Re: Vietnam Vets with Cholangiocarcinoma

Joyce,

Thanks for posting that information. That is the lady who contacted me. Hopefully her information will be helpful to you & me and also others in this situation.  I also feel that had we had more knowledge prior to this happening to us, Jim too may have had more of a fighting chance against this disease. Hopefully the information will be helpful to others who are or will be dealing with this in the future. There is information out there, it is just unfortunate that until you know what you are dealing with you don't know what to look for & once you do it is usually too late. Maybe together through all of our efforts we can make a difference.

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 have found the "connection" between Vietnam and CC to be very interesting. But, here is another facet to this discussion...

I was diagnosed with intra-hepatic CC in 12/06 and had a resection in January of 2007. So far, everything looks good.  I am now 51 (but only by a few days!), was 49 when diagnosed. 

I was never in the military, was never in Vietnam, BUT...my father was career Army, and I DID spend a year on Okinawa when I was 13. (And he DID spend time in Vietnam, and Korea, which has no bearing, except that I am very proud of who he was and what he did for this country.)

I will never know if this was the "reason" for contracting this disease, but it is an interesting side-note to the Vietnam discussion. 

I certainly hope that they DO prove a connection and make it possible for those who served in the Armed Forces to receive some kind of compensation for this cancer. They were fighting for our freedom and deserve everything we can do for them.

Thanks to all who serve!  (This includes my father, my uncle, my husband, my daughter and my son)

Sue

Today is a new day. Congratulations, you are already a survivor!

Re: Vietnam Vets with Cholangiocarcinoma

I am so glad to have found this site.  My husband, Mario, was diagnosed with ulcers in November of 2009 and also had gallbladder issues.  He was starting to look yellow to me, had some pain in his right side in January, 2010. I  took him to VA emergency room and was told that although his bilirubin was high, it wasn't that high and that they couldn't tell if he looked yellow or not because of the lighting and they did not know what his original complexion was.  The next week his urine started turning dark.  Called the VA emergency and was told it was probably something he ate!  Called our regular gastroenterologist and he told us to see him.  He took blood tests and had a CAT scan which showed a mass, an MRI, which didn't show anythng, then a PET scan which showed cancer.  Because of the PET scan and bloodwork, a liver biopsy was done and they found it was cholangiocarcinoma.  My husband had served in Vietnam in 1969-1970.  I truly believe, he contacted it there.  Both his dad and mom lived until their 90's and his brother's are in their 70's.  My husband was diagnosed the end of February, had his first Chemo on March 1st, and passed away on March 13th.  I, too, will do anything to make other Vets aware of this, so count me in on any help that is needed.  I have put a claim in with the v.a. and am gathering information.  I have also emailed Sheila Harrison, who is sending me information regarding her claim which has been approved.  As you all probably know if you google Vietnam and cholangiocarcinoma, her name will come up, because she is also trying to fight the battle to get this recognized, so other vets can  be aware.  Wishing all of you good luck who are fighting this disease.  I believe in miracles and am wishing them for all of you.  I can be contacted through facebook under Anne Rossi Petitti. I will share any information that I get concerning associating this as being service connected and letting our Vets know to be aware of it.  Hopefully, the more noise we make, the faster the government will respond.  I want something positive to come out of my husband's death and the only think I can think of to do right now is make others aware.   Thanks in advance for reading this rambling message, but it helps me to get my husband's story out.  He was a great husband and father.  He was only 61 and looking forward to retire on his birthday this year.

Re: Vietnam Vets with Cholangiocarcinoma

Dear Anne,

Sending you my sincere condolences on the loss of your husband.

I lost my Dad 7 weeks after he was diagnosed last May. Prior to some elevated liver function tests he had no symptoms whatsoever. This cancer is silent, progressing until when it is detected it has taken a hold.

Wishing you strength as you move forward.

Katie

Re: Vietnam Vets with Cholangiocarcinoma

Hello Freeze08 and welcome to our wonderful family. We met on our FAN page on F.B. and so glad you joined us. My husband survived Korea and always felt he would not ask he V.A. for anything because of the guilt he had in surviving.
I think I finally got through to him and hopefully we can make that trip this week. I don't think it matters what one may have coming,  but that something is done to help other VETs. Please keep us posted on any updates.

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 Anne,

Glad to see you joined our "family".  You will be glad you did.  I, like you feel that anything we can do to get the government to recognize that there is a connection is worth working for.  Even if I don't benefit from this, maybe it will help those that are affected in the future.  Jim retired at 62,  exactly 2 months to the day before he passed away.   Take care Anne. 

Love & Hugs,
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

Fortunately there is some research on cholangiocarcinoma.  Mayo Clinic in Rochester took about five tubes of my blood for study now and study in the future.  The consent form included giving my blood to other institutions for study. There was an accompanying questionnaire.

My parents are 93 and 94 - living.  No cancer in my family.  I've always been a very healthy female (no military service). Now at 60 inoperable cc stage 4.

