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    Hi Alison and Mike,
    Just letting you know I’ve read your Mom’s intro and see that you guys are right on with your support. The Only thing I could add to my rambling is cisplatin is harsh and that to take anti-nausea pills every 6 hours during the day and don’t wait to take PRN (as Needed). Cisplatin will cause nueropathy in the feet, toes, and fingers after a few treatments; but nothing compared to what she has already been through.

    God’s Speed to you all!!!


    Hey jules,

    We are located in Cleveland, OH. Our oncologist, Dr. Afshin Dowlati, is actually the doctor who is heading the international trial our mom was participating in. It was his recommendation to start the Gemcitabine and Cisplatin next. He has a number of follow up drugs to try if or when this combo fails to show positive results. We have also been doing our own research. This site has helped us so much, not only in our research but emotionally as well. It is so helpful to see that there are many others out there fighting this disease with us. Thank you for all of that info!

    Alison & Mike


    Alison and Mike

    I am sorry to hear about your mum. Where are you? – I know of one trial in the UK using XL119, I heard that all the patients where taken of 5FU and given the XL119 because the patients in that arm were doing so much better.

    My Dad was on gemcitabine and carboplatin which made him quite tired. Platinum drugs and gemcitabine seem to be the first line treatment for non resectable disease, you should be aware that there are different generations of platinum chemo drugs (ie some are newer and better on the toxicity front then the older ones) carboplatin is not as harsh as cisplatin (2nd generation) and oxylplatin is 3rd generation. Quite a few patients on this site have used oxy. Treatment options vary depending on where you are and whether you have an oncologist who is prepared to think outside the box and try newer breakthrough treatments. This site is very informative – try looking at the chemo worksheets under general info section and discuss all options with your mums oncologist.

    Hope this helps, Jules


    Our mom, Pat, age 53, was diagnosed with cholangiocarcinoma in March of ’06. Like most of your stories, the doctors had a very difficult time in diagnosing what type of cancer she had. The doctors first thought she had gall stones, or acid reflux. Then her symptons increasingly got worse. Mom was always full of energy, but she slowly started to get more and more fatigued. Her appetite decreased as well. Then came the abdominal pain followed by the jaundice. Mom was admitted into the hospital. After numerous tests they found her cancer stemmed from the bile duct. At this time we were told that the cancer was in stage four. It had spread throughout her liver and into her lungs.

    She then had to undergo surgery to open up her bile duct. The first try was unsuccessful. This is when we all started to fear the worst. Thankfully, on the second try, the doctor was able to get an external tube through her bile duct to release the bile. She had to have an external bag connected to the tube for a few days. This tube was left in her for more than a month. Then an internal, metal stent was put into place.

    She was placed in a single blind clinical trial. There were two types of chemotherapy, 5-FU or XL-119, of which she would be given one. Her chemo schedule was five days on, followed by a break of three weeks. After three cycles of the chemo, she was given a CAT SCAN. We saw such positive results in that first CAT SCAN! All of her tumors shrank drastically. Therefore, we continued on with this process. Following the second CAT SCAN, the results were positive once again. The doctor even stated that most of the tumors on her lungs had nearly dissappeared. So of course we continued on. Following the third CAT SCAN the results were not good. Just yesterday we were told that her tumors have grown. Therefore, she was taken off of the study. We also learned that she was on 5-FU during this trial.

    Tommorrow, the 4th, we are going to start a new treatment. She will be given a combination of Gemcitabine and Cisplatin. We are all hopeful this combo will work.

    Our mom is such a fighter! She inspires us each and every day. Never give up hope!

    Alison & Mike

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