Hi everyone! So I'm in the middle, well start really, of treatment. I do chemo and radiation 5 days a week. I have 32 treatments and I knocked out 8 so far so only 24 left!! but anyways, I'm eating and talking great but the docs keep stressing that I won't be able to make it without a G tube. Honestly, I don't want another scar, another surgery, and I hated the feeding tube when I had my nose one in the hospital after my glossectomy. Its bad enough I have a giant scar on my forearm, leg, neck, and a 2/3 of a weird color tongue haha. but i don't want a scar on my stomach if I can eat fine. Did you guys have to end up getting one? And when did eating start getting hard for you?

Hi Shelby,

I'm doing induction TPF chemo now, cycle 2, plan to be where you are pretty soon and personally feel strongly to PEG up earlier than later.

The main reason is most end up PEGging up soon or later anyway, although some do make it through maintaining weight via mouth eat and drink.

There are two MAJOR reasons you will end up in the hospital - dehydration and lack of nutrition. A PEG, used properly, will effectively allow proper hydration and nutrition. With out the PEG, good chance you will likely suffer one or the other, so why take the risk.

Even if you defer the PEG until you experience symptoms of weight loss or dehydration, your body is now in a weakened state. Why would anyone allow themselves to get there when all they needed to do was have a PEG and at the earliest symptoms, just take some water and liquid food in the PEG.

That said, there is major reluctance to doing the right thing, so everyone just needs to rationalize their own decision on this procedure. don

Your doctors may have a reason for saying that, usually from too much weight loss, and as Don said, not enough nutrition, and hydration or concern of that. Radiation also continues to work for 6 weeks after treatment, and the last two weeks are the worst, so treatments effects just doesn't stop on the last day.

I went into induction chemo without a peg, but was soon hospitalized from a chemo reaction, so one was put in at one point, which I vaguely remember, and not the next day..but after a month. I could not eat, drink, not even have ice by mouth, just an IV. It's done by endoscope, and not cut open. Anyway, when I had it taken out, the scar was smaller than a dime. When I had treatment the 2nd time, I had another put in, and still lost 30 lbs. For my situation, it was best. I did not have too much problems eating afterwards, and soon ate everything.

Good luck with your decidion, and the rest of your treatments.

A feeding tube is a tool to help you get thru this. It is not a big deal at all. Ive always thought that it is so much better to have it than to need it and have to wait a few days for emergency surgery. I dont mean to be negative or scare you at all but Ive gone thru this. When you are dehydrated and malnourished you feel like you are dying. I was so sick and felt so bad that I really thought I was starting to die!

If you are adamant about not having a feeding tube then it is your choice. When I first got sick, at first I said no to a feeding tube and the port. I didnt even have a clear idea what they were or what they entailed but I still said no. The real reason behind my 'no' was that I felt everything was out of my control and I finally had a voice with my own choice and I wanted to use it.

If you do decide to wait on getting a feeding tube, you must not lose weight or your docs will make you get one. That means taking in every single day a minimum of 2500 calories and 48 oz of water. Sounds easy right now but as your swallowing becomes increasingly painful and things dont taste how they should it can be pretty difficult. If you are small and have a fast metabolism you may need even more, like 3500 calories daily. Some can get thru without the tube while others cant. By delaying, you could end up with a nasal tube again. But remember its a temporary measure.

If you cant tell, Im PRO peg while some other members are anti peg. There have been some very heated discussions on the forum about each side insisting their way was the right way. The peg wars are a thing of the past, no arguments are necessary on this subject anymore. It really is a very personal choice to make. Ive tried to give you a balance of both the pros and cons of not getting one at this time. Whichever path you choose, we will support you.

Hi Shelby,

Over the years this question has been asked many times on the forum and there have been many discussions about the need to have a feeding tube (i.e., PEG). Ironically my doctors never even suggested one to me and I didn't even know what one was until I joined the OCF forum after my RT was completed.

In my case the radiation was angled to hit the right side of my mouth, tongue and some of my neck, so I was able to "eat" and drink throughout my treatment. It was painful and took a long time to eat (liquid diet for the most part). I did loose weight but it was gradual and not significant.

