September 15, 2011 at 10:09 pm #52826marionsModerator
KarenSeptember 15, 2011 at 2:05 pm #52825lainyParticipant
Karen, I am so sorry about your Dad and now your Mom! Unbelievable! I keep saying that it seems we have more patients on the East and West Coast than mid America. The only thing we seem to know for sure is that in Asia there is a parasite called liver flukes that lives in bad water and is carried by some fish. Mostly in Tiwain, Korea and Viet Nam. We have had some VETS come down with CC after serving in the Army in those places. BUT that does not account for all the other patients who were never there. Unfortunately it’s all guess work we just don’t know. Hopefully one day soon we will know more about this disease! You sound like a wonderful daughter, your Mom is lucky to have you by her side. Be very strong!September 15, 2011 at 1:24 pm #52824
Margaret and Marion – thank you for the information you provided. I am my Mom’s biggest Advocate, and will continue to do so. My Dad passed this past April so this year has been a rough one for us. He passed away and we learned that what ultimately knocked him down was cancer of the biliary system. This was learned after he passed and we had a biopsy done of his liver. Then three months later, Mom finds out she has Cholangiocarcinoma – a cancer of the biliary system! Absolutely bizarre….and we believe it must be environmental but what???
Peggy – my heart and prayers go out to you and to your husband. I will also pray that there is a clinical trial for him. Keep the FAITH!
KarenSeptember 15, 2011 at 3:03 am #52823peggypMember
I, too, live in Virginia; my husband John has Stage 4 intrahepatic CC. He was diagnosed in July 2008 and operated on in August 2008 at UVA. His tumor was the size of a softball. Since then, he has developed multiple tumors and has been treated with chemo. Yesterday, we were told by his oncologist to get our affairs in order. John is 58 and next week we will celebrate our 36th anniversary. I can’t imagine my life without him. His oncologist did say that he was going to talk with some other doctors to see if there are any clinical trials that he may qualify for. I will pray that your mom will get along well with her treatment. Just continue to fight alongside her during this trying time. PeggyPSeptember 15, 2011 at 2:13 am #52822mlepp0416Participant
welcome to the board that no one really wants to join. My husband Tom had his original liver resection in June 2008. He ended up going home with two drain tubes. On was behind the remaining back side of the liver, and the other was below the liver. The cut side of the liver had developed a lead. There was a pocket of bile behind the liver and the remainder of the bile leaking was going into his belly cavity. The tube behind the liver was in place for about three months. The lower drain (JP drain) was in for 7 1/2 months. The average time for a drain tube, per Tom’s surgeon can range from weeks to months with the median of 77 days. He of course is very unique so he had to have his jp drain longer. 18 months after his resection, he too started turning yellow and they were unable to get an internal stent in, so now he has another external drain tube which keeps him from being my ‘yellow man’. His tube has to be flushed every day and the wound cleaned and rebandged (take less than 5 min) as I have it down to a science since I’ve been doing it for the past 20+ months now. He has his external tube exchanged out for a new one every 4 weeks.
I am the ‘Margaret’ that Marion was referring too. Feel free to ask me any questions and I will answer them to the best of my ability. Having a drain tube is not the worse thing in the world, but both Tom and I would not mind seeing it go away. We had a big bonfire and burned his JP drain after they took it out! This on I fear is with him for the remainder of his life since his new tumor is inoperable and involves the hepatic artery. Surgery is not an option and the drain keeps his bilrubin level at around a 5 – 6 which is better then the 24,900 he was at!
Go with God – prayers are coming your mom’s way.
(P.S. Tom was given 6 months ago in Dec ’09 and he is still here!)
KEEP KICKIN’ THAT cancer!
MargaretSeptember 15, 2011 at 12:29 am #52821marionsModerator
kdhokie…our Peter once said: welcome to the club no one wants to belong to. And if I may add: and is glad to have found. In addition to Lainy’s response you might also want to take a look at our google search function, top page, right side. Simply enter a keyword such as “drainage tube” and numerous discussions will appear. I also would like to point to the postings from Betsy and Margaret as they have extensive experience with drainage issues. And, continue to reach out to our members. We are in this together.
All my best wishes,
MarionSeptember 14, 2011 at 3:24 pm #52820
Thank you for your reply. So draining for this long sounds like it is “normal”. We will continue to stay positive and keep the right attitude as we do both believe it is the best medicine and easily available!
Thank you!September 14, 2011 at 2:33 pm #52819lainyParticipant
Dear KDHokie, welcome to our wonderful family where you will find the most courageous and caring people in the world. First of all congratulations on your Mom being able to have the surgery and to be doing so well at her young age of 77. Drainage….yes! My husband had drainage for about 2 months and it sure is a celebritory day when they come out! Sounds like you both have great attitudes and we all try to remain realistically positive as it is the best RX. Wishing you all the best and please keep us posted on your Mom.September 14, 2011 at 2:20 pm #5650
I joined this group on my 77 yr. old Mom’s behalf. She was diagnosed with extrahepatic cholangiocarcinoma in July 2011, and had a liver resection on July 29, 2011. They removed a little under half her liver, the smaller than a golf ball size tumor and also the left hepatic bile duct. She remained in the hospital for two weeks, was released with the drainage tubes.
She is still draining fluid. We have top notch liver surgeons here in Richmond, Virginia that are seeing her…they say that every person drains differently and we just have to be patient. It has been six weeks since the surgery….does anyone have a similar experience of draining for this long?
We are eager for the draining to stop. Once that is done, she will have radiation for 6 weeks and also take Xledol (sp?) chemo pills during the radiation. They could not get a clear margin on one side of the tumor because of the common bile duct, and has markers for CC still.
She is staying positive, eating really well and we continue to pray.
God Bless, and thank you for any insight!
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