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Essential Thrombocythemia (ET): foods, diet, nutrition?
Blood Cancers & Disorders | Last Active: Sep 15 8:03am | Replies (112)Comment receiving replies
No, they didn't have the same diagnostics then. Dad had ET for about 20 years (he died at 82 in 2010 of something else). There was no genetic testing and only anagrelide and HU, no Peg, Jakafi, or stem cell transplant.
When I was diagnosed in 2015, it was a whole different ball game. They could pinpoint onset, determine mutation (CALR meant that I could go some years on just aspirin), and there was more awareness that symptoms were real and could be addressed. My hematologist at our regional health system was plugged into the expertise of the Mayo Clinic and had access to better info.
But I think it's great you feel you still would have lived the same life! Regrets suck!
Replies to "No, they didn't have the same diagnostics then. Dad had ET for about 20 years (he..."
I'm extremely grateful that they have a better diagnostic system now, and even more grateful that in the last 6 years several medications have come out just for Myelofibrosis. I do wish i would have come up to the Mayo, Rochester, many years earlier. tho. (one regret). But my disease (with symptoms) seem to be caught right-on time. I'm 51. In all the research i have been reading, this disease sneaks up on many. I do wonder if it was slowly happening in the background without me knowing.
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I lived so hard and meaningful, i forgot to mention that I didn't really pay attention to my diet. But being that i was (almost) pre-olympic training before highschool, in running (track and cc), and then did more running most of high-school, I was raised to have a really good diet anyways (growing up in So. Cal may have contributed).