In 2000, Giora Sharf was diagnosed with chronic myeloid leukemia (CML). CML is a blood cancer caused by a genetic swap between chromosomes 9 and 22 – known as the Philadelphia chromosome – that drives uncontrolled white blood cell growth. At the time, the diagnosis came with a grim outlook. Doctors told him he might have only three or four years to live.
Back then, the standard therapy was interferon with chemotherapy, treatments with harsh side effects. Online, in a patient chat group, he learned about a promising new drug called imatinib. Imatinib was the first targeted therapy for CML, designed to block the abnormal protein driving the disease. Giora ended up joining the IRIS clinical trial but was first randomized to the older therapy. He found it so difficult that he was in constant contact with his doctor about the side effects. However, in February 2001 Giora was switched to imatinib. The switch changed everything.
“The medication gave me back a normal life.”
He remained on imatinib for the next fourteen years. The side effects – eye swelling and painful nighttime cramps – were manageable. Eventually he achieved a deep molecular remission, meaning even sensitive PCR tests no longer showed detectable cancer in his blood. With his doctor’s encouragement, Giora stopped treatment altogether in 2014. He has now been in treatment-free remission for over eleven years, but he still takes PCR tests every six months to monitor for a potential relapse.
Giora has channeled his experience with CML into advocacy. He co-founded the International CML Advocates Network, which represents 130 patient groups in almost 100 countries. His years living with CML, and meeting patients around the world through the network, have given him a clear view of where current treatments still fall short. Fatigue is the most common and disruptive symptom, affecting work, family and mental health. Many patients also experience rashes, cramps, bone pain, diarrhea, eye swelling, or memory and concentration problems.
“Quality of life matters as much as length of life.”
Giora notes that CML affects people very differently depending on where they are in life. Older patients tend to be consistent with the treatment but can face other health conditions that complicate care. Younger people seem to experience stronger side effects. In addition, they’re juggling careers, school, or starting families – and the side effects can interfere with that. In addition, the prospect of indefinite medication can be overwhelming to a young person. Nonetheless, adherence is critical.
“Younger adults sometimes stop pills just to feel normal again.”
Beyond the physical burden, he points out that living with a controlled cancer carries an emotional weight that survival statistics rarely capture. Access to monitoring remains one of the biggest barriers to treatment-free remission. Stopping therapy safely requires frequent PCR testing – monthly for the first six months, then less often. In many low- and middle-income countries, this testing is too expensive or simply unavailable, meaning patients remain on therapy not because it is the best option, but because stopping cannot be done safely.
For Giora, the work isn’t finished. While he understands why many doctors who treat more aggressive leukemias or lymphomas focus elsewhere, he doesn’t think CML is solved. Even among those with access to TKIs, some develop resistance, some suffer severe side effects, and some never reach deep remission. And some still need bone marrow transplants. Giora’s goal is a world where every person with CML has the knowledge, support, and treatments needed to live fully – and, one day, be cured. For those running out of options, he believes new therapies in the pipeline offer real hope.