need help

Cholangiocarcinoma - MD Anderson
Jenny,

My husband was diagnosed with Cholangiocarcinoma April, 2008. He is being treated by Dr. Ahmed Kaseb at M D Anderson - this doctor and facility are excellent. They were going to do a resection on him and remove the right side of the liver but discovered his liver was not in good enough shape. Since that time he has had chemotherapy which helped and radiation. His tumor is currently stable, and his cancer markers are slowly going downward. The things that I think have made a major difference is having a local oncologist that is willing to participate as much or as little as necessary, and for the patient and or caregiver to be involved. It is ok to read whatever information you can on this disease, but realize that the percentages are just that, percentages. You might wonder why the name WhatNext, my husband was diagnosed with Polychythemia Rubra Vera in 1999, survived endocarditis (bacterial heart infection due to a bicuspid heart valve) in 2000, survived a mechanical aortic heart valve in 2003, survived a subdural hematoma in 2006, had a pace maker and defibrallator installed in 2007 and just when everything was looking good, he was diagnosed with this cancer. Through all of this he has remained positive!

WhatNext

jennylynn25 said:

MD anderson
My lord your husband and you has been thur alot.if you dont mind me asking some questoins please. what stage was he inn when yall got the news? everyone has said its hard to get inn at md anderson. my father seen his cancer doc today inn nashville tn, thay said thay would start calling and for us to do the same to get him inn and thay wasnt sure even if thay had someone their that could help with that type of cancer. but now i know from you telling me. has your husbands spread?

thank you so very much for all of this

MD Anderson
Jenny,

As of his last scans done in May, 2009, the cancer had not spread. His doctor has never mentioned the "stage", and I have not asked. He only has one tumor and since the radiation treatment received in December and January, it has remained stable. We return to MD Anderson in August for his 3 month follow-up. My husband had already been a patient at MD Anderson for five years for his Polycythemia Rubra Vera and was on a gleevec trial. When he started having severe leg and back pain, the local oncologist could not determine the cause and requested a consult with his treating physician at MD Anderson. Because this cancer is so rare, it took from February to April of 2008, and every scan, biopsy, and test available before the final diagnosis.

You might visit www.mdanderson.org there is a section for referrals and everything else you need to know.

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