February 19, 2014 at 3:27 pm #79643andieParticipant
This sounds like great news to me. From experience with my Dad, I know that once the bilirubin starts falling it’s a good sign the internal stent is working. Have they mentioned capping the external stent off? I know my Dad used to have this done once the internal stent was working.
My Dads bilirubin was 600+ and I know how much it means to get it down to the magic 50 for chemo.
My Dad was also told to drink lots to help flush the bile through, he also had lemon n warm water morning and night and drank tomatoe juice. I’d read these helped the bile and the jaundice, Dad liked them both so it was a bonus!
Sending lots of luck and positive vibes.
AndieFebruary 17, 2014 at 7:02 pm #79642
Sadly its true…. sugar is ingredient no. 1 in many things, I always said america runs on sugar and gasoline. I went to the oncologist this week and he took a blood scan and said all is well . Dan, these are u.s. numbers so I don’t know if they even mean anything to you, and I am not bragging either, just to share the numbers with you, my bilirubin total is 0.2, albumin 4.4,Alkaline Phosphatase 64, he said by medical definition I am cured and cancer free, I am not a cancer patient but a resected liver patient with bilary restriction issues, I will no longer see my oncologist, but I will now be in the care of my gastrointestinal doctor for these issues. My CEA was 3.6, which is what it always is, the doc says it is slightly elevated because I smoke cannabis , and not to worry. As far as what not to eat, deep fried anything you are playing with powerful stuff. If I eat KFC I can poop over the house. No fish and chips, I went to a picnic and ate a bratwurst someone didn’t cook through and wow. Here is the answer, COOK FOR YOURSELF. If you eat out or eat anything prepared by others, you don’t know how it was handled, or mishandled which is easy, I purchase my ingredients and prepare virtually all my own food, eat what you enjoy and cooking is fun. sorry to go on, PatFebruary 17, 2014 at 3:49 pm #79641betsyParticipant
Re. tube not draining: as long as there is no fever, nausea, shoulder pain, it all sounds good. I’m a 5 year veteran of biliary drains.
Pat: My diet is restrictive too. Sometimes all I have to do is look at something and and I feel nauseous. I really struggle giving up sugar. And I practically live on oatmeal, eggs, fruit…..just like you. I used to love beer too. A nice cold beer (mine was Corona with lime) on a hot afternoon…..nothing better.
BetsyFebruary 16, 2014 at 5:20 pm #79640
Danny, in the eight years I have been blessed with I have probably done it all, good, bad, ugly. Before cc I ate it all, greasy spicy anything and wash it down with beer, friends said my stomach is cast iron. Well when I learned of the presence of a tumor I changed my ways for a long while. I lost a third of my body weight, 239 lbs. to 160 in about 12 months time, including a piece of liver being removed. An infrequent beer is almost nothing. If one eats a stir fry done with cheap commercial oil it can cause a reaction from the liver. The reaction of my liver to something fatty is a burst of bile, with a straight pipe now connecting my liver to bile duct means right into the gut, no gall bladder any more to slow things down, and depending on a few variables I will see this in my next stool,yellow or diluted bile, looks like urine in the bowl. This is how I have learned my limits as to what the liver will tolerate. If I eat super healthy lean diet my digestion is textbook and you would not know I ever had a digestive disease. I have lived a good life after my cc, and every now and then it is alright to let the wind blow your hair a little bit. Bananas, eggs, roasted veggies,salads of all types, are liver friendly, oatmeal, farina, I use honey as a sweetener, I am not perfect but I know these are good, fresh oranges, apples cut up, common sense tells it all. I love bean soup, a salad, chicken made a thousand ways, enough? avoid processed sugar, it is the devil. PatFebruary 16, 2014 at 2:39 pm #79639dannyk86Participant
Good to hear from you all.
Still no clearer on the catheter mystery, but so far it doesn’t seem to have affected him adversely.
Perhaps Pat, it is as you said and there is some scar tissue at the point of resection which has now magically cleared itself? we were never told definitely what was causing the blockage of the ducts as they couldn’t tell for sure if it was a tumor or just some scar tissue.
Marion – The 55 relates to the Bilirubin count in his blood following the liver function/blood tests they took last week. Bilirubin is what gives bile its yellow colour, hence jaundice when the count is high. On the day of the operation (PTC scan and catheter insertion) his Bilirubin was over 600, now it is back down to 55. We are told that the norm is somewhere between 20-30?
