He is retired Army, was in very good physical condition. Never smoked; drank beer occasionally; ate very healthy; ran 5 miles a day and lifted weights for fitness. The symptoms: he had always been a really good eater; usually having seconds, and all of sudden I noticed he wasn't having seconds. When I asked about his loss of appetite, he said he felt 'full and uncomfortable' when he ate. He started losing weight and I would ask how much he was losing, but he kept playing it down and telling me he'd lost less than he actually had. Finally, we ran into a friend of his who looked at him and said 'what's wrong with you, you look awful' and I told him he had to go to the doctor. He made an appointment for a couple weeks away, but a couple days later I looked at him standing in my kitchen and could tell he was jaundiced. I made him go to the Navy Hospital the next day to walk in clinic. As luck would have it the doctor there sent him up to the G I clinic right away and the doctor there immediately suspected PC. They brought him in the hospital in a couple days and put a stent in to deal with the jaundice, which was a big help. He had itching for quite a while until the bilirubin worked its way out of his skin. I also found out that his urine had been dark like tea for a while, but he said he didn't realize he should have been worried about it. He had never been sick and didn't take any pills except a multi vitamin.
The Navy's G I doctor sent us up to U of Alabama at Birmingham for an Endoscopic Ultrasound. We didn't like the feel of the place and when they did the EUS, they didn't sedate him properly apparently because he woke up in the middle of the procedure while they had the tube down his throat. After the procedure was over, we saw the doctor who confirmed the diagnosis of PC but gave us no information or options at that time. We went back to Pensacola and I started researching PC and decided that he needed a top hospital, like JHU, Sloan Kettering, or M D Anderson if he was going to have a chance. We asked the military to let us go to M D Anderson because his family had some friends there we could stay with and then we self-referred him to M D Anderson via their website. They contacted us within a few days and we went to Texas in May for his initial appointment. They determined that he was a candidate for the Whipple.
M D Anderson does chemo and radiation before the Whipple, so he had 5+ weeks of chemo, which was Gemzar and Avastin in June and July The chemo was on Saturdays and then Monday - Friday he had radiation. The Avastin was a trial drug for PC although it has been used successfully with other cancers; however, a couple months later they discontinued it for PC as not being effective). They sent us home after that for him to recover for about 5 weeks and try to gain weight. We went back to M D Anderson in September and he had the Whipple on Sept. 7th. The surgeon, Dr. Jeffrey Lee, said the chemo and radiation had worked well and that the tumor was 70% dead and came cleanly away from the portal vein. Clean margins and no lymph node involvement at that time from what they can tell.
The Whipple was a difficult surgery, but he did well and all the reconfigured plumbing came back on line pretty quickly. He had a stomach tube for a week after we left the hospital to give him additional nutrition because he just didn't have the appetite he needed for about a month. He had to be restitched about a week after surgery because he was leaking fluid and they put retention sutures on the incision and I had to pack an open incision for almost 2 months after that. I got very good at wound packing, particularly since I was close to fainting the first time I had to do it. He was in the hospital for 19 days because of the restitching problem, and he went home with us still doing the tube feed and still packing the wound. He did not start gaining weight until the wound had healed closed, which is what they had told us at the hospital. They said his body would prioritize where it put the protein I was stuffing down him and the body's priority was building tissue to fill in the incision. They told me to try to get 1800 -2000 calories down him and 80-100 grams of protein; and I did everyting but stand on my head to hit that mark. I discovered unflavored soy protein from the health store and put it in everything from scrambled eggs to french toast and waffles. I discovered a great site on line that gave me the fat, protein, and caloried content of virtually everything including restaurant foods and fast foods.
He has gained back 35 of the 60 lbs he lost, and with a few setback...he had an episode of kidney stones that scared us silly...he is doing well, eating well, looks good, and finally feels like he has a reasonable life back. He has recently started to run again...carefully...and is enjoying feeling normal. He takes Creon 10 enzyme, and depending on what he is eating he takes 3-4 pills a meal. If there is much grease/fat, he may take as many as 6 but generally tries to stay away from too much fried food or greasy food. He is taking Nexium to ward off possible stomach ulcer that apparently can occur after this surgery.
In a few days it will be 1 year since diagnosis and things look good. He has to go back every 3 months for check ups and the next one is the end of May, so keeping our fingers crossed for good news again.
I can't say enough good things about M D Anderson Cancer Center in Houston, or about the doctors, nurses, PA's, and volunteers. Everyone was wonderful; everyone was positive and warm. I loved that they let me stay with him in the room the whole time he was in the hospital, there was a chair that folded into a bed. I felt better about it and so did he, and it helped for me to be there when he had a restless night and needed help. We were lucky to have some friends to go stay with there after he got out and before the doctors would let us leave the area, which was about 10 days after he left the hospital.
I was also lucky that I had a friend who moved in to take care of my 92 year old Dad while I was gone to Houston, and 2 brothers and their families in the area to watch over him also. Everyone in my family helped me be able to do this with Adrian. His relatives are all older, but they watched over his 89 year old dad and kept him fed and cared for, so we had nothing to worry about except getting Adrian through this. I learned that people want to help you, and you need to ask for help when you need it.
And I really thank God for the Internet and boards like this one to help with research and answers and support.