August 26, 2007 at 3:25 am #15791joniMember
My husband Mike (age 57) died on April 27 after a very hard fought and valiant 16 month battle with cholangiocarcinoma. He was a cryptanalyst in Viet Nam in 1968-69, and was stationed in Phu Bai, which was one of the most heavily sprayed areas (Agent Orange) in Viet Nam. I am working with the VA for DIC benefits. The VA admits to eleven diseases caused by Agent Orange. Cholangiocarcinoma is not one of them. However, please check the list (VA website) because your loved one may have one of the 11 diseases as an underlying cause of disease or death, which will help your case.
Regarding Agent Orange, Viet Nam and disease…your loved one MUST have had feet on the ground IN Viet Nam for consideration.
If I can be of assistance to anyone, I will.
JoniAugust 20, 2007 at 6:42 pm #15790
I know we have had so many questions and the Dr.s don’t know answers. Today we told our Dr. about the parasites and he seems interested in learning more so I plan to take what I can find on the subject to him. From what I understand the parasites are long gone but causes changes within the bile ducts creating cysts that further develop into tumors and cholangiocarcinoma. My husband Gerry was diagnosed late in March and we are just beginning to learn about what is available and used to treat. Gerry had a resection of 1/2 his liver in early April at the University of Tx in San Antonio and then after about 5 weeks went thru a radiation/chemo combo done at the same time for about 5 weeks. He’s been in the hospital twice since then with infections and bowel obstructions. He just had his first CT scan and we are awaiting results. I know there are studies and some people can qualify for trials but what they are and who qualifies, I don’t know. Up to this point we haven’t considered it. We too have gone to our congressman (TX). Plan to go back with this new info about the parasites and hope for results.
Wish I could help more. cjfrancisAugust 20, 2007 at 3:35 pm #15789dadhasgbcParticipant
Thanks for the info. I hope that the VA approves your claim. We’ve just started the journey of getting into the VA and are using the local Congressman to help move things along a little faster than they seem to otherwise.
I have so many questions.
Are these parasites still alive decades later?
I’m wondering because it seems there are 2 drugs that are used to treat the presence of these. Just curious if you are aware of any studies in the US (or elsewhere) on using these drugs in combination with the standard treatments to treat this cancer.August 20, 2007 at 12:51 pm #15788
The parasites have been found in Korea as well as Vietnam. I have been researching Vietnam specifically so I don’t know alot about Korea. I believe it is highly likely by the definition in the website sited above that the parasites could be the culprit in your Dad’s case as well. Good luck with the VA! I wonder how many vets are suffering with this and don’t know where they got it? Thanks for letting us know about your Dad. We’ll be thinking of him and your family at this time. cjfrancisAugust 20, 2007 at 4:25 am #15787dadhasgbcParticipant
My dad was drafted and served the army during Vietnam but he was stationed in Korea. He was diagnosed at age 61 in Dec. 2006 with gall bladder cancer that was in his bile ducts and duodenum as well. He is currently in a VA hospital with a bile duct obstruction. We are appealing to get covered by VA – he doesn’t meet the current qualifications that we put in place in 2003. I am interested in reading more on this and understanding if indeed his could be from the parasite as well.August 18, 2007 at 2:22 pm #15786frentzMember
Here is the link to the VVA site where the original letter is posted.
Look about midway down the page.August 18, 2007 at 1:10 pm #15785
Thank you for this post. It’s good to hear that the VA has previously recognized cholangiocarcinoma as service related. We are still waiting for the VA to determine my case as service related. Yes, we have found internet postings about Vietnam and the high amount of cholangiocarcinoma cases where I was when in Vietnam. I have had alot of acid reflux for years which became barretts esophogus. Had I known of the parasites I would have had my bile ducts checked long ago and perhaps not have cholangiocarcinoma now. Please pass this info to all Vietnam vets with gastro problems. GerryAugust 18, 2007 at 3:02 am #15784frentzMember
I was researching cholangiocarcinoma as a friend I was in Vietnam with has been recently diagnosed with the disease. I also received an email (indirectly) that is included below
The VVA Veteran
Vol 27, No 4
July /August 2007
I am writing to inform all Vietnam veterans about a potential health risk that they may have been exposed to while serving in Vietnam: the little-know danger from Parasites.
