Topic: Vietnam Vets with Cholangiocarcinoma

My husband was a Vietnam veteran (1966-1967) stationed near Pleiku who was diagnosed with cholangiocarcinoma and died.  I filed a claim with the V.A. on the premise that his cancer was caused by Agent Orange but it was denied even after several appeals.  Recently I came across a message board (re: Vietnam vets who have been diagnosed) that indicated that because our veterans served in Vietnam, they may have ingested a parasite called a liver fluke (very common in Vietnam) which is a risk factor for this cancer.  I will be reopening my claim.

Please respond to this message if you are aware of anyone in your family who served in Vietnam and was diagnosed with this awful disease.  If you can provide the years he/she served and also if you know approximately where the person was stationed, that would be helpful. 

Thank you.

Re: Vietnam Vets with Cholangiocarcinoma

My husband was a Korean War Vet and I understand there was a fish in Asian countries that may have caused CC. I am also wondering if there are other Korean War Vets who have contracted CC. I cannot remember the name of the fish but there were a lot of questions about the fact it carried a parasite.

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: Vietnam Vets with Cholangiocarcinoma

My husband Butch is a Vietnam War veteran - 1963-64. He had colitus while he was there, and has had schlerosing cholingity for several years now, which also is a risK factor for bile duct cancer. He was stationed near Saigon and also Vinh Long.

Joyce

Re: Vietnam Vets with Cholangiocarcinoma

My husband served in Vietnam 1966-67.  He was diagnosed with cholangiocarcinoma in June.  In 2006, he had surgery to resection his bile duct, and recovered, so we thought we had Beat It!  Then came all the symptoms, and then the diagnosis.

There have been several VA rulings showing the connection between liver flukes and CC.  I'm just wondering how many Vietnam vets are "ticking bombs"?

If you're a vet, or know one, please let me know.  We are re-opening our case, and hoping that another favorable ruling may help others. 

Thanks and God Bless!

Re: Vietnam Vets with Cholangiocarcinoma

My husband Jim was also a Viet Nam Vet from 1966-1967. He passed away Sept. 2, 2008 at the young age of 62, after only 7 weeks. Previously he was healthy. My understanding is that these parasites are in the waters in the Asian countries. If you swam in the water, drank it or ate anything that the water was used to wash the food you may have gotten these parasites in your system.  They chew on the inside of the bile ducts & create abnormal cells that years later (up to 30-40) present as Cholangiocarcinoma. Usually by the time it is diagnosised it is already too advanced to treat & it becomes very aggressive.  Apparently it is a very slow growing cancer, but because it goes undiagnosised for so long, with no symptoms, by the time it is, it is already too late to treat it successfully. Usually the VA denies service related claims of this type, however, I have heard of a few that have now been approved. I too am going to the VA to fight this. They claim that their is not enough evidence at this time, however, I too think that there are a lot of Vets out there that will be in the same situation as all of us & then they will not be able to deny this any longer. I actually think there is enough evidence now, but they do not want to admit it. If our country had made us aware of this possibility years ago, & the Vets were checked yearly for this possibility, maybe many of them could have been helped & their lives prolonged.  We need to make all Viet Nam Vets aware of this & we also need to make our claims & do what we can to help ourselves & others who will be confronting this terrible disease in the future. The more favorable service related rulings we get the better. The government will then have to take notice & do the right thing for our Vets.

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Vietnam Vets with Cholangiocarcinoma

How about Korea as well?

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: Vietnam Vets with Cholangiocarcinoma

Hi Lainy,

I have read there is also a connection to Korea. I think that the Vets from the Korean War should also be included in this. These liver fluke parasites are found in all Asian waters which would include Korea.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Vietnam Vets with Cholangiocarcinoma

Thank you, I know Teddy spent a good amount of time in "rice paddies"! It was the early 50's. Please keep me posted on this. Even though a large amount of women/men who were not in Asia are getting CC it does not mean the people that served over there did not contact a parasite! I guess when Teddy "jumped" in to Korea the army didn't know he meant parachute and not parasite!!!

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: Vietnam Vets with Cholangiocarcinoma

I think it's critical to make the connection with Vietnam & Korea vets and cc.  Then they can be screened for this deadly disease, and hopefully catch it before it's too late.

Re: Vietnam Vets with Cholangiocarcinoma

We got the information to our local veteran's office two weeks ago, when Butch was still able to sign the papers. I received word on Saturday that they had received it and were reviewing it. They said there is a big backlog, and they would write if they need more information. I think they should be making public service announcements on TV to tell these vets to get there bile ducts checked - it is shameful that they haven't.

11 (edited by Kristin Mon, 13 Oct 2008 05:39:26)

Re: Vietnam Vets with Cholangiocarcinoma

I'm not a veteran, but I lived in South Korea 1987-90, and in the Persian Gulf 1990-96. I traveled in Vietnam for a total of five weeks, also in Cambodia and Laos, and ate all kinds of strange stuff everywhere. Was diagnosed with CC in Feb. 2004.

In August, when I went to the Mayo Clinic and had an appointment with Dr. Steve Alberts, a world authority on CC, I asked him if my cancer could have been caused by liver flukes. He told me that if a person actually has liver parasites, they will experience all kinds of serious liver symptoms and problems for years before they develop CC-- the tumors would not be the first thing that happens.

For what it's worth...

Kristin

Peace, hope, and healing to all!

