We called back when the pain didn't cease and were blown of by the dr.'s nurse. So I got on the Internet and within three hours figured out my husband either had an enlarged spleen or pancreatitis. I was right -- he had both. We found out when I finally convinced him to let me take him to the ER. They didn't find a tumor on the CAT scan or in the other four tests I wanted them to do on him, based on my research.
Finally in September 2000 an MRI showed the tumor in his pancreas, about 4 cm if I remember correctly. He had a distal pancreatectomy in October. The cancer was in the area of the lymph nodes, but no nodes tested positive for the cancer. In November he started six weeks of radiation (daily) with three hits of 5FU chemo to make the chemo work better at the beginning and again at the end of the cycle.
The December 2000 cat scan showed some activity in his liver. Kevin has a tendency to form benign cysts inside but they knew they had to biopsy the wierd stuff on his liver. It came back with no cancer (January 2001), so they just watched and waited. Kevin resumed running, gained weight, and in July 2001 we were hiking at high altitude three to five hours a day. However, we found out when we returned from our trip that there was new stuff going on in the liver and he had another biopsy. We found out the cancer had appeared in his liver -- that was first week of August 2001.
He started streptozocin the next week. A week on, three weeks off. A week on in September, five weeks off. It decimated him and the scans showed the shrinkage of the spots in the liver did not merit the torture the chemo inflicted upon him. He developed a thrush-like infection in his mouth that we cannot get rid of, sores on his feet and a blood clot in his left leg that had him on a cane and in a wheelchair from October 2001 to early January 2002.
We got a second opinion at Sloan-Kettering in January 2002, decided against liver surgery, and began sandostatin injections for him in March 2002. By June 2002 he was standing up to teach his classes for the first time since he had chemo, and was walking 30 minutes a day. However, the June 2002 cat scan showed cancer was again advancing in his liver. That is where we are as I post this message -- evaluating conventional and experimental treatments.
One thing I have to post here -- I think people who are willing to try
experimental treatment, even if they are not eligible for a trial, should get
it paid for some way, some how. That is a big factor for us right now --
experimental treatment vs. financial security. Not fun.