My GIST experience started in January 1997 when my first tumor showed up.  It took the doctors a long time to locate the tumor and take it out. I eventually had four major surgeries for GIST and have tried Gleevec twice. In January 2001, I started Gleevec and stayed on it for 14 months. After surgery in 2003 I was on Gleevec for a year.

In July 2004 I had 14 tumors grow back in my pelvic area. Because one large tumor was growing to the pelvic wall, I was inoperable. We looked at every possible trial at that time and decided on Sutent because of its track record.

I started Sutent in August 2004. After three days I got blood clots in my lungs. Even though I am sure these were not caused by Sutent, I was told by Pfizer that I needed a Greenfield filter, that I’d have to take Lovenox daily, and my Sutent dosage was cut to 37.5 mg. This first cycle I had a 35 to 50 percent reduction in my largest tumors. From cycle 2 in September 2004 to cycle 9 in August 2005, my tumors were stable.  However, during cycle 10 my largest tumor started growing and pressing into my right leg.
member21In September 2005 it was decided that radiation was something I needed to try. So we searched around and found a really good radiation center. But the first thing the doctor told us was, “I have never had any experience with GIST, so I do not know how it will react.” Thankfully, after six long weeks of radiation, five days a week, we did have some reduction. My CT in November 2005 showed that the radiated tumor had a 35 percent reduction and all other tumors stable, except the matching tumor on the left side of the pelvic had started to grow.

At this point we made plans for Dana-Farber Cancer Institute in Boston to discuss other options. Since we met with Dr. Jeffrey Morgan, we found out that February 2006 was the next entry date for AMN107. There is also another trial that has just opened for IPI. Dr. Morgan’s fellow, Dr. Ng, called recently to inform us that there is space in February. This is good news.

When we were at Dana-Farber, Dr. Morgan arranged to have my Sutent dosage upped to 50 mg. He also made arrangements with Dr. Warren Chow at City of Hope in Southern California to have a CT completed at the end of this cycle Feb. 1 to see if the 50 mg. has stopped growth on the one tumor. I will stay on Sutent until it no longer works for me. Thankfully there are other trials available in Boston now to choose from.

LRG Team
Author: LRG Team