Cholangiocarcinoma Inspiration (I Think I Am)

Hello my name is Beka I am 33. When I was 32  last yr 06 in May I was diagnosed with cholangiocarcinoma. I was told it was inoperableand was told that sometimes this cancer doesnot respond to chemo but they said we were goingto try. I was terrified and morbidly depressed.

I am oneof 40% that respond positively to c hemo (I'm on epirubicin, cisplatin and flourouracil) my tumor after 6 treatments has shrunk from 11cm down to 6 cm. Now I'm on  a maintenance plan. Having Flouro on ts own.   My oncologist calls me her miraclegirl. I am allowed to  do some teaching with kids now as my immunity is better not being on the otherharsh chemos. I have a  fantastic quality  of life andI have heard of a guy who has the same cancer as me on the same treatment and he is  still going after having this cancer for 14 years.There is hope. I know there arepeople outthere suffering. This is my first time on this site this is the first  time I ever typed cholangiocarcinoma ingoogle. I have been afraid all this time. All I can say  is my heart goes out to everyone being impacted by this disease. I have been praying for everyone else who is suffering from or impacted by cancer . I hope you all keep praying  too. It helps as itreally comforts me  I  hope I give hope to you.

Sincerely, Beka

On 1/19/2007 Bekac wrote:

Hello my name is Beka I am 33. When I was 32  last yr 06 in May I was diagnosed with cholangiocarcinoma. I was told it was inoperableand was told that sometimes this cancer doesnot respond to chemo but they said we were goingto try. I was terrified and morbidly depressed.

I am oneof 40% that respond positively to c hemo (I'm on epirubicin, cisplatin and flourouracil) my tumor after 6 treatments has shrunk from 11cm down to 6 cm. Now I'm on  a maintenance plan. Having Flouro on ts own.   My oncologist calls me her miraclegirl. I am allowed to  do some teaching with kids now as my immunity is better not being on the otherharsh chemos. I have a  fantastic quality  of life andI have heard of a guy who has the same cancer as me on the same treatment and he is  still going after having this cancer for 14 years.There is hope. I know there arepeople outthere suffering. This is my first time on this site this is the first  time I ever typed cholangiocarcinoma ingoogle. I have been afraid all this time. All I can say  is my heart goes out to everyone being impacted by this disease. I have been praying for everyone else who is suffering from or impacted by cancer . I hope you all keep praying  too. It helps as itreally comforts me  I  hope I give hope to you.

Sincerely, Beka

Beka,

That's awesome-what an encouraging word. My mom has intrahepatic - What type is yours? They also can not operate because the tumor is to large and is covering the arteries. She is taking chemo- Gemzar & also radiation. Thank You for giving us hope - I will also be praying for you & your family. Our hope is that God will work a miracle in her life as well - she is 62. If you have any new info- please reply back

Thank You

Donna

Call Dr. William Chapman at Washington University in St. Louis MO (barnes-Jewish Hopsital/Siteman Cancer Center for SAdvanced Medicine, or contact M.D. Anderson cancer center in Texas. They have new techniques for dealing with unresectable cholangiocarcinooma. Dr. Chapman is doing a technique that had very promising results at Mayo Clinic that ends up with a liver tranbsplant. M.D. Anderson has very exciting trials of new drug combinations that may wipe out solid tumors like yours. You have to call and try to get into one of these programs. My wife is in at St. Louis. Also the University of Michigan has a study where they add a new drug called DAVANAT with 5FU Chemo. They are recruiting patients now. DAVANAT is one of the new agiogenisis drugs that destroys the tumor blood supply and thus the tumor. It is a bile duct cancer study for unresectable tumors.

wayne parsons

honolulu