February is Cholangiocarcinoma Awareness Month

Posted by on Feb 1, 2012 in Uncategorized | 12 comments

Salt Lake City, UT – February is cholangiocarcinoma awareness month, and The Cholangiocarcnoma Foundation will be leading numerous events in February to help raise awareness of this rare cancer. Events include fundraising for 2012 research grants, awareness drives on Facebook and Twitter, spotlight webinars on research efforts, and a call on Congress.

“February gives our dedicated community a month-long opportunity to channel their energy to educate the general public of cholangiocarcinoma (bile duct cancer) and the challenges associated with it,” said foundation president, Sara Hinkley. She added, “We’ll be offering engaging and informative activities based on our mission of Collaboration, Understanding, Research and Education to assist with directing our efforts.”

The Cholangiocarcinoma Foundation is a 501(c) (3) non-profit organization. Its vision is to bring about a CURE for cholangiocarcinoma.

12 Comments

  1. I really hope that someday there is a cure for this! My sister was diagnosed in August of 2011 and passed away in november of 2011. She never even had a fighting chance! The sadest part is she was only 37 and she left two small children behind and my three brother, mom, dad and me! She was my only sister and I never got the chance to even live half my life with her! They said this cancer is the worst to have because it progresses to fast. I hope there is a cure that can be found and someone in the future will have that fighting chance unlike my beloved beautiful sister!

  2. Dear Tammie,

    Thanks for sharing your experience. May your sister’s soul rest in peace and May her & your family get the courage to face this loss.

    My mum was diagnosed with Cholangiocarcinoma in Jul 2011 and she passed away on Jan 30th, 2012. My mum could fight Cholangiocarcinoma treatment since she was a brave woman and also because of the support she had from her family and friends. I wish there: is a way to detect Cholangiocarcinoma before it becomes metastatic and is cure for it.

  3. My dad was diagnosed with Cholangiocarcinoma in August 2011. He passed away on February 15, 2012. I watched how aggressively this disease took his life away and I pray that a cure or a way for early detection is found soon!!! My dad was only 64 years old. It hurts even more to not know how or why this happened. I suppose I need to be grateful for the time we were able to spend together.

  4. My sister was diagnosed in July 2011. She is 46 years old and giving it a hard fight. I had never heard of this kind of cancer before her diagnosis. I am sorry for all your losses.

  5. hi Wanda,
    My husband has recently been diagnosed with Bile Duct Cancer too. I am very sorry to hear about your dad, I am desperately trying to find help for my husband, who is not receiving any treatment as he is too ill. Any new research or advice you can offer would be very welcome .
    Kind Regards
    June

  6. My partner was diagnosed with this horrible cancer in August 2011, We are still fighting the fight. I pray every night that a cure will be found before she is taken from me. I’m saddened to hear of everyone’s losses, may there souls rest in peace. I pray for all the family’s that lost someone to have courage to go on without there loved ones.

  7. My wife of 18 years (and best friend of 28 years) died on Dec 15, 2011 from this nasty, horrible cancer. She was the picture of health until the summer of 2011 when she had some pains in upper right abdominal area. We took the gall bladder out, did the pathology test and were informed on October 4th (at 6:10pm – i remember it like it was yesterday) with a phone call from the surgeon with “shocker news”. My kids and I (12 and 16) will grieve for the rest of our lives but we also will continue to live as that is what Katie would want us to do (visit livelikekatie.org if you want to see an awesome pic of my gorgeous wife and quick summary of things). We all HAVE to work to find a detection device, marker, anything for this worst of the worst types of cancers which is not to minimize other cancers. Anyone who faces the various types knows that all cancers are the worst of the worst. But we also know that these rare cancers don’t get the attention or the research dollars (!) that we all would like them to receive. Katie’s doctors at the University of Chicago Cancer Center are truly outstanding doctors and researchers. They have some ideas as do a number of wonderful cancer centers around the country to explore markers and treatments. As we get stabilized, i hope to work in my area to try to raise money for some of these research ideas as are other folks around the country. Boy, give me that winning lottery ticket and it all goes to finding cures!! I truly pray for peace among anyone touched by cancer. Understanding it can only be done by experiencing it and that is something i pray fewer and fewer people have to experience: Someday. Have faith. God’s Peace. and hold your spouse’s hand for no reason at all – trust me on this one.

