Discussion Board Forums Introductions! My Husband and Cholangiocarcinoma

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  • #34408
    gavin
    Moderator

    Hi Margaret,

    That sounds like a fighting attitude to me, and a positive attitude will definitely help you here! My dad wasn’t able to have radiation or chemo, and his attitude throughout his fight was, well what can we do.

    I found this on the Macmillan site that may help –

    The cause of most bile duct cancers is unknown. There are a number of risk factors that can increase your risk of developing bile duct cancer. These are:

    Inflammatory bowel disease People who have a chronic inflammatory bowel condition, known as ulcerative colitis, are at an increased risk of developing this type of cancer.

    Abnormal bile ducts People who are born with (congenital) abnormalities of the bile ducts, such as choledochal cysts, are more at risk of developing cholangiocarcinoma.

    Infection In Africa and Asia, infection with a parasite known as the liver fluke is thought to cause a large number of bile duct cancers.

    Bile duct cancer, like other cancers, is not infectious and cannot be passed on to other people.

    Hope some of that is useful.

    Hi Marion,

    The point you make about improved diagnostic methods being partially responsible for the steady rise in CC numbers seems very sensible to me. Surely if over time, doctors know more about what they are looking for and how to diagnose something, then they will find more cases of that and reported instances of it will rise. Perhaps over the last few decades and due to the lack of research and stuff, cases of CC have been mis-diagnosed as other diseases, gall bladder related etc. Or maybe I am way off the mark with my thinking?

    Best wishes to you all.

    Gavin

    #34407
    marions
    Moderator

    These are some of things I have learned:
    Known risk factors for cholangiocarcinoma include
    primary sclerosing cholangitis (an inflammatory disease of the bile ducts), congenital liver malformations,
    infection with the parasitic liver flukes Opisthorchis viverrini or Clonorchis sinensis,
    and exposure to Thorotrast (thorium dioxide), a chemical formerly used in medical imaging.
    However, most patients with cholangiocarcinoma have no specific risk factors.
    Approximately 7,200 new patients are diagnosed with cancer of the biliary tract (the gallbladder and bile ducts) each year, in the US. It is the second most common cancer of the liver and approximately, each year, about 3600 people will die of biliary tract cancer; accounting to about 1% of all cancer deaths.
    When Pauline and I attended the World Conference of Gastrointestinal Cancer in Barcelona we learned that the occurrence of Cholangiocarcinoma is estimated to be near 3% world wide.
    Multiple studies have documented a steady increase in the incidence of intrahepatic cholangiocarcinoma over the past several decades with the reasons unclear. Improved diagnostic methods may be partially responsible. Taiwan has the highest incidence of this cancer.
    Just a few more thoughts to share with the hope that others will follow with more information.
    Best to all,
    Marion

    #34406
    mlepp0416
    Participant

    Lainy and Gavin, thanks for the info. When Tom’s VA doctor poo’d treatment that is exactly what we did, we sought second and third opinoins! It may be that radiation and chemo won’t work but we are not giving up without a fight! Parasites account for many liver cancers, or a Liver fluke as it is called, but most of the CC that is seen in the us is ‘idopathic’ which means that they don’t know where it comes from or how it comes about. My Tom was never in Asia, his brother was and his brother married a girl from Vietnam. We’ve even wondered if it Tom could have gotten it from ‘association’ with his brother and his brother’s wife, but I don’t think that is possible. Food for thought however how remote, I guess one will never know…

    Go with God and Keep KICKIN’ that cancer.

    Margaret

    #34405
    gavin
    Moderator

    Hi Margaret,

    I don’t know what the numbers of cases are each year for Scotland, but for the UK as a whole, I have read that it is about 1000 cases diagnosed each year.

    I agree with what Lainy says in that if you come across a doctor who poo poo’s treatment, then it is time to find another doctor. I guess that we were very fortunate in that dads specialist at our local hospital was very knowledgeable in CC, and had been involved in and was at the forefront of developing PDT as a treatment option for CC in the UK.

    Never give up and keep kicking it big time!

