Starting Week five. What about the feeding tube?

That's going to be something you and your MD's decide...

I never had a PEG, so I can only offer my experience and opinion.. Around where you are , or even before.. I just swapped over to Ensure Plus, and slippery jarred peaches.. I figured I'd get more bang for the buck. For the energy, discomfort and lack of enough food intake.., I swapped over to liquids. Just eating the peaches primarily to keep the throat working.. I'd set up a glass or two of water, a few Ensures, a few peaches, and a crushed up percocet in a little water.. I'd take a teaspoon of the magic mouthwash, or liquid oxicotin to numb the throat up.., dink an Ensure, some water, peaches, a little more Ensure, and chase it with the percocet to knock the edge off of any pain to come..

Pretty much my routine for several weeks.., until I could start eating creamy pasta, things like that.

But everyone is different.., what worked for me, maynot for you..

Worse to worse, the PEG was always an option..

John

Definitely talk to your doctor for pain management options and to your nutritionist who can make suggestions for easier foods to eat. You are almost done with treatment and after that you'll have a few more weeks of the intense pain you are experiencing now. I had 8 weeks of chemoradiation, without a tube, though they did give me some pretty strong drugs to help with the sore throat. Eat and drink whatever you can so you maintain your ability to swallow and keep up your strength. You are almost done!

ocmark said:

Ports vs. Tubes

thanks for you prompt reply, Phrannie

I seem to stumble over some of the terminology.Soif the port isn't the tube, then I assume it's some sort of pick line for your chemotherapy?

Cooking for two more weeks? So, I'm still not too clear on when people actuallyt start to feel better. My doctor has said things like" The sore will peak around the end of the 4th week and you may actually start improving before the treatments are over." another one is Most of the damage is cleared up after two weeks."  Am I being walked down the garden path?

met on here say the two weeks after rads can be the worst, and then improvement begins...now that isn't everybody, of course....but many found the mucous and the "hurt" continued during the cooking time.

When I finished rads, I immediately started in on another 9 weeks (3 treatments) of chemo...cisplatin and a fanny pack of 5FU (the FU part stands for exactly that...and we can't curse on here ).  I may or may not have been miserable after rads, it was hard to tell because the 5FU carried a misery all of it's own. 

I was eating soups and drinking my Boosts 3 weeks after my final chemo, tho....

p

This definitely a decision need to make. I had peg-tube before treatment, but I rarely used it. In the last two weeks, my mouth soar was hard, but I can still tolerant ensure. I did use peg-tube to have 2-3 formulas, with 3 ensures. But I think I can also keep my weight probably to have like 6-8 ensure without peg-tube.

Some people had pain after installing peg like me. It spent 3 days to go away. I lost a few pounds for this. So if you are similar, the benefit will even be less.

Also, you can probably ask for magic mouth wash and rinse (swallow a little bit if throat soar) before eating which helped a lot for me after treatment to start eating real food.

LOL..

Like Phrannie..., I too had the port for a few months over two years.., my onco likes to keep them in tghat long as that's the highest potentioal timing for recurrence I guess..

As for cooking, and pain..

Myself, though I did swap over to liquids week 3-4 or so of rads.. It didn't really get much worse.., it just never got batter either until about 4-6 weeks post rads.. Then I started feeling adventuorous enough to try soft slippery foods.

The PEG has always been a source of high discussions here..

Some swear they would have never made it without one, some think it should be mandatory up-front. Otheres like myself, made it through just fine without one.., knowing if needed I could get it.

If I had been prescribed one, I would have trusted my MD's decision.., It wasn'r prescrubed, but I was made aware, that if it became needed, it would be put in.

Best,

John

ocmark said:

Proceeding with Rads

I had my Monday Rads after taking the weekend off. Week five sarts on wednesday. It's amazing how the days keep clicking over. I had chicken Noodle Soup for lunch and Cream of Chick soup for dinner, with a couple of Ensures thrown in. It took some time to eat and my tongue is REALLY sensitive, but it can be done. I'm just going to take it one day at a time and see how long I can keep going. My mouth didn't get noticeably more sore after today's treatment, so maybe I can do this.

Just keep ticking off those days...they do go by. One foot in front of the other. I'm glad your mouth sores and pain didn't get any worse. You are more than halfway through your rads...this is GOOD! The soups are a good idea. If you can do yogurt (even if you thin it out with some milk or fruit juice) that's a giid source of protein, though be careful since dairy can increase mucus for some people too. Stick to what works in terms of you being able to swallow.

Barbara

ocmark said:

Proceeding with Rads

I had my Monday Rads after taking the weekend off. Week five sarts on wednesday. It's amazing how the days keep clicking over. I had chicken Noodle Soup for lunch and Cream of Chick soup for dinner, with a couple of Ensures thrown in. It took some time to eat and my tongue is REALLY sensitive, but it can be done. I'm just going to take it one day at a time and see how long I can keep going. My mouth didn't get noticeably more sore after today's treatment, so maybe I can do this.

Hi,

I'm also starting week five on Wednesday. My mouth sores began last Thursday. I have them on my gums, tongue and inside of cheek. It hurts to eat, but I just make myself do it anyway. I finally got some pain meds (or at least Germany's version of a pain med) on Tuesday. I use the magic mouthwash right before I eat. It numbs my mouth just long enough to eat. My biggest motivator was to NOT get the PEG tube, so I've been doing whatever I need to do. The docs here in Germany are really big on sage tea. My doc tells me it is really supposed to help with the inflammation. Apparently, it is the cure for everything here. Hang in there....we can do this! 

Jen

I made it through without one and it was the right decision for me. There is increased risk of long term swallow issues with a PEG as some are not exercising their swallowing once the PEG goes in. Both my ENT and MO preferred going without a PEG and having once placed if needed down the road.

The pain and sores were very challenging to survive but I'm sort of the old school and hear the little voice wispering "no pain - no gain". 

You'll need to take in the various factors and make your own decision. We all make it through one way or the other. I have never anyone who needed one and did not get one then suffering from excessive weight loss, compromised health conditionb, or other log term side effects. And it is rare for things getting so bad a TPN was necessary due to not using a PEG.

Having the PEG does relieve the oral pain while eating but for many your mouth is suffering pain big time anyway. Either way, it is a tough slog and no free passes.

Good luck,

Don