CancerCompass message board discussion started by MarineDoc on 1/30/2008 http://www.cancercompass.com/message-board/message/all,20471,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Greeting all:I received an email from a Vietnam Vet that reports that a post to the Vietnam Veterans of America has a post regarding a VN Vet who was recently diagnoised with Cholangiocarcinoma from a parasitic infection he contracted while in Vietnam Link to site:  http://www.vva.org/veteran/0807/letters.html Has anyone else heard of cases being diagnosed in Vietnam Vets caused by a parasite infection? Thanks, and I wish all well.Doc  MarineDoc Wed, 30 Jan 2008 00:00:00 GMT I think that that VA knows there is a connection.  I think that Australian goverment has it listed as a service connected illness for Vietnam Vets - and possibley those serving in other places like Korea.  My dad served in Korea during Vietnam and died from this terrible cancer in November 2007.  We are appealing to the VA that this was very possibly service related due to the parasite.  We'll see how far we get.  After my dad passed, we had to refile all of the appeals we had made and they had tried to escalate while he was alive. Gbcdad Mon, 04 Feb 2008 00:00:00 GMT  On 1/30/2008 MarineDoc wrote:Greeting all:I received an email from a Vietnam Vet that reports that a post to the Vietnam Veterans of America has a post regarding a VN Vet who was recently diagnoised with Cholangiocarcinoma from a parasitic infection he contracted while in Vietnam Link to site:  http://www.vva.org/veteran/0807/letters.html Has anyone else heard of cases being diagnosed in Vietnam Vets caused by a parasite infection? Thanks, and I wish all well.Doc My husband passed away on 1/20/06 from Cholangiocarcinoma.  The VA has approved my claim and has ruled that his death was service connected as a result of injesting a parasite while serving in Vietnam.Get The Word Out GetTheWordOut Tue, 05 Feb 2008 00:00:00 GMT My husband just passed away 1-4-08 from a cancer that had spread to his liver but he had a couple of biopsies and they said it could possibily have come from the the bile duct or could have been a cholangiocarcinoma but they could not distinguish it.  So they called it a adenocarcinoma.  I would like to know how I can try to get something done abut it!  How can I do what you are doing?  Thanks pam34 Tue, 12 Feb 2008 00:00:00 GMT I received an article that was posted in VVA about parasites and Cholangiocarcinoma in Vietnam Veterans.  My husband also passed away from this horrific cancer.  I'm trying to gather as much info on this as I can find.  The parasites can gnaw on the lining of the bile ducts and stay for decades causing a "silent infection".  Would like to know more on what you found.  Thanks, jajo4751 jajo4751 Mon, 18 Feb 2008 00:00:00 GMT  On 2/18/2008 jajo4751 wrote:I received an article that was posted in VVA about parasites and Cholangiocarcinoma in Vietnam Veterans.  My husband also passed away from this horrific cancer.  I'm trying to gather as much info on this as I can find.  The parasites can gnaw on the lining of the bile ducts and stay for decades causing a "silent infection".  Would like to know more on what you found.  Thanks, jajo4751I have been trying to get his records from the VA hospital and they have not been very helpful about it.  I think they all know something but are not telling!!  I would just like for them to say that is what he had.  He loved his country so muchand did everything he could to help people.  He just found out he had cancer in May of last year.  He tried Chemo but the tumors just keep growing.  So, in Oct. of 2007 he stopped taking them and he felt better for a while.  He continued to work until Oct. 31, 2007.  Then in that last part of Nov. we started with hospice, but he was still doing pretty well.  He then had to start having fluid drained from his stomach twice a week.  Th last time he had the fluid drained was Dec. 31st and the next moring he was starting to get very bad and on jan. 4th about 3: 00am he passeed away at home with us.  I would like to know when and where your husband was in Vietman.  I'am so mad and terribly sad right now.  I hope we can do something about this and so other vets will know about it also.  