Peg Tube late in treatment

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

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

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 said:

Another option

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.

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

sassysrice said:

My feelings

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

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

donfoo said:

just thinking outside the box

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.

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

"T"

donfoo said:

nothing so dramatic

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.

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