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need help

jennylynn25
Posts: 4
Joined: Jul 2009

Hi my name is jenny im 25, my father only 43 yrs was told around april/09 he was inn stage 4 of cholangiocarcinoma. im inn shock,hurt,sad,angry,scared all inn one as well as everyone inn this world that has it or going thur with it with a family member. his cancer doc had a scann done on him too see if his cemo was working about 2weeks ago and last wed we got news that hurt to my soul, it wasnt working and has spread some. he is inn great sprits and fighting for his life. we are trying to get him into (md anderson cancer center inn houston tx). if and please pray that its not too far gone for them to accpt him. i just need some feed back that someone or family member that knows info on this cancer. maybe some hope would be great

Thanks,jenny

WhatNext2009
Posts: 2
Joined: Jul 2009

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
Posts: 4
Joined: Jul 2009

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

WhatNext2009
Posts: 2
Joined: Jul 2009

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.

WhatNext

dalbr
Posts: 4
Joined: Sep 2009

Hi, my aunt has pancreas ca mets/liver, 2 months ago this information came to us. it´s too important to us (all my parents and family) suport her during her chemo and give much love, because only this good feeling can help in these dificult days. I realy hope you can suport your father and family too, maybe it´s why God give us these moments. It´s important that you remain in focus to help the person you love, change your bad feelings, turn them into work, suport and love and it will bring good results. ( and sory about my poor english) may God bless you all

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