CancerCompass message board discussion started by Ranner on 2/2/2006 http://www.cancercompass.com/message-board/message/all,4348,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi My father has had inoperable cholangiocarcinoma since february 2005. Now chemos doesn't work anymore. Now all they can do is put drains in the liver and that he has had done a number of times. They just told us yesterday that that can't be done anymore because it is too difficult. The lastest one they put in via the procedure PTC, that is through the skin. And that drain is now placed partly outside the body. They said that if he accidently pulls it out it can no longer be put back and since they can not put any other in, that is very scary. I would like to hear from somebody who is living with drains outside the body to hear how you deal with it. Kind regards Randi Denmark, Europe Ranner Thu, 02 Feb 2006 00:00:00 GMT My dad has the same drain that hangs on the side. He hasn't had any problems with it being pulled on. He just clips it to his shirt so that if it is pulled it pulls his shirt first. One time we were alll scared because my mom was sitting on it and he started to get up but it wasn't pulled out. My dad doesn't seem to be bothered at all by the drain. He also is unable to have chemo. THey said it won't help him. He just has the drain. Audra Thu, 02 Feb 2006 00:00:00 GMT Hello again. Thank you for your quick respons. How long has your dad had the drain? How long has he been diagnosed? Is your father drain open so bile comes out in a bag. My father is closed but has to be opened in case of fever and chills which might indicate an infection. Kind regards Randi Ranner Thu, 02 Feb 2006 00:00:00 GMT My dad has recurrent bile duct cancer. He started having symptoms in May 2005 but wasn't re diagnosed until august. In september they put the drain in. It is a bad that is open and drains. Audra Fri, 03 Feb 2006 00:00:00 GMT Hello again Thans for your reply. what does this senrence mean "It is a bad that is open and drains"? Has your fathers drain been changed since it was put in? Randi Ranner Fri, 03 Feb 2006 00:00:00 GMT oops I meant bag not bad!!! and no he has not had it changed. Audra Fri, 03 Feb 2006 00:00:00 GMT My mom had a biliary drain to the outside for about 5 months. As days went by the drainage became less and less. Eventually it stopped draining completely. She was always in and out of the hospital with hopes that they could adjust the tube to improve the flow but to no avail. I posted previously on this site under subject "why is she vomiting blood" well I now know the answer she had esphogeal varices which bled. It complicated her condition even more because of the constant lost of blood. She became very weak, anemic, ascites, severe weight lost and very quickly her liver got progressively worst and then the kidneys began to fail. On Jan. 21 her doctor informed me that there wasn't anything else they could do for her. I'm sad to say that she lost her fight to this terrible disease later that night. I honestly don't have any suggestions for you other than getting second opinions and doing a whole lot of praying. I wish you the best. Altered Lives Sat, 04 Feb 2006 00:00:00 GMT hi ranner,i found your questions about your dad's? drainage bag and thought i'd put in my 2 cents worth, my sister has these bags also, they hang outside the body and bile drains into it taking the path of least resistance, they are changed every 3 months sometimes more often, she had a malignant tumor in her liver which was burned out (radio frequency ablation) a few months ago,i can't say this procedure has helped anything because she still turns very yellow and the bags get's clogged and then they must change them again,they have been changed 5-6 times i think and she's had these for 14 months now, i hope this answers some of your questions i know you must have many, for us it seems the list get's longer every day,feel free to contact me if you have any more questions i might possibly answer for you,my prayers are with you sincerely annieo p.s. my sis has 2 bags Annieo Sun, 05 Feb 2006 00:00:00 GMT Annieo, I'm truly sorry to hear of your sister's condition. My best friend of 35 years was just diagnosed with extrahepatic cholangiocarcinoma. The lack of good information about this condition and treatments that work is very unsettling. He just had a biliary drain and external bag installed. We were shown at the hospital how to flush the internal tube at the external port, helping it to maintain a clear flow.This might help with your situation.I would like to learn more about the radio frequency ablation used to treat her tumor. Were there any side effects from the treatment. Is the tumor completely gone. Would you share with me where I might find information about this procedure. Our prayers are with you and your sister. May you see better days ---Ezrac Ezrac Wed, 15 Feb 2006 00:00:00 GMT I READ YOUR MESSAGE-My dad has a drain bag outside also.He found out in feb 05 that he had a blockage in the interhepatic bile duct.It is inoperable,because of the location.He has the tube replaced about every 3 to 4 mths.He has had about 15 chemo treatments,since August.Right now he is off of the treatments so his body can rest.The treatments have seem to help him alot.Hope that this gives you hope.I will keep your family in my prayers. Amytn Wed, 22 Feb 2006 00:00:00 GMT hey randy, My name is al and i'm recovering from a rare but not unheard of tumor called klatskin,which is found in the bile duct area.The only way to treat this tumor is by surgery because chemo/radiation doesn't effect the tumor.I have two drains that are outside my body right now(waiting for the area fixed to heal)which is attached to my liver and bile duct area,i have found that sleeping in a recliner is best for me,i can't tuck my shirts in,and you have to be careful when you grab your shirt or pants that the drains are not caught up in any way,i'm curious,why they said that it couldn't be replaced if it came out,i have to go back every 3 months to have mine replaced or until my area heals.....i'm praying for you and I hope that everything will be alright.....email me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----......GOD bless Sandwichman Thu, 23 Feb 2006 00:00:00 GMT Al, did you have surgery? Maybe you stated earlier but I didn't read if you did. My friend has klatskin tumor and had liver ressection on jan.13 and is doing good. she is 75 and the doctors can't believe how good she is doing, however if they had known before surgery that all of the tumor couldn't have been removed, might not have done surgery.Cancer has invaded some tissue of the perihepatic duct, well differentiated invasive adencocarinoma. And one lymph node positive for metastatic adenocarcinoma. She has had 2 drains since surgery, one a jp drain, and the other higher up coming from liver bile duct area. On monday one drain will be removed completely and the other has already been capped off, but leaving it for 6-8weeks. Maybe for treatment? Not sure. We haven't seen oncologist yet. Emory hospital is where she is being taken care of. Please keep in touch.charmaine Charmaine Sat, 25 Feb 2006 00:00:00 GMT I am sorry about your dad. What is the quality of his life like? Perplexed Mon, 17 Jul 2006 00:00:00 GMT