Topic: Looking for other Veterans with CC
Hello everyone - This is my first time on this website, read many of your entries and can't believe how many of you (young with small children, to the older crowd) and their families are dealing with this terrible disease! I am just thankful that we have found this website and all of you! Our purpose for joining is knowledge and information is POWERFUL! We are searching for other Vietnam Vets that were exposed to Agent Orange or radiation that have this dreadful disease and are now fighting for compensation from the VA. This disease is service connected by the VA for "ionizing radiation" exposure. It is a battle for Agent Orange exposure.
My husband, Phil, 62 years young (but worked liked he was 30), spent 20 years in the Air Force and did 2 stints in Vietnam, a wonderful, loving, happy and grumpy in a good way, little grey hair guy, was diagnosed with Cholangiocarcinoma on March 30, 2006.
He began feeling sick back in 2/06, flu like symptoms, loss of appetite, fatigued, a slight pain in his side and a little weight loss. March 6-22 he went back and forth to the doctor for blood work and tests. March 23 the jaundice started. Admitted to the hospital, CT scan. 3/24 ERCP was done. Gastro dr tried twice to place stent but was unable to pass through the stricture. She was clearly disappointed. 3/27 Radiologist put a drainage tube through Phil's liver to drain the bile and bag to collect the bile on the outside of his body. MRI done. He was in so much pain and sick: it was the worst thing I have ever witnessed. 3/30 Dr's tell us it is Cholangiocarcinoma. The only chance for cure is surgery, but we need an experienced surgeon. Gastro dr talks with a dr in Topeka, Kansas, Dr. James Hamilton (we HIGHLY recommend Dr. Hamilton; he has performed nearly 100 surgeries of this type (only had 2 death) and his assistant surgeon, Dr. Alley). 11 days in the hospital, still in excruciating pain. 4/3 released to go home so we could go to Topeka the next morning for consult with a surgeon. 4/4 WONDERFUL, GREAT NEWS! Dr. Hamilton says that the tumor is resectable!!! Thank the Lord!! 4/12 Whipple operation is performed: Phil cancer is in the distal common bile duct, into the head of the pancreas. Dr. Hamilton removes the common bile duct, gall bladder, duodenum and the head of the pancreas. Surgery was SUCCESSFUL!! Now the long road for a full recovery. 24 nodes were taken - 3 tested positive, so chemo is recommended as a precautionary measure.
5/17 to 6/14/06 Four rounds of Gemcitabine (Gemzar) was all that Phil could handle. He became terribly ill after each treatment, extreme fatigue, could not eat or drink (I was able to give him tube feedings (it was left in for this reason) when he was so sick, but that made him bloated, very uncomfortable and nauseated, broke out in rash on chest, arms, legs and neck, pain in his right eye to mention a few. Now that he has been off the chemo and taking Prednisone (eating us out of house & home now) for a month, he has gained 10 pounds and is feeling better each day. I thank God for each day and every minute we have together, even the rough times; he's still here and still FIGHTING FOR HIS LIFE!! Never give up the fight. There is always hope and miracles everyday. All the doctors have told us that they didn't think Phil would even make it through the surgery, he was that close to death, but he did! We will go to Radiation Oncologist, Dr. Stephen Smalley (world renowned for stomach cancer to name a few) on 8/7 to see if he thinks we need to do radiation.
Our thoughts and prayers are with you with God's blessings to all!
Mrs. Philly Willy (Barb)