My dear mom
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Cathy……a warm welcome from me as well. Given you live in Stanford, have you made contact with UCSF as well? Already you have initiated molecular testing and should receive the results within the next few days. You would want to gather the test results and CD with all imaging (CT, PET, MRI) and contact UCSF at 415-514-5830.
Good luck, dear Cathy, and please stay in touch.
Hugs
MarionDear Cathy, welcome to our remarkable family but sorry you had to find us. If you go to our home page there are some valuable site including Treatments, Trials and Hospitals. May I ask where Mom is being treated? We are huge believers in 2nd and 3rd opinions and know that knowledge is our most important tool. I am posting a site below that you may find helpful as well. Wishing the very best for all of you and please do keep us posted. You are not alone here as we all truly care.
http://cholangiocarcinoma.org/newly-dx/
Hi everyone,
My lovely mom was diagnosed with stage 3B hilar bile duct cancer in September, 2014 when she was only 53. As so many of you have experienced, it didn’t take me long for so many terms that I had never heard of in my life (including cholangiocarcinoma) to become a part of our family’s daily verbiage.
While my mom was able to receive surgery, she had microscopic tumor cells in her margins and she was referred to radiology for adjuvant radiotherapy (but not chemotherapy). Things looked promising for a few months–good scans and good blood tests– and we were praying for a long period of remission.
However, her scans the following June (2015) revealed that the cancer had returned to her peritoneum and that she was not a surgical candidate. She has been on gem/cis for the past 11 months, but her most recent scan this June showed growth in the lesions so her oncologist recommended xeloda and cisplatin to “give her some more time.”
This is where we are desperately looking for other options, especially clinical trials. We know that the odds are not great, but we do not want to give up before being fully educated on what our plans b, c, d, and even e could be.
If there is any advice that this loving community may have as we start yet another phase of this journey, it would be greatly appreciated. I live on the West coast, but am more than willing to travel to other hospitals for consult or treatment if that is recommended. Her current hospital does not offer molecular profiling, but they agreed to send her original tumor sample to foundation one.
I know that so many of you have been through this painful journey and I admire each and everyone of you. I have been crying so much that my brain feels like it’s turning into pudding, but I know that this is not the time to cry or give up but to gather as much information as possible. If you have any suggestions on who we should contact, what trials have been promising, or just any advice at all, please let us know.
Thank you everyone and my prayers are with all of us..
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