Front row tickets to hell

Discussion Board Forums Introductions! Front row tickets to hell

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  • #58433
    pcl1029
    Member

    Hi,
    I know how you feel. Your world is upside down,you have no one to turn to for a cure or even begging for a few years more.you feel you try your best but the efforts is in vain.you are mad as you could be. If so you are quite typical of a caregiver responses.
    I have the intrahepatic cholangio CCA like your father for 34 months now,I had a 8x5x6 liver tumor also but no metastasis. I had 3 resections and is currently on chemotherapy. In short CCA is a long and winding journey that require patient,knowledge and planning ahead to navigate on it. I do not put any blame to anyone an myself ,I look at what happened to me is out of my power and ability, I only can try my best from this point on to provide the best of I know how as an example to those who are patients and care givers that there is always hope and comfort to those who seek it. I ,as several studies also found praying is good to relieve the anxiety and provide inner-self calmness for me to manage my disease and daily affairs. Good luck in your research.
    Being said so, below are a few current recommendation in the States for treating CCA.
    since I am not a doctor and only a patient and do not have the details of your CCA image scan record; I cannot provide more specific help to you at this point.
    But in general, for intrahepatic CCA,that is the cancer is originated in the bile ducts of the liver ;if there are metastasis like lymph nodes involvement out side the liver, chemotherapy and molecularly targeted agents are the choice of SYSTEMIC treatment.
    2nd opinion from a liver specialist, an interventional radiologist and medical oncologist from the best medical institution is recommended. surgery radiation and oncology are the triangle of treatment planning for cancer especially this one.

    Chemoembolization and radioembolization may be also considered if the tumor is too large and multiple, but the tumor burden should be within limits of the protocol (ie.<50%). Portal vein involvement is not an absolute contraindication for radioembo.BTW,This are palliative treatments and may provide disease progression free time for 1-2 years and hopefully newer powerful drugs with less side effects will come out to provide long term treatment and make this disease like a chronic disease( ie,like high blood pressure). Please read other radioembolization messages under the forum discussion of Radiation etc.

    If the tumor or tumors are small(ie: God bless.

    #58432
    jathy1125
    Participant

    SugarPlumFairy-My heart just breaks for you and your family. You put into words what we all have felt and are feeling. Please know that this site will be a big comfort during this battle, you will recieve so much comfort, prayers, HOPE and inspiration in our CC family.
    Lots of prayers-Cathy

    #6455

    I have the best Dad in the world (65yo). He was the big athletic man’s man. He used to call me his sugar plum fairy. He gave me and my brother the lions share of his free time when we were growing up. He had never ending time to listen to us and share in our every growing up moments. As a young kid I would sit on his knee after he mowed the lawn and smell the cut grass and despite being stinky and sweaty he would let me give him a big cuddle. I rearranged his car when I learnt to drive and he didnt say a bad word about it. My house is now full of the furniture he has made for me and my family.

    Only 6 weeks ago my life was pretty damn good, my husband and kids and I just moved into the new house that my Dad and I just painted together, Dad (who lives 200km away) was playing his usual tennis comp my mum and dad went out for dinner and he was ill that night. A few days later he called me to tell me the GP said he had cholangiocarcinoma and it was 9 x 8 x 4 cm. He was then told that he had about 8 weeks to live.
    WTF
    We got him to the best hepatabiliary surgeon in Sydney we were pinning our hopes on him but he would not operate too.
    It is intrahepatic with satellites in the liver and it has surrounded the vena cava metastisised to lymph nodes up the aorta in the chest. Surgery is not an option and we have been spending an agonising 5 weeks attempting to get his bilirubin under control with stents. We are hoping to give him gem/cis chemo in the event it comes down.
    I am distraught especially at night in the dark. I worry that he is worried that death is approaching. I know he can’t look at my kids with joy anymore I see sadness in his eyes now.. I know he is sad that he will miss out on seeing his grandchildren grow into wonderful young men and women.
    I know you have all been through this. It is now my life. I can’t let him go. 8 weeks is a cruelly short time to get used to the idea that the most beloved father is going to die. His tennis gear is still soaking in mums laundry tub, he has his favorite food still in the fridge his car is in my brothers garage. He must wake every day in hospital and remember that he will die soon…and relive every feeling.
    He is in hell and I have front row tickets to watch in horror.

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