The worst part is yet to come -- usually the final 1-2 weeks of RT and then a month or so afterwards. You don't want to get in the position of being dehydrated and not getting enough nutrition. Proper nutrition will help you heal. As others have said it is only temporary.

Talk with your doctors and be aware of your weight and food and water intake. If you need it, get it!

You've been through a lot already, so I hope that the radiation isn't too bad for you.

Shelby

I was one of the most ardent warriors in the PEG wars denouncing everyone who used a PEG were just not tough alpha males like myself. I pointed out the Michael Douglas never used a PEG. That was just an overreaction to the Pegophile bias on the forum. As Christine noted, we toned it down.

The fact is the doctors are divided on this. My RO and MO both said that their patients did fine without a PEG. I did and so did the cohort of about 30 of us getting radiation. None of us were dehyrdated or needed IVs. Meanwhile, Plenty of the pegsters ended up getting IVs and dehyrdation anyway (the formula made them vomit and nauseous) and lost just as much weight. When I posted links to statements from doctors at conventions and interviews about their observations on PEG dependency and swallowing complications, everyone went wild.
I used to get upset about it until I realized that posters were just echoing their doctor's opinions. Especially in Europe and Scandnavian countries, the medical opinion is that if you do not have a PEG, you continue to constantly adjust your swallowing so once TX is done, you bounce back much faster in regaining full swallowing ability.
That's why shortly after TX, I was eating real food and most Pegsters keep using their tube for three months or more.
They have to relearn how to swallow enough to get nutrition.
At the end, I did switch to drinking Ensure Plus, all liquid, but that's standard.
That was my biggest challenge when I first joined OCF, whether to stay in a forum that everyone used charged words like: the right thing, etc as though it was wrong not to get a PEG. But I'm a fighter and Once I stood up for the equally valid and opposing medical view (I am at a CCC) that it is just as good if not better to go without a PEG, then other OCF posters started posting that they do had also done it without a PEG. Prior to that, they were apologetic since the forum was scathing in denouncing you as irresponsible, silly, risking your life. As you can see from the posts, all of that is still there but not as explicit anymore.
As someone who did full TXs without a PEG and then due a recurrence and surgery needed a G tube I have a unique view. My opinion is that if you do not feel very strongly about getting the PEG either way, then why not? For me,I felt very strongly about not getting a PEG. The possibility of delaying swallowing fully was too risky. In hindsight, it was a great choice since shortly after TX, I did a victory tour of Italy and traveled thru the Southwest, eating up a storm . So when my cancer did come back, I had not lost any of those culinary times still using a PEG months after TX like most do.
Make no mistake, it is very hard to do without a PEG, unless you have a strong motivation. I'm also stubborn and received a deep psychological satisfaction from not letting the cancer force me to get a PEG (the surgery the second time did though)
Last but not least, the boogeyman that if you wait too long, it is harder to do or can;t be done only applies to the technical PEG (using an endoscope down your throat to light up the stomach and then inserting it). I know for a fact that you can get a G tube - same as a PEG, but inserted via 15 minute surgery by Interventional Radiology with a fluroscope so nothing goes down your poor throat. Most posters are unaware of this alternative procedure and technically they are correct since the E is missing so as my signature line show, G-tube, not a PEG.
Whew, that's long but it's important to know the other factual side so you can make your own decision.
Charm

Shelby,

We chose the PEG before radiation as it was explained to us that if one looses too much weight in the middle of RT, the mask can become loose and needs to be refitted before continuing. The ideal way to get through RT is to NOT have any breaks other than the weekends off. We didn't want to run that risk and felt that Clark would NOT use it until it was necessary. Well, it became necessary in the 4th week and we are both glad we did it that way.

It is a temporary thing. When you can demonstrate that you can consume all your nutrition by mouth, it comes out. My husband had a lot of complications following RT that necessitated him keeping it for a total of 2.5 years before it was removed. But I think his story is a bit unusual. Seems like most people here have had it taken out months after completing RT.

