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Essential Thrombocythemia (ET): foods, diet, nutrition?
Blood Cancers & Disorders | Last Active: Sep 15 8:03am | Replies (112)Comment receiving replies
yes, i have the calr and axl mutations. i wish the Naval doctors had told me that 25 years ago. Tho, i probably would have lived the same life. (in 1998, im wondering if they even had the same diagnosis technology and the dipps system)?
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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!