Cholangiocarcinoma

Jeff,

 I was hoping you could send me your research.  My father recently underwent his second surgery for a recurrence of his bile duct cancer.  We were told that it could not be removed completely because of its association with the blood supply to the liver.  The tumor was about the size of a baseball and had also affected the stomach and small intestine to a small degree.  They ablated what they could but said they could not ablate the rest because of the location of the tumor and the blood supply to the liver.  He also said transplant was not an option because there would be no surgical way to remove ALL of the cancer and therefore it would flourish outside of the new liver because of the immuno-suppresant drugs.  If you have any information that might contradict this or any new information that our doctor is not aware of I would greatly appreciate it.  I would also like to see your research that other people have been posting about.  My email address is CAPerry at gmail dot com

You mentioned an equivalent to SIRspheres. 

I was diagnosed with cholangio in Oct 2005.  It was only seen in the liver at that stage although there were a few odd spots in the right lung.  The size and location of the mets ruled out resection so I had SIRspheres on 19th Jan 2006.  There was some pain when the spheres first "hit" the liver but that was expected and a dose of something on the table fixed me up.  Appart from throwing up orange juice the next morning there were no side effects.  CA19.9 readings fell progressively until I started a chemo course  (this looks like it was a met on the left hip - found later when I arranegd a PET scan for myself).  6 cycles of gemcitabine + cisplatin plus 20 Grays of radiation on the hip brought the CA19.9 antigen level down to the top olf normal range.  This held for 3 months then started climbing again just before Xmas.  I have just started on gemcitabine + 5FU (to avoid a build up of toxicity with cisplatin) and wait to see how that goes.

The SIRspheres have shrunk the original tumour to about 25% of original size and on the PET scan it reports as being "not glucose avid". 

Richard:

I have not been on this site for a very long time.  How is your wife doing?  I posted a new message called Good News.  I did have a second operation in 2/06 by Dr. Jenkins and now I am working on being cancer free.  We were a little concerned last February because the remaining liver had some spots but now everyone seems to agree that they are healthy liver spots showing through a fatty liver. 

I pray things are going well for you both.  Please reply if you are still visiting this site.

Sue

Hello Sue

Dawn is doing well almost 20 months after her resection. It has not always been a smoth journey, but as of her CT scan results last week, July 2007, she is cancer free. As you also mentioned, I do not visit this site often. I stll post on cc.org and the JHH site occasionally. We will pray things continue to go well for you.

Richard

Cholangiocarcinoma is the medical term for cancer of the bile duct. location of the cancer on the bile duct determines whether the tumor is inthrahepatic, perihilar or distal. The location will also determine what type of surgical teratment is done if sugery is poassible. Wikipedia gives a very good explaination of cholangiocarcinoma. link - http://en.wikipedia.org/wiki/Cholangiocarcinoma

Richard:

Am really glad that Dawn is doing well.  I am pleased to hear that she is cancer free.  I will continue to put her in my prayers to help maintain that positive status.  Please keep me posted on her continued good health. 

Take care (both of you!)

Sue

On 8/2/2007 Evan14 wrote:

Hello Sue

Dawn is doing well almost 20 months after her resection. It has not always been a smoth journey, but as of her CT scan results last week, July 2007, she is cancer free. As you also mentioned, I do not visit this site often. I stll post on cc.org and the JHH site occasionally. We will pray things continue to go well for you.

 

Richard

On 9/1/2005 Suzieb wrote:

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.

My mother was recently diagnosed with bile duct cancer and we are really frustrated. I was wondering if there was any way to get the name of the doctor that did the surgery.  I would be so thankful for any help that you can give me.  I have continually searched and prayed for some way to help my mother and then I saw your posting on the message board & I felt like it might be a glimmer of hope.  I would so appreciate your help.