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Posts found: 2
She seems to have some. She tried to get him into a study but 2 things prevented that from happening.
1. His healing time from the whipple
2. The VA wouldn't approve the treatment through the Fee basis.
Yes, the positive lymph nodes were removed and all margins were clear. The surgeon only does hepatic and pancreatic surgery. His comments were that he didn't often get to give good news but he felt this was good news but cautioned us that the Bile duct runs through the liver and they couldn't remove that. His ca19-9 is now 40. It was high prior to the surgery. There is no evidence currently of further spread.
I am still wondering how many vietnam vets have had this as I have found some mention in my research regarding exposure to dioxin as well as liver flukes in SE Asia.
It seems most die before they would be able to pursue help from the VA.
I can't believe I just found this site. My husband was dx with extrahepatic cholangiocarcinoma 11 months ago. I did every search you can imagine and never saw this site. The only thing the Doctors gave us was the Pancreatic support sites. But now I am here and will get started.
My husband has been a very healthy man throughout his life. He did smoke and drink but quit smoking nearly 18 year ago and drinking 21 years ago. The drinking was selfmedicating for PTSD. Last winter he seemed to be aging before my eyes and had no energy. Things came to a head in June. Urine turned dark, stools light, no appetite and itching. I had thought his sclera was a little yellow but they never seemed very white so didn't really get concerned until he mentioned itching. By the way, I am a nurse.
I called his primariy care at the VA on Monday June 14th and they instructed us to go to the ER. Well 10 hours later we were told he had a tumor and they were going to do a CT scan that night. The next morning we were told he had pancreatic ca and that a referral had been placed to see the GI doctor. On Thursday they did the first ERCP and obtained brushings. The next day they did another ERCP with needle biopsys and placed a stent. We were told they couldnt definitly say it was cancer but their experience told them it was and a request was sent to the chief of staff for a fee basis surgical referral since the VA did not have anyone qualified to do the surgery. Over the next 24 hours, all his jaundice and symtoms went away with the stint in place.
The oncologist told us he had 6 to 12 months and really got things moving. . We saw the Dr. DelCore at KU and he did a whipple on July 27th. The CA was in the pancreas but all margins were clear and only 2 out of 10 lymph nodes were positive. He has followed up with 1 cycle of Gencitibine, 28 radiation tx with 5FU and then 3 more cycles of Gencitibine. He had his last Chemo last week with a followup scan. We are now awaiting results of that scan. Oncologist says they will followup every 2-3 months and she would expect it back in 2 years.
This year has been difficult. I remember in June and July, every time we were driving to the Dr. or hospital, we would hold hands and say we felt we were driving to the gallows. I am hoping that now his tx's are over he will get to feeling better and we can do some things to enjoy our life together.
Posts found: 2