Wanted to share something possibly helpful--also posted on FB

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betsi7
betsi7 Member Posts: 20
in Esophageal Cancer #1

Ed has been in our regional hospital since Weds with multiple issues that inluded severe coughing, an out-of-alignment mediport and most significantly an "erupting" j-tube that was leaking copious bile.  The j-tube has been a lifesaver over the past year--helping him get back to 184 from 154 and he never regretted getting it.  A big issue though was the amount of tubing hanging out  It was logistically difficult and emotionally as well.  We have 5 and 11 year olds that were used to rough-housing and cuddling up with him and the tube had become a barrier.  Today they sent in a "tube specialist" who easily switched out his current j-tube with a "button" tube that is flush with his skin, very small and stable--easy to hook up tube feedings. It can be done in a clinic setting easily.  She said that many GI docs are unaware of it, which is a shame because it improves quality of life.  Most EC pts that get a feeding tube get a j-tube rather than other types due to the tumor location.  I will post the actual manufactures number, name and details when we are home. The up side is that the scans showed no new tumors, the downside is that the liver met has increased somewhat despite the chemo. The other issues were addressed with a broad spectrum antibiotic and other practical treatments.  We are going home tomorrow to fight another day, month, year? Just excited to pass the info on. Betsy

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  • LauraandLarry
    LauraandLarry Member Posts: 184
    #2
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    j tube

    Thank you for that info. It is always nice to learn from experience. Good luck in the days, months, to come!

  • eternalife
    eternalife Member Posts: 36
    #3
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    J tube button type

    Thanks for the recommendation on the J tube, will keep it in mind should it become an issue for my husband, currently he will have a PET scan , Tuesday. The doc did a biopsy on the primary  following his CT scan  a few weeks ago, the waiting is difficult.  Any more news on the HER 2 + and new meds  front?

    Thanks,

  • maryzd
    maryzd Member Posts: 1
    #4
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    leaking j tube/need tube specialist

    Betsy,

    My mother was diagnosed with stage 4 metastatic stomach cancer in May. A j tube was put in and ever since she has had problems. The tube was replaced several times due to clogging and in September (after one of her replacements in IR) the tube disc was very loose (about 3 inched from skin) resulting in the tube getting sucked in and out for about a week. This led to excessive gushing of bile and dehydration. She now is on TPN. The doctors decided to put a temporary tube (10 French) to hold open the track hoping that it would close tighter. Last week a new 14 French J tube was put in but the leaking is still on going. They are ready to stop the j tube attempts. They feel that the reason she has so many tube problems could be a transport issue. I would like to make sure there are no more options before we close the track. I have been asking if there is a "tube specialist" and have been told that there isn't a person who specializes just on tubes. I was encouraged when I read your post. Can you please send the model # and brand of your husband's new tube as well as the name of your "tube specialist". Also, if anyone else has any recommendations, please forward. We live in Boston.  

    Thank you so much! Best, Mary

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