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HELP... Cholangiocarcinoma

Maan Thiab
Posts: 1
Joined: Nov 2011


My father (55 years old) was diagnosed with cholangiocarcinoma on October 3rd 2011. We had severed jaundice. His right and left hepatic bile duct are completely blocked with the tumor. They have attempted to place the stint. But unfortunately, it didn’t work. They have installed a drain from his liver. His bilirubin level is only going down very slowly. The doctor says we have to wait until the biliburin level gets back to normal before we can process with chemo. We have been waiting for over a month now and his biliburin level is still very high. They have not given my dad anything but anxiety pills to help him sleep through the itching. But even with dad, my dad sleeps less than 3 hours a day from the itching. He is unable to sleep or eat. He has already fainted twice ever since. They said it was a body shock due to the lack of sleep. He is sometimes very cold, freezing and sometimes he feel very hot and he is burning. He is scratching himself until he bleeds. His whole body is full of scales. I don’t know what to do. I feel so hopeless. I was reading some of the stories up on the site. It seems like everybody was given some sort of medication to treat either the jaundice or the cancer. But my father’s doctor has given him nothing at all. I need help or maybe some answers. I cannot stand and watch my father die just like dad. I need to help him. I need to find a way stop the itching in order for him to sleep and be at ease. PLEASE PLEASE PLEASE…. I am begging for some help! My father is a great man and he doesn’t deserve to suffer like that. The itching has destroyed him. He doesn’t even have energy to fight the cancer!

Thank you all in advance

LeeandShirley's picture
Posts: 122
Joined: Apr 2011

I am so sorry to hear about your father's diagnosis. It is a very serious disease. My advice to you is: If you feel your father is not getting the help you want for him, go to another doctor. Second opinions are very often recommended by insurance companies and even by the first doctor to diagnosis the disease. You are not alone in this and you also need to gather together other family members to support you. Perhaps a consult with a dermatologist or someone who can deal with the itching problem. It is not good for your dad to be scratching till he bleeds because of the chance for infection. God bless you and your dad and I will be saying prayers for you.

Posts: 1
Joined: Dec 2011

Hello - I am 64 and was diagnosed with intrahepatic cholangio on dec 13, 2010. I am on my third oncologist and I LOVE him. CHANGE doctors.

I did not require a stint, but my tumor was 11 cm. Had traditional chemo in Sacramento, where I live, for 4 months. Temporarily moved to Los Angeles to be part of a drug trial in Santa Monica. That did not work, either. But I DID meet a fabulous oncologist at Cedars-Sinai who has had me a new cocktail of old drugs - gemzar, oxaliplatin, and rapamune - and kidney transplant immune suppressant that supposedly makes gemzar more effective. I've been in treatment with him since mid-October.

If I can ever get my fever under control, I will have chemoembolization - not fun - but the thought of not having chemo after a grueling year is very appealing.

Posts: 4
Joined: Oct 2011

Dear friend;

I am helping my Mom who has bile duct cancer. She is 76. Had a stent put in. Although she lost weight she feels good. She will start the normal chemo this week. I hope you are able to get the chemoembolization. Can you share some information as to why you are on #3 oncologist. My Mom does not have the same cholangio - I think hers is outside the liver.
Do you email friends outside of this board?
Thank you so much.

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