Topic: New Diagnosis

Hello everyone,

My father, a 63 yr old physician has been diagnosed with cholangiocarcinoma, he is already in stage 4 with metastasis to the lungs. There seems to be no additional spread to the pancreas, liver or adjacent nodes. Since he is not suitable for Whipple procedure we are exploring any options. We have heard of Sorafenib (Novaxar), Davanat and PDT as clinical trial options. We are also exploring traditional chemo and radiotherapy. He was just stented last week and he seems to be OK and his bilirrubins are decreasing a little bit.

I am looking for any experiences, recommendations or knowledge about how to proceed.

Please let me know if you have anything to share.

thanks!

Amilcar Alfaro, Seattle Washigton.

Re: New Diagnosis

Dear Amilcar,

My wife has been battling stage IV cholangiocarcinoma for 13 months.  The only chemo that helped her was a phase I clinical trial of XL119 and oxaliplatin.  SHe has tried gemzar, taxotere, 5FU, and a combination chemo.  After she was removed from the clinical trial, she rapidly got worse and her time is now very short.

One thing you learn is that what helps one patient doesn't work for another.  Find an expert in Seattle and follow their suggestions.

Re: New Diagnosis

Hi Amilcar,
If you haven't already, I'd suggest you meet with Dr. Gold at the Swedish Cancer Institute on First Hill.  From my research, he is the most experienced in the NW dealing with CholangioCarcinoma.
-Hans

Re: New Diagnosis

Thanks for the replies. We are already in communication with Dr. Gold and he already has all of my father's diagnostics and relevant information. We have an appointment 6/7 (waiting for the bilirrubins to go down even further). I hope we are not taking too long.

Thanks again for the replies!

Re: New Diagnosis

Hi Amilcar,

I was diagnosed at Virginia Mason Hospital by Dr. David Patterson in April, 2005, and was referred on to the Mayo Clinic in Rochester for a liver transplant. My cholangiocarcinoma was contained to my bile ducts, though. Dr. Patterson placed stents in my bile ducts to allow the bile to drain properly. Has anyone mentioned doing that? It took care of my jaundice right away. Good luck to you. If you have any questions, don't hesitate to ask.

Kathy J
Olympia, WA

Re: New Diagnosis

HI Kathy - dad was already stented and the jaundice has significantly decreased. He is also doing a bit better with food and is a tad stronger. It seems like in the region he is still confined to the bile duct tract but he metastasis to the lungs are the big challenge. I will certainly try to get him an appointment at VM as well.

An unusual problem we are facing though is that the tumor cannot be localized appropriately, it is either very small or dispered across the duct. We have no evidence of volume or area.

Has anybody experienced something similar.

thanks again,

Amilcar

Re: New Diagnosis

My tumor was in the bile duct and wrapped around it on the outside, also around the portal vein. They had to take three tries to get enough cells to make an accurate diagnosis. I now have a 2 cm mass  located near the portal vein between the liver and the stomach that they can't get at with a needle to do a biopsy after two attempts so we are watching it. It was discovered at the end of March, I'll return to Mayo June 12 to see if it has grown so they can try again to biopsy it, or if it is the same size which would be a good thing.  Good luck with your dad. Keep trying to get him seen earlier. My physician (gastroenterologist) make the referral for me to Virginia Mason and I was there being seen as a patient in two days. Dr. David Patterson is well known on the west coast for his abilities, especially diagnosis of cholangiocarcinoma. They were very efficient. They made the referral to Mayo for me and encouraged me to go that route. I was diagnosed formally on April 15, 2005, and had my liver transplant at Mayo on November 16, 2005, just seven fast months apart. Good luck!

Kathy J
Olympia