Any suggestions…brother is to sick for treatment…what now?

Alglog, my mother also has a stent and was told repeatedly to cap the drains but everytime she did it made her very sick. When you cap off the drains it keeps the bile inside you which is needed for digestion but when she closed them off it backed up insider her and made her very ill. Her alternative doctors told her to leave it open and listen to her body as that is the only time she felt better so that is was she did. They tried to take away her external drain bag since they were convinced the mental stent inside was working fine but she insisted on keeping the drain bag so she could control clamping and unclamping. She leaves it open all the time now and feels quite better. She was also rejected for chemo and radiation because they thought she was too weak, in fact they only gave her 2 months to live but now 5 months later and after herbal supplements and heavy accupuncture therapy she has regained her color, maintained weight and gotten back some energy. On her lost oncologist visit they said they were very impressed by her improvement and are now going to start her on some chemotherapy! There is always hope. If he feels better with the clamp open keep it open and talk to his doctor.

good luck!
Janet

Hi Alglog,

Welcome to the site. Sorry that you had to find us and I am sorry to hear about your brother Gabriel. Did your brothers doctor say why exactly Gabriel is no longer a candidate for a lover transplant. I find it strange that hospitals won’t accept your brother because of his health and bilirubin levels. I can’t help in recommending other hospitals as I am in the UK. But here are some links that may be of use to you.

Here is a list of some of the major treatment centres in the USA –

http://www.cholangiocarcinoma.org/majorcancercenters.htm

And here is a list of treatment centres and physicians that was created by the members here –

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126

Hopefully some of these will be of use to you in finding a hospital for your brother. Please keep coming back here and we will do what we can to help. And if you have any questions then ask away and the great members here will do what they can to help in answering them. I so agree with what Lainy and Susan have said about seeking other opinions, and also about finding out as much information as you can about cholangiocarcinoma. The more information you have the better informed you will be. Please let us know what happens on Monday.

My best wishes to you and Gabriel,

Gavin

Dear Alglog, welcome to our wonderful family but sorry you had to join us.
It is extremely important to find out if Gabriel’s Oncologist has treated CC before. We strongly urge 2nd and 3rd opinions. The higher bilie rubin could be due to an infection in the stints or the cancer itself. Honestly I have never heard of a hospital turning down a patient because of high B.R. I really think you need to see another doctor. Has Gabriel’s doctor mentioned Chemo or other treatments? I don’t understand why he would cap the drains. Plese read up as much as you can about CC, you can even google it on the internet or look at our past posts on this site. Knowledge is powerful. Also there are quite a few members here who have had liver resections successfully with CC. I am very sorry but something just doesn’t sound right to me. Who is going to the Hospital Monday with Gabriel for his stint exchange? I would make a list of questions for the doctors and I would also take a tape recorder or write down what they tell you. Please keep us posted and let us know how Monday turns out.