I hope you will respond to this. pam34 Mon, 18 Feb 2008 00:00:00 GMT  On 2/18/2008 pam34 wrote: On 2/18/2008 jajo4751 wrote:I received an article that was posted in VVA about parasites and Cholangiocarcinoma in Vietnam Veterans.  My husband also passed away from this horrific cancer.  I'm trying to gather as much info on this as I can find.  The parasites can gnaw on the lining of the bile ducts and stay for decades causing a "silent infection".  Would like to know more on what you found.  Thanks, jajo4751I have been trying to get his records from the VA hospital and they have not been very helpful about it.  I think they all know something but are not telling!!  I would just like for them to say that is what he had.  He loved his country so muchand did everything he could to help people.  He just found out he had cancer in May of last year.  He tried Chemo but the tumors just keep growing.  So, in Oct. of 2007 he stopped taking them and he felt better for a while.  He continued to work until Oct. 31, 2007.  Then in that last part of Nov. we started with hospice, but he was still doing pretty well.  He then had to start having fluid drained from his stomach twice a week.  Th last time he had the fluid drained was Dec. 31st and the next moring he was starting to get very bad and on jan. 4th about 3: 00am he passeed away at home with us.  I would like to know when and where your husband was in Vietman.  I'am so mad and terribly sad right now.  I hope we can do something about this and so other vets will know about it also.  I hope you will respond to this.  You applied for your husband's records and didn't get them?  What excuse sis they give you?  I did get my husband's.  He was in VN 69-70 stationed near Pleiku but moved around.  He was diagnosed mid Dec.and passed away early March.  He would have the fluid drained and start filling up again. jajo4751 Mon, 18 Feb 2008 00:00:00 GMT My husband passed away from this cancer 2/1/01 at the age of 51.He served active duty in vietnam from 1967-1968 living on a riverboat.  He was diagnosed aug 01 and was given 2 weeks to 6 months to live. At the time we were raising our granddtr and I tried to receive va benefits for herand was told the va did not look at this as service related  "but to check back later"   It seems there are more cases turning up. teddyswife Tue, 19 Feb 2008 00:00:00 GMT I don't think it's a coincidence that a rare cancer is turning up in VNV.  I want to get a list of names together to see how many VNV's  have been diagnosed with Cholangiocarcinoma. jajo4751 Wed, 20 Feb 2008 00:00:00 GMT  On 2/20/2008 jajo4751 wrote:I don't think it's a coincidence that a rare cancer is turning up in VNV.  I want to get a list of names together to see how many VNV's  have been diagnosed with Cholangiocarcinoma.I'am still waiting to get reports from the VA.  They never diagnosed my husband with Cholangiocarcinoma because they said it was unclear where it started, but I feel like they did know because they sent his biopsy to Washington and we didn't hear back from a month or longer.  I would like to know who did your tests.  My husband was in Vietnam 70-71 stationed at Buen Me Thuet I lokked and it's not far from where you husband was.  I feel so bad that these VNV did there duty and the goverment won't help out when they should be!!  Vietnam was and still is being forgotten!!!  We need to fight for them! pam34 Wed, 20 Feb 2008 00:00:00 GMT Hello... My father died of Cholangiocarcinoma on Nov. 6 2003. He served in Vietnam. His oncologist told him he had seen many patients with this same type of cancer( my father was treated at an Army Hospital in San Antonio Texas). The Dr. felt there was a connection being that this type of cancer is very rare in this area of the world. He felt he had seen too many cases of it.. and they were all Veterans of Vietnam. My mother filed for benefits and was denied. But with this new information we are trying again. Thanks for getting the word out!!!! Bethers0314 Thu, 20 Mar 2008 00:00:00 GMT  On 2/12/2008 pam34 wrote:My husband just passed away 1-4-08 from a cancer that had spread to his liver but he had a couple of biopsies and they said it could possibily have come from the the bile duct or could have been a cholangiocarcinoma but they could not distinguish it.  