Does Bile Leak?
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Hello again, To all of you that asked about bile leakage. In my case it turned my urine to a very dark color and my stool was clay colored, and my eyes were very jaundiced, out of the 8 symptoms of bile duct cancer, I believe I had 6 of them, lost over 40 lbs. I also had leakage after they had removed my gallbladder and when, as I mentioned in a previous post my plastic stent plugged up I had a lot of leakage in my abdomen. A Dr. at Mayo told my son that I was literally poisoning myself, that’s when they put 3 drains in me and also 2 metal stents. My bilirubin level has been way down ever since the drains have been removed, see I had to go several days or so with no drainage in those 3 little containers, . As far as chemo treatments my blood tests have been good but with this new treatment [radiation & 5-FU] they have to monitor me real close because I take coumadin [blood thinner] and from what they tell me this radiation and 5-FU can make a persons blood thin, so have to watch that. God Bless all of you. Sincerely, Larry
Yikes, it hasn’t been an easy road for you Larry- based solely on the few details you’ve provided. I can’t understand why they haven’t incorporated additional stents into Dad, clearly what’s in there isn’t sufficient & others such as yourself have had multiples! That’s amazing the amount of bile they removed from you. Mayo said they would only recommend radiation/resection for Dad- so we feel confident that we’ve secured the most agressive team we could find- at least they’re willing to try. Dad is being treated at the Guthrie in Sayre PA.
You were very lucky with the gemzar response, that’s great. I hope the radiation goes well, it’s amazing how precise they can be these days with the advances in equipment.
Good luck to you Larry & please keep us posted…
Best,
TessHi Tess, Thank you so much for responding. My tumor is in my left bile duct and not anywhere near the size of your Dads. I had bile leakage at first then they put in a plastic stent [St. Marys hospital in Madison, Wi.], and they put a drain on my gallbladder. See after the Drs in Madison said they couldn’t operate my kids called Mayo and that’s how I got up there for a second opinion. After many tests at Mayo they operated on me [gallbladder]and at first they thought they could get the tumor but alas, that was not to be. Then after about 4 weeks the plastic stent plugged up and back to Mayo they drained approx. 1,000 ml of bile from 3 different areas in my abdomen, had 3 drains in me for about 4 to 6 weeks then they quit draining and they took them out. All in all, I was admitted to Mayo 3 different times for a total of 18 days. So that’s a bit of background on me. With me they have to be very precise with radiation because my pacemaker is just above where the tumor is. I think I was kind of lucky when getting chemo [Gemzar], I didn’t have much trouble with that, no hair loss or loss of appetite, got a bit tired and weak at times but that was about it ,also maybe a bit of pain or queaziness in my abdomen and pelvic area, but not bad. Hopefully this new round of treatment won’t be too bad either. All the best to you and your Dad. Sincerely, Larry
Hi Larry, it sounds like you and my Dad will be on very simular schedules…. as he is expected to start the radiation with 5FU sometimes next week, also 5X week for 6 weeks. The new 5FU that he’s been on for 2 weeks now has made him extremely tired & the docs have told Dad that the radiation will destroy one kidney and a portion of his lung. I just spoke with another gal last week that indicated that the radiation was less tough on her husband than the Gemzar, so it’s hard to tell what the response may be. The 6 week external radiation, in Dad’s case, is expected to be followed by internal radiation (brachytherapy) via his biliary cath. The key objective, is to reduce the size of the tumor to the point that it can be resected. The surgeon says that if they can reduce it just a bit, he’ll try and resect. He is the only doc. we found (after half a dozen opinions) that said he’d attempt surgery. The tumor is about the size of a softball & is located near a major vein. Most of the docs said that they didn’t recommend radiation – but in the same breath indicate that it is the only chance for survival… so why not try????
Please keep us posted as to how the combo is working for you Larry, you are clearly a fighter & you’ll be in our thoughts and prayers.
Best to you,
TessHello all, This is Larry from Wisconsin again. I was diagnosed with bile duct cancer last August. Have 2 metal stents in place, have had 9 chemo treatments since Dec.1st, 3 Mondays on and 1 off and now this next Monday am starting radiation and chemo. My past chemo treatments I had Gemzar, and this time with radiation it will be 5-FU, will be doing this for 5 days a week for 6 weeks. I know there is no cure for my type of cancer but hopefully they will be able to shrink it and keep it from spreading which my chemo oncologist said that as far as she can tell it hasn’t spread. Has anyone been through this before and did it extend your life. I found on the internet that 7 to 12 months was the expected survival for the unresectable cancer that I have. Well, I have the 7 months beat and now am going to beat that 12 month time frame. My question is, how does radiation and 5-FU affect a persons body and daily activities? I know that each person reacts differently to treatment but just would like a general idea on what to expect. God Bless each and everyone one of you. Sincerely, Larry
Very interesting Raye, thanks for sharing. The docs & nurses here have never heard of leaking bile. Moreover, the oncologist & radiologist can’t understand why Dad is so jaundice & why his bilirubin levels are so elevated, as the scans appear to suggest that the biliary cath is in perfect position to divert the bile. Yes, Dad too has lost an alarming amount of weight & has next to no appetite. He started 5FU in exchange for gemzar last week & is scheduled to being radiation next week. Thanks for the note, there’s comfort in knowing Dad is not alone on this one.
