Introduction

Well it’s been 8 months since first diagnosed. Went through first round of chemo with Gemzar and PET scan showed tumor in liver gone and tumor in bile duct stayed the same. Starting second round with GEmzar hopefully will also have goon results.

Hi Everyone,

My husband, 39 years old has been diagnosed with Advanced Cholangiocarcinoma on Oct. 5, 2006. It had spread on his stomach lining and in his lungs. He had ERCP on Oct. 7th, had Laparoscopic surgery the following week and started his chemo on Oct. 31 and Nov. 1, ’05, bi-weekly–Gemzar and Oxaliplatin.

He went to work on Oct. 5, (feeling really sick the day before) so he went to the ER. At first, the doctors thought he had hepatitis but after running more tests and CT scan, they told him that he has cholangiocarcinoma, that same day. Life has been changed completely since he came home from work that night!

He is in the navy, stationed at the National Naval Medical Center, Bethesda,MD. where is being treated. His oncologists are from the National Institute of Health. He had CT scan on Dec. 20th and so far his cancer is stable.

Best regards to all. I hope that you will find the best care/cure and continue fighting this dispecable disease! I KNOW, I AM!

Edith (Annapolis, MD)

Alex,
You seem to have had a good outcome from your treatment. How are you feeling?

As I understand it you had four drugs together every two weeks. Were the side effects very severe? Are other people with your condition on the same regime and is it effective for them?

The disease in the liver in stable and all metastatic cancer had gone. What do the doctors say you can expect from here on?

Hi Everyone,

I would like to introduce myself, but before that like to thank Kelley, Stacie, Mark, and everyone else involved with cholangiocarcinoma.org.

I am now 40 and was diagnosed around mid July 2005 with cholangiocarcinoma. At that point I had I believe 5 tumours in my liver, about 6 tumours in my spleen and several lymph nodes involved. On July 26th, 2005 I started chemo after seeking a second opinion. That chemo was every two weeks and comprized gemzar, oxaliplaten, avastin and Tarceva. On Sept 6th, 2005 a CT scan showed most metastatic cancer to be shrinking (80%) and of the liver tumours only 2 had any sign of shrinkage, around 20%. On NOvember 28th, I had a CTPET scan and all of the metastatic cancer aprt from one lymph node was no longer detectable on either CT or PET. The disease in the liver was described as stable. Since the ends of October the Oxaliplaten was replaced with Xeloda because of liver toxicity and concern about peripheral neuropathy. Admittedly, the xeloda has most liukely been more off than on because of side effects.

I probably shouldn’t be writing all this here as Kelley asked for website suggestions, but I guess this is my introduction.

Keep up the good work you guys and my best wishes to all.

Alex.

Hello, everyone. I am very happy to find this site and I share the optimism that you have all expressed in the early stages of this forum. I was diagnosed originally on January 7, 2005 with a large (8cm) tumor and several smaller ones in my liver, presumably metastatic. But after running me through many, many tests, it was determined that I had cancer of unknown primary source. After the pathology from my surgery in August, during which the large tumor was removed, my diagnosis became cholangiocarcinoma. I have numerous very small lesions on my liver that are not visible in CAT scans and do not “light up” on PET scans. I have responded very well to a chemotherapy regime of gemzar and taxotere (docitaxil). At this point my doctors are trying to develop a next step treatment. I have responded well to the chemo and surgery to date, but am concerned about what the future holds for treatment in terms of short term and long term effects.

Herschel Conner
Tierra Verde (St. Petersburg), Florida

Hi everyboby! My husband was diagnosed with cholangiocarcinoma on nov 28th 2005
and was an excellent canditate for surgery(whipple). Alot of these message boards
concentrate primarily for cholangio that affects liver his did not it was in lower region
and called common bile duct., affecting pancreas,gallbladder stomach and small instestine. I wastold this is very rare? Is anyuone famailar with this type of cholangiocarcinoma? Any help would be greatly appreciated I am feeling very alone and answers are hard to come by. Thanks!!!!! Nice to see another board!

This is a wonderful way for people to come together and share information. Thank you for taking the time and energy to put this site together for the benifit of our families, caregivers, and all of us diagnosed with cc.
My name is Pat and i am 64 years old. I was diagnosed November 2003. I will have to go over my records to get the information on all the chemo treatments i have been on. I promise to do that soon. My tumor has advanced into my liver and continues to grow. My Dr says that stage one clinical trials is my only hope. I feel and look fine. I have no pain and the only ill effects have been from the chemo. I am off chemo now and other than feeling anxious and depressed I am doing well.