From our friends at Patient Empowerment Network. This is a four minute presentation by Dr. Raajit Rampal, Memorial Sloan Kettering Cancer Center. It covers some of the basics of MPN testing, along with the recommendation for genetic testing and why. While not loaded with detail, it is a good conversation-starter for people managing a MPN.
powerfulpatients.org/2023/0...
All of the best to everyone.
Thank you Hunter for a wonderful article! One point Dr brought out , imo was so important is the body needs to be treated as a whole. I think PV and ET is all related to the heart. In my case , have no idea at this point if my heart is healthy or not. My next step is to find a good cardiac specialist. Since the horrible chemo drugs are prescribed for clots and bleeds do not heal MPNs if your blood work is only slightly off couldn’t cardiac measures work as well as horrific chemo drugs to prevent bleeds or clots? These are my burning questions 1. Hemo and cardiac consulting together, and 2. a milder treatment for over 60 patients with eET and PT. Thank you again Hunter for your educational posts!
Best to you!
JAB 6
Thank you for posting this Hunter 😊
Thanks for sharing!
Hunter - thanks! He shares my MPN specialist's belief that a BMB and genetic testing should be standard of care for an MPN diagnosis - I wonder if that is becoming more standard?...
My MPN Specialist also shares this approach. I think this is an emerging consensus. We are hearing this more and more in various presentations from the MPN community. It is certainly what I bleieve should be the standard of care. We are currently including an annual JAK2 VAF in my cre plan.
Guidelines for MPN diagnosis and treatment , and a personalised risk calculator
State Licenses and MPN Specialists or Treatment Across Borders
South West treatment and Mpn Specialist
A model of good MPN care
Treatment options
