My journey with GIST began in 2000 at the age of 57 when a five centimeter stromal tumor was removed from my stomach. The pathology report on the tumor said it was benign. In August 2005, I had a series of three episodes of shakes & chills, two weeks apart.
The first one was the day after my annual physical. I wrapped myself in an electric blanket for forty minutes to get warm and called my Blue Cross doctor, who the day before had declared me very fit. A new blood test and exam showed nothing of interest. Two days after the third episode I was at the VA clinic to renew my Lipitor prescription and shared with him what had been happening. After an exam and x-ray, a mass was found on my liver. The next day I had a CT scan and two days later the doctor called me to come in. Ninety percent of my liver was filled with three major tumors and what they called “satellite” tumors. His nurse walked me over to the emergency room at the VA Hospital in Long Beach, Calif. where I spent two weeks getting every conceivable test, including a liver biopsy. They drained a gallon of fluid from one tumor over six days, but finally released me as an outpatient to come back for further tests. I immediately went to my Blue Cross doctor with a two inch stack of reports and copies of the CT scan from the VA. I started over again with a new CT scan. No one ever looked at the VA reports and only the folks doing the CT scan looked at the VA scan and then, only at my insistence.
Three days later I was admitted to Hoag Hospital in Newport Beach, Calif. where new tests were performed, including another liver biopsy. Three days after that, two doctors came into my room in the morning and told me I had cancer. They refused to answer any of my questions, stating my oncologist would be in shortly to answer any questions. She showed up at 1:00 am to tell me she was going on vacation that day and set up an appointment in four days to see her associate and also refused to answer my questions.
I was left alone with no one to answer even one question. It turns out that she and her associate knew nothing about GIST, except that you take Gleevec (which I did) and her answers to the same questions I had asked her associate a week earlier were completely different. As a result of this, being scared, confused and not knowing how long I would live, I saw a gastroenterologist who, although admittedly had never heard of GIST, sent me back to the hospital for yet another liver biopsy from the same tumor as the previous biopsy and this time it showed a benign hemaginoma (dead tumor). He stated I did not have cancer.
You can imagine the joy I experienced. I immediately shared this good news with the Life Raft Group email community in a very detailed posting of the facts and medical terms used describing the three liver biopsies. Well, the consensus of the dozen who responded to my posting was “Sorry to bust your bubble, but we think you still have GIST and you need to see a GIST specialist”.
By this time I was reading and learning everything I could about GIST and cancer. Because of this, I asked my VA oncologist to help me get an appointment with Dr. Mike Heinrich who treats GIST patients at the Portland, Ore. VA Hospital across the street from his shared lab with Dr. Chris Corless at Oregon Health and Science University. He refused, so I emailed Dr. Heinrich directly and got an appointment in June 2006. I had sent him slides from Hoag Hospital prior to my visit and he determined I indeed had GIST with an exon 11 mutation.
I am now a full time member of the LRG. I get the emails in digest form and go through it daily. I have participated in all three GCRF California-Walks for a Cure in Ventura, San Diego, and San Jose to raise funds for GIST research and take part in Southern California GIST gatherings.
I have had two oncologists at the VA (where I get Gleevec) and am on my third and hopefully final private practice oncologist in three years.
Due to the many faults in my GIST journey, I am very cautious of who treats me and I ask tons of questions and occasionally tape record doctor visits.
Fortunately I have had great success with 400 mg of Gleevec, with only minor side-effects, and lead a very active life. One tumor has disappeared and the other two have shrunk in half and are now seven and five centimeters.
I retired in 2007 from a maintenance job of twenty years at a local church and sail three times a week on a 27-foot Catalina out of Dana Pt. Harbor. I also crew on other privately-owned sailboats having sailed the equivalent of three fourths of the way around the world since 1970. The latest sail was in April from San Diego to Puerto Vallarta, Mexico aboard a 64-foot Alden sloop, my tenth sail to Mexico. The most adventuresome trip was a four-month sail to Tahiti in 1998 on a 54-foot Schooner.
I continue to learn all I can about cancer and GIST and my interest is now focused on frequency waves to zap cancerous tumors like the Kanzius machine being studied at MD Anderson in Houston. This technology offers another approach to finding a cure.
I wear my purple GIST bracelet proudly and use it as a means to spread the word about GIST. It has been a remarkable journey and I accept the challenges it presents.