After a routine physical in 2014 revealed elevated red blood cell counts, Chuck’s primary Healthcare Professional sent him to a specialist for further evaluation. At the time, he didn’t think it was anything serious. That is, until he realized he was being referred to an oncologist. Weeks later, after several appointments and a positive test for the JAK2 mutation, Chuck was diagnosed with polycythemia vera (PV). He was told that it was a rare blood condition that could be managed with phlebotomy. The word cancer never came up. Chuck accepted what he was told and didn’t ask too many questions.
After about 5 weeks of phlebotomies, Chuck was started on hydroxyurea (HU), which he took for years, despite suffering various side effects. During this time, he consulted with a number of Healthcare Professionals, hoping to find someone with experience treating PV. A little more than a year after his diagnosis, Chuck finally connected with a hematologist who confirmed that PV was, indeed, a rare, chronic blood cancer. That’s when things finally clicked in his mind—and he knew it was time to become a more informed and vocal advocate for his own care, starting with getting the facts about what was going on inside his body.
Chuck began doing more of his own research. He started asking more questions during medical appointments. He also joined several online PV support groups and attended online medical webinars. As he began taking a more active role in his own care, he also started noticing and keeping track of how his disease was changing—and communicating those changes to his care team. This enabled Chuck and his Healthcare Professional to take action when his spleen became enlarged.
One day, while doing online research, Chuck came across information about Jakafi. All-too-frequent phlebotomies—along with ongoing HU side effects—led him to consider the possibility of making a change. So, he did his research. He asked questions. He even discussed it in his support groups. And in 2020, his Healthcare Professional prescribed Jakafi. Since starting treatment, his blood counts are well controlled, and he has not required any more phlebotomies.
As an Ambassador for Jakafi, Chuck hopes to inspire others to become educated and empowered advocates for their own care.
Intended for US residents only
Back to Jakafi.com
