Support Groups

Blood Cancers & Disorders Support Group

Public Support Group
291 total results
Discussion
Polycythemia Vera and Nutritional Ketosis
I was diagnosed with Polycythemia Vera several years ago and my treatment regiment has been regular phlebotomies (generally about every four weeks.) I needed to...
Last active: Jul 22 5:35pm
Discussion
Polycythemia Vera or Essential Thrombocythemia ?
My wife, Pam had a follow-up appt on Friday, due to extreme weather and bad roads, it was rescheduled to afternoon. We repeatedly asked about...
Last active: Jun 3 12:02pm
Discussion
How bad is a diagnosis of Polycythemia Vera?
My husband was recently diagnosed with polycythemia Vera, (PV). Dr started him on Hydrea 500 mg twice a day and a phlobotomy procedure every two...
Last active: May 18 12:08pm
Discussion
MGUS with Polycythemia Vera (PV)
Had a bone marrow biopsy done in 2017 and was diagnosed with MGUS. Additional BMBs in 2018 & 2019 showed a slow progression of my...
Last active: May 6, 2023
Discussion
Polycythemia Vera, Antiphospholipid Syndrome & Hemochromatosis
Anyone out there that has all three of these conditions - how are your conditions managed and measured? Currently on Jakafi - iron/ferritin level rising...
Last active: Feb 25, 2023
Discussion
Contracting/developing polycythemia vera
There is no known cause for developing Polycythemia Vera but I suspect that maybe too much exposure to radiation might bring on this blood disorder....
Last active: Jul 8 10:28am
Discussion
New - possible Polycythemia vera (PV)
Hi my hematocrit has been high for a few years, and cardiologist suggested it see a hematologist. My pulmonologist did a sleep study and found...
Last active: Mar 25 11:43pm
Discussion
Polycythemia Vera: Just been diagnosed
Have been diagnosed with polycythemia Vera recently, Any feed back
Last active: Aug 26 12:21pm
Discussion
Polycythemia Vera/ Hemoglobin Cowtown - Rare as a Unicorn?
I feel like an island. Doctors refer to me as a unicorn because I’m so rare. I shouldn’t really exist at all! I am a...
Last active: Jun 23, 2023
Discussion
Polycythemia vera (PV): Does altitude matter?
I am PV JAK2 and live at an altitude of 6000 feet. Could this altitude harm my condition? What altitude should I avoid?
Last active: May 12, 2023