Cholangiocarcinoma

Discussion Board Forums Introductions! Cholangiocarcinoma

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  • #91995
    marions
    Moderator

    Tia and Maria….have you seen Tony’s posting re: the immuneinhibitor trials?

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=14057&p=2

    Intrahepatic patients in particular are fortunate in that 40 % of all carry the Mas oncogene, PD-1 receptor, PD-L2 ligands, as well as the EFGR mutations.

    Hugs,
    Marion

    #91992
    lainy
    Participant

    YES! Maria and Tia please try to get together as it is the best feeling ever to meet someone from our family. It gives a real boost to the spirit and really lets one know they are not alone in this CC world!!

    #91994
    tiah
    Member

    Hi Maria,

    My name is Tiah, I am also a daughter to a cholangiocarcinoma patient. Better yet, I’m also located in Adelaide and so is my mother. Please drop me an email at tiahdoody@gmail.com, I’m very happy to chat to you about our experience (although mums Cancer is intrahepatic) and also the doctors and hospitals providing a great success. Warm wishes your way.

    -Tiah

    #91993
    marions
    Moderator

    Maria……we so much can relate to your story and as Crissie mentioned, unlike a few years back, today’s patients have more treatment options than ever before. In fact, many compare this cancer to that of a chronic disease. In any case, that is how I like to look at it and it has been confirmed by the numerous posters on this site. All of us on this site will help you understand, support you and stand beside you.

    Most likely your Dad will be infused with Gemcitabine and Cisplatin, the standard first line of treatment for cholangiocarcinoma. Has a “port” or port-a-cath been discussed?
    Has a biopsy performed and had the physician mentioned molecular testing?

    This link offers a wealth of information. Please take a look and don’t hesitate from reaching out with any questions you may have: http://cholangiocarcinoma.org/newly-dx/

    Hugs to you and your family,
    Marion

    #91998
    lainy
    Participant

    Dear Maria, welcome to our remarkable family and the best place to be for CC support. I am sorry to read about your wonderful Dad and you are so right that staying positive is the best thing you can do for the patient and the family. We are big believers in getting 2nd and 3rd opinions and to make sure that treatment for CC is at a facility experienced with this rare and crazy cancer. We also do not listen to time frames as everybody is different. A positive attitude is the best RX and we try to stay realistically optimistic. Wishing your Dad the very best and please keep us updated on his progress as we truly care. You never know how strong you are until “strong” is the only choice you have!

    #91997

    Thankyou Crissie. Sorry to hear about your Dad. We are aiming at the moment to stay as normal as possible so as not to think about what is coming. That way we can enjoy the time we have. Obviously adjusting out normals to include chemo etc.
    One day at a time.

    #91996
    crissie
    Participant

    Hi. I know this is devastating news. My dad lived 1 yr after his diagnosis but everyone is different and there are new therapies every day.

    #12320

    Hi My name is Maria Shearer and i live in Australia. The following introduction is how i found out my Dad was diagnosed with Cholangiocarcinoma of the Liver – Primary Biliary extrahepatic
    I since then have started a facebook page to raise awareness in Australia. Here is my story.

    Cholangiocarcinoma Awareness Australia looking for a miracle.
    Published by Maria Shearer · March 18 at 3:00am ·

    4 1/2 weeks ago my Dad was taken to hospital with a pain in his side. After an Xray and a CT scan he was told he had a mass on his liver and bowel, which could possibly be cancer. He was taken to the city hospital for futher testings. The city hospital then organised a colonoscopy and endoscopy which still did not clearly state where the primary cancer was however it clearly showed spots on the liver which they had determined was cancer. Now the search was on for the primary cancer as the blood tests showed the spots were secondary. He then had more bloods taken and a biopsy of which the results were given to us on Friday 11th March 2016. This date was highly significant as it was my Dad and Mums 49th wedding anniversary.
    It was a hot but beautiful sunny day. Dad Mum and my sister arrived at the specialists office to receive the results.
    The outcome was not good. We were advised that Dad had an aggressive and rare Biliary Cancer in the liver. Prognosis was 1-2 years worst case scenario. Needless to say we were all shocked and devastated.
    I was unable to stay in the Doctors office and i left to collect my thoughts and cry to the point i could not see.
    My father, my dad, my hero. How could this be, they must be wrong. Why why….
    I had taken the paperwork accidently the doctor had given my dad so i drove to his home a couple of hours later. I also dropped off a digital thermometre as he had to advise of temperature rises.
    We were numb, lost, confused, shocked, hurt, angry, sad, scared.
    The weekend allowed us to compute the news. We researched but didnt find much information. We needed answers as Dad was to start chemo on the Tuesday after the weekend and Monday was a public holiday. We found some answers in a friend who had knowledge. Yet it still was not what we wanted to hear.
    Tuesday came and we faced another specialist before the chemo. All of us were in the appointment, my sister and i loaded with questions. However this specialist explained everything, answered all our questions, gave empathy compared to the last specialist, was informative and made us feel as comfortable as possible considering the circumstances.
    However….
    He also gave us some news we were not expecting. That the diagnosis we received on Friday was incorrect and that Dad actually has Cholangiocarcinoma. Still a rare liver cancer within the Biliary of the liver, however there is not much known about this cancer except it is a silent fast killer.
    We were then told the devastating news that statistics show that Dad would probably only have 10-12 months best case scenario.
    Dad was then taken to receive his first chemo session. Together mum and dad walked through the doors, shocked, hurt, scared, sad, confused, devastated.
    I had told Dad – Do not listen to the numbers they say. Think positive because now more than ever tomorrow and every tomorrow that you are here will depend on all of our attitudes.
    When a few tears left his eyes he looked at me and said “I guess we dont have as much time”.
    I then told my Dad again to forget the numbers and concentrate on the belief we will make the time. I told him to not give up. I told him i loved him. I told him we are all here for him and we wont stop trying. I told him that every breath, every second, every minute is a moment in time we need to treasure and remember. And while he is breathing he is alive and time is only a measure, a vague measure based on clinical trials. We are not clinical and we are not a trial, we are battlers and we will create our own time. We hugged so hard and it was so hard not to cry. He then went into his chemo session for the first time.
    I then had to hold the tears welling up inside of me until he was out of sight, I had to then tell myself everything i had told my Dad. For i need to be strong for him to keep him positive and not let the negativity bring him down, for if it does, the mind being such a powerful tool, could increase the speed of the cancer.
    It is now Thursday and i still am struggling to find information, possible research, and others who have this cancer, or those who know of others who have this cancer.
    I created this fb page in Australia hoping and praying that together with our individual networks of friends and family, we can find others and find help to maybe fund research and possibly find a cure.
    https://web.facebook.com/Cholangiocarcinoma2016weseeyounow/

    To chat with others about it, to share information on the cancer and possible treatments whether they are clinical or natural. If you can help or know of anyone who can help, Please share.
    Until tomorrow, while we are still breathing, stay positive and stay strong.
    Always
    I love you Dad
    Maria xxx

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