My journey with GIST is a long haul that has taken me from Brisbane, Melbourne and Canberra, Australia to San Antonio, Texas. It is a journey that began in October 2002 when I found a rather large mass in my abdomen and was concerned enough that I phoned my GP for an appointment. When she felt the mass, she immediately made an appointment for a CT scan. I had the scan done within an hour and then returned to my GP’s office. After consulting with her partner, she informed me that they thought I had a lymphoma. She wanted me to go to Urgent Care at Princess Alexandra Hospital (PAH) “to get into the system.”
The following week I met with a surgeon at PAH who thought I either had a lymphoma or a sarcoma. A week later I had surgery to remove an 8.5cm GIST tumor from my small intestine. I was in the hospital for one week. My discharge papers read “unfavorable prognosis.” I didn’t know what that meant. So when I arrived home, I got on the Internet and googled gastrointestinal stromal tumor. That is how I found the Life Raft Group. I joined and sent an email asking for information and soon felt I belonged to a special family. That was in December 2002.
Not long after my diagnosis, my husband, Ian left. It was at this time that an opportunity arose for me to accept a three-month teaching position in Shanghai, China. I left for China in October 2003. This was a perfect opportunity for me, as I would return just in time for my next scans. After scans in January, I went to Nanjing, where I had been offered another job and shortly thereafter, Beijing. I spent a wonderful year in China teaching mathematics and was able to forget about GIST until my return to Australia in October 2004. My scan that month revealed I had a recurrence and was once again scheduled to have surgery at PAH in November.
By the time I had my next scans at the end of January, I had two new tumors. This time it was recommended that I begin Gleevec. However, in Australia this is not just a matter of having your oncologist write a prescription. The prescription had to be approved by Medicare at their office in Tasmania.
In the meantime I moved to Australia’s capital, Canberra, to stay with my father as I wanted to visit with him before returning to the U.S. where my children (2 boys and 3 girls) were anxious for me to return. I also had to make the decision as to whether to have surgery in Australia or in the U.S. After some consideration and consulting with my third surgeon, I decided to have surgery in Canberra. It went well; five tumors were removed along with part of my bladder. A few days later I was well on the road to recovery. However, by noon I was very nauseated and I began vomiting bile. As luck would have it, my surgeon was away in Sydney all weekend but he was being advised of my situation and giving instructions for my care. I had an NG tube inserted (very uncomfortable) and while it helped with the vomiting, it did not completely stop it.
When my surgeon returned, he immediately came to see me to discuss my situation. He told me I was probably going to have another surgery to repair the leak in my intestine which a CT had confirmed. I didn’t want to have another surgery so soon and prayed that it wouldn’t be necessary; however, exactly one week after my initial surgery, I was scheduled for another. It turned out to be a blessing after all, as another tumor was found. It was small and may have been missed the week before as tumors often hide in the folds of the small intestine. By the time I left the hospital the next week, I had lost a total of 15 pounds and felt very weak. A couple of weeks later, I resumed taking 400mg Gleevec.
In July 2005, I returned to San Antonio, Texas where I had lived many years earlier. I became a patient at Wilford Hall Medical Center (WHMC) on Lackland Air Force Base. I continued to have clear scans until February 2006 when another 4.8 cm tumor was found on my small intestine. I had another surgery and was put on Gleevec at 600 mg. I found the side-effects much more severe at that dose. Two months later, another tumor was found, though this one was small. Another surgery so soon after the last one was no longer an option, so I began taking 50 mg of Sutent but dropped to a four-weeks-on, two-weeks-off schedule at 37.6 mg because of my neutrophil count.
In October 2006, I received approval to be seen by Dr. Jonathan Trent at M.D. Anderson Cancer Center (MDA) in Houston, Texas. I continued to see my local oncologist but went to MDA every 3 months for scans. I remained stable on Sutent for exactly one year. At my appointment in May of this year, Dr. Trent informed me that my tumor was growing. The recommendation was surgery. My sixth GIST surgery was scheduled at Brooke Army Medical Center on June 21. It was successful and I was home within a few days. I have resumed 37.5 mg Sutent in the hopes that new tumors will be prevented from forming.
In many respects I am lucky. I now have a wonderful new man in my life, Phillip who has been very supportive. I have great children who care and worry about me. Moreover, I feel very blessed; while many dread surgery, I feel very fortunate that it is still an option for me at this time.