So they called it a adenocarcinoma.  I would like to know how I can try to get something done abut it!  How can I do what you are doing?  ThanksDid your husband serve in Vietnam??? nannapat Fri, 11 Apr 2008 00:00:00 GMT The VA doesn't want you to know that this is out there I am sure that when we gave the symptoms to the doctor for my husband they knew just what it was we found out for sure on July 31st our daughters birthday that it was bile duct cancer and he died Aug 19th in the Indianapolis VA hospital he faired thru the operation very well but he died due to his chest filled up with 4 ltrs of blood. I would be glad to place his name on any list and would love to get this out to others who served our country in Vietnam so that they will be adware of it. Don's cancer was a T1 stage Pat nannapat Fri, 11 Apr 2008 00:00:00 GMT Hello everyone,I am a 61 year old male and served in vietnam in 1966-67. In April of last year the doctors found dialated bile ducts in the right and left side of my liver. Further test, MRI and ERCP revealed Stones in the liver. They removed Stones on three occassions, but the bile duct dialation and strictures continued. My white blood count has been high and the Akaline Phosphate levels have been high continually since that time. I suffer from pain in the Right front near the ribs, and radiates to the back right side. They have taken biopsy on two occassions. (I am waiting for the results of the last biopsy which was take from inside the bile duct at a stricture that the doctor called an ulcer with pus. He tried several time to open the stricture and put in a stent, but was able to get it in. The biopsy from the liver itself has shown Heavy Acute, Chronic cholangitis. The MRI's and doctors all think it is probably cholangiocarcinoma but have been unable to dignose it. So far I have been given on help. I have steadly gotten weaker every day and feel like I am dying a little each day. The weakness and fatigue is very intense, and the pain has increased.  I am totally convinced from all the research I've done that is is from a parasite from Vietnam. All I read says they live in you up to 40 years and around 60 the  damage has been done and the symptoms start. Does anyone know a Doctor who has treated this? My doctors are from a Liver Center in Houston, Texas, but they say this is the most difficult case they have ever seen. I don't think they have ever seen anyone with cholangiocarcinoma caused by Liver Flukes.ThanksDon Graphix Mon, 05 May 2008 00:00:00 GMT  On 2/5/2008 GetTheWordOut wrote: On 1/30/2008 MarineDoc wrote:Greeting all:I received an email from a Vietnam Vet that reports that a post to the Vietnam Veterans of America has a post regarding a VN Vet who was recently diagnoised with Cholangiocarcinoma from a parasitic infection he contracted while in Vietnam Link to site:  http://www.vva.org/veteran/0807/letters.html Has anyone else heard of cases being diagnosed in Vietnam Vets caused by a parasite infection? Thanks, and I wish all well.Doc My husband passed away on 1/20/06 from Cholangiocarcinoma.  The VA has approved my claim and has ruled that his death was service connected as a result of injesting a parasite while serving in Vietnam.Get The Word Out  Dotwoo Mon, 23 Jun 2008 00:00:00 GMT  On 2/5/2008 GetTheWordOut wrote: On 1/30/2008 MarineDoc wrote:Greeting all:I received an email from a Vietnam Vet that reports that a post to the Vietnam Veterans of America has a post regarding a VN Vet who was recently diagnoised with Cholangiocarcinoma from a parasitic infection he contracted while in Vietnam Link to site:  http://www.vva.org/veteran/0807/letters.html Has anyone else heard of cases being diagnosed in Vietnam Vets caused by a parasite infection? Thanks, and I wish all well.Doc My husband passed away on 1/20/06 from Cholangiocarcinoma.  The VA has approved my claim and has ruled that his death was service connected as a result of injesting a parasite while serving in Vietnam.Get The Word Out  Dotwoo Mon, 23 Jun 2008 00:00:00 GMT  On 2/5/2008 GetTheWordOut wrote: On 1/30/2008 MarineDoc wrote:Greeting all:I received an email from a Vietnam Vet that reports that a post to the Vietnam Veterans of America has a post regarding a VN Vet who was recently diagnoised with Cholangiocarcinoma from a parasitic infection he contracted while in Vietnam Link to site:  http://www.vva.org/veteran/0807/letters.html Has anyone else heard of cases being diagnosed in Vietnam Vets caused by a parasite infection? Thanks, and I wish all well.Doc My husband passed away on 1/20/06 from Cholangiocarcinoma.  