    Best wishes

    Gavin

    #34404
    lainy
    Participant

    Hi Margaret, butinsky here, buttin in…..Teddy and I attended a conference here in PHX last March with Marion. The Conference was for surgical Oncologists from all over the World. We actually met quite a few from Asia. Not sure but I think there were about 2,000 ONCS. About 15,000 people a year get CC. In my book 1 is too many, know what I mean? There is not much research done on CC because it is so rare but I just read where a little research is being done in Tawian. Never heard it was more prevalent in Asia but it is said they do have a parasite in some of the water called a “liver flukes” that may be a carrier. It attaches itself to the bile ducts and lives there undetected for 30-40 years. When it leaves it leaves behind CC. You can look it up on the Web. We had a few Korean Vets on our site who had CC, Teddy being one of them. This is not proven yet, just considered. It doesn’t account for others who have not been to Asia. I think many doctors poo-poo treatment because they don’t know enough about it! Any doctor who poos treatment about anything to me does not want to admit he doesn’t know. That is when I run to another doctor. Sorry, that is just how I feel about a rare disease. Also why we tell people to ask a doctor how many patients he has treated with CC. I love all your questions as the best way to “kick” this is to learn as much as you can. Keep on asking and keep on kicking!

    #34403
    mlepp0416
    Participant

    Thanks Gavin. How many cases of CC do they track yearly in Scotland? In the US it’s reported to be between 2,000 – 4,000 cases a year. From the different things I’ve read I think it’s closer to about 1,500 cases per year. Very rare and accounts for only 1% of all liver cancer’s in the US.

    I know it’s a very common cancer in Asian countries. Part of the problem in the US is that many oncologists never encounter this type of cancer, hence why Tom’s oncologist at the VA Medical Center in gave us no hope at all and poo-poohed the suggestion of Radiation and Chemotherapy. I wonder why the doctors in the Asian countries do not confer with the others doctors in other countries. One would think that woud be common sense.

    Go with God and Keep Kickin’ that cancer.

    Margaret

    #34402
    gavin
    Moderator

    Hi Margaret,

    Excellent stuff, more good news!

    Keep dancing and kickin it!

    Best wishes

    Gavin

    #34401
    mlepp0416
    Participant

    Darla: I’m dancing and Kickin’ it!!!

    #34400
    darla
    Participant

    Margaret, More good news. This is great. Keep it comin’. Keep kickin’ it and keep on dancing! :)

    Darla

    #34399
    mlepp0416
    Participant

    More good news today, the doc’s told Tom that his Tumor Markers are coming down! But of course he didn’t ask what they had been or what they are now. (I think it’s a guy thing! Sorry all you guys out there) Us women like to get the nitty gritty details! I’ll have him ask detailed questions on Monday! I do know that his Alkaline Phosphatase is very high yet at 1,479, and his GOT/AST is high at 98, and his GPT/ALT is high at 90. Sodium, Potassium and Chloride are all low. I don’t see any ‘tumor markers’ such as CA19, etc. on the blood work sheet so we’ll just have to wait to find out. More Happy Dancing tonight!

    Margaret

    Keep KICKIN that cancer!

    #34398
    gavin
    Moderator

    Hi Margaret,

    Yeah great news! I hope you keep dancing and kicking that cancer!

    Best wishes to you and Tom.

    Gavin

    #34397
    darla
    Participant

    Margaret,

    What great news. Keep it coming & keep on dancing! :)

    Darla

    #34396
    mlepp0416
    Participant

    HAPPY DANCE!!! To all our friends on this site – I’m DOING THE HAPPY DANCE….Tom’s Bilirubin level is DOWN…only 2 points, it was at 24.7 and blood work was done yesterday and it is 22.7. That is good news (and we need more good news like this!)

    Still waiting on the culture, and Raye, his doctors are watching the blood in his drain bag. They are not too concerned about it yet, but they are keeping an eye on all his numbers! Nothing to be too concerned about yet, other than his white blood count is 15.6 so they know that there is an infection somewhere….

    Gavin thanks for your thoughts, I do keep Tom bundled up! We have a gas fireplace with a blower and Tom’s chair is very close to that, plus he has a electric blanket. (Some days it’s so hot in the house that I have to step outside to cool off, even if it’s only 20 degrees outside here in Wisconsin) Our poor friends that drive him to his radiation appointments, they are sweating by the time they get to the hospital cause he gets so cold.

    Gaye, I’ve accepted you as a friend on FB!!!

    Marion, FB is pretty easy once you get the hang of it!

    I’ve got tons of pictures posted on FB, so go ahead and check it out!

    Will post more as I know more.

    Love to everyone and Keep KICKIN that Cancer.

    Margaret

    #34395
    marions
    Moderator

    Margaret…..more will be revealed regarding the origin of the infection once everything has been cultured. I will try will hard of linking to your facebook page but, I have to admit of not being very good at it. I will try my best. In the meantime though, I have my fingers crossed for a quick resolve of the problems your husband is encountering.
    Tons of good wishes coming your way and my heart is with you,
    Marion

    #34394
    savingrace
    Member

    Margaret,
    What a difficult time…I will keep you, your husband and family in
    prayer..will look you up on facebook. Bless you…Gaye

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