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Joesph
Posts: 7
Joined: Nov 2012

I am going to be starting a combination of chemo and radiation in a couple weeks. Doing chemo once a week and radiation 5 days a week. They suggested that I put in a PET tube. I am having mixed emotion on if that's a good idea or not. Any advice would be appreciated. I started juicing to get used to that, and in my opinion in order for me to continue doing that (juicing) it will be a good thing that I'll be losing my taste.

Joesph

CivilMatt's picture
CivilMatt
Posts: 3007
Joined: May 2012

Hi Joesph,

Welcome to our forum, sorry you need to be here.

There is a good chance that around week 3 of rads and chemo you will find swallowing a challenge. Additionally, your taste buds will be compromised making food taste and feel awful. Having a PEG tube allows for you to still get all the nourishment, hydration and medications you need without having to swallow.

Some people do get all through treatments without the need for a PEG, but some could not survive without a PEG. I had 2 PEGs (different times), but managed to drink at least one meal a day throughout treatments.

Nothing in my life compared to the mouth sores and swollen neck I experienced. Nothing in normal life is like losing your taste buds. You want to be prepared for the worst.

Best,

Matt

phrannie51's picture
phrannie51
Posts: 3780
Joined: Mar 2012

If you get one before you start treatment, and then find you don't need it...wonderful!! If you get half way thru treatment and REALLY need one, then you'll have to get it when you're already miserable...I got mine before I started treatment (I was very thin anyway, so even losing 20 lbs was going to be dicey for me)...I went thru 3 Cisplatin chemo's and 35 rads without needing it....I asked that they remove it, and they said "hold on sister, you're not done with treatment yet"...I had 3 more Cisplaten treatments but had 5FU along with them...HOLY MOLY...I was ever so grateful to have my tube...my mouth turned to hambuger, and I not only couldn't eat, but there was no way to get water down either. The darn thing saved my bacon.

Getting a tube is an insurance policy...you're still going to have to swallow something everyday, but the great majority of food and water going down a tube might save you a whole lot of misery.

I'm 2 months out of treatment, and they have finally "allowed" me to get it removed.

p

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

"Intense" is the word I'd use to describe my early juicing experiments (most of them, anyhow). Unfortunately, your docs will probably tell you to stop having fresh produce during treatment (mine did). So, just when I was getting into the juicing routine, I had to stop. Frozen veggies were on the approved list for me, but I never tried to juice them. I was leery of getting a PEG tube, too, but I went along with it because my docs were the pros and that's what they recommended. Hated getting/having it, but glad it was in place when I needed it.

Please keep in mind, though, that even if you have a PEG, it's in your best interest to keep eating (and swallowing) as much as you can. Even if you can't eat, you need to swallow as much water as you can. I also did swallowing exercises to help my throat "remember" swallowing.

Do well, Joseph - keep us updated.

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Disclaimer: I am a big peg fan.

The best case scenario is you will NOT need a peg and will continue to eat, so if you get one and don't use it....great.

The worst case scenario is you find yourself doing poorly on the swallowing front midway through your treatments when you NEED protein and hydration and now you are in a pickle bc you already lost X number of pounds and are growing weaker by the day.

Sorry if that sound blunt, but I am a big fan of the peg tube as an insurance policy in the event swallowing takes a hard hit. There are those on here who never needed one (jealous I am of them) ....had I not had my peg, I would have been in real trouble. I came very close to saying no because I felt I could handle it even though the doctors strongly encouraged me to get one.

In Florida (where I lived for many years) you could not buy a homeowners insurance policy without a 30 day waiting period....that kept folks from going out and buying homeowners policies when a hurricane was spotted enroute :)....look at this peg tube as an insurance policy....but not one you want to buy midway through treatment.

Did you know your body will burn 3,000 - 5,000 calories a day due to the radiation treatments??!! That's a huge amount of calories. My team told me I needed to take in 160 gram of protein a day!!

Keep us posted Joseph....

Best,

Tim

Joesph
Posts: 7
Joined: Nov 2012

On the contrary my Dr. was quite impressed about the fact that I started juicing and encouraged me to continue. He did note that I should try my best to be using organic rather than store-bought vegetables.

Joseph

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Having read a lot of posts from my peers, I think I've come to recognize a difference between those of us who had radiation/surgery to the mouth, and those of us whose tumors were confined to the neck. I had laryngeal cancer. Although I eventually lost my vocal cords to the pathologist, I did not have as much trouble eating/drinking and swallowing as some of my peers who had radiation to the mouth/tongue etc. Nevertheless, maintaining weight and hydration was a challenge. Every swallow was painful, and I had to psych myself up for each and every swallow. It took a half an hour to eat a carton of yogurt, for example.

I also found that food and liquids at body temperature did not hurt as much as either hot or cold food/liquids. Everyone is different. But you may want to change the temperature of your food/drink when the going gets rough.

