Chronic Myeloid Leukemia Survivor
A swimmer in high school, Ron Robbecke started doing triathlons in the 1980s. He was in great physical condition, swimming and working out regularly. In 2003, Ron was treated by his doctor for a case of poison oak. It took a while for it to go away and about a month later, Ron thought it had come back.
“I had these big spots on my legs where the poison oak had been and I just felt horrible overall,” says Ron. “I couldn’t sleep, my arms felt like they were on fire.”
Not sleeping was nothing new. He hadn’t slept well and had been battling depression since losing his wife of 30 years to colorectal cancer in 1999. But this was different, so Ron kept going back to his doctor to try to figure out what was going on. Because he wasn’t getting any answers from his doctor, Ron decided to see a naturopath.
As Ron tells it, “As kind of an afterthought—after he sold me about a hundred dollars-worth of vitamins—the naturopath decided to do a blood test. The very next morning he called me and said my blood was really messed up. That’s when I knew something was really wrong. So I went to a different doctor for a bone marrow test to find out exactly what I had.”
Finally in September 2005, two years after the case of poison oak that wouldn’t go away, Ron was diagnosed with chronic myeloid leukemia (CML). He was 59 years old.
“From my experience with my wife going through cancer treatment, one thing I learned is that doctors are like plumbers—there are good ones and bad ones. We found that the closer we got to Seattle, the better care my wife got. So I knew if my diagnosis was bad, I would go to Seattle for treatment,” Ron says.
A friend referred Ron to Janis Abkowitz, MD, a hematologist at Seattle Cancer Care Alliance (SCCA). Once he got to SCCA, Ron knew he was going to stay. “The doctors at SCCA spend as much time as I need to explain things to me so I understand and feel comfortable. They sit down with me like they have all the time in the world. Whoever does the hiring at SCCA really gets the cream of the crop. The doctors, the receptionist, the nurses, they’re all top notch.”
Siobán Bridget Keel, MD, who was a fellow under Dr. Abkowitz, took over Ron's care after about six months. “Dr. Keel is a pistol—she’s just constantly going and always up to date on the latest studies. The first day my wife and I met with her, Dr. Keel interviewed us and took all kinds of notes and said she and Dr. Abkowitz were going to be back to double-team me.”
The doctors discussed potential treatment options with Ron and, based on an individualized risk-benefit assessment, recommended treating him with Gleevec (imatinib).
Ron takes one pill of Gleevec every day at lunchtime. And he is careful with his diet since the drug causes loss of appetite and gastrointestinal side effects, such as diarrhea, bloating, and indigestion. “My mornings are great, my afternoons can be lousy. It (the drug) makes me feel like I’m coming down with the flu—achy, feverish,” says Ron.
Within two months, Ron's blood cell counts normalized. After 12 months, Ron's blood and bone marrow had no detectable Philadelphia chromosome (Ph), an abnormal chromosome responsible for CML, and very low levels of the BCR-ABL transcript, which encodes the mutated protein whose gene is located on the Ph chromosome. His disease has remained well controlled on this therapy.
Side effects and quality of life
Due to the side effects of his treatment, Ron wasn’t socializing. He was already struggling with depression and stress, and was still having trouble sleeping. His doctors recommended he see Jesse Fann, MD, MPH, a psychiatrist at SCCA. “Dr. Fann and I really hit it off. He’s a really neat guy. It’s just like talking to a friend. He has prescribed things to help me deal with the side effects, so now I’m going out more, I can sleep about six hours a night, and I’m getting back to normal.”
Dr. Fann adds, “Everyone going through cancer treatment is unique and has different needs. Ron is an amazing person and a true inspiration. He just needed a little help to get back on track, and he did the rest.”
Though Ron would like to reduce or stop treatment, presently there are no plans to change his treatment. He goes to SCCA for a doctor’s visit and laboratory testing every three months. The laboratory studies measure his blood counts and BCR-ABL transcripts levels, a marker of CML that can be detected in the blood and monitored for evidence of very early progression of his disease.
Ron is confident in his treatment at SCCA. “I can’t say enough good things about SCCA and what they’ve done for me. I would recommend SCCA to anyone. In fact, I told a neighbor he should go to SCCA and he’s now there three days a week for treatment for multiple myeloma.”
Dr. Keel notes, “At SCCA, we aim to provide premier care to all of our patients and strive to partner with them to attain the best possible quality of life. Ron’s case is a great example of the type of results that can come about from these active and close provider-patient partnerships.”
Living with cancer
Happy to be training for triathlons again, Ron says, "Exercising and staying active helps me deal with my treatment. If I go a few days without exercising, I can definitely tell. I just don’t feel as good.”
Now Ron enjoys taking care of Michelle’s son after school, helping him with homework, and taking him to swimming lessons.
In 2002, Ron bought a house and has been remodeling it one room at time ever since. Ron and his wife Terry, whom he married shortly after he was diagnosed, like to travel locally and internationally in their spare time.
Ron’s outlook is good. His advice to others is to be persistent and seek out good medical help. “I knew something was wrong. I wish I would have pushed my doctor harder and had the knowledge to ask him for a blood test so I could have been diagnosed earlier.”