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

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

by Paulina777 on Tue Aug 23, 2011 04:59 AM

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Was told today, mom has only weeks left...

she's been battling cholangiocarcinoma since 2005. She had chemo and radiation the first 2 years. and ercp every 6 months to change her stent in bile duct.had occasionall fever and chills.but for the most part has been doing great until past 2 months. her ailments started with a persistent cough, then ascitis fluid in belly (that turned chylous), hand tremors, nausea, choking on fluid from bile, vomit, pain in back and abdomen.

We have been staying in hospital for past month. doctors have her on tpn nutrients. she had a lymphoscintography done few days ago, then today she had a laproscope done. after her surgery, the suergon told me her cancer metastisized! i dont want to put her through anymore chemo or radiation. i dont want her to suffer anymore than she has...and worse i dont know how to tell her she doesnt have much time left... she has been very healthy and athletic all her life. never took anything more than an aspirin and rarely got colds/sick. she is the strongest person i know..

is there anyone here in simalar situation. what should i expect at this stage?

please i would greatly appreciate any advice ..

thanks and God Bless all of you !

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

by Midwestgirl on Tue Aug 23, 2011 02:37 PM

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Paulina,

I'm from the pancreatic cancer board, and I just lost my dad to pc 7/30/11, so I know what you're feeling.  Dad only fought for 4 months.

Where are they saying your mom's cancer has mestatisized to?  Since she has a cough and ascitis in her stomach, do they think it's in her lungs and stomach?

For the month of July, my dad was very sick with nausea and vomiting.  He was on Hospice since this last April, and they couldn't get the nausea under control with any kind of drug combination they tried.  It was so awful!  He couldn't take a sip of water or anything during July, and it would come back up.  He vomited up bile mostly - truly a foul-smelling substance.  He also had the pain in his abdomen.

I really don't know how you would break it to your mom that she doesn't have much time left.  My dad actually asked his doctors and was told a timeframe, so I didn't have to break the news to him myself. 

Is there any way you can approach your mom about Hospice care?  They could help with medication control and helping you keep your mom comfortable during her last weeks. 

I don't know what else to say, Pauline, except that I'm sorry you're going through this.  I am praying the best for you and your mom.

Love and (((((HUGS))))),

DeAnne

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

by Paulina777 on Fri Aug 26, 2011 07:18 PM

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Dear DeAnne Thanks so much for taking the time to send me a message. I can't tell yOu how sorry I am for your loss. Its much worse seeing them suffer more than anything else . I'm hoping my mother passes before she gets any worse. She is going through the same your dad did. When she eats something, she ends up vomiting it . Dr doubled her nausea meds, she takes them every 4 hrs. She is a little better with this. But she can't breath as well now... We are leaving hospital tomorrow , after being here for a month. They sending her home with oxygen. I never thought I would see this day. She was soo athletic, full of energy , and very independent ..too independent . Hospice nurses will be here in the a.m.. ( we will leave hospital tomorrow ).From your msg , looks like you already went through this..I'm so sorry, I really am . You never know what someone goes through in these cases unless you experience it yourself. May your dad rest in peace and forever watch over you and your family. I pray you find strength and comfort in his passing. I send you many many hugs :) you strong woman :)

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

by Solutions on Sat Aug 27, 2011 05:12 PM

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Hi Paulina,

This is Leonard from Alamo California. I believe I chatted with you in the past, but I can not find the post.

Your mom is ending her journey of life. She battled this horrible cancer well. Karen (my wife) battled it well also...from 2003 to December 2, 2010.

Paulina, the final days will be horrible. This cancer is deadly and the med's they need to give your mom is not much better. She will say and do things that will bother you, but remember it's really not her talking.

Stay close to and keep telling her how much you love her. There are times she won't understand you...but keep telling her.

I hope she leaves this life soon. At the end Karen went into ER on October 25th and it was the longest 45 plus days to the end.

Stay strong, I know it's hard and it will get harder.

Take Care...Be proud of your mom, she is in a rare group that handled this damn cancer so long.

