You would never know that the subject of this Patient Profile is living with cancer, and that’s exactly the way he likes it. Very few people know this patient’s story, even though he’s been living with chronic myeloid or myelogenous leukemia (CML), an uncommon cancer of the bone marrow, for almost 8 years. He is the very definition of an empowered patient. He’s informed, involved, and utilizes the resources available to him. If cancer were a bull, he definitely would have taken it by the horns. He prefers to remain anonymous, but he believes so strongly in being an empowered patient, that he agreed to share his story to encourage others to take control of their own cancer care.
It was March 2013, when he went in for an MRI on an unsatisfactory hip replacement, that his cancer journey began. When the report came back it said that there was a bone marrow infiltration with a high probability of malignancy. “The word malignancy stuck out to me,” he says. He had no symptoms at the time, but he couldn’t ignore the report and knew he needed to take immediate action.
His first step was to confirm that he did indeed have cancer. Coincidentally, he was pretty well connected with a prominent oncologist who diagnosed him with CML, told him it was easily treatable, and referred him to another doctor for treatment.
Not being the kind of guy to accept his fate without thoroughly gathering information, he decided to get a second opinion, and was able to do so through another connection he had. The second doctor confirmed the diagnosis and the doctor referral.
Satisfied that he was in the best possible hands for his specific cancer, he began treatment taking one of the four tyrosine kinase inhibitor (TKI) medications commonly used to treat CML. Unfortunately, he started having intolerable side effects so, in August 2014, his doctor switched him to another TKI. While taking the new medication, he says his liver enzymes went through the roof and he was becoming concerned that he was running out of treatment options. However, once again, he was able to use his connections to get dosage instructions directly from the drug manufacturer, and with a simple shift in dosing, his problem was fixed. His liver enzymes returned to normal and he’s been living well ever since. “If I had to get a bad disease,” he says, “I got the right kind.”
His proactive nature toward his health was essential to the positive outcome he’s living with today. In addition, his connections to high-quality doctors gave him an advantage. He is grateful for that, but he’s also acutely aware that not everyone has the same advantages, and that’s why he appreciates the value of Patient Empowerment Network (PEN). He came across the free programs and resources available on the PEN website while doing his own research about CML. He believes that anyone who is sick should use whatever resources are available to get all the information they can. “The Patient Empowerment Network is a source of information and potential support,” he says. “I’ve told my friends and doctors about PEN because I want to help other people. To fail to do so would be a shame.”
He feels a sincere and urgent duty to pay forward his good fortune and credits that sensibility to his parents and his Jewish heritage. Describing himself as only moderately observant from a religious standpoint, he says he was raised to subscribe to the philosophy that there are only two kinds of Jews. “You either need charity or you give it,” he explains. In his life, he’s been fortunate financially, and so he feels compelled to give. “It’s just who I am, I thank my parents,” he says.
His charitable giving is also motivated by personal loss. His first wife died from an aggressive form of breast cancer, and he later lost a very close friend to myelodysplastic syndromes (MDS) and acute myeloid leukemia (AML), which he refers to as a death sentence. The pain of that loss continues to be palpable and has driven him to set up a foundation, named after his friend, at a leading cancer center that does cutting edge research on MDS, a group of rare and underdiagnosed bone marrow disorders.
Now at 76, with his CML in remission, he’s vibrant and busy and has no intention of slowing down. He continues to stay up to date on CML research because he believes it’s important to be informed about his disease. He serves in a one-on-one mentor program for cancer patients, and he also takes evening courses learning about topics such as the United States Constitution and the Federalist Papers. “I’m lucky,” he says. “With CML I will die with it, not from it.”
Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.