Occipital headaches
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azmkwells……Hello from me as well. I assume that you are receiving gemcitabine and cisplatin, first line treatment for this cancer. Obtaining a second opinion has become standard of care, something already your are contemplating. I also wanted to mention that USC, Los Angeles, has a robust biiary department and treats a high volume of Cholangiocarcinoma patients.
On another note: nearly 30% of intrahepatic cholangiocarcinoma patients harbor the ID-L1 tumor gene, which may respond to immunotherapy treatments. You would want to investigate this further.
http://www.cancer.gov/research/areas/treatment/immunotherapy-using-immune-systemHugs,
MarionThanks for your quick response. I am currently seeing Dr Lindquist at AZ Oncology in Sedona. Diagnosed in September and receiving the 2 typical chemos since then. Going to ask her tomorrow about a second opinion referral to Mayo in Scottsdale after reading a couple articles about Mayo’s research and cancer teams.
Hello, Marilyn and welcome to the best place to be for CC support and to becoming a member of our great family. I am sorry I have never heard of those headaches. I hope they find something that can help as you have quite enough to deal with without added discomfort and worry. May I ask where you are being treated? I live in Gilbert, Az so we are distant neighbors. Below is a site you may find helpful and please do keep us posted.
http://cholangiocarcinoma.org/newly-dx/
I am recently diagnosed with Intrahepatic Bile Duct cancer, too large in the liver to be operable at this time, so going thru the typical chemo regimen. What led to my discovering the tumor was occipital (back/base of the skull) headaches and head/facial sweats; one blood test led to another then a scan, etc. Since starting chemo I don’t have the sweats anymore, but the headaches continue. So far the docs haven’t made a connection between the headaches and the cancer. Wondering if anyone out there has heard of this or has suggestions.
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