Denise@LTC's Journey with Bile Duct (Cholangiocarcinoma) Cancer

Family/Friend: Bile Duct (Cholangiocarcinoma) Cancer

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: over 7 years ago, Female, Age: 52

  1. 1
    • Denise@LTC
    • Experience with Bile Duct (Cholangi...
    over 5 years ago
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    Diagnosed

    Oh No

    In January 2010 One of my best friends was diagnosed with CC. This struck us all hard. My group of friends had recently reconnected after raising our kids. We were friends since grade school. This diagnosis opened up a realization it could nave been any one of us. Why Kim? I think we were suddenly faced with just how irrelevant all our everyday problems were. Here was a single mom in her mid forties, suddenly facing the unthinkable. So as long time friends do, we cried, we got angry. We spring into action. Her birthday was 2 weeks from that day.. We need to celebrate life and stop crying. So I went out bought all of us foil wigs for party hats and we had a birthday dinner.. Knowing full well what the year would bring. Chemo was on the horizon. Kim was in Nursing School and typing for a living , She would need treatments sand have to quit her job. Ugh what to do.....

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  2. 2
    • Denise@LTC
    • Experience with Bile Duct (Cholangi...
    over 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Kim started Chemo right away.. she would be go every other week. We try to plan a little something to see her on her good week. But she could feel her tumor. She knew it wasn't working. She pleaded with the Drs. to do a CT scan.. they soon found, not only did the tumor not shrink but it was still growing. The chemo was not working. A 10 cm tumor was in her liver and no one wanted to operate. They wanted to shrink it but not happening. What now? If you asked her oncologist at the time all she needed was pain meds. They needed to continue their studies.. She should stay on the chemo. Kim would have no parts. She knew her body and she knew she wanted it out. She set out to find options. She was a mom. She needed to get the answers she was looking for...

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  3. 3
    • Denise@LTC
    • Experience with Bile Duct (Cholangi...
    over 5 years ago
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    Celebration

    Money was of course tight. Applying for disability would take months. The first check wouldn't be seen for six months. So what to do? A benefit... We would find a hall, and have the food and beer donated. The DJ volunteered and all the troops rallied to get donations. The support was so incredible. We had so much food. A Cheer Basket, Raffles, Silent Auction. Everyone stepped up to the plate. An account was set up in Hope for Kim. this is important for tax purposes. We raised close to 10,000 dollars. This would be what she lived on for the next few months.

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  4. 4
    • Denise@LTC
    • Experience with Bile Duct (Cholangi...
    over 5 years ago
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    Drug or Chemo Therapy

    While chemo wasn't working, the drs weren't giving her much hope. A timeline of 3-6 mons and this was so unacceptable. Friends made a meal calendar, and people would all place their names on the board and bring dinner/meals to her home. But Kim would set out in search of someone to help her. She would not accept the news she received.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  5. 5
    • Denise@LTC
    • Experience with Bile Duct (Cholangi...
    over 5 years ago
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    Decision Point

    So Chemo wasn't working, Kim knew she needed this tumor out. Where to go? So she starts her search. Using out of pocket money, she seeks out the answers she is looking for, a surgeon brave enough to operate and remove this tumor. The best hospitals in Philadelphia. She would see top drs. in three area hospitals. They wouldn't touch her. They pretty much told her no hope. They suggested she try a different chemo. Make her peace. Well they don't know Kim. No way.... not an option.

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  6. 6
    • Denise@LTC
    • Experience with Bile Duct (Cholangi...
    over 5 years ago
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    Surgery

    Procedure or Surgery

    A chance conversation leads Kim to a hospital in New York City. A Dr. there may consider resecting her. We are strong believers in things happening for a reason. Kim sends her scans to New York, praying she is a candidate for resection. Meanwhile meeting with Drs. about Y90 radiation. She is not giving up. Imagine the shock when Dr.Kato called Kim and agreed to resect her. She was headed to NY to see a transplant specialist who would remove her liver and veins. A team of Drs. would operate on her and another team on her liver. They would make a working viable liver from a 1/4 of her liver. Removing the entire tumor.. taking her jugular vein and making it her portal vein. She would be 1 of only 6 patients to receive this type of surgery. The surgery estimated at 11-30 hours long. But Dr. Kato believes he can do it. Kim as scary as it sounded was by far the bravest woman i know. She heads to NY to see this Dr. and discuss her surgery. She agrees and surgery is set for July 2010.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  7. 7
    • Denise@LTC
    • Experience with Bile Duct (Cholangi...
    over 5 years ago
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    Oh No

    Oh no. All this work, never giving up. Finally finding someone to resect. And the surgery scheduled. What? What? Insurance has denied the surgery.

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