Introduction

Hi Bean…I am so sorry to hear about your brother and I so much understand your feelings of dispair following the diagnoses of Cholangiocarcinoma something, all of us can relate to. You are saying that he is not resectable and my first question is: who has has come to that conclusion? Is this a physician very familiar with this cancer? Regardless of that I would definitely seek out another opinion or, two. Where is your brother located? Hang in there Bean because, this is way too early to throw in the towel. There is this saying: first you cry – then you fight. We are with you….all the way.
Best wishes,
Marion

Hi Nancy,
My mom was diagnosed in October 2009 and had a liver resection performed at Mount Sinai by Dr. Myron Schwartz. Could be worth getting a second opinion from his team of 4 partners as they perform a lot of transplants too, so they’re at the cutting edge. The surgery was riskier then other liver resections because of various technical reasons and our feeling was that other surgeons would have not done anything. We had originally spoken with another liver surgeon and we’re fairly sure he would have opened and then just closed her up, if that (he wanted a biopsy first and a scan or the hepatic artery and portal vein called an mra scan). He said if these were affected and if other technical issues existed he might not operate and said it was 50/50. But, Schwartz looked at the scan and went straight to surgery and yes he did have to splice the hepatic artery and deal with other various risks since almost 75% of the liver was removed. Hats off to him and his team. It’s now week 5 post surgery (a tough surgery) and she’s recovering, and started her first chemo session in week 4. She’s doing GFLIP with cisplatin with Bruckner Oncology. Dr. Bruckner is one of the authors of the research on this chemo cocktail treatment that I’ve seen on one of the posts on this bulletin board. He seems to have a batch of patients who have been with him for years. Hope this is helpful. Would like to hear other people’s experiences with chemo in the nyc area and the regimens prescribed.

—Think positive healing thoughts and envision recovery.

Hi and welcome. My mother was recently diagnosed with stage 4 cc. She was in NY consulting with Sloan and did have surgery. Unfortunetly, once they got in there was mets on her liver. Everything is still small, no huge tumors and like you sad she pretty much feels fine. Shes still sore from the surgery but is going to be starting the same type of chemo as you on Dec 31st. She lives in Florida and is having her treatments at Moffitt Cancer Cener. We are also consulting with Mayo Clinic.
I wish you the best. You sound like you have a great additude and alot to live for and I have read stories on this board of people with stage 4 kicking it and living their lives. There is always hope. Please keep on posted. Have a great holiday.

Lulu….I would like to echo ajcarman and Lainy in welcoming you to our site. The Gemcitabin/Cisplatin study was the largest multinational bile duct cancer/ Cholangiocarcinoma study ever conducted. You may read up on the abstract and on postings from other members by using the “search function” on top of the page. Simply, type in gemcitabine cisplatin (you don’t need an author) or you may use the “google” function, top, right hand side. I am hoping for others to come forward and share some of their personal information with you although, historically, this time of the year, our board seems to slow down a bit. Nevertheless, the information hidden in our postings is numerous and informative and it may bridge you over until you receive some responses from our members. Positive biopsies for this tumor are not always obtained in fact, I believe that in most instances they are negative. In such a case all other symptoms will be evaluated and a diagnoses is made based on those values as it was handled in your case. I do agree with Lainy in that I would pursue at least another medical opinion. In that case you might want to make sure to have copies of all reports including, CT scans, MRI’s, blood test, doctor’s reports, etc. in order to forward those to physicians familiar with this cancer. Hang in there Lulu and continue to put out your questions. And yes, miracles do happen. We have seen it on this board.
Best wishes coming your way,
Marion

Wishing you the best Nancy! My mom is 55 and was diagnosed this year and is on gemcitibine and oxaliplatin right now. I don’t have answers for your questions, but am confident others here will.