Cancer Survivors Network

Hi. My husband was diagnosed last August with stage IV. He is HER2 postitive and really sensitive to chemo. He is currently doing well on Herceptin and Taxotere. Tumors and lymph nodes are responding and beginning to shrink.

He had a J tube placed several months ago before he started chemo because with his first round of 5FU he almost died. He has DPD which is an enzyme deficiency that wont allow 5FU to break down so it is usually fatal and something so few people have they don't test for it before beginning chemo. After just one round he was hospitalized for 3 weeks and could not eat due to SEVERE mucositis and all that comes with that.

He had a j tube placed but fortunately has not had to use it yet. He has an esophageal stent that causes really bad reflux and for several days at a time it is very hard for him to eat so we might start using it as well as how much he can eat.

My question is this,this tube can just come out and we are interested in a Mic-key button or nutriport button that is held in with a balloon, does anyone have one of these?

His nutritionist said she would like for these to be the standard tube instead of the standard j tube. His tube was only held by outside sutures and they came off very quickly and were quite bothersome. We have to keep a dressing on it just to hold it in.

Today I was told by the surgeons office that put the J tube in that Mic-key buttons were only for pediatrics but I have seen on some web sites adults that have them. As well has his nutritionist saying that about they should be standard.

We have made a follow up appointment with the surgeon to discuss changing this but I'm not sure they are going to be responsive to the idea.

Any feedback would be appreciated.