My name is David and I am 36 years old with Stage IV rectal cancer. I was diagnosed on 6/25/05. I started experiencing abdominal pain and fatigue about 6 months prior to my diagnosis. I brushed it off as being too active. I was in 4 different sporting activities and I worked out on a daily basis. About 2 months prior to my diagnosis I started experiencing blood and constipation. I finally talked to my wife and we went to a family physician to get checked. I assumed I was experiencing a hemorrhoid problem. The doctor asked about my family history and colon cancer and I said that my grandfather on my mother's side died of rectal cancer when he was in his 80's. She ordered a colonoscopy and I had it done a few days after the appointment. The doctor came in after the procedure and said that a huge mass was blocking me and that he was confident it was cancer. We went to a surgeons office that day and I was scheduled to get it removed the next day. When she went in to remove it she saw droppings in my pelvic area and felt tumors on my liver. She was able to get the entire tumor in my rectum and re-attach me. She told my family that without treatment I had 8 months to live and with treatment 2 years at max. This was devasting as you can imagine but the worst part of it was that I was expecting my first child in December. My wife was 4 months pregnant when this bomb was dropped. I immediately had a ct scan done to see how many liver mets were on my liver. The results were not good. There were too many to count on both lobes. They were not big in size but there were a lot of them. We immediately started on 5fu/oxi/avastin/lev. I did 12 treatments with not a lot of problem. The neuropathy was bad but I was still able to golf and play raquetball. I had to learn how to hold things differently because of the feeling in my hands.
My CEA level prior to treatment was 60 and after 12 treatments it was 5. My oncologist said that I was still not a canidate for a liver resection. I wish that I would have had a second opinion on this because of the tremendous amount of shrinkage. I was down to 9 or 10 tumors total... but I didn't so I began taking the chemo pill and receiving radiation to my pelvic area. The radiation was very tiring and I was not up to par for quite a while. In the meantime my cea levels started climbing...5,7,10,12,15,25,38. I begin on the irinotecan/5fu and the cea levels still climbed. I was on this cocktail for only 4 or 5 treatments before I was switched to erbitux/oxi. I tested negative for the receptor gene that you need to get results for the erbitux but a lot of people I spoke to still went on it and it was decided that you can still get results without the EGFR receptor. My cea levels did not go up or down. They stayed the same for about 5 treatments. I hated the erbitux and wanted off. My wife was researching the SIR-Spheres procedure but kept getting it denied by the insurance company. The procedure cost about $75,000 here in Iowa and we did not have this kind of money. We had our doctor write the insurance company and tell them that this was my only hope. My oncologist did not know much about this procedure and did not hold out a lot of hope for it. My wife believed that if we were able to get this that it was going to help me and keep me alive longer. I wanted to try anything so that I was around for my son that was born in December 2005.
After many fights with the insurance company and the help of Sirtex we still were getting denied. In the meantime, a gentleman that worked with my mother donated $15,000 to us for this procedure. We were so happy and did not know how to thank him. We were putting a fund raiser together when this same man came back to us and donated $50,000 from his foundation and told us to go and kick this cancer's butt. We immediately called the hospital and they were willing to do the procedure for $65,000 and we were off.
I had the procedure done on 10/10/06 in Iowa City Iowa and they were able to get almost 90% of the spheres inserted. They were extremely pleased with this. The only problem is that some of the spheres slipped past the liver and hit the spleen and the pancreas. They did not think that it damaged anything but they kept me for 2 nights to observe me. I had upper right liver pain when I had the procedure done and afterwards I was in terrible pain. I had a really bad night and they were having trouble getting my pain under control. My liver hurt and my abdominal area hurt. They said that some people respond like this and it means that it was getting to the tumors. They also thought that it might have been because of the spheres slipping into the pancreas.
After 2 days I was able to go home and everything was looking good. I had a little pain for awhile but it slowly went away. The pain in my liver has never gone completely away, though. They think I have a tumor that sits on a nerve and it continues to bother it. I am not sure if it is dying or if it is alive.
I had a CT scan done 3 weeks after the procedure and the scan showed no change. I was very discouraged so I contacted Dr. Cade at Sirtex and he told me not to have CT scan done until 4 months post surgery that the spheres can work up to 9 months.
I had a CEA level taken last week for the first time since September and it is 18 down from 38. I am currently doing radiation on my spinal met so I am not sure if that affects the cea level. I also had a CT scan done on Friday 12/9 because of pinched nerve in my neck and they took a picture of my liver and it shows some shrinkage. I am very pleased with the procedure so far.