1 (edited by susanfc Sun, 17 Mar 2013 14:59:10)

Topic: Asbestos exposure

Hello. My dad recently passed with ICC. He asked me more than once why he got this cancer. I had hoped I would have a better answer but did not until now, unfortunately.  During his illness, no one ever asked about his occupation and exposure to asbestos.  My dad was a retired naval officer and did travel to Japan while in the Navy.  I recently came across a study published by Univ of Bologna, Italy which found that ICC/ECC could arise from a chronic inflammation caused by deposition of asbestos fibers. I then discovered that as a naval officer who spent considerably time on ships in the 60's-70's he was definitely exposed to asbestos.  Naval ships were laden with asbestos containing materials until mid 1970's-- it was not just the shipyards but in bedding, insulation, etc.  Perhaps this is not new to some of you.  I am curious to know how many diagnosed with ICC or ECC are aware of this association.  The Navy Asbestos Victims Association cannot even have a conversation with me because my dad was not diagnosed with mesothelioma. I must assume the Navy does not recognize CC as a consequence of asbestos exposure.  Anyone have any thoughts on this?  We have been making contributions to this organization in lieu of flowers since my father's death 2/27/13.  It is important to my mother that we continue to work to beter the outcomes of this difficult disease. (It seems, his travel to Japan puts him at risk due to possible infection with liver fluke - chlonorchis sinensis.) No one ever talked with my dad about why he had ICC-- other than to ask if he ever had hepatits or was a drinker.
Thank you all.

Re: Asbestos exposure

Hi Susan,

I am very sorry to hear about your Dad. I am sending you my heartfelt sympathy. I don't think anyone really knows why a person gets CC. There have been studies about lots of things to try and figure out what causes it. Why would some get it when exposed to certain things and some not. I hope one day we will know why. Why would my healthy(and at the time 25 year old) daughter develop this cancer?? We have all eaten the same food and lived in the same places. It has to be some weird genetic mutation in her case. Thank you for the contributions to this foundation. Hopefully one day we will know more about this terrible disease.

Best wishes,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Asbestos exposure

Dear Susan I am very sorry to hear about your Dad and unfortunatly about the only thing we know for sure about CC is that we know not much. With that said there are treatments and break throughs now that we didn't have just a couple of years ago. My husband seved in Korea and being the Sicilian he was I am sure he tried the much revered and eaten fish that contains liver flukes. He was NEVER sick in his life and like you say where the heck did this come from? Not sure what really causes CC but I know for sure it seems to take the very best!

Letter from Heaven  by Ruth Ann Mahaffey

To my dearest family some things I'd like to say
But first of all to let you know that I arrived okay,
I'm writing this from Heaven. Here I shall dwell with God above
Here, there's no more tears of sadness. Here is just eternal love.
Please do not be unhappy because I'm out of sight
Remember that I am with you every morning, noon and night.
That day I had to leave you when my life on earth was through
God picked me up and hugged me and He said "I welcome you,
It's good to have you back again,
you were missed while you were gone,
As for your dearest family, they'll be here later on.
God gave me a list of things that he wished for me to do
And foremost on the list was to watch and care for you
And when you lie in bed at night, the days chores put to flight
God and I are closest to you . . in the middle of the night.
When you think of my life on earth and all those loving years
Because you are only human, they are bound to bring you tears
But do not be afraid to cry, it does relieve the pain
Remember there would be no flowers, unless there was some rain.
One thing is for certain though my life on earth is o'er
I'm closer to you now than I ever was before.
There are many rocky roads ahead of you and many hills to climb
Together we can do it by taking one day at a time.
When you're walking down the street and you've got me on your mind
I'm walking in your footsteps, only half a step behind
And when it's time for you to go . . from that body to be free
Remember you're not going . . you're just coming here to me.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Asbestos exposure

Susan, my husband has cholangiocarcinoma .   He nearly his entire 20-year career in the Navy on sea duty and all but one tour consisted of cruises to Southeast Asia, including during VietNam.   Several of his early ships contained lots of asbestos, as you describe.  In fact, I was just reviewing his military medical record and some pages have "ASBESTOS" stamped on them. 

So far the Veterans Administration does not recognize cholangiocarcinoma as a presumed service-related disease.  However, with the rise of occurrence of this disease, which includes an increasing number of veterans, the VA is getting a significant number of claims.  After years of denying the claims, they are now starting to approve a number of appeals.  I was reviewing the VA appeals and year before last they approved 3 and last year they approved 12.  So I suspect that cholangiocarcinoma will soon make it to the presumed service-related list.

I've not seen one case, however, that the VA cites asbestos as the link.  The known cause that they cite is a parasite called the liver fluke which servicemen and women may have ingested while in SE Asia, where the disease is predominant.  But some studies, like the Bologna study you cited which suggests strong evidence for a link, do suspect asbestos as a cause.  Here is another from the University of Washington in Seattle: http://www.cells4research.com/files/Pat … cinoma.pdf

I'm doing all of this research so that I can file a claim with the VA on behalf of my husband but, honestly, it is the last thing I want to be doing when his time is so short.  It's very sad we have to go this.  If your mother is still alive, she should file a claim because there is a special indemnification allowance paid to widows on a monthly basis.  I believe it is around $1,100/month.  Hope this information is helpful.  And I am very sorry to hear about your father.  God rest his soul.

Re: Asbestos exposure

Susan....my heart goes out to you and your family for having lost your dear Dad to this cancer.
Please share with your Mom that since its inception, the goal of the Cholangiocarcinoma Foundation has been to bring awareness to this disease, strive to improve on collaboration among researchers, public and private institutions, and no-profit organizations, to provide resources to assist in the challenges our patients community encounters, support furthering research and grant monies to researchers engaging in cholangiocarcinoma studies, and to educate by providing the most current information through this website, newsletters, support of medical conferences, and community outreach. 
Much has been accomplished, but we have a long way to go.  It is not an easy undertaking, but we will prevail.   -
I would like to share a few thoughts:
Dr. Juan Valle (Gem/Cis) mentioned in one of our conversations the difficulties encountered when first contemplating an international, clinical trial for this disease. And, yet, he and his colleagues prevailed by establishing the first recognized standard of treatment for this cancer.   
What I am trying to convey is that we have to continue to focus and support those entities actively searching for answers to this disease.  And, we have to nudge and probe those not willing to go there; this includes the VA Administration.
For example: due to the filing of a lawsuit against the State of Texas a family was able to require Medicare to cover liver transplantations for intrahepatic CC.   Not that a lawsuit is the answer to all our problems however; we have to continue to work hard and we have to work together in order to bring about changes within the established systems.  We have the power to do so.  It takes time, commitment and a collaborated effort, but ultimately we will succeed.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER