Cholangiocarcinoma

Hello everyone,

I have posted on this section and on the gallbladder cancer section. My wife, 47, has stage IV, diagnosed in April. She is on a clinical trial of rebeccamycin and oxaliplatin at University Hospitals in Cleveland, Ohio. Her doctor is Asfin Dowlati.

Only one round but my wife has improved dramatically. The doctor had one other gallbladder cancer patient on this study and he said they responded also. See my other posts for more info. My email is wamba138 at hotmail dot com if you want more info.

Good luck and keep fighting!!!

Rick

Who was the doctor?

My doctor was from Lahey Clinic in Burlington Massachusetts. Dr. Roger Jenkins. He has been named by the American Liver Foundation as one of the top surgeons. If you need any other information, please feel free to email me. My prayers are with you

Hi Elizabeth,

Mayo Clinic in Rochester, MN has a program of liver transplant for cholangiocarcinoma. It is the only institution in the country which has an ongoing study and evaluation of liver transplant for cholangiocarcinoma. Their 5-year survival is about 80-85%.

Don't feel disappointed is you are told that the cancer is inoperable because that is the nature of cholangiocarcinoma at the time of diagnosis. As long as it does not spread outside of the liver or bile duct and gall bladder system, your brother may be a candidate.

You may also like to check with Mayo Clinic in Florida and Arizona. Their waiting period for transplant may be shorter.

Good luck.

hi suzieb;
i just read your message about the lahee clinic.
my mother has bile duct cancer, the doctors tell us that it could be cholangio but we are not sure until she goes into surgery. i spoke with dr. Jenkins from lahee today, he was recommended to us from our surgeon (to go to for a 2nd opinion), now we are torn. We really liked Dr. Jenkins and were impressed with his credentials. Can you tell me your experience with Dr.Jenkins and also how are you doing now?
thanks and God Bless!!
polina

Sue,

I came across your posting this evening, and wish you continued success in your treatments and your recovery. After reading your post, I was reassured a bit, as my uncle was just diagnosed with Bile Duct Cancer, and is currently under care at Beth Israel in Boston. Unfortunately, he was also told that it is inoperable, but after reading your post, my family is in the process of contacting Dr. Jenkins at the Lahey Clinic in the hopes that new avenues may be looked at.

I thank you.

-Eric

Eric:
I know how hard it is when you are going through the process. The main thing for your family to remember is that if one door gets closed to you, another one will open. I will pray that Dr. Jenkins is able to help you all. I am due to see him 12/6 as my 1.5 year check up. I had labs done last month and they were still good. Believe me, if Dr. Jenkins can do anything, he will. He is the most caring physician I know. He was just recently honored by the American Liver Foundation for his work.
Please keep me posted. My heartful prayers are with you.

Jeff,
Could you please send me the info you were referring to about possibly effective treatments for bile duct cancer? My 79 year old father has just been diagnosed with it. We are going to try to seek a specialist at UCLA. We did not yet know what his prognosis is, but the doctors do tell us, it appears to have metasticized to h is lungs so this makes surgery virtually impossible. Any help would sure be appreciated.
Thanks and God bless.My e-mail address is : --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---

Jeff,

I would love to get a copy of the research you did. My wife was diagnosed on 10-21-05 with Colangiocarcinoma. We found out two week’s ago that it’s stage 4 from the laproscopic surgery and surgery to remove it is out. She just turned 37 and we have three boys under 6. She will get her third round of Chemo next week.

Thanks for being such a good resource!!

God Bless!!

HI SuzieB,
I am so glad to hear that you have been successfully fighting your battle with bile duct cancer. My father was recently diagnosed and is 79 years old. It was a total shock for us considering the fact that he has been running 3-4 miles a day, and eating healthy for most of his life. From reading the message boards and your letter, it sounds that some treatments do help, but the doctors say my dads cancer has already metasticized to his lungs ( they have found a few nodules there) and therefore he is an unlikely candidate for surgery. Had your cancer travelled to other organs or areas when you received treatment , or was it isolated to the bile duct? Any help from anyone, would really help me. Thank you and good luck to you.
Linda