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  • Persistent chyle leak management

    My husband had RPLND last year and more recently a thoracic surgery to remove a small but suspect mediastinal lymph node which turned out to be benign.
    Since his surgery 2 months ago, he has a chyle leak that is very slow but isn't stopping. After 4 weeks of TPN his thoracic surgeon went again in his chest to ligate the tissue to stop the leak.
    The leak has slowed down to 200ml/day but is still there and a danger for his lung (we can't leave the fluid in or his lung could collapse).
    We are at loss with what to do from here.
    My husband has been at the hospital for a month now, with a chest tube. It seems that the problem is similar to chylous ascites but in his chest instead of abdomen.

    Can you point me to anything or anybody who could help us? The surgeon doesn't know what to do.. he wants to send him home with a "canister" to catch the fluid.

    Tell me how your persistent leak was managed. Medication, nutritionist, supplement,.. I'm very worried for his health.

    Thanks

  • #2
    Sorry to hear about your husbands situation. Where is he being treated?

    Besides the TPN have they spoken about trying octreotide or diuretics. Have they considered or spoken about trying an embolization procedure if the ligation was not effective? Any idea why the ligation was ineffective (for example, were they not able to find the leak?)

    Mike
    Oct. 2005 felt lump but waited over 7 months.
    06.15.06 "You have Cancer"
    06.26.06 Left I/O
    06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
    06.30.06 It's Official - Stage I Seminoma
    Surveillance...
    Founded the Testicular Cancer Society
    6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

    For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

    Comment


    • #3
      Hi Mike, the embolization procedure happened a week before the ligation and failed because they couldn't access the leak area (they tried 4 different ways to get there, during a 6 hours long intervention). They also couldn't see the leak with contrast during this radiology intervention. So the drs think it's very small.

      It seems like the ligation was effective because the leak is considerably better (only 50-100ml/day now). He is home on a low fat diet, with a chest tube in. I read the whole forum about chylous ascites and it seems that it took weeks and sometimes months for this to resolve. I hope it resolves sooner than later for us. The current plan is to re-assess the situation in 2 weeks. They did octreotide the whole time he was on TPN. We will ask the doctor about diuretics.

      I want to tag Scott but I don't know how and private message don't seem to work (I sent 3 and don't see them in my sent folder)

      Edit to add: we're doing low fat, MCT oil supplements, vitamin supplements and protein powder. We have a nurse that will visit every other day and will go to the hospital every week. I would like to be in touch with people who have been dealing with chylous ascites and get any tips or recommendation on what worked and what didn't work.
      Last edited by Helen; 03-12-20, 12:22 PM.

      Comment


      • #4
        Sounds like there have been many interventions and that it is slowly starting to move in the right direction. Hopefully, it will resolve here soon. I tried to send Scott a message for you but can't promise anything. If things don't resolve, depending on where you were, you could always seek a more experienced thoracic surgeon and see if they have advice (I'm not sure where you were).

        Mike
        Oct. 2005 felt lump but waited over 7 months.
        06.15.06 "You have Cancer"
        06.26.06 Left I/O
        06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
        06.30.06 It's Official - Stage I Seminoma
        Surveillance...
        Founded the Testicular Cancer Society
        6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

        For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

        Comment


        • #5
          Hi, Helen, I’ve been away from these forums for some time, but I got Mike's message and came to read your post. I went through practically everything on your list, short of additional surgery. Unfortunately, I don't really have a good sense of what did and didn't help. In the end, we removed my persistent drain and let internal pressure build, and I would return to the hospital to have fluid drained. My leak did finally resolve. I know just how frustrated your husband and you must be. I will be very surprised if your patience doesn't pay off within the next few weeks.
          Scott, scott@tc-cancer.com
          right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


          Your support helps Livestrong fix the problems that people with cancer face every day. Please give generously!

          Comment


          • #6
            Thanks Mike and Scott. Scott, do you remember how much ml/day was your output when they decided to remove the drain? Unfortunately we can't let it build up because of the lung. Second question is: were you on low fat or no fat diet? The nutritionist insisted on 60g/fat per day but that seems quite high. We had to cancel the visiting nurse because of the virus and will be changing the dressing ourselves. Mike, we are in the Denver metro.

            Comment


            • #7
              Hi Helen, In these situations, I haven't heard of anyone not using a low-fat diet. How is the drainage going? Any improvements? In Denver, I am assuming you are going to Anschutz, if not, perhaps getting an opinion there may help or I can reach out to my contact there and see if they have any suggestions? If anything I think it sounds like a thoracic surgery issue and I am just not sure who those docs are in Denver as far as being able to help but can reach out.

              Mike
              Oct. 2005 felt lump but waited over 7 months.
              06.15.06 "You have Cancer"
              06.26.06 Left I/O
              06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
              06.30.06 It's Official - Stage I Seminoma
              Surveillance...
              Founded the Testicular Cancer Society
              6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

              For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

              Comment


              • #8
                Originally posted by Helen View Post
                Scott, do you remember how much ml/day was your output when they decided to remove the drain? Unfortunately we can't let it build up because of the lung. Second question is: were you on low fat or no fat diet? The nutritionist insisted on 60g/fat per day but that seems quite high.
                I found the information below in my old notes...

                I dealt with chylous ascites from July through September of 2005. Without the drain, I had six or more liters drained at a time. Then, I had a persistent drain in place for two months. Eventually, I had the drain removed and paracentesis twice more, after which my chyle leak finally healed spontaneously.

                After we stopped TPN, I was advised to reduce fat in my diet to as low a level as possible, under 5 grams a day, and supplement with medium chain triglyceride (MCT) oil.
                Scott, scott@tc-cancer.com
                right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                Your support helps Livestrong fix the problems that people with cancer face every day. Please give generously!

                Comment

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