Thank you for this valuable update. The following statement in the linked article was an eye opener because as a patient I have been simplistically focused on blood cell counts, which in my case are in an acceptable range, as the key to control for thrombotic risk:
Conversely, in recent real-world studies, both phlebotomy and HU have failed to demonstrate the benefit of normalizing blood cell counts in reducing thrombotic risk.
Evidently I need to become better informed, MPN VOICE contains excellent updates and information so it is more a matter of breaking out of my narrow focus on blood cell counts.
...Exactly- and that's why when my Hct has been 45, 46, or even 47%, I don't panic, and I won't let my treatment team force me to get get stabbed either.
It is much more complex and involved than just the blood cell numbers. While HCT does matter, there is much more to what drives the risk factors. There is also more than thrombosis that causes significant symptoms we need to manage.
Educated patients have better outcomes. It allows us to work in a more informed fashion as we work with our care teams.
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Interesting article on protecting ourselves from sun
MPN-U or MPN Unclassifiable
Guidance from MPN specialist needed please, on whether to have Astra-Zeneca 2nd dose.
Liposuction and an MPN