The VA has approved my claim and has ruled that his death was service connected as a result of injesting a parasite while serving in Vietnam.Get The Word Out  Dotwoo Mon, 23 Jun 2008 00:00:00 GMT  On 2/5/2008 GetTheWordOut wrote: On 1/30/2008 MarineDoc wrote:Greeting all:I received an email from a Vietnam Vet that reports that a post to the Vietnam Veterans of America has a post regarding a VN Vet who was recently diagnoised with Cholangiocarcinoma from a parasitic infection he contracted while in Vietnam Link to site:  http://www.vva.org/veteran/0807/letters.html Has anyone else heard of cases being diagnosed in Vietnam Vets caused by a parasite infection? Thanks, and I wish all well.Doc My husband passed away on 1/20/06 from Cholangiocarcinoma.  The VA has approved my claim and has ruled that his death was service connected as a result of injesting a parasite while serving in Vietnam.Get The Word OutTo the person who responded to Doc:My husband was a Vietnam Veteran (1966-1967) and died of cholangiocarcinoma in June of 1994, eleven weeks after the diagnosis.  Prior to this, he was rarely sick.  I have been through the appeals process with the V.A. and was denied each time.  I went the route of Agent Orange since dioxin is a risk factor in this cancer.  Since you were successful in receiving approval from the liver fluke factor, can you share with me if you had any substantive proof that your husband's cancer was caused by the liver flukes, other than just a diagnosis.  I did searches on the V.A. site and it seems from the ones I read re: this disease are typically rejected byt the V.A..  If you can help me in this regard, it, I would appreciate it so I know if it is feasible to have my case reopened.Thank you so much.  I mourn your loss as I continue to mourn mine, even after 14 years.  My husband was 49.Dorothy Dotwoo Mon, 23 Jun 2008 00:00:00 GMT Hello, My name is Pam Marz.  My husband just died on July 15th, 2008 of Cholangiocarcinoma.  He would pay Vietnamise kids to go catch him a fish and cook it for him....or a piece of chicken and cook it for him.  He got tired of his mess food and would pay to get anything other than that to eat.  He also did 20 years in the Navy and would do walk-abouts and eat anything he could find in the country.  It came on sudden...we spend the winter in Arizona and by the end of April he was iching like crazy and then the eyes went yellow within a week.  He never had Hepititis or anything like that. He went to the VA and had an MRI done and they diagnosed Cholangiocarcinoma.  We then went to the Univerisity of Minnesota Masonic Cancer Center.  They went in and did a liver desection.  2/3 of the liver was removed.  He never opened his eyes for 15 days....then he went into septic shock and he got better...but not much better....We never had "the talk" and that was it.  One month atfer the operation he died.  He was only 61.  I am 54.  I never thought I would be a widow at 54.  I have read all your letters and wonder how you all feel about this.  What should I do?  Is there something I should be doing?  Please help me!  I would love to hear from you all. Thanks, Pammie Pinky54 Fri, 08 Aug 2008 00:00:00 GMT Hello, This is classic of what I am now dealing with. All of the above applies. My husband who has been my partner in life for over 41 years was normal & healthy 6 weeks ago. He died Yesterday 9-2-08 of this terrible disease. He was 62. It seems the government is dening most claims in these cases, so I am not sure where to go from here. I am so angry & feel so helpless. It is so frustrating to find out that our government knows about this, denies it & does not want to do anything to help out. I will happily add my name to any list involving this. We need to do this in memory of our loved ones & to hopefully help the many others that I am sure this will be affecting in the coming years. Any help or suggestions out there will be greatly appreciated. Darla in Wisconsin  deejaykay Wed, 03 Sep 2008 00:00:00 GMT