Question for my dad

rodrigsu
rodrigsu Member Posts: 4
in Esophageal Cancer #1
Hello everyone.
My dad had Esophageal Cancer Surgery end of July 2012. He had his surgery at Shands in Gainesville by a great doctor. He was in great hands and I thank god that we caught it and he was able to have the surgery!
Since his surgery he has lost (to date) 65 pounds. This is within 3 months. He is not eating at all. When I say not eating, I mean not eating. He may eat a 1 piece of fruit for the whole day, or a piece of toast. That's it. He says when he eats he feels like throwing up and feels terrible. He also complains that everything tastes extrememly salty (even when there is no salt in the food). He obviously is very low on energy and weak and just feels like crap all the time.
Is all this normal? Since his Dr. is at Shands which is 3 hours away it's kind of hard for him to make an appointment and walk in. He has called there and spoken to the nurse pract. who informs him it is completely normal.
I understand this is a MAJOR surgery, but it just seems like he should be starting to feel "a little" better by now.
He was rehospitalized after the surgery for dehydration already. I don't want to see that happen again. But he is very stubborn and won't eat and drinks very little.

Has anyone else experienced this?

Comments

  • JanBred
    JanBred Member Posts: 42
    #2
    try
    crunchy foods..crackers, popcorn, toast, bagels toasted. I'm at my three months since IL, and at times you have to force yourself to eat. Jan
  • paul61
    paul61 Member Posts: 1,391 Member
    #3
    It sounds like your Dad needs to meet with his surgeon
    While it does take some time to get used to eating after surgery it seems that your Dad's case is something that should be discussed with his surgeon. Nausea after eating could indicate some motility issues that could be improved with an endoscopy or medication.

    You did not mention if your father has a feeding tube like a "jejunostomy tube" or "J tube". These tubes are typically placed after an esophagectomy to supplement nutritional needs while a patient becomes used to his new digestive system.

    In any case, it is not normal for someone to eat as little as your father is after surgery. I would say medical intervention is in order.

    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
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • Sunshine_50
    Sunshine_50 Member Posts: 10
    #4
    we have been through something similar
    hi, i don't post often on here. MY dad had the surgery end of september so is only 1 month post op. But he has lost 13kg/29lbs in that time. he does not have a j-tube - does your dad?
    dad had been doing well, and each day eating a little more. then a week ago it started getting much worse, he felt v nauseous and really could not eat. he ate nothing at all for 2 days and got admitted into hospital with dehydration.
    Now we didnt take him to the hospital where his surgeon is based (1 hour away), just the local emergency department as we thought it was just dehydration. Anyway after 5 more days of no food and no sleep and no energy, he turned the corner.
    Docs said his hypothalamus was extremely stressed from the surgery, and has impacted not only on appetite and nausea (beyond what most patients experience in having their digestive system cut up and sewn back to gether), but dad was also struggling with v low levels of sodium/salt in his body.
    He has needed medical intervention, lots of medicines, constant monitoring, and is finally starting to feel better and is managing a few spoons of food every few hours.
    we are in australia and so far our doctors have refused to do a j-tube for a number of reasons.
    if your dad does not have a jtube or feeding tube of some description and is not eating or drinking, then he needs medical assistance.
    it is normal to have no appetite, to get diahorrea/dumping syndrome, nausea, have fussy eating habits, only manage small amounts, get acid reflux. its not normal to not be able to eat anything all day everyday.
    i hope our story can help in some way. I hate how uncertain this cancer is - you really dont know what is ok and what is not.....but if in doubt, you gotta check with a doctor.
  • rodrigsu
    rodrigsu Member Posts: 4
    #5
    Sunshine_50 said:

    we have been through something similar
    hi, i don't post often on here. MY dad had the surgery end of september so is only 1 month post op. But he has lost 13kg/29lbs in that time. he does not have a j-tube - does your dad?
    dad had been doing well, and each day eating a little more. then a week ago it started getting much worse, he felt v nauseous and really could not eat. he ate nothing at all for 2 days and got admitted into hospital with dehydration.
    Now we didnt take him to the hospital where his surgeon is based (1 hour away), just the local emergency department as we thought it was just dehydration. Anyway after 5 more days of no food and no sleep and no energy, he turned the corner.
    Docs said his hypothalamus was extremely stressed from the surgery, and has impacted not only on appetite and nausea (beyond what most patients experience in having their digestive system cut up and sewn back to gether), but dad was also struggling with v low levels of sodium/salt in his body.
    He has needed medical intervention, lots of medicines, constant monitoring, and is finally starting to feel better and is managing a few spoons of food every few hours.
    we are in australia and so far our doctors have refused to do a j-tube for a number of reasons.
    if your dad does not have a jtube or feeding tube of some description and is not eating or drinking, then he needs medical assistance.
    it is normal to have no appetite, to get diahorrea/dumping syndrome, nausea, have fussy eating habits, only manage small amounts, get acid reflux. its not normal to not be able to eat anything all day everyday.
    i hope our story can help in some way. I hate how uncertain this cancer is - you really dont know what is ok and what is not.....but if in doubt, you gotta check with a doctor.

    Thank you for your comments!
    Hello everyone!
    Thank you for your comments. I have not been on in a while.

    My dad did have a J-Tube after surgery for about 6 weeks. The doctor thought he was doing so good and removed it. After it was removed he was hospitalized a short time later because of dehydration.

    The more I read your posts, the more I am realizing this is NOT normal. Not normal for him to go day in and day out not eating anything. He finally made an appointment to go back to Shands next week to see the dr. He has now lost 70 lbs since the end of July. We are lucky to get gatorade in him! I sure hope they can help him.

    Sunshine, I am glad your dad is recovering and starting to feel better. I am not sure what the hypothalamus is, but am going to look more into it.

    I will keep you all updated next week after I hear more. I am sooooo glad he finally going to see his Dr. Thanks again everyone!

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