cjfrancis
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Thanks for the info Jeff. It is helpful and less frightening to be more informed and know that others are facing the same storm. We look at each new problem as a storm and not a disaster. Gerry is some better today. I’m trying to keep him a bit ahead of the pain/naseau and it seems to help. It’s so hard for a man who has been so active and self reliant to rely on drugs to keep him going from hour to hour. You remind me, from what youve written in the past, alot of Gerry. I think the two of you could really relate with one another. He’s just not up to sitting at the computer right now. Again thanks for all you do for all of us. You and your family are remembered in our prayers. Cathy
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. cjfrancishttp://www.answers.com/topic/cholangiocarcinoma?cat=health
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. cjfrancis
Jeff and “babe”, You are both such an inspiration of courage for all of us. “Babe” I felt the same fear the other night! It helps to know my fears are also someone else’s fears and I’m not losing my faith and my mind but just being human. Thank you for sharing with us. Have a wonderful vacation enjoying each other. cjfrancis
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. Gerry
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.
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. Cathy
Thanks for the good advise. Will see the oncologists this week and going to another oncologist for second opinion. We will remember what you advised. Treatments will probably begin the third week in May. God be with you all. We’ll remember you in our prayers. Cathy and Gerry
I agree that this website should have inspirational or good news stories so that we can encourage each other. My husband and I are just beginning this journey and need all the encouragement we can get and hope to encourage others with hope. Cathy
My husband Gerry and I are new to this website and Gerry has just been diagnosed with CC. In early April he had half his liver resected. Soon he will be starting Chemo/Radiation. What is the alternative treatment Patty is on? What is IP-6? It is truly a scary disease! Our prayers are with you all. We were so touched and encouraged by your faith, Ted and Patty. Bob and wife, we will keep you in our prayers. Keep up your courage to face tomorrow and find strength in knowing we are all with you, you are not alone! Cathy (Gerry’s Wife)
Prayers are surely appreciated. Will see Oncologists this week and plan to get a second opinion. The first oncologists are planning to do Chemo and Radiation at the same time. Radiation five days a week for five weeks and a Chemo pump will be with me to infuse medicine a little at a time all the time. Has anyone had this done in this manner and how did it work? We’re getting a second opinion to be sure this is really what needs to be done. We sure thank God for this website because we all need a support group to help us thru the storm before us. Thanks Jeff and may God bless you and yours as well.