If some CC is associated with military service in Asia I do hope they find that out quickly so these men and women can be screened for early detection.  I understand peoples anger, but I don't think it's a cover up by the military if Mayo or other large research facilities cannot pin point CC to service overseas.  Its my own personal opinion that our military personnel should have coverage for everything; but I hope fighting is done for research, not compensation.

Re: Vietnam Vets with Cholangiocarcinoma

Dear Anne - welcome!! - I saw your post on FB & am so glad you joined us.

Thank you, too, Kathy for adding more to the knowledge & information we're all striving for.  I know so little of any of this (though I feel the past 6 months have been a literal "crash course" for me) & the vast wealth of experience we're all pooling here is so, so wonderful.

Julia

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Vietnam Vets with Cholangiocarcinoma

Has anyone had success with their application or appeal to the VA?  We just received our initial denial, but are continuing the fight!  Any helpful tips would be appreciated.

Re: Vietnam Vets with Cholangiocarcinoma

Hello Stacie and welcome to our site.  Personally, I don't have any experience with VA denials however, Sheila Harrison does. Have you tried googling her name?  Others may also step forward and help you along.
Best wishes and good luck,
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

Re: Vietnam Vets with Cholangiocarcinoma

Hi Stacy,

Welcome to the site. I can't help you with this, but I wanted to join in with Marion in welcoming you here. Hopefully others will be along soon that can help you with this and I wish you every success.

My best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Vietnam Vets with Cholangiocarcinoma

Hi Stacy,

I can't be of much help here, as I also have been denied.  I too plan to appeal, but have just run into so many roadblocks.  I have been in contact with Shelia and she has been a big help, unfortunately, in my case, Jim passed away so quickly we didn't even realize at the time that there could be a service connection.  Being after the fact, I am having a hard time establishing a connection.  I think they know it is there, but from what I understand most of these claims are denied, however I do know that under certain circumstances some have been approved.  I guess all we can do is keep trying.  I was told that my best chance would be if  CC is eventually added to the list of cancers connected with service in Vietnam.  At this time this is not the case and who knows if or when it may ever be added to the list.  If I get anywhere with my appeal I will let you know and please let me know if you have any success with yours.  Good luck to you.

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

Hi Stacy:

My husband Tom was never in Vietnam so we know that he did not contract Cholangiocarcinoma there.  However, he was stationed in Germany in the motor pool.  He has put in a claim to the VA for service connected disability based on his exposure to Chromium 6, a PCB, which has been proved to cause liver cancer.  The VA used green army paint which contained Chromium 6 and just recently in about 2006 switched their paint to a paint that contains Chromium 3 which is safer that Chromium 6 based paint.

We do not have an answer to his VA claim as of yet, but just recently had to travel to Milwaukee and meet with a 'independent' doctor hired by the VA to go over the claim and make a decision.  I have read a lot of the denials on the VA website, which posts all the claims and the decisions.  The one common theme that I did pick up on was that most (if not all) the claims for service connection have been filed by the widows of the Veteran, not by the actual Veteran.  In Tom's case, he is the actual Veteran filing the claim and hopefully that will have some bearing on the decision. 

We plan to appeal if it is turned down becuase there is NO HISTORY of anyone in his family ever having cancer.  If the VA can give service connected disablity for type 2 diabetes, they really need to be looking at all the Veterans who are coming down with Cholangiocarcinoma and start recognizing this disease as service connected, whether it comes from the Rice Paddies, the fish, the water in Asia, or from PCB's such as Chromium 6.  I have heard from other Veterans that have fought to get service connected disabilities that sometimes you have to appeal it three and four times before they will approve it.

The funniest part of all the paperwork that has to be filled out is the question "Did you have any symptoms when you left the service".  Of course not because exposure to the Aisan Fish Fluke or exposure to PCB's that cause cancer can take 40 to 60 years to manifest itself and start causing problems. 

All the literature that we sent along with Tom's VA claim showed those stats over and over again.  It does not, however, seem to matter to the VA, since there was no evidence of the Cholangiocarcinoma when the Veteran 'left the service' that seems to be the one theme that they are using to deny these claims.  I feel that if the actual Veteran's start putting in these claims (while they are still alive) that some of the rulings would turn out differently.  However, in some instances, like Darla's husband Jim, there simply isn't enough time between diagnosis and the death of the Veteran to even begin to file for a service connection!  As unfortunate as that is, the widows of these Veterans need to continue to appeal and appeal again if necessary.

I also believe that there are many, many people who belive that Cholangioncarcinoma is ONLY caused by the Asian Liver Fluke, and that is incorrect.  PCB's and exposure to them also causes Cholangiocarcinoma.

Go with God and KEEP KICKIN' THAT cancer.

