We Asked, You Answered: Part Two 

  • MPNRF | October 21, 2021

    In our August Digest, we asked readers for one piece of advice they would give someone who was recently diagnosed with ET, PV or MF. We are grateful to everyone who shared their perspectives, some of which are highlighted below. 

    JD of Denver, Colorado: Reach out to others with PV to understand the disease better and how you can thrive and live healthy with it. 

    Sadhana of San Jose, California: …watch and report new symptoms, seek MPN specialist advice early, stay vigilant about possible side effects of MPN drugs, join support groups and become an expert in their disease by self-education and awareness. 

    Martyn of Nelson, New Zealand: Don’t panic! It’s very easy to get obsessed and/or stressed by the idea of having a blood cancer but many conditions are manageable with a combination of diagnosis, medication, monitoring, and lifestyle adjustments. 

    Michele of Guilford, Connecticut: …learn all you can about MPNs, specifically the one you have. I believe the more you know and understand your blood cancer (the positive and the negative), it will provide you with the knowledge of your disease and how to proceed with treatment when speaking with your doctor.  

    Robert of North Carolina: See a hematologist/oncologist who is experienced with MPNs — and stick to the scheduled check ups and labs that your doctor(s) recommends. It is important to have a history of your labs and blood counts so your doctor(s) can identify trends and ranges. Plus, the sooner you see a doctor specialized in this area, the sooner you can get the help you need.

    In an earlier blogpost, we highlighted responses to another question in the August Digest which was on what readers wished their clinicians had told them. You can read those responses here.