World Cholangiocarcinoma Awareness Day February 17th 2016

Today is World Cholangiocarcinoma Awareness day. Bile Duct cancer is not a sexy cancer. You won’t see anyone telling you to do a self exam, there isn’t a huge amount of money donated to research on this, and it is really a small movement of people raising funds, and awareness of it. Most people have never even heard of CC until the unfortunate diagnosis, that is how rare it is.

Because this blog is about Mikes terminal diagnosis of this disease, and his experiences trying to live with this deadly cancer, I thought it would be helpful for me to review some of the symptoms that go along with diagnosing this disease, so if you experience any of them it may cause you to pause, and take some action instead of ignoring them until it may be too late.

Instead of boring you with lists of symptoms, etc I will just tell you what Mike experienced when he was finally diagnosed with this disease. Remember, he had pancreatic cancer in 1999, and is missing a bunch of stuff in his stomach, so his symptoms are probably a little different than most.

The two most common symptoms people in the groups describe are pale stools, and jaundice. Jaundice is yellowing of the eyes and skin. In fact, Mike had jaundice in 1999 which is what propelled him into the doctor where he was diagnosed with pancreatic cancer. Some of the other common symptoms are itchy skin, dark urine, fevers, and pain in the abdomen that radiates around to your back.

Mike didn’t have any of these symptoms this time, except for some itching. What he did have is fatigue. Fatigue that would cause him to take naps at times he had never taken naps before. In fact, when we started dating his phone alarm would go off around noon on weekends, and he explained that he would nap at work at ┬álunch time everyday in his car, and the alarm was a reminder to wake him, and get back to work. ┬áHe had an hour drive home from work at that time, and he would have to stop at a rest area, and nap on his way home. That is the level of fatigue he was experiencing, and what propelled him to seek medical care.

Because the symptoms can be misdiagnosed as gall bladder issues, gastritis, or stomach issues it is often too late to do anything once the cancer diagnosis is made. In fact, Mike has it in 2 lymph nodes as well, which is why his was staged at level 4 the most deadly level. He was not a candidate for resection, or radiation. In fact, until he was offered the clinical trial that is saving his life he was told that there wasn’t anything else they could do for him after this chemo stopped working.

The only way that I can make sense of this hideous disease, and the why of it all is to spread the information I have learned about it to you. It may help you, you may file it away and someday it pops into your mind when you have some weird stuff going on, or someone you love tells you about some weird itching they are experiencing. That could be a key to early diagnosis.

My voice, fingers, and heart are all I have to fight this hideous disease. – Join me!


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