World’s Longest Living Gleevec/TKI Survivor, surviving CML for nearly three decades
I was diagnosed with CML in January 1995. I went in to get the results of a MRI that I had taken in December 1994. The tests revealed that I did not have the marrow of a normal 37 year-old man. Further tests confirmed that I had CML. The doctor gave me the normal prognosis of three years to live unless I had a bone marrow transplant. At the time, I was a Major in the Army, married with a five year-old daughter. No one in my family matched as a donor and there were no matches on the bone marrow registry. I started the standard treatment of the time which was interferon. I also started conducting bone marrow drives all over the United States. Although I never found a donor, I added many thousands of people to the registry. At one marrow drive, 18 months after my diagnosis, a survivor with hairy cell leukemia told me he had been near death, but entered a clinical trial, which saved his life and suggested I give clinical trials a try. I started doing clinical trials. I entered several clinical trials. Around the three year mark all drugs were beginning to fail. I asked the doctor if any more drugs were available. He said there was one that was close, but they were still having problems with the drug, in the lab, in the livers of the animals. About six months after that, the drug was approved to be tested in humans. I started taking Gleevec in August 1998, three years before the FDA approved it for use in humans. It worked. Now nearly 29 years after diagnosis, at age 66, I am the world’s longest living Gleevec and TKI survivor. I’ve ran a couple of 26.2 mile marathons, one ten months after starting Gleevec. My daughter is now a physician. My family and I do a lot of advocacy work and still recruit marrow donors. I am very pleased with the progress that has been made in CML research. I do believe that a cure is possible for CML and will keep focus on that goal.