However, don't loose sight of two important truths: (1) Your healthcare team and the caregivers in your life will pull you through this AND (2) Your caregiver(s) will probably suffer as much or more than you will. Rick.

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

I'm one of those that would never agree that a PEG should be put in regardless and with the thinking that's it's there if you need it, or not.

Being a well nourished guy like Tim, I wasn't prescribed one, and for me that worked out absolutely fine..., but I was made aware that if things went South, it was always an option.

BUT, I also am a big supoorter that you trust in your MD's and their calls.... If I were prescribed or had been advised to have one put in, I would have.

There are many cases where someone has underlying health problems, are low in weight already, or even at a normal weight for their height, a PEG sould definitely be considered.

Many here swear they would have not made it without....

As anything, your mind set on things play huge on success also.

Bottom line to me, if your MD's suggest it, they are just being nice and letting you think you have a choice.... They wouldn't suggest it if they didn't think you should get it.

Get the PEG.

Best,
John

hwt's picture
hwt
Posts: 1962
Joined: Jun 2012

I was not given an option. I did not use it allot but when I did, it was a lifesaver. Even with it, I was down 50 pounds. I will say, when tx was over, my ONC wanted me to leave it in 12 weeks until 1st scan. I had not used it for 4 weeks and chose to have it removed. Doc that removed it said he saw no reason to wait 12 weeks, he could put another in if needed. Thankfully, I didn't need it again.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

my onc scheduled PEG tube insertion right away (together with chemo port), and I'm glad he did--if he'd let me think about it, I probably would've chickened out.

your basic-model adult male needs a minimum of 1700 calories a day. to fight the beast, really need 2000+ per day. with the PEG tube you can get your calories/nutrition/hydration day in and day out. even when your mouth hurts, everything tastes like library paste, and even water burns.

cureitall66's picture
cureitall66
Posts: 864
Joined: Aug 2012

Never got a Peg in the beginning. About 3 weeks into it, it was difficult to swallow and the eating got less and less. We desperately needed that PEG at that point. We just finished week 4 with it in and it's getting better. He wishes he would have gotten the PEG right up front and if he needed it, it was there. But, he tried to be "Mr. Tough Guy" and just couldn't do it. He weighed 230 going in and is now down to 226. 3 weeks left!! Everyone is different with how they react to treatment. This was just our experience.

Best wishes to you.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I had a different onc who said that we should wait until I need it before getting it. I asked for it up front knowing full well I'd probably need it. I am like Phrannie in that I was very thin to start with. Well a few weeks into radiation I was losing weight rapidly. I asked again and he thought I could hold out a bit longer. The nurses at his office called my other oncologist and he quickly ordered it. Still not sure why rad onc wanted to wait so long. I was really sick by the time I got mine, weak, starving and in pain......don't do it that way. Like others said, if you don't end up needing it then that's great, no harm no foul. But if you do need it (which most people do) then you'll be set. It's no fun going thru the procedure when you already feel crappy.
Good luck and keep us posted on your journey.
Billie

ditto1
Posts: 634
Joined: Mar 2012

I did not get the Peg and I did fine, but not so sure I would recommend not getting one. I use crutches and a wheelchair so I was concerned about how a Port for Chemo and a Peg for eating may disrupt my ability to manuever so consider me a bit of an unuasual case. Utimately both the RAD and ONC docs were pushing for me to at least get the Peg but neither put their foot down to insist I should. Im a little dude when I started tx I was 5 ft 4 inches and weighed 158 which was to much for my height. I lost 30lbs over the 6 months of tx but it was perfect for me for now I can get around on my crutches and my wheelchair much better. It is however not a good diet plan, there were many times I was worried where I may land without the tube. My wife was concerned as well but we made it out the other side, so not much technical talk here just my story hope you can add it to your thought process along with the others opinions. I believe I caught a funny in your juicer comment, that may indeed be one of the few reasons losing your taste may pay off. Good luck no matter which way you go we will be here to walk you thru this time of your life.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

When I was diagnosed, I weighed 220 pounds. My Onc told me I should get a PEG put in before I started treatment. Being hardheaded, I said no. I can make it without. I was wrong. After I started losing weight and became run down, I finally conceded that a tube was necessary. I had the tube put in and the next day was hospitalized for a week because of my rundown condition. I ended up looking like a skeleton at 129 pounds. I say, by all means, have the tube put in. If you don't need it, great, but don't wait until it's a case of life or death.

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

but was admitted to hospital the last week of tx and then again right after tx ended and stayed in hospital for three weeks. He could not eat anything thru his mouth so they kept him on IV fluids. He could barely eat soup. But doctors here are not in favor of tubes so they rather kept him in hospital. If your doctors suggest you PEG then use it - just have it and if you never use it, ok. But it will be a good backup for days when you might actually need it. My dad lost a lot of weight but he could afford it - because he was a bot overweight before.

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

My husband started radiation today and chemo starts next week. I have to say he has been glad to have the PEG. He had some complications and he already needs it.

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