My husband, who was otherwise healthy, passed away on January 20, 2006, from cholangiocarcinoma, cancer of the bile duct of the liver. It is very rare in the United States, but very prevalent in Vietnam and surrounding countries. There are two know causes of this type of cancer: from contracting hepatic C and from ingesting a parasite from the water supply in Vietnam. My husband did not have hepatitis C: there fore, it was determined that his cancer derived from a parasite. I have received official notification from the VA that his death was service related, which is not something the VA determines without an overwhelming amount of evidence.
This cancer does not manifest itself until later in life, when you are between 60 and 70 years old. Once the symptoms occur, which usually include jaundice, it is very difficult to treat or beat. My husband was 58 years old when he passed away. If he had been informed that there was a possibility that he could have ingested a parasite while serving in Vietnam, he would have taken precautions to have his bile ducts examined, possibly extending his life. The parasite is long gone, but it developed into cancerous tumors in the bile ducts.
If you spent time in Southeast Asia and are having gastrointestinal issues for no apparent reason, please have you physician check for damage within the bile ducts. It may save your life.
Mrs. Edward S (Pete) H******** (edited as I do not have permission to use her name)
Horseheads, New York.
Does anyone know if there is any truth to this??? Thanks for this website I will let my friend know about it.
FloydMay 13, 2007 at 1:26 pm #15783
Thank you for the information. We’ll check into the website after our current crisis is past because Gerry is in the hospital as we speak. They think he has a small bowel obstruction and peritinitus (don’t know how to spell it) He was in emergency with severe pain, fever all day yesterday. They admitted him last night and ran tests into the night. We should more later this morning. I have to get back to the hospital. Your prayers are appreciated.May 12, 2007 at 8:42 pm #15782jeffgMember
This site appears to show all the information about Agent Orange and Defoiliants used in Vietnam.
P.S. I was in the service during Vietnam era but was not in Vietnam/Exposure. The above site has many links, maps, and reports. I believe the latest report can be obtained from the National Scientific Research Administration, as this problem changed Offices of administration and oversight many times as the situation grew in magnitude.May 12, 2007 at 1:31 pm #15781maggieParticipant
I think that you raised an interesting point. Dioxin receptors (dioxin/aryl hydrocarbon receptor AhR) are expressed throughout the liver. I wish your husband all the best.May 11, 2007 at 7:30 pm #15780
Thank you for your responses. My husband has put in a claim with the VA for his CC with a VA representative who has been helping him. My husband has Asthma related to Vietnam for which he receives 10% disability. He also has a claim pending for his Barrett’s Esophogus which is a precancerous condition. We didn’t know esophageal cancer is considered by VA as an agent orange cancer. Let us know what you find out please. We’ll post something when we hear anything related to CC. Thanks again. We’d sure like to hear from any Veterans dealing with CC. CathyMay 11, 2007 at 2:51 am #15779micheleParticipant
My husband was flying helicopters in Vietnam and has cc now -diagnosed 3 mos ago. He is 61. I am in the process of talking to VA as well, it takes a long time and big numbers to actually have a cancer listed as Agent Orange. My firend lost her husband 8 years ago to esopahgeal and it was not an agent orange cancer then -it is now. I think all of us with vietnam vets with CC should be talking to the VA -the cancer is so rare, the numbers so small, we need to do something to promote research and development for this cancer.May 11, 2007 at 1:58 am #15778jmoneypennyMember
A friend of mine lost her father last Father’s Day – he was 55 and he had adenocarcinoma of unknown primary but the liver area was definitely pinpointed and I now believe he may have had cc. He was a Vietnam vet and had been treated for skin conditions related to Agent Orange years ago. I think there’s definitely a correlation, but don’t want to push her about investigating it. I think you’re really on to something here, and the VA should acknowledge those who have this kind of cancer. Let us know if you find out anything.
– JoyceMay 10, 2007 at 10:02 pm #15777jeffgMember
CjFrancis, Agent Orange, also Agent Purple, pink, and green was used during Vietnam. Many claims have been filed and accepted by the Veteran’s Administration for several types of cancers. The best advice I can give you is call VA toll free at 1-888-878-6881. Also, go to wikipedia and search Agent Orange as it has infor on what types of cancers have been associated, may suggest associated with, still under investiagational research. You can also call any local (DAV) Disabled American Veterans offices will let you know and assist and advocate your claim with VA free of charge. Hope this is of some help.
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