Feeding Tube - when is it time?

cfight
cfight Member Posts: 69
edited March 2014 in Esophageal Cancer #1
My father was diagnosed with EC Stage IV last December. The treatments have been able to clear up all of his mets except for one stubborn tumor in his liver. This one seems to be causing the biggest havoc on his body!! He's had a lot of pain which is now under control thank goodness; however, he's not been able to eat as much over the past month and a half. He went from having three meals a day to barely drinking a milkshake a day.

My mom had asked the oncologist if he needs a feeding tube and the doctor said it is something he does ONLY as a last resort option. I question this approach. My thought is to have him nutritionally sound so his body can continue to fight the cancer. It seems to me that if he's losing weight and not meeting his nutritional needs, this will become a slippery slope -- one he can't possibly recover from.

My father has been on marinol to help activate his appetite, but it seems the chemo, pain meds and cancer together are causing challenges for us.

I would be curious to know when people introduced feeding tubes and if they've been helpful. Thank you so much in advance!

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • paul61
    paul61 Member Posts: 1,392 Member
    #3
    I would discuss this with your oncologist again
    Hello,

    I am sorry to hear that your Dad is not doing well. Like many esophagectomy patients I had a j-tube placed as a part of my Ivor Lewis surgery. It gave me a method to get vital nutrients during a time when eating was difficult.

    I am a bit surprised to hear that your oncologist would view this as a "last resort" kind of action. In my case, my oncologist discussed keeping the tube in even after I had stopped using it on a regular basis as "insurance", incase I had difficulty eating during my follow up chemotherapy.

    I would recommend you revisit this question with your oncologist again. A little more forcefully this time.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • dsmasters
    dsmasters Member Posts: 22
    #4
    Get the tube
    I was diagnosed with EC back in Sept '09 had chemo/radiation and the cancer did not go away. Had the Ivor Lewis in June then just finished up more chemo. The cancer is gone now. 

    I had a G-tube into my stomach for the first round of chemo and while it wasn't pleasant I got the nutrition I needed. That was taken out and the J-tube was placed during the Ivor Lewis. I just had it taken out after almost 6 months.

    The J-tube was in my intestines as opposed to my stomach and was much better to deal with all the way around. With the G-tube I had to do manual feedings but with J-tube I had a pump that ran at night. The J-tube is also smaller and I had no nausea with it compared to the G-tube. 

    The most important point of all of this is that your body needs nutrition in order to fight the cancer and heal itself from the treatments. I could not imagine going through all the treatment I did without it. I honestly do not think I would have made it. 

    When I had my first dose of chemo and then the surgery I was never given a choice of whether to have the tube, I was told it was going to happen (even though I did not want it the first time around). 

    I know we tend to put a lot of trust in the doctors that are treating us but we need to step back and look at things on our own from a logical standpoint.

    My advise is to get a tube as soon as you can. 
  • unclaw2002
    unclaw2002 Member Posts: 599
    #5
    My dad was diagnosed with EC
    My dad was diagnosed with EC in Dec of 09. He fought getting a feeding tube and his local oncologist supported him. My dad thought that somehow this was only a last resort for the dying and fought any other suggestion. Yes my dad is stubborn :)

    Anyway he almost died because he didn't have the J-Tube infact he had one stent fall into his stomach, experienced severe dehydration and had to be hospitalized and the doctor still didn't put in a J-tube. It was only after the second hospitalization, where he was delirious and I made my mother insist he get one that he did. And that stay was for over a month because the dehydration was so severe. Without the J-tube and hospitalization I don't think he would have survived. And here is the bad news the Doctor took the J-tube out a couple of months ago because he was eating okay. I was pretty angry but living far away makes it hard to have a daily impact no matter how much we stay in touch.

    Indeed, now that his tumor has come back to his esophagous the doctor is taking about another stent (I am not so sure about that) and no J-tube. So I would ask to discuss this issue with someone else because from my limited experience it seems that once a doctor takes a position it is rare that they would admit it was wrong. Good luck -- I understand your frustration but don't give up.

    Best,
    Cindy
  • Unknown
    Unknown
    #6
    unclaw2002 said:

    My dad was diagnosed with EC
    My dad was diagnosed with EC in Dec of 09. He fought getting a feeding tube and his local oncologist supported him. My dad thought that somehow this was only a last resort for the dying and fought any other suggestion. Yes my dad is stubborn :)

    Anyway he almost died because he didn't have the J-Tube infact he had one stent fall into his stomach, experienced severe dehydration and had to be hospitalized and the doctor still didn't put in a J-tube. It was only after the second hospitalization, where he was delirious and I made my mother insist he get one that he did. And that stay was for over a month because the dehydration was so severe. Without the J-tube and hospitalization I don't think he would have survived. And here is the bad news the Doctor took the J-tube out a couple of months ago because he was eating okay. I was pretty angry but living far away makes it hard to have a daily impact no matter how much we stay in touch.

    Indeed, now that his tumor has come back to his esophagous the doctor is taking about another stent (I am not so sure about that) and no J-tube. So I would ask to discuss this issue with someone else because from my limited experience it seems that once a doctor takes a position it is rare that they would admit it was wrong. Good luck -- I understand your frustration but don't give up.

    Best,
    Cindy

    This comment has been removed by the Moderator
  • nancyann3
    nancyann3 Member Posts: 173 Member
    #7
    unknown said:

    This comment has been removed by the Moderator

    Tube is a good thing....
    My hubby has the tube and it is a wonderful tool to have to fight the disease. If the body isn't fed the mind cant work right, you feel like heck and you certainly cant fight cancer.
    Look at it as an insurance policy. It doesn't matter what stage you are. If you need to use it full time it is there. If you need to use it part time, it is there. I doesn't mean you are at the end of life. Its just another tool and a caregivers best friend. I was told to think of nutrition as important as your most important medicine. Without it all the chemo or rad in the world wont help.

    Take care
    Nancy
  • cfight
    cfight Member Posts: 69
    #8
    Thank you!
    Thank you everyone for your input regarding the j-tube. I spoke with my mother last night and she is going to talk with the oncologist again next Friday. She recognizes that my father can't continue on this path. I actually heard "anger" in her voice when we were discussing the oncologists decision not to move forward with the j-tube -- this is a good thing! She's ready to go in and fight for what is needed for my father! I very much appreciate everyone's advice. I cannot thank you enough. I wish all of you the strength necessary to fight this disease - you're all in my thoughts!!

    -Carolyn
  • Unknown
    Unknown
    #9
    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #10
    unknown said:

    This comment has been removed by the Moderator

    This comment has been removed by the Moderator
  • dwhite0002
    dwhite0002 Member Posts: 126 Member
    #11
    I am a four year survivor. I
    I am a four year survivor. I am 36 yeras old, and I still need a j-tube. I have had several. Your doctor's philosophy is way off-base, here. I simply cannot eat enough to maintain weight. Everyone is different. If your dad cannot eat well, he should have a j-tube. They can be VERY convenient. Hang in there!

Discussion Boards