Cholangiocarcinoma

Hi, my name is Elizabeth -- my brother was just diagnosed with cholangiocarcinoma - he's 48. I don't know too much about this cancer except it's rare and spreads fast. I feel so helpless -- his doctor prescribed my brother some chemotherapy medication (oral) but his doctor told us that this is not a cure that the chemo medication will or might slow down the growth but there is nothing else to be done. I'm having a hard time accepting this... there has to be some type of procedure out there that can help. If anyone could help me with some information, I would deeply appreciate it. As you all know, this is very hard to handle.
Again; thanks for any info I can get.

Hello Elizabeth:

My husband was diagnosed with Cholagiocarcinoma in Dec 04, he is 56 yrs old. It had also matastazised to his spine and pelvic, we have learned that this cancer is at stage 4 by the time it show any symptoms, He had major back surgery in Dec 20, but he was home for Christmas and sat at the table for dinner, this in itself is incredible. We went to 3 different hospitals and the diagnoses was the same. He was given radiation and chemo (oral). The chemo did not work, so now he is in at trail test which is not chemo. He is doing ok except for the pain in his back. He has had 4 stent replacement in 10 months, the last one was a metal stent which is working much better than plastic. The last radiation treatment he had for the cancer on the pelvic bone has given him a great deal of pain which we are trying to control with breakthrough medication. The prognosis's for this type of cancer is not good, but do not give up, there are always new drugs and treatments coming that will hopefully help. We talk and pray and take each day as a bonus. We had our oldest son's wedding in July and we did not think he would make it, but he did and looked wonderful that day. We always try to look ahead with positive thinking and planning for our future. Never give up there is always hope. Keep him thinking positve this may be 90% of the battle. Good luck and God bless

Hi Elizabeth- My father was recently diagnosed with cholangio also. His turned out to be inoperable which was devasting to the entire family. We are actually at UCLA medical center in California right now so he can have stent put in to drain his bile because his duct is blocked by the tumor. There are many options(not all have proven effective) in treating cholangio. I saw a message from Jeff S. on this message board by going to Google and typing "cholangiocarcinoma treatments at UCLA" I think it was on page 2. He said that he has compiled a month's worth of internet research that he will share with anyone who is interested. I am still trying to contact him regarding his info. There are a few things that are keeping us strong-doctor's are human, they make mistakes, they don't know everything, different doctors have different treatment ideas, there are many different types of chemo- if one does not work, try another, if chemo/radiation doesn't work, there are clinical trials, prayer works and miracles do happen. Cholangio is a very serious type of cancer with a low survival rate in most, but if you look at the different message boards, you'll see there are many people still going strong after having this disease for quite a while.

I hope this helps and my family's prayers are with yours.

Elizabeth N.

If you send me an email address, I will send you all my research on cholangio and pancreatic, which are close cousins and often treated with the same chemo. You can contact me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---. My wife is being treated in Brooklyn with 5 different drugs simultaneously. So far, so good. Hang in there. Jeff S.

Hi Elizabeth: I was diagnosed in May, 2004 with bile duct cancer. After being given the news that it was inoperable by a Boston hospital and confirmed by an oncologist, I was lucky enough to be given a surgeon's name from Lahey Clinic in Burlington, MA. This area of the anatomy is his forte and he operated on me in June, 2004. I lost one lobe and half of the other at that time. By September, the remaining lobe had gone back and was healthy. I celebrated my first annual check up with great numbers. I was told that there really is no chemo or radiation treatment specifically for bile duct cancer. They use the pancreatic cancer treatment as a model.
My surgeon is well known for his procedures and has been doing it for a long time. He is also the pioneers for liver transplants in this area. I am so lucky to have had him. I am 54 years old and have been able to see three more grandkids born and a fourth on his way. I thank "God" every day that I am able to swing my feet over the edge of the bed. I had alot of people praying for me, and keeping my thoughts positive. It is very important to do. If I can help in any way to you or anyone else, please let me know. My prayers are with you and your family.