Re: Vietnam Vets with Cholangiocarcinoma

My dad was in Korea...diagnosed with CC this past January, died in July.  I am concerned about my brother who was stationed (Navy) Korea and Philipines, and traveled throughout Laos, Cambodia and Nam.   This was as recent as the first Gulf war...anyone think there should be concern or should things have cleared up since dad's time?   Dad would never have known about liver flukes.  I didn't know until it was too late.
Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Vietnam Vets with Cholangiocarcinoma

I posted this last week in reference to the doctor who said liver flukes is not a cause. I was just surfing and found this site:
PJB is the Principal Investigator of the National Institute of Allergy and Infectious Diseases grant number 1UO1 AI065871, which deals with liver fluke

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: Vietnam Vets with Cholangiocarcinoma

I am so happy to see others seeing what I have believed since my husband developed CC in March of 2007. He died January 18, 2008. When he became sick I googled the disease and found many articles about how CC developes and found information about these parasites. I put in a claim with VA and they said I didn't have enough evidence to procede. I haven't given up though and would love to be apart of making people aware of this. Gerry was in Vietnam in 1968 and 1969. He was near Saigon, ate fish and also remembered being sprayed with agent orange. CC is epidemic in Vietnam right now according to an article I read. I'll try to find the article again and post its location later. Cathy

Re: Vietnam Vets with Cholangiocarcinoma

Hello!

I found this paper submitted at the First International Symposium on Geospatial Health held in PR China in September, 2007, and find it to be DEFINITIVE.

This is the opening line: "There is no stronger link between a human malignancy and a parasitic infection than the link between cholangiocarcinoma (CCA) - hepatic cancer of the bile duct epithelia  - and the infection with the liver fluke, Opisthorchis viverrini.

That pretty much says it all as far as I'm concerned.  Some of the sponsors of this symposium were the World Health Organization, UNICEF,  University of Copenhagen....not a bunch of nobodies!!!

So, take it for what it's worth.

Re: Vietnam Vets with Cholangiocarcinoma

I was in Japan 1968-1969, ages 6 mos. to 4 years old.   We lived off base.  Any chance I could have come in contact with fluke worms?   How do I get tested for liver flukes?   I don't have any jaundice or tumors in my bile ducts, but have been diagnosed with CC.   I'm frustrated that it seems to have come from nowhere.  I would like to be able to find the cause of this thing.

- Suzanne

Re: Vietnam Vets with Cholangiocarcinoma

From what I understand, there is a test of some sort....requires a stool sample.  Japan doesn't seem to be showing up too much in the stuff I've read, mostly Vietnam, Thailand, China, Laos...but will keep my eye out because I'm continuing to research this for my husband's VA claim.

Re: Vietnam Vets with Cholangiocarcinoma

I have also heard mention of something called brush cytology for determining a carcinoma or benign stricture in the bile ducts. Not sure exactly what that is or how it works, but if it is something that is available, why isn't it being done more & why haven't any of us heard more about this? I am going to check into this more in reference to my claim with the VA. Possibly if Vets were warned of the possiblity of this cancer & were checked periodically by this means more would survive this terrible cancer, or atleast have had a better chance to fight it!

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Vietnam Vets with Cholangiocarcinoma

By entering the word: "cytology" under the Search Forum (you don't need an author's name) a conversation will show up from Dec. 07.  The entire thread is interesting to read and may just give some answers to some of the questions we have.

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

Re: Vietnam Vets with Cholangiocarcinoma

Hi Marions,

That was interesting. I have done some checking on the brush cytology & it seems they go into the bile ducts with a tiny brush & brush out some of the cells. It doesn't sound real definitive, however, it mentioned that after 3 negative tests there is a good chance the cancer does not exisit. What is so interesting & also confusing about all of this is that CC seems to effect everyone differently & what works for one may not work for another. Very frustrating!

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Vietnam Vets with Cholangiocarcinoma

I agree with you, Darla it is puzzling and not well understood.  My guess is that science will be focusing more on genetics and geonomics in order to find the key to many of our current diseases.

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

Re: Vietnam Vets with Cholangiocarcinoma

If you go to www.cancercompass.com and to their message board you will find a discussion about cholangiocarcinoma and Vietnam Veterans. Some way we need to find a way to band together to at the very least warn other vets who may still be diagnosed.

Re: Vietnam Vets with Cholangiocarcinoma

I agree. We do need to somehow form a group and warn upcoming veterans, who are as yet undiagnosed, and who could possibly be saved. In addition, we could potentially help each other with our VA claims, etc. Count me in.

Joyce C.

Re: Vietnam Vets with Cholangiocarcinoma

I have been in contact with someone who's husband's claim for service connection was approved by the VA. She has sent me some information that I can use when I go in to file my claim. I will let you know if I get anywhere with this. With all the Vets that are now being diagnoised & dying from this type of cancer I don't see how they can keep denying these claims. We have to do this for ourselves, our loved ones & for those who find themselves in this same situation in the future.

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Vietnam Vets with Cholangiocarcinoma

If you go to  http://www.vva.org/veteran/0807/letters.html - you will find a letter posted by Mrs. Edward S. (Pete) Harrison about the Vietnam conflict and parasites and CC. It is VERY interesting - had we found it in prior years, we might have found Butch's life. However, a person wouldn't look there until they KNEW about the problem, and then it is too late. Anyway, take a look - it spells it out for us.


Joyce C.