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mlbrooks852
mlbrooks852 Member Posts: 67
edited March 2014 in Esophageal Cancer #1
Greetings: My better half just had minimally invasive esophagectomy at KU med center in Kansas. Turns out that 3 out of 18 lymph nodes were positive. We are looking at chemo soon, and just would like some words of encouragement or advise about things to watch out for. He is doing well - minimal pain - he does have a fib, so he has been started on coumadin for that, and they are unable to remove the chest tube at this time because his INR is too high. He also has been taking fluids by mouth and some of those fluids are escaping thru the J-tube opening. Is that a common occurrence? Staging has not been completed yet, but we believe it will be T1,N2,M0 - should we be hopeful that we can beat this thing????

Thanks

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  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • mlbrooks852
    mlbrooks852 Member Posts: 67
    #3
    unknown said:

    This comment has been removed by the Moderator

    Thanks for the response
    My better half is my husband and he is 64 years old. Long, long history of acid reflux, controlled well with Prilosec. His only symptom was loss of appetite. He quit eating - was taking in around 400 calories per day - He lost about 25 pounds, and I finally insisted that he go in for an EGD. That is when the tumor was discovered - January 2010. He was staged thru an EUS as T1N0M0, and that is why they did the surgery prior to any chemo. The tumor was very tiny - 1 cm in size, but now that the surgery is complete, the pathology came back with 3 out of 18 lymph nodes involved. He is still in the hospital - surgery was last Friday. The surgeon who placed the J tube tells us that it is common for fluids to leak out around the site some, they have placed an ostomy bag on the site to protect his skin. I'm waiting until Monday to see if they have to take him back to surgery to replace the tube. You know how hospitals never do anything on the weekend. He actually is doing well. He is up and around, and carries his chest tube container with him when he walks. He is learning to cope with all the tubes and IV lines, etc., that are connected.

    I have read many of the postings on this site and know that it is going to be invaluable in the days to come. I thank the ACS for providing this service.

    I am a member of RV.net., and have learned lots from that forum about travel trailers, travel, etc., and so now my attention will shift from camping to cancer. Not exactly the path I would have chosen, but so be it, and we will fight.

    Thanks
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #4
    mlbrooks852 said:

    Thanks for the response
    My better half is my husband and he is 64 years old. Long, long history of acid reflux, controlled well with Prilosec. His only symptom was loss of appetite. He quit eating - was taking in around 400 calories per day - He lost about 25 pounds, and I finally insisted that he go in for an EGD. That is when the tumor was discovered - January 2010. He was staged thru an EUS as T1N0M0, and that is why they did the surgery prior to any chemo. The tumor was very tiny - 1 cm in size, but now that the surgery is complete, the pathology came back with 3 out of 18 lymph nodes involved. He is still in the hospital - surgery was last Friday. The surgeon who placed the J tube tells us that it is common for fluids to leak out around the site some, they have placed an ostomy bag on the site to protect his skin. I'm waiting until Monday to see if they have to take him back to surgery to replace the tube. You know how hospitals never do anything on the weekend. He actually is doing well. He is up and around, and carries his chest tube container with him when he walks. He is learning to cope with all the tubes and IV lines, etc., that are connected.

    I have read many of the postings on this site and know that it is going to be invaluable in the days to come. I thank the ACS for providing this service.

    I am a member of RV.net., and have learned lots from that forum about travel trailers, travel, etc., and so now my attention will shift from camping to cancer. Not exactly the path I would have chosen, but so be it, and we will fight.

    Thanks

    Welcome
    Hi Mlbrooks and welcome to our wonderful family of csn survivors. I was a cargiver for my dad, Ray, who has recently passed away, 3/9/10. He survived his ec, but got mets to his liver in December. Sounds like you and your husband are in the right place. Stage I is a great place to start. Just keep fighting, keep a strong faith, ask a lot of questions, come to this site often, and please keep us updated! We will pray for both of you. What are your names?
    Tina
  • mlbrooks852
    mlbrooks852 Member Posts: 67
    #5
    Tina Blondek said:

    Welcome
    Hi Mlbrooks and welcome to our wonderful family of csn survivors. I was a cargiver for my dad, Ray, who has recently passed away, 3/9/10. He survived his ec, but got mets to his liver in December. Sounds like you and your husband are in the right place. Stage I is a great place to start. Just keep fighting, keep a strong faith, ask a lot of questions, come to this site often, and please keep us updated! We will pray for both of you. What are your names?
    Tina

