My name is Tim Mansfield and I live in Portland, Oregon with my wife of forty-two years,Gail. I am retired and enjoy hiking, biking, antique cars, and micro-brew. What follows is a brief narrative of my ongoing battle with GIST since I was first diagnosed in 1994.
On my fifty-second birthday in 1994 I had been cutting the large hedge behind my house. It was 100 degrees and I got the job done and had hauled two truckloads of branches to the re cycler. I was standing in the street in front of the house that evening drinking a beer and thinking what great shape I was in for fifty-two years of age.
Yes sir, I was in as good a shape as a thirty-year-old!
The next morning I was having abdominal pains, and a few days later I was in the ICU at St. Vincent hospital. I had lost a lot of blood but they could not determine the cause. I had an upper and lower GI, an ultra sound and a CAT scan.
|They said the bleeding had stopped and that maybe I should go home and just wait and see, Dr. Cook the surgeon kept suggesting surgery because I had lost so much blood and it was the only way to determine the cause for sure. The next morning I woke up with thirty some staples in my gut, and a really sore body. The surgeon showed me a picture of something really ugly and said It was a Gastro Intestinal Stromal Cell Tumor. He removed it from the small intestine just below the stomach. My primary care doctor said the same thing, and that there was no sign of any other tumors and that I should complete my recovery, go home, forget about it and dont get medical religion.
On the way out of the hospital five days later the primary care doctor said he wanted me to have a consultation with an oncologist even though treatment for the GIST was complete. A week later I was in Dr. Frederick Eys office. He told me the Tumor was eight centimeters and was GIST. He said five centimeters or less was considered benign, more than five was considered malignant. Yes they were cancerous. There was no sign of other tumors and my liver appeared clear. He advised that chemo and radiation treatment did not work on GIST so my treatment was done. The only option was surgery to remove GIST and that if they metastasized to the liver that was very bad. I got the impression that it would be terminal. However he said go home, try to forget about it, and that he gave me a ninety percent chance that I was cured and there would be no additional tumors. Little did I know that Dr Ey would become a close friend in the future.
Ten years later, just before my sixty-second birthday I was again cutting the hedge, this one behind my new house. A few days later I was feeling ill but thought it was a bug. A week later on July Fourth I was in for an emergency doctors appointment. Everything looked OK and he thought it might be side effects from a new blood pressure medication. Also the doctor said has anyone ever told you that you have an enlarged liver. He couldnt tell for sure but said to see my primary care physician for follow up. I did five days later. In the back of my mind was the thought of GIST, but no it couldnt be, It had been ten years. My primary care physician looked me over, took blood, and changed my blood pressure prescription.
That was on Friday, July ninth. Sunday evening, July eleventh, he was on the phone. Now how many doctors call you on Sunday! He said more blood tests were needed. Sunday, the eighteenth, he was back on the phone; an ultra sound was needed ASAP! Again, how many times do doctors call patients Sunday evening? Five days later on my sixty second birthday I was having my ultra sound and I knew from the look on the operators face and from the time she spent taking pictures of the liver that the cancer was back. Damn Was I getting to hate birthdays!!!
Five days later it was a CAT scan and needle biopsy. The day after the CAT scan and biopsy the phone started ringing off the hook. This time it was the oncologist, Dr. Ey. He wanted me in right away. From what I was told ten years prior I thought for sure that I was soon to leave this world. When I saw Dr. Ey on August second I figured that I would get the death sentence. He said that things had changed since he saw me ten years ago and that he thought that he could help me. I had GIST in both the left and right lobes of the liver and surgery was out of the question. He said that he would consider me terminal except that Now we have Gleevec and I think we can do something for you. Two weeks later I had a PET scan. They told me that tumors would light up on the scan. My liver lit up like Las Vegas on Saturday night. I swear the guy running that PET Scan and the radiologist must have needed a welders mask just to look at the scan results.
I started Gleevec about the first of September, 600 mg per day. I had a little reaction, and was off of it for two days, back on 400 mg for two days, then back to 600mg for seven days. I had another PET Scan on the fourteenth of September and the Scan went almost completely dark. The PET Scan operator was so excited that he let me know things looked much better even though he was not supposed to discuss results with patients. Two days later Dr. Ey called and said there was significant improvement. I just couldnt believe it! I had started feeling better after taking Gleevec for only five days but never expected a result this profound! At the time I had the second PET scan I had only taken twelve doses of Gleevec and I not only felt normal again but the cancer was on the run. Between the last day of August and November eleventh, less that two and a half months, my liver went from 23 centimeters, about twice normal size to eleven centimeters. I went from feeling very bad to feeling just great with all my energy and stamina back. I was back to walking four miles a day and riding my bike another six to ten miles a day. I had a rash pop up and after consulting with Dr, Blanke at OHSU Dr Ey cut back my Gleevec to 400 mg a day. That was on November eleventh, 2004. I have been on 400 mg of Gleevec ever since and have had only minor side effects like dry skin and the trots. My semiannual CAT scans have shown significant shrinkage of the tumors in the right lobe of the liver and no new tumors elsewhere in the body. The smaller tumor in the left lobe disappeared. The latest scans have shown stability. The only thing I can say is that the Gleevec is really a lifesaver! And oh yes, I really hate birthdays, especially number 52 and 62!