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Nelson Patz began his MPN journey in 2011 when he started experiencing extreme fatigue. At his first visit to his primary care physician, they believed it was Lyme disease. After a round of high-dose antibiotics, his symptoms only worsened. Nelson received further testing that revealed an elevated platelet count and that he was positive for JAK2 mutation, indicating myeloproliferative disorder. He was referred to Dana Farber Cancer Institute in 2012 for a second opinion. His diagnosis was confirmed, and the recommendation was to stay on hydroxyurea (Hydrea), as prescribed by his local oncologist. While the treatment lowered his platelet count, Nelson experienced painful and severe side effects from the therapy that left him feeling vulnerable, but his healthcare team stated that lowering the platelets was top priority.
In 2014, Nelson’s local oncologist was alarmed by a rising white blood cell (WBC) count, suggested he switch to ruxolitinib (Jakafi), and started to taper him off Hydrea. Nelson was concerned about the cost of the treatment and attempted to reach his doctor about it but never heard back. For six weeks, Nelson received no treatment and was in tremendous pain with swollen legs, no appetite and dropped 25 pounds in one month. He began losing hope.
An oncologist at Nelson’s office insisted that he see a specialist, but he was concerned about taking time off work and the expense. Nelson’s daughters live in Colorado and, after some research, suggested he go to UC Anschutz Medical Campus. He and his wife picked up and left to make the six-day drive for an appointment with Dr. McMahon in July 2017. Dr. McMahon encouraged Nelson by reminding him that there are options, and “there are a lot of reasons to be hopeful,” which inspired a new confidence in his fight against the disease. Nelson qualified for financial assistance program to take Jakafi. He felt an almost immediate change in his health and well-being after beginning the treatment.
Today, Nelson feels stronger than ever and does regular weight training, enjoys walking his dog, and practices a “gratitude attitude” by visualizing and praying with positive energy. He also uses what he’s learned from his journey with an MPN to teach a class on attacking anxiety and recommends that other patients make decisions based on information, do what’s in their power, and have trust in a good healthcare team.