My wife has been diagnosed with cholangiocarcinoma
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Tony……an additional treatment option is a immunotherapy checkpoint inhibitor such as OPDIVO (nivolumab) or KEYTRUDA (pembrolizumab) either by enrolling in a clinical trial or requesting it as off label monotherapy.
Hugs,
MarionCatherine, Lainy, thanks for your kind words, I will try to keep you posted once we have reorganised a couple of things.
Tony.
Dear Tony, welcome to our remarkable family but so sorry you had to find us. This is the best place to be for CC support. We are huge believers in 2nd, 3rd and 4th opinions until you and your wife feel totally satisfied with the DX. Different Doctors see and feel things differently and it is a good idea to gather the test results and see someone for another opinion. Gem/Cis is usually the first line of Chemo given. I am not sure if anyone has had this exact type of CC but if you go to our Search engine at the top of the page and type in peritoneum posts on that subject will appear and my be helpful. Wishing you both the very best and please keep us posted on her progress as we truly care.
Dear Tony,
I am so very sorry your wife has been diagnosed with this disease. It breaks my heart when I see people who are so young and especially with young children get diagnosed. Please know that although this is a very horrible disease, it is not hopeless..My mother was closed back up in Nov 2013 during unsuccessful resection and she has had been treatment free for almost 2 years (she had SIRT radiation treatments). Also, there are so many other targeted and clinical trials available even since I joined this board in 2013. Main thing is to make sure your wife is being treated at a center that is familiar with cholangiocarcinoma. You need a major cancer center which can get your wife the best treatment for this disease. We are big fans of second and even third opinions. With my Mom, I truly believe if we had not pushed for other options she might not be here today. This disease is so rare that amazingly sometimes you have to push or find doctors/treatments.
If you haven’t yet. please check out the newly diagnosed section on the main webpage.
http://cholangiocarcinoma.org/newly-dx/
We are here for you.
Catherine
Dear all, my wife has been diagnosed with cholangiocarcinoma just a couple of weeks ago (19th of May). We never thought about having to deal with this sort of brutal disease, but it seems that this is how life is. She is 38, I’m 45 and we have two children, a sweet girl of 4 and a lovely boy of 2.
The diagnosis was done during an operation, and since the carcinoma has spread into the peritoneum, the chirurgians decided against a resection. They, however, did a bypass between the bile duct and the small intestines (a so-called Braun’s anastomosis), so that stenting hopefully will not be required in the near term.
Since then I read a lot of articles about cholangiocarcinomas. I know that prognosis is very bad, especially since the peritoneum has been affected (although not that much according to the chirurgians; it’s also not visible in CT). The cholangiocarcinoma is of distal type and maybe the size of half an inch. My wife is currently treated with GemCis, 8 cycles with staging after the 4th cycle. We also think about PIPAC for the peritoneum, but only at a later time, since she is still recording from the operation.
Maybe you can help me by answering the following question: does anyone know about similar cases, where resection has nevertheless been done? Are there other treatments that we should think about? Or any experience that anyone could share?
Love and hope, Tony.
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