Gallbladder Cancer

Hi Keivan,

Thanks for your note.  Your mom’s cancer is a rare one, and for hepatobiliary cancers, brain mets are not very common.  So there is not as much published medical evidence for her doctors to go on, as compared to the more common cancers.  It is important to seek out medical providers with expertise in complex cases.

For our cancer, it is common for patients and their caregivers to conduct their own research and ask their doctors many questions to help identify out the best treatment options, especially after the usual first rounds of treatments have been pursued.  As you note, sometimes doctors will try treatments that have been seen to be effective in similar situations with other cancers.

Avastin has been used as a treatment for cholangiocarcinoma, often in conjunction with chemotherapy.  If you search the discussion board, there are some patient stories discussing Avastin, and an internet search will turn up medical articles about use of Avastin for cholangiocarcinoma.  You mom’s doctors can advise if this would be a good treatment for her given the specific features of her cancer.

With our cancer, for advanced cases, the objective of treatment is generally to stabilize the cancers.  We always hope tumors and mets will shrink or disappear, but it is also a good result if their growth and spread is halted or slowed down.

I am not a doctor (just a patient) so I am not able to give medical advice.  I hope your mother is comfortable and is tolerating her treatments.

Take care, regards, Mary

Hi Keivan,

Welcome to our community.  I am really sorry to hear about your mom.  I hope you have had a chance to look at the resources for  patients and caregivers on the Cholangiocarcinoma Foundation website.

Based on what has been posted on this board for other patients, brain metastasis is sometimes treated with radiation, depending on the location of the mets.  Is this something your mother’s doctor has mentioned as an option?

New treatments being tested are most often available to patients through participation in clinical trials.  The website clinicaltrials.gov allows a patient or caregiver to see what trials are available for their cancer.  One piece of information to look at for any available trials is the eligibility and exclusion criteria, to see if your mom would be eligible.  Some trials, for example, might exclude a patient with brain mets.  This website has listings for trials in the U.S. and some outside the U.S.  If you are in another country, your Ministry of Health may have its own clinical trials registry on line if the pharmaceutical companies are performing clinical trials in your country.  If you participate in a trial, typically the treatment is provided free of charge, although there may be other costs to consider such as transportation.

Did your mom have genomic testing to see if her cancer has any mutations for which there are available treatments?

Another suggestion for times when available treatments are too expensive is to look at the pharmaceutical company’s website to see if they offer any financial assistance programs for patients.

Please keep in touch, and send us your questions.  We are not medical providers, but our community has been on the same journey as you and your mom, and we are here to support you.

Take care, regards, Mary