Discussion Board Forums General Discussion 40Y Diagnosed with CC

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  • #99299
    bglass
    Moderator

    Hi Ktoram,

    It is wonderful to hear from you and especially that you are recovering well from a liver transplant.  Only a few of our cases qualify for the strict transplant protocols, so this is indeed welcome news.

    Your sage advice to other patients is very helpful – thank you.  I completely agree with the importance of doing research and becoming familiar with all the treatment options.  With a cancer this rare, patients and caregivers will find themselves having to explain or ask about things even to medical professionals, so it is important to be as informed as possible.  As you noted, the Cholangiocarcinoma Foundation posts a wealth of resources on its website to help everyone find the information we need.

    I hope you will keep us posted about how your recovery goes.

    Take care, regards, Mary

    #99297
    Ktoram
    Participant

    Update:

    I got liver transplant at Mayo Clinic Jacksonville, FL on Oct 16, 2019. I am recovering well. My family, friends and team of doctors helped me a lot and fought hard for me.

    I accepted liver with Hep C. Will start treatment soon for Hep C. My surgeon at Mayo was Dr.Dana Perry. She is my guardian angel.

    My suggestion to newly diagnosed: Please do your homework for cc. I consulted four different hospitals/doctors before heading to Mayo. Two of them, suggested and referred me to Mayo. Third talked about surgery (not possible as it was on both sides of liver) and fourth mentioned combination of radiation and chemo. So, please please do research and consult more doctors before starting any treatment.   Thank you ccfoundation for excellent information. Without this information, I would have chosen different treatment.

    Feel free to send me messages for any questions you may have to  – ktoram at gmail.com

    #98742
    bglass
    Moderator

    Hi Ktoram,

    Welcome to our community.  I am so sorry to hear of your diagnosis.  Cholangiocarcinoma is a rare cancer, so it is good you are making arrangements to be seen at a specialized hospital with experience.

    Please take a look at the new patient resources on the Cholangiocarcinoma Foundation website.

    It adds to the anxiety of a cancer diagnosis if your insurance impedes getting the care you need.  You may wish to look at the specialist map on the Foundation website to see if there are any cholangiocarcinoma experts in other nearby medical centers your insurance would cover.  A number of patients posting on the discussion board have been treated at Moffatt, for example.

    The other suggestion I would make is to ask your doctors about genomic profiling.  Many cholangiocarcinoma patients have genomic defects related to their cancer for which there are treatments being developed.  Usually these targeted treatments are not the first line of action, but for many patients they become important later on and this is where much of the research and clinical trial activity is taking place for our cancer.

    Please send any questions or concerns our way.  Because this cancer is a rare one, it can be hard to find good information.  There is a lot of good patient and caregiver expertise represented in our community and we are here to be of help.

    Regards, Mary

    #98741
    Ktoram
    Participant

    Hi,

    We live in Tampa, FL. I was recently diagnosed with CC. Today, I talked with one of my doctor at St.Joseph’s hospital. He said, my disease is local, no involvements of lymph nodes yet, but spreading fast. The bad news is, it is not re-sectable at this time as it spread to tiny branches in the liver and at the confluence. I had two ERCPs in last two weeks. The first one at St.Josephs’ was inconclusive. The second one at Tampa General found malignant tumor. Both doctors referred me to Mayo Clinic in JAX to see if I fit the Mayo Protocol for liver transplant. But my insurance doesn’t cover Mayo Clinic and I have to wait three weeks to change my current insurance plan. In the mean time, we sent my reports and scans to Mayo to review. Another option is neoadjuvant therapy with drain, surgery later if possible. Any guidance is greatly appreciated.

    – No cancer markers in the blood test, lot of itching, little pain when in stress, lost 14 lbs in 2 months, extreme fatigue, high blood sugar due to stents.

    Unfortunately, our lives are changed forever. I now, have to survive for my two kids 6 and 3.

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