My Mom Has Intrahepatic Bile Duct Cancer

Is there anyone out there that has intrahepatic bile duct cancer. My mom was diagnosed in January. The doctors say they cannot operate because the tumor is to large & covering the arteries. They said she would bleed to death, if they operate. She is currently taking chemo-Gemzar & radiation.

The radiation is five days a week & the chemo is one day a week. If someone knows anything about this cancer - Please advise. My mother would love to  talk with someone that is going through a similar cancer.

Thank You & God Bless you

Donna

On 2/10/2007 Donnaatgrace wrote:

Is there anyone out there that has intrahepatic bile duct cancer. My mom was diagnosed in January. The doctors say they cannot operate because the tumor is to large & covering the arteries. They said she would bleed to death, if they operate. She is currently taking chemo-Gemzar & radiation.

The radiation is five days a week & the chemo is one day a week. If someone knows anything about this cancer - Please advise. My mother would love to  talk with someone that is going through a similar cancer.

Thank You & God Bless you

Donna

Hi Donna,

I believe this is the same bile duct cancer my mom is going through....Cholangio Carcinoma?  She was diagnosed 1 1/2 yrs ago.  It's extremely agressive. it had grown in 3 months to 9 cm and was almost too large to remove however, they did remove 60% of her liver...put her on a low dose of Chemo for 6 months and 6 months later it returned in her pancreas. They removed most of the pancreas and mom didn't recover well from the second major surgery and then last summer it returned in several places, her kidney, stomach, liver and possibly her lung.  We are afraid it continues to spread. 

 I have tried to find as much research as possible but have been frustrated because there isn't much info and there are not many clinical trials as it is so rare. 

Best of luck to you and your Mom and God Bless you both.

Donna

I know this is a leap of faith but you need to get your mom on DAVANAT.  They just started dosing patients last month.  Your mom would have been the perfect candidate and quite frankly she would have been well by now.  The drug works or doesn't work fast and it has no toxic side effects.  The speed in which it works is dependent upon a lot of factors but it is a targetted therapy unlike gemzar. 

 The manufacturer is PRO Pharmaceuticals and they have a trial site at the U of MI.  I would totally investigate this.  Forget investigate - just do.  They have a trial for people with unresectable Cholangiocarinoma.  Your mom fits the profile.  They take only naive patients - patients without chemo so I'm not sure if the gemzar screwed this up for you.

 If your mom cannot get into the study - have her hold on b/c this drug should get approval soon I hope for everyones sake and then you can tell your doctor what to do. 

TopGun,

Have you had someone in your family with this same cancer or are you the one? I'm sorry I haven't read a message from you - so I wasn't sure of the story. Thank You for the information - I will follow through on this and see what happens- Thanks Again

Donna

I am interested in any information on growth rates of this cancer. My wife (age 56) was opened up yesterday (16th May 2008) to check for having the tumor and a part of her liver removed and was told the tumor had spread to the liver and a spot on the stomach wall. Now, the problem is no one is saying how fast this grows or has been growing and have told us less than a year is expected. I cannot get an intelligent answer to the query that since it was first discovered back on the 1st March 2008, how much might it have grown over the last 2 & half months. When discovered it was 1 cm. Would it have been unresectable back then. 

I appreciate this is a particularly unknown and rare form of disease but when I read of others having a tumour of much larger sizes, how come a small one at 1cm is suddenly so problematic.