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Cholangiocarcinoma - is there anyone out there with this type of Cancer?

Hi, I'm Kat R

This is a rare form of biliary cancer that I understand affects approximately 2,000 people annually. I was first diagnosed with it in 2006, had surgery, then was Cancer free for 8 years. It returned in 2014. I am currently undergoing a trial study with the Sarah Cannon Research Institute in Nashville, TN.

I would like to know if there is anyone else out there with this type of Cancer?

Thank you!

  • Post #1
  • Tue Feb 16, 2016
Hi, I'm Richard W M.

I don’t have cholangiocarcinoma, my wife did, 2011-2014. She did very well with radiation and oral chemo treatment in 2011. Then another small tumor showed up near edge of original radiation. Elected to go cyberknife treatment, worked well. Then in 2013 another small tumor appeared and elected for cyberknife again. However one day after markers inserted she came down with bacteria infection which she fought for five mos to no avail. You are first person I have seen/read having this uncommon cancer. I wish you well and keep the faith!

  • Post #2
  • Sat Feb 20, 2016
Hi, I'm TARA M K.

I believe my mom has this..I was told only 2°/° of population have it.
She is undergoing treatment but no one knows or seems to know much about it. She is strong but I don’t know how long she can endure Chemo and radiation.

  • Post #3
  • Sun Feb 21, 2016
Hi, I'm Thomas S.

My husband was diagnosed with Cholangiocarcinoma in Nov. 2013. He received 28 treatments of chemo (Xeloda) and radiation simultaneously. As of this past January there has been no recurrence. The underlying disease is Primary Sclerosing Cholangitis, which he continues to have to deal with.

  • Post #4
  • Sun Feb 21, 2016
Hi, I'm Howard M K.

I wrote a review of my history with this cancer, it was rather lengthy and don’t know if it was posted. How can I check that?
HMK

  • Post #5
  • Sun Feb 21, 2016
Hi, I'm Howard M K.

I believe my earlier comments were lost. I was diagnosed with this form of cancer in April of 2015. I had stents installed in both bile ducts to provide normal flow of bile. My problem was discovered when I developed a blood infection causing a fever. After the infection was cured I started a 6 weeks regimen of radiation which was followed by chemo infusions of Gemzar and Oxaliplatin for about 3 months. I am now on a pill form of chemo by the name of Xeloda which I also received while getting radiation.

I understand this is a rather rare for of cancer and in my case is inoperable. I get regular blood tests including a test for cancer markers. I marker levels have fluctuated and I am due for a test soon.

HMK

  • Post #6
  • Sun Feb 21, 2016
Hi, I'm Jeffrey A.

My liver tumor was detected March 2015. Fortunately it was operable; the diagnosis was intrahepatic cholangeocarcinoma. The left lobe and part of the right were resected and the gall bladder and nearby lymph nodes also removed. Tissue biopsy indicated that the cancer had not spread from the original tumor site. Since I had recently completed a chemotherapy series for CLL the Dr did not want to subject me to another round of chemo. Because there were no areas to target with radiation the course of follow-up has been CT scans at 4 month intervals and a chest x-ray. Blood test protein markers are also checked. So far all tests have been negative.

JLA

  • Post #7
  • Sat Feb 27, 2016
Hi, I'm DONNA R.

I am a 46 year old female. I was diagnosed with cholangiocarcinoma last summer, or more specifically, intrahepatic bile duct carcinoma. I have a mass on my liver, multiple enlarged lymph nodes near the liver and multiple nodules on my lung. I am not a candidate for surgery or radiation. I did 4 rounds of chemo (Gemcitabine & Cisplatin) with no good results. In fact, during that time, I had new growth. Now I am on a clinical trial through Cancer Institute of NJ. This trial is precision medicine that is targeting the mutation of the cancer cells. After two 28-day cycles (8 weeks) I had a CT Scan. I received awesome results! Almost everything shrank by 50% and no new growth! I just had another scan a few weeks ago. Even though these results weren’t as significant as the last one, they were still good! My disease at this point is considered stable. So I will continue on this trial until………

  • Post #8
  • Tue Mar 15, 2016
Hi, I'm DONNA R.

until there is a cure!! :)

  • Post #9
  • Wed Mar 16, 2016
Hi, I'm Holly R P.

I was diagnosed with ICC in May of 2015. I had a resection where they removed a 8cm tumor along with gallbladder and 60% of my liver. I had no adjuvant therapy. At my 9 mo check up we found a new spot on liver. They are going to do an ablation followed by chemo.
HP

  • Post #10
  • Thu Mar 17, 2016

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