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Kris, your post reduce me to tears, although I am not the patient. I hope I can as brave as you are, and have the faith as firm as yours. It’s hard to describe my feeling by English ( My native language is Chinese ), but your words really touch me deeply, and give me another point of view of how to face my mother’s bile duct cancer and this difficult fight.

Thank you…

Julia, I am sorry to hear this news. Due to my English isn’t quite good, I come to visit this website very often, but post rarely. But I feel I need to reply your post this time.

I don’t know why the doctors give up to do a resection for your sister? why didn’t they remove the tumor appeared at liver simutaneously? Or the liver tumor is closed to portal vein?

As I know, if the tumor appear at the liver, they can remove bile duct and partial liver. Originally, my Mom was planned to do such kind of surgeory, but failed. My mother’s cc has been meta to right lobe of liver and form two tumors, one is 6 cm and the other is 2 cm around. The doctor said they will remove the whole right lobe and the bile duct. Unfortuately, after laparoscopy, they found peritoneal metastasis, so they give up the resection option.

So, do you want to search for the 2nd opinion? If your sister only has one tumor appeared at liver, I think it should be resectalbe.

I hope you can understand what I mean. I really hope your sister can have a resection surgeory……

Ed P, could you give us more information about your cancer? From CT/MRI/PET, what did your doctor see? What did your blood test show? How about your liver and kidney function? How old are you?

My Mom was 60 years old and diagnosed with cc, stage IV on July 31. In the beginning, I felt so shock, and I also want to give up treatment. I think quality of life is more important, so I hope my mother try to use Chinese medicine, Qigong, eating lots of vegetables…. ect to control the tumor. Afterall, if those method does’nt work, they won’t severly effect my mother’s life quality.

But after I found this website, I found there are still some people prolong their life with good life quality by receiving medical treatment, I started to feel I shouldn’t give up so quickly.

Actually, my mother has received 5 times of chemotherapy with 5-FU regime. She has no severe side effect, although her CA19-9 seems keep going up. Until now. my mother looks good. Besides, she is too young….. For me, it’s hard to say ” give up ” now.

I think your family don’t want you to suffer from unmeaningful pain. But they feel your situation is not to bad and it’s worthy to try to receive more agressive treatment.

I hope you can read more posts on this website. Maybe you’ll find there’s still some hope for you.

Thank you, Louise.

I tried to searched Dr. Valle JW, the major investigator of this study, on the Pubmed website and I found the Phase II trial has been published on the British Journal of Cancer in August. In that paper, they mentioned in Phase III study, patients’ CA19-9 and quality of life was observed. In Phase II trial, they only check the treatment response by image.

Hopefully, they will publish the Phase III trial very soon, I truely want to know in their study, can CA19-9 reflect tumor progression very correctly?

Thanks for Marions’s posting. I’ll bring this information to discuss with my Mom’s doctor.

Elicia, I know your pain and how you are feeling. My Mom is accepting chemotherapy for stage IV cholangiocarcinoma now. She was diagnosed on July 31. At the begining, I searched information about cc on the website, and I found it seems nothing is effective for stage IV cc. But later, I got more and more information, and found it seems still has many methods are wothy to try. Although from literature search, I found almost all research paper recognize chemotherapy is “ineffective” for cc, my Mom still wants to try it.

Originally, I prefer to give up chemotherapy. Because I am afraid of that if Mom only has few month to live, I don’t want her be very weak and uncomfortable. Since the research paper shows chemotherapy is “ineffective”, why we still need to try it? At that time, I was very struggling with should I make a decision for Mom or let her make choice by herself. Until now, I still has such kind of problems, for example, using Chinese medicine or not, doing Qigong or not, eat some supplement or not….

I think maybe this kind of struggles is a path that we ( Patient’s family )all have to walk on. I am very sorry for your Mom passed away, but I still hope you can release your sorrow soon. Just like jmoneypenny wrote “You did the best you possibly could, and she loved you for it.”