Anyway, we have had no regrets using the PEG. It saved Clark from becoming malnourished. Go with your instincts on this. You know what you can tolerate however, having said that, RT is unlike anything you have ever done and will be a very challenging time for you. I wish you the best during your treatment with whatever way you choose. This forum has success stories from both the PEG users and those who did not use it.

My MO insisted that I get a PEG before I started my treatments. I hated the thing and unfortunately did not use it the way that I should have, and ended up in the hospital after my treatments, being malnourished. You can bet that I used it, then! I had no trouble getting off it. I continued to swallow, by drinking water, even though I used the PEG for actual feeding. I had it removed about three months or so after stopping treatment. The scar is no big deal, if that's what you are concerned about. It's just a little round dot. Even though I hated having it, I think that it probably saved my life.

The more knowledgeable members of the forum might know, but I am wondering if the radiation field and the amount of radiation given are factors in why some patients manage to go through TX without a PEG and others needed it from around the mid-point of TX. John got his PEG the third week of treatment and had to use it starting the fourth week because he could not even manage four sips of coffee. Yet, another gentleman we met at the hospital who was being treated at the same time managed to continue eating till the last day of treatment -- he even had a turkey dinner for Christmas. Irrespective, I believe that determination and whether you have someone to keep on pushing you to eat and drink during treatment are important. During treatment, there are so many other things that need attention that it is easy to "just skip a meal." Cancer is a battle with many fronts, you might need to think about which fronts you want to focus your energy on.

Here is what my dietitian explained to me after she returned from a very large head and neck cancer conference. She told me that cancer centers should be recommending the tube to anyone who goes for radiation with chemo. Since adding chemo makes treatments even harder and often causes mouth sores thats why a patient having that should get one. She also said alot depends on the individual. Some are stronger going into it than others, the people who are more delicate should get the tube right away rather than waiting.

Another wrench thrown into the mix is if a patient gets the 3 big bag method of chemo or the smaller easier to tolerate weekly chemo. A patient with weekly chemo may be ok without the tube. All in all, it really is a very personal decision to make. A patient who is overly determined and has their mind set might just be able to overcome the eating challenges and struggle thru without a tube. So many variables that its a choice on a case by case basis.

Here's how the logical argument goes:

G-Tube/PEG
PLUS
1) Fairly painless annoyance to have.
2) Cheap insurance to minimize dehydration and malnutrition
3) Serves as an alternate complimentary way to get food and drink down.
4) Allows for BD (Blenderized Drinks) meals that provide really yummy food.

MINUS
1) Dehydration and malnutrition will have you at the clinic or hospital in a blink
2) May become reliant on it and loss swallow function which is hard to regain
3) Most all canned formulas do not necessarily offer the best balance of nutrition
4) If your weight starts dropping, you are not in the best of heath so needing a PEG later is not the preferred time to get one.

feel free to add .... or hit > NEXT lol

don

Here is my take. I was 43 in very good shape, runner, no smoke. I thought I could just live through the pain. Well that ain't what happened.

It is not just pain, I also feel sick, I had no appetite, everything made me gag, and I was in chemo fog mentally.

For me eating was just not possible. When it was really bad, I gravity fed slowly just to keep what I could get in to stay down. I still lost 25 lbs.

For me it was either the PEG, Hospital, Both or Worse.


My recommendations are the HD 5 Step plan:

1) Get it and don't use it.
2) Then use it as little as possible
3) Then use it as much as possible
4) Then back to as little as possible.
5) Then get that thing out of your belly.

Step 4 is going to hurt.
Step 5 hurts too, but only for 10 seconds.

Shelby,
I also had a glossectomy (lost 75% of my tongue)....one thing not yet mentioned is that with your "new" tongue, you will have to work up to being able to swallow things, because your remaining "old" tongue will have to become stronger in order to push the food down....
I never got dehydrated as we used the tube for water also....it would be a shame to survive the cancer and then starve to death.
My PEG saved my life....and it's just a tiny little hole by the way...not a huge scar.

