Four years and going strong

Discussion Board Forums Survivor Stories Four years and going strong

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    All the best to your sister and to your family, Leonie! I hope this message board and the Cholangiocarcinoma Foundation is as much help to her as it has been to my mom.

    And thanks so much for the timely reminder, Mary. Targeted treatment is indeed so important. Also, knowledge about what genetic mutations a patient carries is helpful even beyond the specific therapies designed to target a handful of mutations. Increasingly, knowing a patient’s tumor’s genetic profile may help the treatment team select appropriate chemotherapy combinations and will help make important decisions about radiation, surgery, etc.


    Hi Hannah, thanks so much for sharing this, my sister was recently diagnosed and it’s great to read positive stories. I’m so glad your mum is doing well 🙂



    Hi Hannah,

    It is great to hear from you — the good news about your mother’s successful treatment really made my day.  The newer targeted treatments are benefiting many of our patients.  Their stories highlight the importance of biomarker (genomic) testing to see if your cancer involves a mutation for which targeted treatment is an option.

    (For any readers looking for information on biomarker testing, there is important material on this topic available on the Cholangiocarcinoma Foundation website.  I will place a link at the bottom of this message.)

    Take care, regards, Mary

    Here is the link:

    Biomarkers Matter



    My last post to the Survivor Stories board was about 8 months ago. Today, we learned that my mom’s ICC is still being held at bay. The key word I waited on tenterhooks for is “stable.” This is a special milestone because it marks four years since her initial diagnosis, when doctors discovered a 10+cm tumor on her liver and gave her a bleak prognosis. After one failed surgery, 10 cycles of gem-cis, a second successful surgery, and more than two years on Ivosidenib/Tibsovo, the only signs of cancer in her body are a few stalled-out looking lymph nodes. I hope her story can bring hope to others. The first oncologist who diagnosed my mom at our local hospital did not give us much reason for hope. She said there was not much known about this disease, and no effective treatments. While it’s true that cholangiocarcinoma is a tough and a(n increasingly less) rare diagnosis, there are new and more promising treatments arriving on the horizon all the time.

    Editing here to say that although some people might ask why i use the word “successful” for a surgery that turned out not to have removed all the cancer from her body, i am convinced that removing all that tumor burden from her body was a huge benefit. at the time of the surgery, the entire tumor was deemed to have been removed with negative margins, and all lymph nodes removed for testing came back negative.

    • This topic was modified 1 year, 6 months ago by Hannaha.
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