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How did you make the final decision to begin HU protocol for ET?
Blood Cancers & Disorders | Last Active: Jan 22, 2023 | Replies (75)Comment receiving replies
No one has hypothesized as to why I have not had thrombotic problems despite high platelets for 20 years, but since I should have had problems based on family history, but have not, I personally give some credit to 40 some years of organic, vegetarian (lately vegan) food, bike commuting, yoga, & dog walking (ha!) Reading, art, writing and gardening are my go-tos for "lifestyle." If my personality wasn't stress&worry-based, I might have escaped this mutation, but personality is pretty hard to control. Trying qi gong now, as it helps me to breathe deeply. I'd love to read what doctors and other medical folks advise to MPN patients. I hope people chime in with advice they've been given. I know diet is not a big part of many docs' training, so we might have to go further afield to find answers. Anyhow, here I am amongst the beleaguered and frightened, so I have no boasts to make! Best of luck sent your daughter's way!!
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I think we need to get away from the idea that we caused our own disease by eating impure food or having the wrong personalities.
Research suggests that the driver mutations for ET are not themselves inherited, but that we likely inherited a predisposition to mutate when exposed to certain triggers. We lived near a chemical plant that made Agent Orange and napalm before EPA regulations were imposed. Dad and I got ET, but not my mom or brother.
Fwiw, I suspect my biological grandfather had ET. He experienced sudden onset of fatigue in his last year and died of a massive coronary thrombosis at age in 1959, before anybody really knew what ET was.