'm way over in England now, but if you or your dad would like to talk, or maybe even Skype, that would be easy from my end.

ONWARD THROUGH THE FOG!

-Seth

thanks again seth. he is going to tough it out. i'm pretty sure his oxy alone is making him see flying monkies and i dont want to add to that. it is so hard to watch tho as you said. funny, i told him about your reactions just the other day, and that youre fine and living across the pond!

Ah yes, I remember the flying monkeys! Not as much fun as it sounds.

I'm glad you were able to share my experience (that I got through it and am doing quite well) with your dad. Hopefully that will be at least a small consolation for him.

I've just found out that a long-time family friend, a man in his 60s, has recently been diagnosed with almost exactly what I had and is heading into treatment. I'm starting to really consider that this is an epidemic?

to peg or not to peg interests me more and more. at my age/if this were me, that peg would have gone in, but my dad would not even consider it. he is now on his 3rd hospital stay, this time he does have pneumonia...confusing as he didn't have it, then he did, "sounds" like he did, may have had it and it cleared up...argh! so now he HAS IT and got discharged WITH IT and feels great. go figure.

but i digress, so many opinions re the peg from different drs during this journey. his CCC drs called me late friday to suggest he may require "alternative feeding methods" which my dad would not hear of. the skinny appears to be, whether you tube or not, you still can get pneumonia, and if you can swallow, then not having a tube is the better option. these are unscientific findings as they are our opinion, but he is still swallowing strong in his final week of treatment, we are trying to be as careful as possible keeping him from aspiration which is where the pneumonia problems come from. i've actually documented and graphed his blood counts and gagging episodes and there is indeed a pattern to his ER visits when his, 1) white count is down, 2)he's had issues with mucous and this tends to make him swallow "wrong", 3)gagging/breathing in large amounts of air and mucous, 4) temperature spikes are higher when his white count is lower. AGAIN, unscientific and your mileage may vary. finally met with a seasoned ER doctor who understood they were treating an in-treatment cancer vs. just a pneumonia patient, and that made the last ER episode and hospital stay much more efficient.

the last week of treatment we've been requesting/receiving more hydration sessions, as well as IV meds to dry mucous...only lasts a day or 2 but helps so much.

lastly, if you travel for treatment and use a local hospital for emergency situations, always bring your blood work reports, medication/dosing info and primary contacts. avoids much confusion, ours is now stored on my phone.

hope this is of value to someone reading this, as we're learning by doing!

Wow Caco, you're in the thick of things now! I was spared the mucus trouble (no idea why) and never lost the ability to swallow, exactly, but did have nausea and gagging trouble. As I think you know I managed to avoid the feeding tube, but I *did* lose 20 lbs quite dramatically (I charted it), and lived on Ensure. In my case, if I had lost too much weight, they would have insisted on the tube. Having pneumonia on top of everything, oh my.

seth, he's down 10 lbs. but the mask is still tight! 3 more days, and no fever tonight!! its like having a baby sleep through the night.

sounds like he's doing great regardless of the pneumonia!

we've cut the neurontin and oxy just a bit to help with the tremors and flying objects, detox on these starts in a few weeks, joy! the antibiotics for pneumonia are not gastro friendly and messy, rehydrating him is a full time job. but the pills! with post treatment time on his hands he's obsessed with the amount and frequency, so diversion tactics are key as i fight with a mirror-image child version of myself.

without all your posts/experiences we would be lost. most of the time i knew what to do or at the least, where to start. have rescheduled the timing of his pain meds so that they are taken well before his anitiobiotics to minimize upset. started using the yogurt culture supp and this has definately helped as he won't swallow regular yogurt. on day ata time

Hi Caco, we've been away for a few days to Cornwall (lovely, by the way). How are things now? I ask in part because my darkest days started right after my third and final chemo. Hoping the storm isn't raging!

-Seth

hey seth...slow but steady. lots of fatigue as expected. this is the first day we arent traveling!

Ellen I have a tube in and i'm starting to ween myself off. one thing if you get a pump and feed all nite you have no appetite. now my wife and nurse decided to make me eat more and slow way down on the jevity. one can a little after diner and one before bed. hopefuly i'll be hungry in the morning. just because you have the tube dosn't mean that you can't eat by mouth. just remember you have to still keep the tube clean. I use water. thanks Pat