Article Talk: My Story with Cholangiocarcinoma

Started by Julz, April 14, 2018
3 replies for this topic
Julz

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558 Posts
Posted on
April 14, 2018
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Cody00wilder

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Posted on
April 18, 2018
..... Thank you for your story Julz, i hope you are still doing well, i was drawn to your story and rare cancer because my 54 year old male cousin was recently diagnosed with Cholangiocarcinoma as well....very advanced already, stage 4....with no surgery possible he's told.... he's being treated at Dana Farber in Boston.... of course he's very depressed, and so far not doing so well, after 2 chemo treatments they had to stop due to an abcess and infection on his liver....he just got back home again after a week in the hospital.... i was just wondering if you have also incorporated any other alternative treatments in addition to the treatments you have written about....and if you feel as though they have been helpful in any way...?? I have not come across too many success stories with this rare cancer yet, only a few long term survivors holding on and still fighting... your story was very encouraging to read, and i will pass your story on to my cousin.....i wish you all the very best Julz...
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Gonzo9282

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Posted on
November 01, 2018
Julz id love to get in contact with you please . My grandmother just got diagnosed with bile duct cancer and you
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RayKAZ

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Posted on
January 24, 2020
Hi, I was diagnosed with Cholangiocarcinoma in August, 2019 at Banner MD Anderson Cancer Center in Gilbert, Arizona. It began when I noticed pale stools and the yellowing of my skin and eyes. I had a blocked bile duct. I went through two ERCP's that led to the diagnosis. The first ERCP only showed inflammation and no cancer. I was elated and hope this test was correct and that I didn't have cancer. He put in a couple of plastic stents that allowed my bile to flow once again. The GI doctor that did the ERCP said however, that he still suspected cancer and wanted to do another one in three weeks. Three weeks later he did another ERCP and diagnosed it as Cholangiocarcinoma. On October 17, 2019, I had the Whipple operation that removed the cancerous portion of the bile duct which was distal and located in the part of the bile duct that goes through the pancreas. They also removed the beginning of the small intestine, a small part of my stomach and half of my pancreas, the closest part to the cancerous bile duct. I was told by the surgeon that I was one of the lucky few they could operate on. He said after he removed the parts and replumbed my digestive tract, everything else looked clean. They think they caught it early. It is now January, 2020 and after a rough recovery from the Whipple operation, I am feeling great! My appetite has returned after losing about 50 pounds that I was glad to shed since I was overweight. Today I am beginning my 6 months of chemo by taking Xeloda pills. I take 4 500 mg pills at breakfast and 4 more at suppertime. I hope this goes well with little sickness. The surgeon and oncologists at MD Anderson appear to be optimistic but my primary physician is not so optimistic. They say they caught this early. The CT scans showed no masses in the liver or pancreas. Do I have a case for optimism? Please let me know. I need some hope for a cure. Thank you. Ray
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