November 13, 2020 at 11:53 am #100600
Vtkb, Thank you for your suggestion. My brother-in-law is being treated at Mass General in Boston and his surgery consult was at Dana Farber. Are there other institutions in Boston/New England that “specialize” in this type of cancer? Thanks for your help. BetsyBNovember 13, 2020 at 11:43 am #100599
Bglass, Thank you so much for the suggestions and sources, they have advanced my searching and knowledge greatly. To answer your question, my brother-in-law’s cancer has not spread outside his liver. The tumor is located at the top of the liver surrounding blood vessels, which is why it is judged unresectable. So far he seems to be doing OK with the chemo, although it’s too soon to know whether or how much it’s helping. BetsyBNovember 8, 2020 at 5:15 am #100574vtkbParticipant
Is he being treated at a big institution? He may want a second opinion at places that deal with this cancer more than others- for example MD Anderson, Sloan Kettering, Cleveland Clinic, Mayo, Fox Chase, Hopkins etc.
November 2, 2020 at 8:38 pm #100560bglassModerator
- This reply was modified 4 months ago by vtkb.
I am equally glad that you have found us, but very sorry to hear that your brother-in-law received this diagnosis. It is worthwhile to do some research regarding treatments for this cancer, to understand the options medical providers are offering and to ask about others.
Has your brother-in-law’s cancer spread outside his liver? There are some localized treatments that would be possible if the cancer is intrahepatic and confined to the patient’s liver. Here is an article that describes the various localized treatments common for our cancer.
If a patient’s cancer has spread then systemic treatments are most likely. Typical second-line chemos include FOLFOX, FOLFIRI and FOLFIRINOX. These three acronyms describe multi-chemo treatments that include fluorouracil (5-FU) plus other agents. You can search the acronyms on this website for patient stories. Doctors drawing on their clinical experience with cholangiocarcinoma patients may recommend other chemos – sometimes ones more commonly used with other cancers. We have had patients reporting receiving paclitaxil, capecitabine (a pill form of 5-FU), and others, often as part of a multi-chemo treatment.
Some patients have reported receiving radiation, for example to address certain types of metastasis (e.g., in bones). Also, there are some clinical trials available for patients without mutations, which might be for new chemos, new combinations of existing chemos or immunotherapy agents. If you are searching for trials at clinicaltrials.gov, you can look for “solid tumor” trials in addition to ones specific to cholangiocarcinoma.
I hope this gives some ideas for your research. I also hope your brother-in-law is doing well with his treatment. Please send any questions our way, and take a look at the Cholangiocarcinoma Foundation website which has many resources for newly diagnosed patients and their caretakers.
Regards, MaryNovember 1, 2020 at 4:33 pm #100557
Hello, I’m glad to have found this site. My brother-in-law was recently diagnosed with unresectable intrahepatic cholangiocarcinoma and has begun treatment with the gem/cis chemotherapy regimen. He is an unusually fit 80-year-old who had no symptoms; his tumor was detected from a scan for another purpose. He has a dedicated primary caregiver in his wife (my sister). I am trying to help and am interested in hearing of others’ experience in this situation. I’m especially interested in learning about therapies for patients who complete (or fail) gem/cis; it’s my understanding there is no “standard” therapy for such patients although options do exist. My search of emerging therapies and clinical trials for iCC has so far not been productive. It appears that the emerging therapies are aimed at patients who have specific mutations; my brother-in-law has been told he has no mutations. I would welcome any information that would suggest a path forward for my continuing research. Thank you.
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