Update from 8/29/14 post

hwt said:

Kritter

Sounding like what most here have been through. I had a g-tube vs. PEG and found it very easy. Remember, with any feeding device, it is still very important to keep swallowing or you can lose the ability. If cancer is in the lymph nodes in neck, they will need to be treated as that is how cancer travels. Many, if not most of us, have had lymph nodes involved. Radiation itself is not difficult, 10-15 minutes a day, it is the side effects, long and short term that can be hard on you. You won't get every side effect and the ones you get can be varying degrees. 

Prayers for an easy journey

Such brave people on this site, what is the difference in the g-tube versus the PEG?  The Doctors are worried my throat will get very sore.. not looking forward to side effects, but will tackle them if I get them. And I will follow your advice and swallow. Thanks so much !

Kritter

phrannie51 said:

First....worry not about the

the feeding tube.....it is most minor part of everything you're looking at.  From the minute they knock you out till you wake up is about 45 minutes.  Mine was pretty tender for a couple of days, then it eased off.....and by the end of treatment, it was my best buddy.  The biggest problem I had with it, was where to stash the tube....down my pants?  In my bra?  Tape it?  Get a wrap?  I found lycra/cotton camasoles with a built in bra on Amazon that held it snug against my body, made it invisible under my clothes....nice colors so I could wear them tucked out under my sweaters and shirts.   Make SURE they tell you how to use it before they send you out.  Nobody told me, and when I finally needed to use it, I had no clue how it to do it.....

I had infected lymph nodes on both sides of my neck.....my Dr. decided to radiate them and see if they'd go away....they did....but would have had them removed after rads were over if they had not shrunk.  Every Dr. seems to have their own method.....take the nodes first....or wait and see how it goes after.  From everyone who has talked about it, getting rid of the nodes is pretty easy....

You won't be using the tube right away....so eat eat eat ......Somebody else mentioned, but I will reinterate......swallow something everyday....water, peaches, milk, something to keep that swallower swallowing.......they had me terrified of losing the ability.....so I made sure something went down the gullet on a daily basis.

Just remember.....one day at a time.....one foot in front of the other......stay in the day.  It's going to be alright!!

p

Thanks so much for the note. I love your attitude! My worry is I can't breathe through my nose. It is 80 to 85 percent blocked. Wondering how thry will put me under if I can't breathe while they scope my throat and stomach. I will make sure they explain it to me and I found a video on * you tube* that shows how to use it and clean it. Very informative.

My concern was as the Doctors that my cancer may have spread there, so that is what he wants to find out. I don't think so, as he couldn't feel it, but there the little thing was all lit up. 

Eat ?? that is my issue.. I am not hungry.. could go all day and not eat unless I force myself to eat, which I am doing. And drinking ensure when I don't feel like eating. And this bothers me. 

You are right.. I will take one day at a time and try to stay positive. 

Thank You.. you are such a beautiful person to have been through this and help others.

Kritter

corleone said:

Sorry you have to go through

Sorry you have to go through this crap. I had/have nasopharyngeal carcinoma (NPC) stage 3, treated 2 years ago with concurrent radio and chemotherapy, followed by chemo only. No surgery. During my last follow-up in May, I was still in complete remission. 

I am not clear what type of cancer you have; the NPC can also invade the ethmoid bone, so you might have the same as I did, or maybe not.

Anyway, a few comments:

- Don’t be afraid of the feeding tube. It sounds horrible, but it’s more of a nuisance, as you have to take care of it (how to fix it against your belly, to flush it, etc). The procedure itself is quick, just a bit painful. I had some minor complications, with intense pain the first couple of days, but that’s rare. After that it was OK;

- Not sure about pulling your teeth. I didn’t have any pulled, although I had a few with root canal and fillings. I even have a wisdom tooth on my mandible, that they (maxillofacial surgeons specialized with onco patients) didn’t consider that had to be removed. Keep asking that. The risk is osteonecrosis, even years after radiation, but you can have that regardless of teeth being pulled or not (except when they are in bad shape).

- I had 2 big lymph nodes on both sides of the neck (4.5 cm each). They were sensitive to both radiation and chemo and went away; there was no need for surgery after that. 

- The lymph nodes are not in themselves a big issue, as long as they are contained in the neck and head area (above the collar bone). If they are found below, it means the cancer spread beyond what it is considered to be “highly curable”.

- The fact that it spread to the bones around the nasal area, that’s significant. It means that you’ll need to have the radiation targeted in those affected areas, and you need a highly experienced onco radiation MD and team. In other words, a big onco center with resources and experience.

 

I am sorry you had to go through it as well, but glad you are here to help us newbies. 

I have stage 4 nasal cavity cancer with ethmoid invasion. In my other posts it will describe it more. But my nose is full of a huge tumor. Or the Doc's call it huge. They said very rare, but can be treated. I will have to be very determined that this will work and be patient with the procedure and be willing to fight!.. 

They wanted to pull 7 teeth, I said why, just take them all. My family has horrible teeth, they tend to crumble, but weird is they don't hurt. Unless you inspect them every day, you don't realize they are needing worked on. I would just rather get this over with, and have one less thing to worry about later. 

So far that is the only lymph node, and he is supicious of it. So taking a better look at it. 

I have faith in the doctors I am seeing, as they are highly accredited in their field. In fact my radiologist is also an oncologist. And he has seen this type and treated it once before with great success. If I do get worried I amn not that far from Md Anderson. 

So happy to know that you are in remission! I hope to be there soon myself!

Kritter

wmc said:

Neck dissection......

I had the neck dissection on both sides as a precation if it came back it wouldn't  spread. They took 48 on left side and 38 on right side, all were negitive. I have no disfiguring and the right side all the feeling came back. They don't think I will get the feeling back on the left side but that is not a problem. No problems with my sholders. [They took my larynx at the same time] This is why my left side is so numb. I didn't have any RADs or chemo, so no PEG, but I did have the NG tube in my nose. I would chose the PEG if I had the option. It's cold when it goes in your nose and the tube can get your throat sore. Mine was only in seven days and went past my stomach to the intestines. [GURD] After the PET scan I was T4,N2,M0, but after the surgery it went down to T3,N0,Mo, stage 3, much better. There many factors that can make it a 4. If lymph glands are involved, or the size, will change your staging, but it can be reduced after the TX. Will keep you in my thoughts and prayers. Remember, only today matters and it can be a good day.

Bill

You went through a lot and I still love that video you posted. 

They can't put anything in my nose, it is blocked with a tumor. So the PEG, which I worried about, but now know it is nothing compared to the rest of what I have to go through. 

They thought it was stage 3, until they saw the PET scan, now they are saying stage 4. As the tmor larger than they thought and looks like more bone damage. I may not look the same when this is over if they do the reconstruction, if they have to cut my face instead of doing it endoscopic. The nasal passage my not be big enough if too much damage was done I was told. But I will be alive and that is all that matters!.. 

You keep doing great !

Kritter