What You’ll Learn: A Patient-Led Guide to MPNs

Navigating a rare blood cancer diagnosis like an MPN can feel like being lost in a thick fog of medical jargon and “what-ifs.” Whether you are struggling with the relentless fatigue of Myelofibrosis or the anxiety of “watch and wait” with ET or PV, you deserve answers that make sense. In this “Office Hours” session, we sit down with a leading specialist to translate complex science into actionable steps for your daily life.

Topics:

• Understanding the “Why” Behind Your Symptoms: Discover why your bone marrow’s “thermostat” is stuck in the “on” position and how that leads to common challenges like fatigue, “brain fog” (difficulty concentrating), and that classic “hot shower itch.”
• Expert Answers on Your Diagnosis: Get the facts on why certain tests—like Next-Generation Sequencing (a highly sensitive genetic test) or bone marrow biopsies—are essential to identifying the specific “driver mutations” (genetic changes) like JAK2, CALR, or MPL that guide your care.
• Managing Your Daily Life & Wellness: Learn the “middle ground” of weight management—why losing weight can be a red flag in Myelofibrosis, while maintaining a healthy weight is vital in PV to reduce the risk of blood clots.
• Getting What You Need from Your Care Team: Master the use of “Symptom Assessment Forms” to track how you feel, ensuring your doctor sees the full picture of your quality of life, not just your blood counts.
• Actionable Next Steps for Specialized Care: Walk away with a clear plan on how to access an MPN specialist via telehealth, even if you live far from a major medical center, to ensure you are receiving the most “state-of-the-art” guidance.

Expert:

Dr. Kristen Pettit
Assistant Professor of Hematology and Oncology
University of Michigan, Ann Arbor, MI