Shelby

Sometimes "logic" works better for robots than real living people. In rereading all these post on your original question, I realize it's just a milder version of the PEG wars rather than tailored to your needs.
Everybody here, whether pro-Peg or Pro-swallowing naturally, will agree that you will not have a noticeable scar from the PEG.
Trust me, that little stoma is constantly trying to close. When you have the Peg taken out, it will amaze you how fast it will close up and then heal. You will have a cute dimple, not a nasty scar. Even after almost 4 years, my stoma keeps trying to close around the g tube which is a problem but not one you will have to deal with.
As everyone here basically says, it takes a superhuman effort not to get a PEG and do great, so you better have a super reason to struggle through it. I did, you do not sound like you do, nor do the majority of cancer patients.
Since your main concern is unfounded (scar), my vote is that you get the PEG.
Charm

One had to consider other aspects besides inner strength. Each person's response to treatment is different, including current or past surgeries, co-morbities, underlying illness, weight loss & eating ability at diagnosis, radiation dosage, type, the radiation field, structure that is radiated, if done bilaterally, destruction of parotid gland, if having concurrent chemo, and type of chemo that impacts wether a person may need a peg. Sometimes things are out of our control, no matter what we say, do or think.

In my case, my initial induction chemo reaction was worse than all my subsequent radiation and chemo treatments, including surgeries, all combined for the past three years, which was all a walk in the park in comparison to what I went through for the six month's, so that impacted my needed a peg tube during hospitization, and in the future for any treatments due to the comorbitities.

Shelby, we are in a similar spot as you. My husband has finished 4 of 7 weekly infusions and about 20 rads. He's getting Erbitux rather than standard chemo, so nausea has never been an issue (of the friends I've seen get chemo, they nearly all dealt with nausea and more, even with zofran). The radiation is burning his mouth so badly. Up til today he could at least tolerate a milkshake (made with Boost). Today he couldn't even do that. In addition to lidocaine/"magic mouthwash" he's tried Episil (expensive and no relief, Rx), swishing with almond oil (like olive oil, but made of almonds, worked at first, not now) and alternating ibuprofen and Tylenol. Vicodin doesn't even help. Tonight we got an Rx of morphine. Hoping it helps.

We're looking into ups and downs of tubes. Bottom line is if he can't eat, he needs the tube. He's a tough guy with pain. He once cracked 3 ribs and hurt other areas in a motorcycle accident and didn't see a doctor for nearly 2 days. So, I know this is really bad pain. I keep reminding him the other option is death. The cancer caused very little pain, but we know eventually would have killed him. So, we have to figure out how to get him through this. He works full time and I'm a homeschool mom (with various health issues and surgery on March 20), so we need him to stay as well as possible.

Anyway, just wanted to let you know we're in the same boat. And to tell you I love your name. Our 3rd great niece, 10 mos. old, is Shelby!

Keep us all posted on what you decide!

Hi Shelby! Your case sounds very similar to mine... I was diagnosed young, stage 3, non-hpv, oral tongue, tx radiation and chemo. I didn't get on a feeding tube, my doctor thought that given my age and relative health I could get by without it, and avoid some of the complications feeding tubes can cause later on. It was difficult, especially the first couple weeks after treatment, but I got through it and had no problem eating solid food again once the mouth sores went down.
In my opinion, I think having the cancer on your oral tongue as opposed to BOT may be a little easier to stay off the tube, since the radiation is really targeted more in your mouth (opposed to your throat), and therefore it is a little easier to numb your mouth before eating than it would be your throat. My throat didn't get really sore until the end. If you stay off the tube, though, you will have to get used to drinking Ensure/Boost, as that will be pretty much the only thing you will be able to eat for a while. I HATED them, which was my biggest problem with weight loss

Shelby, I was just thinking of you. My husband has read this, too, and we've both been wondering how you are doing. Hope all is well.

This is my husband's last week of treatment (hopefully) and, of all things, he is now going to get a PEG. He did so well for such a long time, but now has dropped 27 pounds and we know that besides this week he has at least 4-8 weeks before he can get start beginning to eat "normally". He's exhausted. He's working 4 days/week 8 hrs./day (he takes chemo day off). So, Monday morning we'll be at the hospital. I'm hoping this will give him the nutrition he needs & that he'll be able to keep eating a few foods orally so he can keep swallowing. He is still drinking water, so liquid swallowing is good. Just want him to be able to swallow solids, too.