I've spent the past hour or so familiarizing myself with the posts on this site. I've begun to understand the magnitude of this rare little disease, and was shocked to learn this was Walter Peyton's cancer -- who knew?
Although I've had several surgeries (3) and rediagnoses, I will conquer this critter. On 7/30/09 I will learn the results of my latest PET/CT scans & blood work to see if the tiny malignant lymph node outside my aorta has grown or stagnated. Moffitt Cancer Center's GI tumor board will discuss my scans to determine my next course of action. Dr. Mo Malafa is my GI surgeon and Dr. Jonathan Strosberg is my oncologist; both are in the GI clinic at H. Lee Moffitt Cancer Center & Research Institute in Tampa, FL.
Gemzar and 5-FU, which were well tolerated, had little effect on my tumors. Radiation was more effective, but didn't obliterate the little rascal. Possibly the chemo kept it from spreading. This site has provided some treatment options for discussion with my doctors.
Thanks to all who take the time to give hope and guidance to those of us living with this disease. I especially like all the positive phrases emphasizing good attitudes and outlooks.