what to expect in "end stage" of liver/bile duct cancer

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RE: what to expect in "end stage" of liver/bile duct cancer

by Solutions on Thu Jan 09, 2014 07:16 PM

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Hello sfSam111,

First of all I am very sorry to hear what your wife is going through. Sam, I am assuming you have read most of my posted messages.

I am a little surprised the medical team at UCSF suggested your wife go to UCLA for a (I assume a liver transplant) transplant. UCSF does LT all the time. But I guess they had their reasons.

Sam, I know it is hard to deal with this situation. As you know your wife is in serious trouble. Bile Duct Cancer and Pancreatic Cancer is very serious business. 

It sounds like you wife maybe in a stage IV situation and her quality of life is going down hill rapidly.

Well you asked "what is next"... Sam that is very hard to say. Everyone is different. My wife battled BDC for 7.5 years...it was good and it was bad, really bad. The last 47 days of her life at UCSF on the 9th was horrible. The doctors and the nursing staff was wonderful. They made Karen confortable with high does of med's. I stayed with Karen 20 hours a day until she ended her journey of life on December 2, 2010.

Needless to say those 47 days on the 9th floor at UCSF  was not my beautiful wife in that bed. The med's took over her life. We chose not to bring Hospice into the picture. UCSF cared for Karen for over 7 years and she just wanted to end her life under the care of her doctors and her nurses that she knew so well. They were like a second family to both of us.

Sam, what I am going to tell you next may or may not upset you. Everyone says Karen and I were so lucky to battle this horrible cancer for 7 long hard years...believe me that is total BS...We had no life those 7 years. It was an experience that I still have nightmares about. I would not wish what Karen and I and our two children went through to any body.

Sam, your wife was diagnosed in August of 2013 and she may end her pain and suffering here on earth and move onto a new life WITHOUT PAIN AND SUFFERING within the next month or two. 

Sam, stay with your wife...talk to her all the time...express your love to her...and Sam, make sure she knows it is okay to leave you...this is very important.

I don't know if this helped, I hope so.

Take care and most of all take care for your wife 24/7.

Remember Sam your wife is doing you a big favor by leaving to another level of life without cancer. You may not think so now, but believe me she really is.

Stay strong especially in front of you wife. It will be hard but keep the tears for when you are alone and not in front of her.

Again, take care,

Leonard from Alamo, California

RE: what to expect in "end stage" of liver/bile duct cancer

by amorris on Thu Jan 09, 2014 07:23 PM

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What aa beautifu presentation you made. Life with our Lord is what we all want. We are just selfish to give up life here on earth with one another.. Your words were beautiful... We are battling GLioblastoma Multiforme Stage IV Brain Cancer. As the days go on we all see what is truly best for our loved ones. I'm happy you told him to talk to his wife often and lether know it i okay to go.. I for a perios of time in beginning told my husband you have to get better... I know better and God has been walking by our sides through this journery.

RE: what to expect in "end stage" of liver/bile duct cancer

by rangani on Tue Aug 16, 2016 05:35 AM

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I know this is an old thread, but it cropped up when I searched for advice on end stage and I read what to expect. I now have the experience of going through the end stage and realise that while most of the warnings are very negative and scary, not all experiences are the same. So I am writing this in order to give an experience at the other end of the spectrum. My experience was not horrible at all. It was as peaceful as we could have hoped it to be

My mum was diagnosed and a prognosis of 3 months was given after insertion of stent to relieve the jaundice. Turned out that was an absolutely accurate. The stent worked and she had not itching until the end. She was put on a heavy doseage of anti nausea and gastric medication and did not have any tummy discomfort or nausea at all. With the liver function declining, she gradually lost her appetite. Then a few days from the end she stopped liquids. She had declined nasal feeding. We were also advised against a drip which we realise now was the right decision. When the liver and kidneys are failing, the body naturally supresses hunger and thirst. Forcing food would have caused her digestion problems and discomfort and forcing fluids to her body could have caused edema and she could have been bloated in the end and her body would have been in pain. Artifical means of sustenance which the body is rejecting would have only caused discomfort to her, though perhaps comfort to the family that life was being prolonged. As it was she was not in any discomfort. She did not need pain killers. She went into an unconscious/coma stage from end Wednesday. Just seemed to be in deep sleep.  On Friday evening her breathing became rapid and heavy. Then gurgling sounds, what is known as death rattle could be heard and her eyes opened slightly. But her face was calm An hour after that the gurgling stopped completely. Her breathing became steady. It gradually became softer and softer and softer and faded away and hour later. She was in her own room with her family at her side, with her hand in her sons hand.

Yes there were horrible days, when we had to go every 10 days for ascites relief. She was in extreme discomfort each time she had to go through the procedure. She hated it. But blessedley the fluid buildup stopped a month before she passed, so she spent the last month at home with her family. Extremely fatigued and slept most of the time, but she knew always that she was surrounded by love. 

RE: what to expect in "end stage" of liver/bile duct cancer

by itsnotaboutme on Fri Oct 12, 2018 03:54 AM

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Thank you for taking the time to share your experience. My husband was being treated for advanced recurrent non Hodgkins lymphoma when he was also found to have advanced cholangiocarcinoma. I don’t feel like I can write more now, but your words give me some peace - I wanted you to know that. Judi

RE: what to expect in "end stage" of liver/bile duct cancer

by kak123 on Fri Oct 12, 2018 04:22 AM

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i am sure you have read some caregivers posts and have realized what a difficult role it is. We wear many different hats during this process sometimes almost too much to bear. Even knowing that it helps for just a few minutes before we are thrown back into the role. We all feel your pain, loss and frustration. I know you have heard that you need to take care of yourself but that is easier said than done. I have been able to take walks, fast, non-thinking walks that seems to burn some of the anxiety that goes along with our helplessness. At the very least I hope you can burn some of the negative energy. If you are able to take longer breaks that would be wonderful for you. I have been able to do that a couple of times and it helps while I am gone but all rushes back as soon as I cross the threshold. Local caregiver support groups can be of help and at the least there is a sense of commradery.

as you can see, there are no easy answers. I hope you at least have hospice help and not to wait too near  the end.

I will keep you in my prayers

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