Leonard from Alamo California

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

by glennieday on Mon Aug 12, 2013 08:47 PM

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My Mom is really sick and has CC.  It has been so awful. As you stated about your Mom, she never had more than a couple of asprin. My Mom's a phenomenal woman and I just dont want the end to be bad for her.  did you have Hospice in place?  I cant even think right now.

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

by Solutions on Tue Aug 13, 2013 12:15 AM

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Hello Glennieday, It appears by your meaasga eyou are not addressing your question to me Leonard (Solutions). Well either way...if you read my comments you will learn about what's next...you will also learn what's next from all the many other comments on this site.

Hospice is a good choice...I did want Karen in that environment. The Director of at UCSF granted my request to allow karen to end her joyrney of life on the 9th floor at UCSF Medical Center.

This is a horrible cancer especially the last 10 to 20 days. Your mom will not be your mom.. she will do and say things you have never heard her say before...it will hurt you but remamber it the cancer and the medicine talking NOT your mom.

Take care,

Leonard from Alamo Ca (aka Solutions)

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

by Paulina777 on Wed Aug 14, 2013 03:39 AM

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Hi Glennieday, I feel your pain. I'm so sorry. The best thing for your mom is to go home on hospice. The most important thing is to keep her a comfortable as possible and to be able to spend as much time with family as possible. My mom came home from hospital on hospice last week of august and past on October 22. I can't tell you how horrible it was to see her suffer. The hospice nurse would come by for an hour ( or however long needed) every afternoon, but the worst happened between midnight and 9am. Those were the hours she suffered the most. I suggest looking into a private nurse ( cna) to stay overnights in case needed. I regret waiting till her last week to do this. Keep a log of each day, like a journal , the time you give her meds, her reactions, temps, pain level etc. I know how hard this is for you , but you have to be strong for your mom.tell her you love her constantly, hug her and kiss her , shower her with love... I would give anything to have just one second with my mom. It's so difficult to read and respond to messages here but these message boards helped me so much with information and support. For this I am truly thankful. I hope I was helpful in some way. You and your family are in my houghts and prayers. Sending you big hugs and strength your way!. Keep in touch ! Sincerely, Paulina

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

by Justined on Thu Aug 29, 2013 12:19 AM

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To Paulina: U wanted to know what to expect in the end. Check out my July 10th post under caregivers. It spells it out pretty well. I'm glad u got hospice. There's really no point in putting ur mom thru all kinds of tests and procedures in the end. My mom was given 6-8 months and she died in 7. We got hospice right away, no more hospitals or docs, and she died it my home. I have no regrets. God be with u to give u strength and patience. And don't be afraid to tell her it's ok to let go. When my dad died from ALS in '99, he died the day my brother and I told him he could let go.

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

by Solutions on Thu Aug 29, 2013 12:49 AM

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Paulina, With all due respect to Justined...forget what he/she is telling you. Your mother does not have cancer in her stomach. If she did what Justined is telling you is true.

But as I remember she does not have a cancer tumor in her stomach.

Take care

Leonard from Alamo Califorina.

I believe I told you what to expect...

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

by sfSam111 on Thu Jan 09, 2014 12:44 AM

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Hi

I need to know what to expect going forward. My wife was diagnosed with cholangiocarcinoma in August and UCSF sent us to UCLA for a transplant. At the end of October we got the answer from UCLA that she did not qualify for a transplant because the tumor had spread to the bile and pancreatic ducts.

Mid November, she had a gastrojejunostomy because she could not eat and was not strong enough for chemo.

Early December was still not strong enough for chemo and a PleurX tube was inserted to drain ascites fluid.

Christmas eve the internal medicine team and palliative care team told us she probably still would not be well enough for chemo in January, and we started Home Hospice late December.

we canceled an appointment with the oncologist after conferring over the phone that chemo would probably hurt more than help.

She is at home. She can walk around, sit up and talk.  She eats and drinks, although in small quantities.  we drain the ascites daily. it's hard to believe that she has so little time.

My question:  how can it be that she only has 'several weeks' left?  what can we expect going forward?

thank you

sfSam111 

San Francisco

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