    Thank You so much. Our
    Thank You so much. Our names are Dale and Mary Lou Brooks
  • Hope_Faith
    Hope_Faith Member Posts: 150
    #6
    mlbrooks852 said:

    Thanks for the response
    My better half is my husband and he is 64 years old. Long, long history of acid reflux, controlled well with Prilosec. His only symptom was loss of appetite. He quit eating - was taking in around 400 calories per day - He lost about 25 pounds, and I finally insisted that he go in for an EGD. That is when the tumor was discovered - January 2010. He was staged thru an EUS as T1N0M0, and that is why they did the surgery prior to any chemo. The tumor was very tiny - 1 cm in size, but now that the surgery is complete, the pathology came back with 3 out of 18 lymph nodes involved. He is still in the hospital - surgery was last Friday. The surgeon who placed the J tube tells us that it is common for fluids to leak out around the site some, they have placed an ostomy bag on the site to protect his skin. I'm waiting until Monday to see if they have to take him back to surgery to replace the tube. You know how hospitals never do anything on the weekend. He actually is doing well. He is up and around, and carries his chest tube container with him when he walks. He is learning to cope with all the tubes and IV lines, etc., that are connected.

    I have read many of the postings on this site and know that it is going to be invaluable in the days to come. I thank the ACS for providing this service.

    I am a member of RV.net., and have learned lots from that forum about travel trailers, travel, etc., and so now my attention will shift from camping to cancer. Not exactly the path I would have chosen, but so be it, and we will fight.

    Thanks

    J-tube leakage
    Hi,
    I just wanted to let you know that leakage around the J-tube is normal -- my husband's leaks bile a lot and the Dr. said to just keep changing the gauze. His poor skin is so raw from all the tapes - he's allergic to them all. But, hoping it will get to come out soon as he is almost done with chemo. (he had surgery last Dec.).
    Nice to meet you and welcome to this site,
    Shelly
  • Donna70
    Donna70 Member Posts: 852 Member
    #7
    Hi, had j tube for 3 months
    Hi,
    Thanks Lori for the heads up. I had my j tube from December when I had the open esophagectomy till late March. Yes you can have fluids come out. Tell your hubby to drink slowly and make sure he has not taken in too much at one time. I once sat down after having a half cup of coffee to feel something warm coming right out, felt like the old I am a little teapot!!! It only happened that once so if it is a continuing problem tell the dr. Also I don't know how long they plan to keep it in but if your hubby has any problems with soreness etc he should ask for help esp wound care nurses seem to know more about the j tube situation. When he is staged never give up hope, there are survivors from stage I to stage IV and they are surviving. The longer you live the more hope you have because the drs are trying their best to come up with better answers. New drugs come out all the time. I was T3N1M0 at surgery and did have a positive node after surgery and am now finished with the chemo for that and finding out very shortly whether my scans are clear. Just take it one step at a time and you will see all the hopeful stories on this board. We do have our losses of some of the most wonderful people you could ever meet, but they gave us courage to fight like they did and go on. Good luck, also there is a David White who has had a j tube for 4 yrs and he knows a lot more than I do, you can address him here too. He is very helpful. take care, prayers always,
    Donna70
  • Donna70
    Donna70 Member Posts: 852 Member
    #8
    Hope_Faith said:

    J-tube leakage
    Hi,
    I just wanted to let you know that leakage around the J-tube is normal -- my husband's leaks bile a lot and the Dr. said to just keep changing the gauze. His poor skin is so raw from all the tapes - he's allergic to them all. But, hoping it will get to come out soon as he is almost done with chemo. (he had surgery last Dec.).
    Nice to meet you and welcome to this site,
    Shelly

    Shelly, two things for sore skin
    Hi Shelly,
    Hate to hear about the sore skin, my nurse told me to get Nystatin powder it is an RX and sprinkle that on. Also ask about using the diaper rash ointment, one or the other can help and also I only use paper tape and keep it on the good skin not near the wound. Hope he gets it out soon. I am still having problems because mine was in so long. There are other bandages that are like skin but you have to be careful to cut a hole at the j tube opening and make sure bile and acid is not trapped under it, that is what did my skin in. take care,
    Donna70

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