I am age 74; treating CalR ET for 6 years, first with HU and then with Anagrelide.
Hi Donna. Another good source of information for MPN's is a nonprofit called Blood Cancer United. It used to be called Leukemia and Lymphoma Society but changed its name as it includes many blood diseases, including the MPN ones. They've got a free online lecture about current MPN research this Saturday that I've signed up for. Maybe that would interest you. Plus: At age 74, I've got multiple friends far more ill than I am, I feel lucky that Anagrelide keeps my platelet level under control and there are meds that work for my other health conditions. Good luck to all of us!
That's quite a journey — six years managing CALR ET, navigating HU, then switching to Anagrelide, and now dealing with parathyroid surgery too. You're clearly someone who stays on top of their health.
There is a recognized connection between MPNs like ET and autoimmune conditions. People with MPNs may have a higher Show Full Answer
I had Hashimoto thyroid in my early 40’s that progressed into cancer when I was 48. I also have autoimmune bile duct liver disease called Pbc. I’ve had eczema and allergies all my life. Someone will eventually figure out why our bodies go coocoo and attack themselves. I think there is a correlation, but we aren’t there yet. You have to wonder about research funding, and how much has been lost to lack of it.