I was diagnosed with metastatic GIST of the stomach and liver in October 2008. My wife Jill encouraged me to see our Family Doctor as Id had some abnormal fatigue while running and some internal bleeding. As a result of further tests, the primary tumor was discovered, and it was explained to me that I had something called GIST tumors, with the largest tumor in my stomach being over 12 cm (the size of a tennis ball) and the tumor had metastasized to my liver. As I learned, GIST, a rare form of stomach/intestinal cancer, does not respond to chemo or radiation. However, a drug called Gleevec was developed a few years ago which had proven effective to combat GIST, which I started taking right away as my key treatment option.
After a year on Gleevec, I started to explore the option of surgery as a more aggressive course of action. By soliciting additional input from specialists across the country, my wife Jill and I decided that I would undergo a series of procedures, beginning with a partial gastrectomy in Feb, 2010, which led to the removal f of the primary tumor and 45% of my stomach. 1 year later, I followed this up by working with my liver specialist, who treated me with Yttrium radio embolization, a targeted, outpatient treatment for both lobes of my liver. Finally, as I went through these procedures, I have also switched drugs from Gleevec, which had started to diminish its effectiveness as my body became immune to it, to Sutent, which I took for approximately 1 year to keep the GIST disease stable and under control. I am now on Stivarga as my systemic treatment drug.
Now that I have surpassed my 5-year anniversary, I am very happy to report that so far my treatment has been progressing very well. The scans I have had in 3-month increments since a series of Yttrium and Chemoembolization procedures have shown a shrinking, dying tumor burden and overall stability of disease. Essentially I am grateful that my medical team has succeeded in re-setting the clock and allowing my drugs to work to fight a tumor burden which is lower and less active than ever before. GIST does not go into remission, and I am fully aware that I will be managing this disease for the rest of my life. I feel blessed, however, that I have been able to largely continue to lead a normal, active life, and that I have a world-class medical team who look out for me and constantly offer support and guidance; this gives me tremendous hope that I am doing everything I can to fight the GIST and maximize my quality of life.