Well, this week has been a week of downhill. After my second round of Cisplatin, I haven't been able to keep anything down. I have been going in for daily IV fluids and now on a pump through central line so I get anti-emetics 24/7.

The decision has also been made to put in a feeding tube. That proceedure will be Friday. In a way, I'm relieved as it will lighten the stress of not being able to eat.

Our introduction with Steve's peg was pretty disastrous to start with but boy are we glad to have it now. It's taken alot of pressure off him, kept him hydrated and eased my mind immensely knowing he is getting everything he needs. A nurse told us that the peg will be Steve's lifeline and I tell you, she was right. Good luck on friday and I will be thinking of you.

Wendy

Mark,

Getting the Gtube is both a blessing and a curse. It does deliver the needed nutrients and sustenance that you will need to get through these treatments and afterwards. But as Wendy said it can be trouble also as it is an open wound to the outside per se. I just took Brandy in this week on hers as it is red, irritated, painful and they put her on antibiotics for the third time. Causing other issues we are dealing with too so they will be changing it out next week. I would like to take it out but we are no where near that yet either and we are 3 and 1/2 months post treatment.

I took Brandy in for a follow up with her maxillofacial surgeon yesterday and one of her teeth on top was loose and she only has 5 left up there. They xrayed it and we will be going in soon to have that tooth and bone taken out surgically, just day surgery but it sets us back on trying to get away from from the damn Gtube.

Good luck to you I will be thinking and praying for you as you finish your treatments. By the way now that you are getting the tube if you are interested I have 7 cases of Jevity 1.2 for tube feedings that we can't use as after we finished treatments Brandy developed type 1 diabetes and we had to switch off the Jevity to Glucerna to stabalize her blood sugars. It is free if you want it the insurance paid for it and won't take it back and so far the doctors offices I have asked if they would take it and give it to patients that may need it have said sorry.

Just thought I would offer it to you if you want, I am less then 10 minutes from Tigard.

Bonnie

Remember even with the PEG tube he must continue to exercise those swallowing muscles every day (by swallowing something) or it may cause nasty problems later on in the swallowing dept.

Just a thought about surplus Jevity 1.2, check the expiry date, and if not outdated, call your local food bank and see if they could use it. That is what I did with my husband's supply. It is also used as oral nutrition replacement by some people. I was given that tip by someone else who had donated. It does seem a shame to waste it when it is expensive and you know there must be someone that could use it.

Great thanks for that suggestion on the surplus Jevity. If Mark does not need/want it then I will do call our local food bank. That is a great idea.

The peg tube will be a life saver! I kept mine for 18 months and took in 5-6 cans of jevity a day to make sure I didn't lose weight. However, I DID continue to sip fluids (I absolutely LOVED pickle juice) to keep my swallowing muscles healthy. That is very important! I was so glad I had that tube! When I finally tried to eat again, I found that I had complications with swallowing and would choke because the radiation had shrunk my esophagus. I kept the peg tube in until after my 10th esophageal dilation. After that I gradually started eating again. I still drink Ensure Plus to this day in order to supplement my diet. The side effects of this kind of cancer will limit the types of foods you can eat. My doctor told me that I would never eat the way I used to eat, and he was right. I am now 2+ years post Tx and have limited eating, but at least I CAN eat!

Hi Mark...how are you doing with the PEG? Let us know how you are doing.

Be very careful with putting Carnation VHC in your tube. It actually stripped me of hydration and I ended up in the hospital because of it. David said to swallow something everyday so the Carnation is very good orally. The tube was my lifeline as well. I lost 60 pounds but can only wonder how much more I would have lost had it not been for the tube. Also keep in mind that if your throat gets too sore to swallow you can get your pain meds in liquid form as I did.

WOW pickle juice?? You sure can handle things I can't . I would love pickle juice too, but that was like swallowing a mouth full of salt . LOL I did more than pucker.