My name is Michelle Presnall, and this is my GIST Member Story. I am 45 years old now, but my story starts back in 1988.
During my teenage years I experienced a lot of stomach problems. In 1988 I was traveling in the US when a doctor visit led to the discovery of a 6cm x 9cm tumor in my stomach. I had a laporotomy at Panarama Community Hospital in Los Angeles, and was sent home to Sydney, Australia for my recovery. At the time, my diagnosis was leiomyoma with an uncertain malignant potential. Within three months, the tumor was back and had doubled in size and in pain. The next year I had a partial gastrectomy which removed the tumor and the top half of my stomach. This was a huge operation that nearly cost me my life.
Thankfully I was still young at the time and was able to recover quite quickly and was traveling again within three months. In October 1989, I had to have surgery again while I was in London; scar tissue had developed around my small bowel and it was becoming gangrenous. I had to thank my youth once more because I was able to continue backpacking in Britain only ten days later. I suppose I have had the hospital tour of the world.
At that time, we believed all of the tumors were gone, but I continued to have an endoscopy and CT scan every year, just to be safe. Then, on a visit back to Australia in 1995 (I had moved to California a few years earlier), the tumors came back and had metastasized to my liver. I thought it was funny at the time that my gastroenterologist, referred to it as “lumpy.” I continued to have my yearly scans and finally had a biopsy in 1997. Leiomyoma, again. They suggested that we keep an eye on it, so we did. 2003 was a very stressful year for me. My then husband was a Marine serving in Iraq during the first part of the war. My tumors had shrunk to half of their size, and then six months later they and had grown and spread to my abdomen. I had another biopsy done, but this time I received a different diagnosis: GIST.
At this point, my doctors decided to start me on 400 mg of Gleevec. During the course of 18 months I was on and off Gleevec, which kept my tumors stable. The Gleevec was far too toxic for me, so I went off of it and just continued my PET scans. Three years later I was in bad shape. I had received mixed results from my next scan, one tumor was growing and one was shrinking. I tried Sutent for a couple of weeks, but it shot my blood pressure up to 220/130 and the doctors were afraid that I was going to have a stroke. Now I was off of both Gleevec and Sutent and in the meantime I had developed a white stripe in my hair, eyelashes and eyebrows. It of course called for an immediate dye job.
This April, I found out that my tumors were misbehaving again. I entered a clinical trial for ARQ-197, but that only lasted for one month because my heart rate dropped down to 45 beats per minute. Thankfully my cardiologist says that my heart is okay. Since then I have had two more PET scans, and my tumors are still stable. Not shrinking, but not growing or spreading either.
After the lunch in Los Angeles where I was able to meet other GISTers, I feel lucky to still be alive. I believe I have my upbringing to thank for that. A life of small frequent meals combined with moderate exercise, great friends and family, and positive thinking are what has kept me going.
I have always been the type to push myself, and even though it takes more energy now, I am still living my life. Although I can no longer work full time because I am easily tired and overwhelmed, I keep going.
What else can I do? Just lie down and die? No way! I have too many things to do and places to see to do that.
