Bile Duct Cancer, any good news out there?

Hi Randi

I don't know if my first attempt at replying was successful or not so I will send this again.

Glad to hear your Dad is doing well . He sounds like he is tough. Those are powerful drugs he is receiving.

We found out my wife's cancer was not a klatskins tumor but recurrent breast cancer that happened to show up at the same spot a klatskins tumor does with the same symptoms. She is taking a drug that blocks estrogen .

I wish you well.

Joe

I'm 67 years old, I had a CT scan, and a uLtra sound, which showed "something in the bile duct of my Liver" Thats what my Gastro Doctor said.
he is going to do the tube down into my stomach and over to the duct this wednesday.

I am in alot of pain. I also suffer from RA, and Sjorgens Syndom. My Gastro Doctor says the CT scan and ultra sound showed my Bile duct almost closed. he told me the risk with this next test.

I would like to hear from someone who found out they have cancer of the bile duct, and how are they doing.

thanks

Hello there,

I am new to this post and new to the world of bile duct
cancer. My mom was just diagnosed last week and
they did surgery to remove the tumor from her bile
duct. We are waiting to hear if the cancer has spread
to her portal vein but in the meantime I am doing
everything possible to educate myself as to options,
places to turn to for info etc so that I can be a good
advocate for my mom. We live in Toronto Canada and,
if Jackie S is still on this forum I would love to chat
with you. I am finding a lot of resources on American
websites but not so much relevant information in
Canada. If anyone else out there is from Canada and
has dealt with any professions in this area I would love
to hear about your experiences.

Lisa from Toronto

HI,

My mom was diagnosied with a klatskin tumor in April 2005, we live in Florida, and I have been told that this is not the best place in the world for medical treatment, they stated her cancer was inoperable and uncurable, I still do not understand why (other than possible blood clots in the protal vein) that surguery could not be done. She went to the Mayo clinic in Jacksonville, FL where she was told she was not a canadit for a liver transplant due to the portal vien being damage. My mom has always been very healthy, walking 5 miles a day and is a non-drinker and non smoker, I am looking for any information on a Klatskin Tumor, good or bad. Thank you for listening. Stephanie

My name is Kellee and I'm 24 years old. In May 2004 I noticed that my mom, who just turned 65, was looking a little jaundiced. She also had itchy palms and a few other symptoms. I did a quick search online and called to tell her to make an appointment with her Dr.

A CT scan was scheduled and they found something. Not that they could explain what "it" was, but we were sent to University of Virginia Med. Center. They orginally thought she had PSC but after months of ERCP's and stent problems my mom was finally given the diagnosis of cholangiocarcinoma and not much hope. A few days later in late August 2005 she went in for one last ERCP and her duadnum (sp?) was punctured. She had emergency surgery to make the repair but they found that the tumor had spread much farther than originally thought. It was in the gallbladder, around an artery, and in one lymph node that was in the middle of the mess of tumor. A few days after the initial surgery they went in again and removed her gall bladder.
After a two week stay in the hospital the doctors decided at the moment the liver was not recectable. They decided to go with a treatment regimen of radiation and chemo starting in early Nov. 2005. UVA is one of the few hospitals in the country that has a TOMA radiation machine. It produces a highly concentrated strong beam of radiation to specific tumor sites. Everyday for 20 days she has a CT scan to be sure they "hit" the right places. Now we have finished with the treatments of radiation and Xeloda (an oral chemotherapy drug). We now wait until January '06 to see if the treatments worked well enough to resect her liver and rid her of this horrible disease.

Has anyone else had success in completely removing the cancer with resection? Is anyone in remission? We can't even get our doctors to give us a prognosis or time of live...they just say everyone is different in response to treatment and we'll just have to wait and hope she doesn't have any more stent problems...

Hi Kellee,
I read your post. I'm so sorry to hear about your mother. This disease is a beast. My name is Kelley too. My brother who is 39 was also diagnosed with cholangiocarcinoma in Oct. 2005. At that time we were told that there was not much hope. Since then we have been researching for information and trying to find others who are dealing with this disease. We have talked to many people who have given us good information.