Margaret (My husband and Cholangiocarcinoma)

39 (edited by StacyB Wed, 02 Jun 2010 18:21:10)

Re: Vietnam Vets with Cholangiocarcinoma

Thanks to everyone for your responses and the warm welcome to the board!  I did contact Sheila Harrison and she is going to be a wonderful resource.

My dad was diagosed with CC in February of 2008 and passed away at home in September 2009.  It took me a while to make my first post, but I so appreciate this board.  I have been lurking around the board since 2008 and value all of the information that is shared here.

Please keep the updates on the VA process coming, and I will keep you posted on our progress as well.  Our initial application was submitted right after my father passed, with medical literature supporting the relationship of CC to liver flukes and a potential tie to dioxin exposure in Vietnam.  The initial application was denied, but we have now started the appeal process, as I understand initial denial is pretty standard.  According to Sheila Harrison, there are now 8 cases that have been approved as service-related.  Unfortunately, since this disease is diagnosed so late in the game, many cases are never brought to the VA.

Best of luck to everyone on the board and keep up the good fight!

Stacy

Re: Vietnam Vets with Cholangiocarcinoma

My father was just diagnosed with bile duct cancer last week.  He is in stage 4 and the prognosis is not good.  He served in Vietnam from 1967-1968.  He was also stationed in Korea (hardship tour) for a year in 1978.  I will have to ask him where he served in Vietnam when he is feeling better.  He is 74 years old, so this surgery has taken it's toll.  We have been told that the cancer has enveloped the arteries that go into the liver and it is incurable at this stage.

Re: Vietnam Vets with Cholangiocarcinoma

Hello emstexas and welcome to our site.  I assume that a resection had been attempted, but metastatic artery involvement caused the operation to be aborted.  I am very sorry to hear that.  Unfortunately this happens quite often as the true extent of the disease can only be determined during the operation.  And, often the disease has progressed without any warning signs to the patient.  At times though, the cancer can be rather slow growing and I am hoping for your Dad to belong to this group of patients.  Once the initial shock wears off you might want to consider learning as much as possible about this disease.  You might want to start by reaching out to the members on this site.  They will gladly answer any of your questions and they will guide you along in this new to you, world of Cholangiocarcinoma. 
I am glad that you have found us albeit I wish it had been for different reasons.
Best wishes,
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

Re: Vietnam Vets with Cholangiocarcinoma

UPDATE:  Three weeks after the attempted resection with my Dad, he was admitted to the hospital after experiencing hallucinations, and then soon his speech became incoherent.  He had been disoriented in the mornings but then things would get better during the day, so we assumed it was lack of sleep and stress from the big surgery he had.  We never really got any post-op instructions on what to look for with infection besides fever, and a nurse was coming to the house regularly to check his vitals.   The doctors at the hospital believed that he was suffering from some sort of infection and eventually, they found a mass in the gallbladder area while doing a scan.    They drained fluid (enough to fill a coke can) from the place where his gallbladder had been removed.  They put him on a series of antibiotics, but nothing seemed to work.  He passed away Saturday morning, August 28, 2010 (his surgery was on July 28th).  So if anyone sees signs of disorientation, incoherent speech or hallucination after surgery, these are serious signs of possible infection that should not be ignored.

Re: Vietnam Vets with Cholangiocarcinoma

Dear EMS, we are so very sorry to hear about your Dad. Thank-you so much for the warning as I am sure many of us feel that some Meds can cause the same reactions. Our thoughts and prayers go out to you and your Family.

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 know that this post is from a while back but I thought if anyone is still trying to keep track of information and connection between CC and Vietnam Vets I'd share that my dad, who served in Vietnam in 1967-68, has recently been diagnosed with CC. No known risk factors, he's been generally healthy up until this came up so he keeps asking himself where did it come from. (and all we get from doctors is "bad luck" ~ thanks a lot!).

No plans to send anything to the VA but hoping that anyone else trying to get responses from the VA is successful.

~Lourdes

Re: Vietnam Vets with Cholangiocarcinoma

Hi Lourdes. If you go to our Search Engine at the top of the page and just type in Viet Nam, I know all the posts on this subject will appear. My husband, Teddy pased December 6th and he served in Korea where we also think there is a connection. Good Luck

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

Lourdes.....Sheila Harrison has been of help to many VA Vets and families.  Certainly she knows how to fill out the required forms.   Here is her website:
http://www.engineersvietnam.com/network … arning.htm
All my best wishes,
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

Re: Vietnam Vets with Cholangiocarcinoma

Lourdes, sorry to hear about your dad.  My original claim was denied and I am in the process of appealing the denial.  I did a lot of research on this and am willing to share the information I have with anyone that might need it.  I have a fb page titled Vietnam Vets in cholangiocarcinoma or you can send me an email at
petitti.mario@yahoo.com
Because of the research I have done and of more Vietnam Vets getting this cancer, I cannot see how it is not related. 
I also have been in touch with Sheila Harrison and she is great with helping others who are going through this.
Let me know if I can do anything for you.
Anne Petitti