Hi Sandy,
My father n law used it for his recurrent metastatic CCA. Not many side effects. His tumour markers came down. The liver mass stabilized but he developed mets to the lungs. I think it has potential. Would attempt to use highest dose. 10 mg I think.

Hello, I have posted about this before but I was wondering if anyone has used Afinitor for metastatic Cholangiocarcinoma yet?
I hope it works and I will certainly post about it. Our oncologist Dr Schreibman would like to start this for my father n law. Thank You

Our doctor Dr  schreibman believes this is cutting edge. For solid tumors. You send your blood to a lab affiliate with John Hopkins and essentially they try to match your metastatic circulating cancer cells with the best therapy. He is finding at Afinitor for example is having huge success surprisingly.


(128 replies, posted in Hospitals)

Our surgeon was Dr Myron Schwartz at Mount Sinai Medical Center, NY
He is amazing. He did an outstanding surgery on my father n law.

Oncologist 1st round with Andrew Jennis at Hackensck in North Jerset

Met today with some guru Dr Steven Schreibman at Morristown Medical Center. He's been in the field a long time and we are very exited to work with him. He is going to doIN-VITRO DIAGNOSTIC TO GUIDE CHEMOTHERAPY SELECTION For solid tumors. This is or treatment of my Farther n laws recurrence

Hi Gavin and everyone else. I ve read this post and  it helped me do tons of research.
We actually sent my father n law to Croatia while he was still feeling great even though his tumours grew significantly we felt like it was important to see his family.
He is getting 2 opinions on the next step in a week or so and unfortunately I cant see doctors with out him.
I will definitely get back on and report. Dr Schwartz his surgeon would like to see the tumours stable for some period of time before resecting and does not feel it is ammenable to a stereotactic RT at this time.

I hope every one is doing ok. Thank you so much for your support

Hi Gavin, Being new to this board. I am wondering is there a usual 1st line of chemo doctors use with metastatic cholangiocarcinoma with mets to the liver? Is it best to jum right into a clinical trial? my father na law already had Gem/Cis and Radiation after resection a year and half ago

Thank You and I am so sorry for your loss its wonderful you give back by supporting people on this site

Hello, My name is Rebecca,
My 67 year old Father n law Zeljko (Croatian) had a resectable Kletskins Tumour Jan 2012. Dr Schwartz at Mount Sinai was amazing. He had adjuvunct Chemo radiation and was doing great until now. He has a few new small lesions in the liver. A biopsy ended up in disaster he wound up with a huge abcess. He has normal Tumous markers but they were never high. An essentially negative biopsy and scan that are non committal to cancer vs infection vs the world. So most likely we will repeat in 3 mo. We are not too happy with our oncologist at Hackensack. There seems to be too much miscommunication. Any good experiences for a 2nd opinion in the Northern New jersey area? Also anyone have what looked like recurrence but turned out to be infection?

Thanks and I love all of your stories. They are hopeful and honest and I look forward to being an ear or an asset to anyone on this list.