Bile duct cancer, newbie here

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Bile duct cancer, newbie here

by Pk8124 on Wed Sep 13, 2017 10:17 AM

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I have just joined this group as my dad was diagnosed with choliangiocarcinoma on June 9,2017, stage 4 and drs told us not much they could do at this point. Gave 3-6 months to live. Drs put a drainage tube in abdomen end of august and went on hospice next day. I drain off 2 liters of fluid daily. Just wondering what to expect and what to watch for to lnow when the end is near.

RE: Bile duct cancer, newbie here

by shanie1017 on Thu Dec 07, 2017 09:03 AM

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Hi.  I'm very sorry to hear about your dad.  My dad was diagnosed with bile duct cancer (cholangiocarcinoma) in October 2016.  He's between Stage 2 and 3 with no mestastasis.  Surgery was not an option because his tumor is in a bad location.  It's been very difficult with severe ups and downs.  The biggest problem has been weight loss, weakness, and lack of appetite, which leads to even more weight loss.  Also, he's had biliary tubes, which usually need to get exchanged every 2 months, but he sometimes needs to get them exchanged even more frequently than that because they've pulled out, gotten clogged etc.  The tubes have their own set of complications (such as infection, sepsis, etc.), and he's been in an out of the ER just from tube issues (twice due to sepsis). 

He's been on chemo since January.  Initially, he was fine with IV chemo (Gemzar and Cisplatin) and didn't experience any side effects, so we thought he would be able to tolerate the chemo treatments, but as the dosage increased, it began causing one side effect after another, which ultimately led to further weakness, loss of appetite, dizziness, etc.  In September, he switched to oral chemo (Xeloda), which was also fine at first, so we thought it would be a better option with fewer side effects, but chemo is chemo and the side effects continue.

Even a few months after he began chemo, he had enough good days where he was able to walk around, cook for himself, and go outside to run errands.  We were hopeful that things would improve for him, but the chemo has really taken a toll on him and he's been bedridden since August.  He's currently at a nursing home.  

RE: Bile duct cancer, newbie here

by granitejunkie on Mon Dec 18, 2017 01:41 PM

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Hello,

My mother was diagnosed with stage four in October. She too had a drainage tube that connected to two bags outside her body. It helped keep her jaundice down, although her jaundice would spike up to 15-17.0 bilirubin count when the tubes would clog. Unfortunately, she went to the er five times in 21 days to fix her clogged tubes, and was given bigger and bigger tube circumferences until they had none that were larger. 

When my mom was very VERY jaundice (unfortunately she was never not jaundice. :(  ) mom had crazy delirium and hallucinations from the build up of toxins. Never violent, but a little out there..i.e. humanoids, conspiracies etc. At first my denial wouldn’t allow me to see mom wasn’t being quirky, mom was being crazy, so look out for your own "blinders." I know my friends had to check me several times with behavior I thought was passable but they said no way.

I hope your father doesn't have the same outcome as my mom. It's difficult to watch. Make sure you have a strong support group and take care of yourself.

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