Best to you,
TessTess, I leaked bile through the skin and around any open areas. I had several pics installed at variuos times, but never had disoloration of the window. You could smell the bile that leaked through my skin and around my pics and stent line. Since I was a “plugger” and had many stents inserted and removed with cholangiograms ( probably 14, but I eventually lost count ) bile had to escape somewhere. I lost half my body weight, was always jaundiced badly, and smelled a bit. Ha! Par for the course with CC.
Hey guys, just thought I’d post an update on the leaking bile & the increased jaundice, as the docs can’t explain it. It is suspected it’s bile leaking from the pic line, as it cultured negative for infection & is green like bile. Dad is awefully jaundice still & the doc’s can’t explain it. After numerous reviews, it appears that his biliary catheter, diverting the bile, is in perfect place and doing its job. Per the scans last week, after 3 mo. of gemzar, the tumor has not grown. However this week the CA19 is back up to 9,000 + & the bilirubin level to 14. Dad is not eating much & is so very weak. He’s expected to start 5FU via a daily pump infusion & radiation (brachytherapy) next week. I worry about his strength level. He also spiked a fever this week, with terrible chills & confusion. It held out for a couple hours as he refused to go to the ER, then it broke & he was back to normal. It was odd, in that it was his off week for chemo.
As an aside, I contacted a bilirubin toxicity specialist this week to inquire into potential negative implications of jaundice in the system for extended periods of time…. The specialist indicated that the form of bilirubin
that is accumulating in Dad’s circulation and is being excreted
in the bile will predominantly be the so-called “direct” or
“conjugated bilirubin”, which is not a toxic form of the pigment. He further noted that the toxic form is “indirect” or “unconjugated” bilirubin which is,
in general, a problem only in newborn babies and certain extremely
rare diseases. He says that although the jaundice may be extremely
disconcerting and worrying, one should not worry about toxicity from
the yellow pigment itself. That explanation did provide some relief following some readings on bilirubin toxicity.Keep us in your thoughts & as always, thanks for sharing your insights.
Best,
TessThanks so much Jean for providing your insights. I appreciate it. I wasn’t certain if bile can actually be extract via sweat glands or an orifice such as a pic line hole. Mom is going to follow up with the docs tomorrow, as something is definitely not right & it may have to do with that catheter. I’ll keep you posted. Thanks!
-Tess
Hi Tess
When you first posted this, my first thought was that there was bile in his sweat which was appearing as the yellow discoloration you mentioned. Reading your post this morning that your dad has become jaundiced over the last few days, makes me think that there is bile in his sweat causing this. I think it was just a very early sign that was not yet apparent elsewhere.
In regard to the jaundice that he has recently developed, that you posted about on another thread, I would call the doctor right away and let them know. The catheter could have become dislodged or occluded and they may need to intervene right away.
Please let us know what happens and sending all my best to your dad.
Jean
The interesting thing Lainy is that the pic line is very clean, the skin and area around the pic are in perfect condition (no redness, irritation, odor), and the green/yellow film is limited to the window & surrounding white lining. It looks as though the materials are responding to Dad, as opposed to Dad responding to the materials. No sure.
-Tess
Hi Tess. Just an abstract thought. Could your dad be having an allergic reaction to the white lining? Through all that Teddy has been through we have found MANY tapes that give him reactions.
Good point Marions, Mom was sorry that she let them throw it out this week. She was thinking, in retrospect, as you have suggested. But it’s back again, so perhaps we’ll suggest that at Tues. appt. Thanks!
-Tess
Thanks for the note. Mom did initiate contact with the 1-800 # this week & they sent her on to the sales rep. He’s been great about following up & documenting the case with the nurses, so hopefully he’ll take it back to the R&D crew. The nurses were adamant that it wasn’t an infection and they’ve been tending to the area for a few weeks now, Dad has a good crew here at the Packer in PA. The Gemzar is being administered to him via the pic (I believe). He’s tolerating it very well. Of course there is the fatigue & loss of appetite, salty taste in the mouth, constipation, some odd tingling sensations in the fingers, a bit of fluid retention, etc. But all in all, he’s responded quite well. He’s expected to start radiation later in Feb. i.e. brachytherapy via the biliary catheter. How are things going with your Dad?
-Tess
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