Discussion Board Forums Introductions! Vietnam Vets with Cholangiocarcinoma

Viewing 15 posts - 16 through 30 (of 47 total)
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  • #20671
    kathyb
    Member

    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.

    #20670
    darla
    Participant

    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

    #20669
    lainy
    Participant

    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.

    #20668
    katieloumatt
    Member

    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

    #20667

    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.

    #20666
    scragots
    Member

    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

    #20665
    darla
    Participant

    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

    #20664
    jclegg
    Member

    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.

    #20663
    darla
    Participant

    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.

    #20662
    jclegg
    Member

    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.

    #20661
    cjfrancis
    Participant

    If you go to http://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.

    #20660
    marions
    Moderator

    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.

    #20659
    darla
    Participant

    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

    #20658
    marions
    Moderator

    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.

    #20657
    darla
    Participant

    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!

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