We decided as a family, in conjunction with a few others families who are also dealing with this, that we wanted to start a website just for cholangiocarcinoma. Here's the web address. www.cholangiocarcinoma.org. Please register on the site so that we can all share information. As I have been looking for others with cholangiocarcinoma, I have found many who post on a site and then never hear from anyone. We want this to be a place for all of us to share and receive information. If you are in contact with anyone else who would be interested in this site please share this info. with them.

As a family we are not ready to give up in this fight. Information is a very powerful tool. We hope this site will be helpful to you too. If you have any suggestions for the site, let us know.

I hope your mom gets feeling better.
Kelley

Hi My partner has Cholangiocarcinoma (primary not established)13cm tumour in liver - treated with Avastin 5FU Cisplatin (last 14 months) shrunk 30% then Sirtex spheres direct into tumour-dietary changes No Fats, No Fries, No sugars, No Dairy, No Salts-hard for me as carer in the beginning but now easy to live this way-avoid labouring liver with bad diet-meditation daily-reduce stress-seek inner calm-also olive leaf extract, curcumin, milkthistle, pomegranite, all berries, for tumour reduction, angiogenisis, Now in clinical trial with Gemcitubine and similar Avastin drug on whole body...living longer than predicted-still far from in the clear though...change of living style great help-focus on low stress reduce fear by asking and seeking information-take care you all...in this together - Eleni

Hi,


I realize that these emails messages are old, dating back to 2005. But if there are any Canadians who can share their stories about Bile Duct cancer I would appreciate it. It would help to know what their doctors said, what stage they are at, etc.

I have a 38 yr old brother who's doctor has told he may have this type of cancer. We are waiting for the results this coming Friday.

I would love to hear from you.

Thank you,

Hi,


I'm writing in hope that there are some Canadians who are able to share their stories regarding Bile Duct Cancer. My 38 yr old brother from Toronto, ON may have this cancer. We find out the results from the biopsy on Friday. If any out there can share their insights, thoughts, prayers. I would appreciate it! My family and I are petrified but at the same time we need to be positive.

Please write.

To everyones message I have read- hang in there. I am a physician and patient diagnosed with cholangiocarcinoma three years ago at age 34. I also have ulcerative colitis, small amount of primary sclerosing cholangitis in my liver which lead to cholangiocarcinoma. My situation is paradoxical being a physician and patient, but I guess that's how it goes. I had the left lobe of my liver removed and hepaticojejunostomy by Dr. Yuman Fong at Memorial Sloan Kettering. Pathology was good showing negative margins, and negative lymph nodes. Dr. Fong is my hero and surgeon-did a great job. I went back for scans every three months for about 1 1/2 yrs and now every 6 months. CT scans are so sensitive that they thought they were seeing something grow back recently. A PET scan confirmed negative. Overall, I have survived this horrible disease but holding my breath. Best case scenario 5 yr survival (from the studies I have read) is 50% to 60%. The problem is that there are just not alot of paients out there who underwent liver resections and negative margins. Its clear to me that the best chance for long term survival is at the initial operation with a right or left hepatic lobectomy and negative margins. The studies support this. Up to 70% of the liver can be resected. The liver is a remarkable organ in that it regenerates itself in just a few months. The question is common risk factors associated with having a big operation (smoking, heart disease, diabetes, previous heart attacks, etc.) These all can lead to a worse outcome and morbidity after surgery. However, if you have your surgery at a hospital where they do this surgery often, the morbidity rate should be very low. Dr Fong believes there are only 4-5 surgeons in the world who can do this surgery correctly with low morbidity (no biliary leaks, intrabdominal abscess, etc). Any surgery with tumor left behind or positive margins equates to a very poor 5 yr survival. For patients with unresectable bile duct cancers-There is no effective chemotherapy with good results. 5-FU has been tried at Mayo clinic in Rochester, MN with radiation therapy with a response rate around 15%, but I believe no complete responses. Radiation therapy has been studied in patients for palliative therapy with stenting and has prolonged patient survival, but again no complete responses.