Hi, Everyone.

I was told last Monday that I will be getting a PEG place "in a couple of weeks", meaning that the RN has to book the procedure and go through all of the insurance hoops to do so.

Now, almost a week later, I am having quite a difficult time swallowing and have a good deal of mucuositis. I can barely get down 2 Boosts today and a 20 bottle of water. I KNOW this isn't good, I just don't know what to do. I'm seeing my RO tomorrow for my regular check ups. I'm swishing, rinsing, spitting, magic-mouth-washing, and the whole bit. I have been keeping up with my pain meds.

I just don't know how long I can go on like this.

Kerri

Kerri,

I'm pretty sure that if you tell your RO what you just told us, he will make sure that PEG is in ASAP. He may also get you a tube that goes down your nose in the interim. I forget the name but a few here have had that. It will hold you over until the PEG is ready. From what I hear its a bit uncomfortable but no big deal.

Yes, the peg or nasal tube will help. They may give liquid pain meds, being they they are more direct, and absorbed quicker, and an anti inflammatory to reduce the inflation. Usually they should be able to tell if it is recurrent from the primary, metatastic, or a new cancer from examination of the biopsy sample dine by the pathologist. best of luck.

Kerri, so sorry you are beginning to struggle! I agree, a nasal tube is great for the short term use. This is in case you arent able to get the peg tube quickly.

Just remember even if it hurt, you must continue to swallow every single day. This is to keep those muscles active. Its necessary even sipping water several times a day will be enough. But.... you MUST continue to get 48 oz of water and 2500 calories every single day. If not you face a good possibility of dehydration and malnutrition creeping up on you. Push yourself to drink more. I would really hate seeing you wind up in the hospital from not being able to take in enough. Please be careful and take care of yourself.

I had a nasal tube for only 2 weeks and it really helped me. They can put it in while you sit in a chair. No pain, 2 mins, that's it. You do have to get an x ray to make sure the tube is properly placed in the stomach and then they pull the thin metal strip from the tube and you're go to go. I even was allowed to pull it out at home when I didn't need it anymore.

Hey Kerri -same thing happened to me around week 3 - my swallow just wasn't going to do what I know it needed to do. It took a couple days to get my PEG in so I went for daily hydration sessions which helped a lot. It was a low point for me though- I felt like my body was betraying me!
I hope you're able to get alternate nutrition ASAP - I know you know how important adequate nutrition/hydration is.

Hang in there Kerri - you WILL get through this!
Jen

Kerri--two things. First, the above postings might make nasogastric (NG) tubes and percutaneous endoscopic gastrostomy (PEG) tube. NH tubes are inserted through the nose and into the stomach via the throat; it is not unlike the way many of us have had our throats or tongue examined by a small lighted camera inserted similarly. A local anesthetic spray makes it easier, and an Xray confirms it is properly in the stomach. It is temporary, usually used when it will only be needed for days or weeks. It extends out of your nose, which can be irritating. It is not as unsightly as it sounds, however, because it is very small in diameter. They have the advantage of stimulating swallowing so that reflex is maintained.

The PEG tube you are being scheduled for is a minor surgery wherein a hole is made though the wall of your abdomen so a somewhat larger tube can be passed directly into your stomach through a port made into the wall of the stomach itself. It is done under light sedation and local anesthetics. The tube extends onto your abdomen and is hidden under clothes. It can be left in place longer. There are some potential complications, such as leaking or infection (not common usually). One concern is that pts may fail to swallow once the tube is placed, as they no longer need to and the tube does not stimulate swallowing. It is removed in a doctor's office.

The NG tube could be used temporarily, or depending on how long-term and intense your needs are, could be all that is needed. My treatment center prefers to avoid them in favor of the NG tube unless there is no other choice; opinions vary about this, and if one is likely to need a PEG tube eventually most will just go with that from the onset.

Meds and foods can be given through both types, though NG tubes, being smaller in diameter, may allow for a smaller range of nutrient types to be used.

Second, you are not alone in having trouble getting enough calories and being discouraged. I am going through that myself and have posted a separate entry in this forum seeking ideas to help me boost my intake so I can hopefully avoid a tube. Our trials are in most cases temporary and many before us here have gotten through similarly hard times and hopefully are offering encouragement to you. We will get through this, whether we end up with a temporary tube or not!

Thank you, Ed. I will be going with the PEG since they anticipate that it will be there for awhile and the have a swallowing specialists that will be working with me the entire time and during the rehab process. I feel that I am in in good hands.

Thank you for sharing you experience. It's good to know how others have fared with different treatment options. I hope you are doing well and continue to do so. I have not been as active on these forums over the last couple of months with my new diagnosis and treatment plan, you'll see me back her more frequently as I start to feel better!

Good night! I've a got an early morning ahead of me!
Take care,
Kerri

Hi Kerri, good luck with the PEG. I had mine in for 5 mths and although very irritating at times, it really relieved the worry of not being able to eat and meant that my weight loss was not too great. I was quite sore for a few days afterwards, hope you are not too bad. Sally