Hello
First off I am very sorry to read this. I havent been on this site in a while. I know all to well what you are going through. I have writen on this site before. My wife (34) had Cholangiocarcinoma. We discovered it while she was pregant with or son last 2-17-05. I lost her on 7-9-05.

Make sure you have got lots of information as I can see you are trying to do. If they can remove the tumor and chemo treatments he has better chances. But there is a chance it could come back. If that is not he case as with my wife all I can say is prepare yourself and family.

I made it my job to make sure that my wife had good food and little snacks. I found that homemade protein shakes, with weightgain powder and fruit were good to keep the weight on. I blended it with Kerns juice. Chemo makes you not want to eat so small easy to swallow meals helped her. But the cancer itself is a protein eating cancer. He will lose weight even if you are doing everything. So I really tried to made meals and shakes that had lots of protein.

Above all I made sure that she had a goodtime and stayed positive. I wanted to make sure that she had time with me and our son.

Our goals, which I think are extremely important to make, was to prolong her life as along as she was comfortable. For us we felt we could get a year cause she was so young. That wasnt the case. But her being at our sons baptism was a goal. And SHE DID IT! Another goal was to make sure that everything that needed to be done was finished and writen down way before her time came.
We also didnt want to be in hosptials cause we spent so much time there. Home is such a better place to be.

What type of Chemo is he on? Has it spread? With my wife we knew she had it but we were limited in what we could do as far as tests. So After his birth a cat scan had shown it had spread other places so surgery was out.

Again i am sorry to read this and dont want to paint a grim picture but you need to know what to expect. Doctors dont always tell you how or what to expect. You must be optimistic but still face reality. That is the only way I made it. Respond if you need more information.

I lost my dad on the 21 August 2005. He started feeling ill in June this year & developed jaundice, which the consultant first thought was being caused by a gall stone blocking his bile duct. After many many weeks of scans and tests, they said it was cancer. They said the cancer had spread to his bones, liver, lymph glands and stomache etc, they could not cure him but when they found the main cancer they maybe be able to treat. They thought at first it was prostate, then pancreas & then finally bile duct. It was too late to do anything for my dad. After three weeks in hospital, he was allowed home. He arrived on a Monday and died the Sunday of that week, with his family by his side. He was 56. I miss him so much and feel so angry that it was diagnosed earlier, but they said he hadn't ignored any symptoms and that it could have been developing for upto 2 years. My dad was a dairy farmer.

Joanne
I feel your pain. I read your post and it was almost the same as my wife. I posted or story a few days ago. They thought it wasgallstones as well. They felt it couldnt be Cholangiocarcinoma cause she was only 34 years old. But they ran what tests the could and nothing. THey placed a stent in to drain the bile duct 2 times. The second time they noticed some bleeding in the area. Which raised the questions. Until we had a Ultrasound ERCP done which they were able to see and take a sample we werent sure abou it. Then it was wait and see cause she was expecting our son in April. He can March as planned for a early C seciton she we could work on her. But to late. She passed on 7-9-05. So a terrible nasty cancer. Just takes everything you have so fast. My wife was teacher as I am as well. However lots of her family are Dairy farmers as well.

I was so sorry to read about you losing your wife so young, I myself am 35. I also have a son, he's 8 years old and is called Jonathan, the name Jonathan means "Gift from God" and he really is. He has been so supportive to my family whilst my dad was ill, and after he died. All you can do is enjoy your son and look to your future together. Take Care.

Joanne

Hi
Yeah I look at my son everyday anf think about my wife. Today we went and did 6 month pictures for him. It was great but I found myself thinking about her as we finished them. You speak about names. We named our son Joseph cause we felt that the religous connection would help us.
Everyday is hard. Now even more cause it is football season and my wife loved HS and Pro football.