We had some initial feedback from the oncologist following the scans, from he could see there hadn’t been any dramatic change the previous scans 6 months ago, but was waiting on a full report from the radiologists.
Pat – You mention beer or greasy food didn’t go down too well. Have you found that any particular food groups to work well or against you?
Dad doesn’t drink alcohol anymore, and food wise he’s always been a meat and two veg kind of guy…tending to go more meat than veg to be honest. While he doesn’t necessarily eat unhealthily he has never really embraced a whole new anti-cancer diet/lifestyle like many people I read about. I always read about certain foods with are pro-live and anti cancer and try to promote these to him. But he can be a stubborn old Yorkshire man who “doesn’t believe that rubbish!”
Still, the fact he’s here and going strong (sort of) is testimony to something!February 15, 2014 at 11:44 pm #79638
Danny, hello to you and Martin. I too am a long term resection survivor and like Martin was, I have been doing remarkably well. The only problem I have had with the plumbing is last summer when I would have a beer or eat something greasy enough I was feeling mild pain in the liver area. I saw a my GI doc and he ordered a MRI of my bile ducts, which showed scar tissue build up around the bile duct at point of resection. I believe a bile duct is a delicate thing to sew back together, and with martin and myself it is truly a test of the skill of the person suturing a floppy tube the size of a drinking straw. We both have long surpassed the time this repair has to last most in most cases.My point of resection had bile duct restriction of scar tissue down to 3 mm where it should be 7 or 9 mm.One day it just seemed to clear itself and start working as it always had. I have lived one miracle after another and I don’t know what to say. I read these boards and I see how things too often go, and I know I am blessed and I read these posts and I cry, I cry like a baby for all these good people for who things don’t go so well. I cannot reply about chemo or any other treatment than a good surgery in time. I am sorry for this development, but do tell Martin I am praying for his return to an easier recovery.God Bless, PatFebruary 12, 2014 at 6:18 pm #79637marionsModerator
danny……considering that the jaundice is virtually gone, your Dad is doing rather well. The 55 count you are mentioning – is it in reference to the tumor markers?
I would assume that it is possible for the catheter to have moved or that it is blocked. Most likely the upcoming scan will answer some answers to this question. Hopefully others will chime in with their thoughts as well.
MarionFebruary 12, 2014 at 2:21 pm #79636lainyParticipant
Dear Dan, WOW, that is some drop in numbers….Congratulations to your Dad.
I hope they figure out the Catheter mystery and that he continues along this smoother road. YEA!February 12, 2014 at 11:44 am #9539dannyk86Participant
It’s been a while, so for those of you who know my story, just though I’d provide a little update on my dad (Martin).
For those that don’t know and are interested, you can read up on his long standing battle here: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=9869
So having had the biliary catheter inserted back in November, dad’s bilirubin count has dropped significantly and he is finally beginning to look more like his normal self, with Jaundice almost completely gone!
At the time of the operation his count was at life endangering levels of 600+ (think it was 627 to be precise). Having just had some test results back this morning it has incredibly dropped right down to 55.
We are told the average persons is normally around 20-30 so a little way to go, but this is the lowest it has been since June/July 2013.
In the last week or so the external drain seems to have stopped draining, which we are a little worried about as we thought it might be blocked…However at the time his bilirubin count was at 87 and in the last two weeks has dropped down to 55.
He started taking some medication to ease his diarrhea and it seemed there was a strong correlation between this and the catheter stopping from draining externally…we are told this is just coincidence having spoke to our GP, the cancer nurse and the specialist at the hospital. None the less they changed the medication just to be sure. So far it hasn’t made a difference, so I guess it rules that out.
We also tried flushing the catheter with 10mm of saline solution but it doesn’t seem to have changed anything.
Anyone with any experience of biliary catheters? is it normal for it to just stop draining externally?
The doctors seem to think that the fact its not draining externally is a good thing and must mean that the bile ducts are finally allowing bile through in internally.
We have scan results next week so fingers crossed we have some good news in that the tumors haven’t grown or spread.
At this stage he has still has undergone no chemotherapy at all, only the 80% liver resection which was undertaken 6 years ago today.
All the best everyone.
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