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Peg Tube late in treatment

vetorama's picture
vetorama
Posts: 16
Joined: Sep 2005

Oncologists want me to get a g-tube on Monday morning. I have finished chemo and have 4 Rad Tx left. Problem is, as many of you are aware, no appetite, everthing smells and taste like Boost or ensure to me,not able to eat any solids at all. Surviving on a 1300 cal smoothie per day and that takes 8 hrs to drinkand starting to resent that smell and taste also, almost makes me gag. I have severe mucositis, very tough to try and get 2000ml of fluid and 2000 cal in per day. Constantly having to drink (40ml every 15 min while awake)in order to meet the 2000ml goal.Had additional iv fluid several tims last week at the clinic.I'm small/thin male to start with, lost about 7#. I know the next month will be tough and that i need adequate nutrition/fluid.

My concern is the excessive,stringy mucous that i have. Afraid i may aspirate it while sedated for the tube placement. Has anybody had the same situation?

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

Honestly, I don't see where you have many choices.  You haven't told us if you've lost a lot of weight so far but it sounds like it.  And, at least as importantly, you are probably getting dehydrated which will make your Mucostis worse.  I'm five weeks out of treatment and my throat still won't let me eat anything solid.  Without my tube at best I'd be in the hospital, at worst???

I'm sure that gas passers have plenty of experience dealing with our conditions and you'll be as safe as anyone is undergoing general.

Joe

phrannie51's picture
phrannie51
Posts: 3731
Joined: Mar 2012

The horrible mucous goes hand and glove with HNC....The Dr.'s know about it.  For my own peace of mind, tho....I'd sit down and tell the Dr. who is going to put in the tube what my fear is....he/she will probably tell you precisely why that is not going to happen.  The procedure is very short, too....plus they use a twilight sedation....instead of something hard core.  Talk to your Dr. so you can relax.

p

CivilMatt's picture
CivilMatt
Posts: 2965
Joined: May 2012

vetorama,

 

I had to have my 2nd PEG put in during the middle of treatments and I never felt a thing.  I did not have any problems from the procedure and I had lots of mucus at that time.

 

You need the nutrition and this will make eating easy.  I use to use the gravity bag and go to sleep.  This will take almost all the hassle of eating away from you.

 

Don’t forget you have to keep swallowing and drinking water even with a PEG or G-tube.

 

I also hated the smell, feel and taste of food (for a while).  I lived on smoothies for 7 months, but I am back to eating almost normal again.  I now enjoy the  smell, feel and taste of food.

 

Good Luck,

 

Matt

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

I had the PEG installed mid stream in my treatment, and I was scared to death I was going to choke on mucous during the surgery.  I talked to the doctor about it, and asked him to please suction me out during the process.  He was very reassuring to me, and I came through without a hitch, so he must have succceeded.  

Deb

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

I got my PEG late in the game and I too had lots and lots of mucous. I went thru the procedure fine and I was worried about the same things you have talked about. The doctor assured me that many of her patients are just like that but they all do fine.
Once I got my PEG and started hydrating myself more the mucous was less. Still there but less of a problem,
Good luck, you'll do great.
Billie

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Like most mentioned, obviously the PEG can be inserted late in the game... MD's would be aware of your mucous situation, and while you were out for the surgery, a breathing tube would be inserted more than likely anyways.

So here's the choices you have...

Work your way through your current situation, whether food or drink tastes bad or not...you have no choice, take in hydration and calories or it won't matter either way.

Have the PEG inserted, use it when needed, but still use the throat muscles enough to keep them exercised, or you could find the PEG as your best friend for the rest of your life.

Don't do either of the above, and either the MD's will, or it's not gonna matter as you won't survive..

Brutally painful, but unfortunately reality...

Best ~ John

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

Hydrate yourself with IV saline everyday at home. This is one option I am considering in lieu of the PEG. I was all for it until I flip flopped and want to avoid at all cost.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Do you have a port, or does this IV saline at home require a new needle stick every day? I had enough problem with the port-free IV cisplatin.  I required six needle sticks, and it took the expert nurse three attempts each time.

Deb

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

I have a port but would not want to stick myself every day to get saline in and I have no idea what the doctor would allow but I know that I get infused via the port with the mobile/infuser so I know it is possible to get fluid into the body via the port while on the go. I see how simple it is when they do the bag exchange. All that needs to be is saline instead of 5FU. Other than all the mombo jombo legal riga maroll you would get I just can't image it to be technically that hard to administer saline at home via the port that is already hooked up.

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Donfoo.... I just had a vision of you driving down the interstate with a saline bag hanging from your rearview mirror! :)

"T"

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

It is really not thinking out of the box at all. For all who have had the 96 hour 5-FU infusion then you know what the kit looks like and just have saline in that bag instead of 5fu and the program set to infuse at a different rate. Really a no brainer to stay hydrated.

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

T, what you said isn't really far off, LOL...

I was in no way wearing a fanny pack...., next I'd be at Disney wearing black socks with sandals and fore go using deodorant ...

I chose to just sling the pack over my shoulder like a shoulder holster, LOL.

But when driving, the seat belt would bother me, so I'd just stick the fanny pack in the area on my center console, LOL.

When showering, I'd just use a hanger to hang the pump on the outside of the shower door with the tube coming over the top of the door.

Sleeping was the pack on the coffee table, me on the couch.

Though it does work both ways, I just used the vein for hydration at the center, and all blood work as the tech there was aweome with a needle, LOL. Getting stuck with that big azz pin for the port sucked, and I left that just for chemo.

I was lucky enough to have a hematologist/oncologist for my chemo MD... She likes to leave the port in for two plus years post Tx..., So it was nearly 2 1/2 years that I had the port in.

I was extremely happy when I finally was "De-Ported...

JG

 

 

sassysrice's picture
sassysrice
Posts: 117
Joined: Nov 2012

If you only have 4 rads left and no chemo's and I think you said you only lost 7 pounds thus far, I would say hang in there with no tube.

Jeff had no peg, the MD's were against them. They rather you keep swallowing. He lost 23 pounds in the 8 weeks. He drank water all day long. He carried a water bottle everywhere even woke at night to drink. For him I made ice cream shakes 4 times a day. I added ensure and Gatarad potein shake to it along with protein powder. He eat choc. pudding and yogurt. Not very healthy but kept him swallowing and energy up. I hear of a lot of people on here using the PEG and have trouble getting off it.

Whatever you decide good luck and best wishes you are almost at the end.

Sue

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Vetorama,

 

Deb S and I are identical.  Started same time frame plus we both had PEG put in late and no issues. Also we look alike - see her pic - wait a minute - it's Deb's mule I look like(southbound side of a northbound mule).

 

I didn't even think about the mucous though when I got pegged ...... and boy did I have mucous bad.  Got my PEG at week 5 of 7 of rads and really no issues and it really saved my bacon!  So I'm definitely a pro-pegger.  Like others have said, doc's will take care of mucous if they need to put in PEG. 

 

PEG is a definite controversy here.  But I agree with Skiff and say go with what your doc's say.

 

 I really think this subject is overblown though(ok - now  we get controversial). Psychologically for some reason no one seems to  want this, but we usually don't think twice about getting the bejeebees radiated out of us or a bunch of chemicals pumped into us (not against those things since I'm here because of them).  But like I said - if not for PEG, without a doubt in my  mind, I wouldn't be here.  AND I AM A BELIVER OF PRACTICING SWALLOWING, but I really can't remember anyone losing their ability to swallow 'cause they got a PEG. 

 

Greg

 

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