    • My husband, 56 yrs. who I’ve been married to for 32 years was diagnosed with Cholangiocarcinoma on July 5, 2011. He had the pain in his upper right quandrant as well for a few months before he called to make a doctor appointment. After blood work detected a high billirubin, was sent for ultrasound, mri and finally ct biopsy that confirmed his disease. It was Stage IV and also metasasized with two very large tumors in his liver. He went in July 8th to have stents inserted and the following week started chemo. One of the tumors were blocking the portal vein so that in turn caused additional issues. We live in the Chicago area and stayed with our local oncologist, but also had gotten second and third opinions from University of Chicago and University of Illinois. They both agreed with the treatment plan that he was receiving. He passed away on February 15, 2012. I have 3 daughters, 29, 27 and 18. The way he told me the news when the doctor spoke to him was, “I’m never going to see my girls get married…I’m never going to see my grandchildren.” He was lucky enough to see my oldest daughter get married. He was a wonderful, protective father and husband.

  8. I understand how you all feel.my mother is only 54, she’s been fighting since June 2011, we were fighting and doing chemotherapy every2 Weeks, twice on that week, the chemo was working at first, bit then it metastasized into the liver about 6 months in, now its in the lung too, and she’s in so much pain. We went from laughing happily last Monday to alzheimers like symptoms, short of breath and almost 60 oxygen level. I thought she was just sick with pneumonia, but the doctor and oncologist said it was the cancer finally progressed to its final run. She’s laying in the VA after having a tube drain the liquid from her chest cavity. I can’t converse with her or anything, she can’t see me either, because the morphine amounts she had to have keeps her under. At this point, she is pain free, but I’ll say this to anyone coming too this point, don’t try to keep your loved one alive, because no matter how many machines we can use to keep them going, the cancer will just make them suffer in pain that much longer. I said too make her a dnr, because even though my mother is my everything, i’m not going to make her suffer any longer just because I selfishly want to keep her alive. I pray one day there is a cure for this evil disease, and pray noone elses family had to suffer from it.

  9. My brother was diagnosed 1 year ago, and I wish to make awarness to such a horrific cancer. I thank god for Cooper Cancer Center, New Jersey for giving him life this past year.

  10. We have been going through this for almost a year and a half. My Mom had her Gall Bladder removed, they found that she had a Distal Bile Duct and has been having stents put in. We have had blood work, CT & PET Scans, EUS, everything and still today we have no clear answers. At first they were leaning towards Pancreatic Cancer and today we went to the Cancer Doctor and he now is saying he believes that it is CC. He stated the only way to rule it out 100% is by having a Whipple Procedure performed. I can not understand why her test are not showing anything other than a confirmed bile blockage, but the test are not showing up for cancer???
    My Mom is 70 years old and only weighs 97lbs and she at the moment has ruled out the Whipple. It’s like we are damned if we do/dont. My heart is broken!

  11. Our life has been a storm the last few months, My husband was diagnoised with Cholangiocarcinoma on October 25, 2012, and passed away December 18, 2012. He never had a fighting chance! This cancer never showed itself until it was too late and nothing could be done, but take him home and make him comfortable, I could’nt believe what the Dr’s were saying to me. He didnt have symtoms of any type, no pain at any time. The reason he was taken in he was jaundace and we could’nt figure out why. As the weeks passed I saw that was not my husband in that hospital bed anymore. This terrible illness had taken over and it was time to let him go be with our Lord. With Hospice he was comfortable on morphine all the time. I miss so much what we had just 2 months prior, the laughter, working on our ministry together, just sitting and having our coffee together, traveling to see our grandson, son and daughter-in-law. I have been robbed by Cholangiocarcinoma. My prayer is that a cure and early diagnoises is found, so that no one else go through this unbelieveable journey I have gone through. I’m still trying to understand.

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