ET Calr type 1

Hello AR6,

Im not familiar with ET Cair type 1 but “fit and healthy” is where to hang your hat.  I was diagnosed with Myelofibrosis. Like your husband it was high platelets that triggered the further tests and bone marrow biopsy. At first I could think of nothing else but I was “fit and healthy” and determined to stay that way. Like your husband there was a mixed recommendations on aspirin from two doctors so I take a low dose aspirin four days a week instead of daily.  My platelets continue to slowly rise with every test but have not reached the level that will activate chemo.

A year and half has now past, I still feel well and know that I am in “watchful wait”. I have accepted that I have this disease but it does not occupy my thoughts as It did in the beginning and I continue with my life as before.

best wishes,

Naugus.

Hello thanks for replying. How long have you had MF for and which mutation do you have? Yes absolutely fit and healthy is the way to go my husband has stated a Mediterranean diet. 

• You are most welcome AR6, I hope it helps. I was diagnosed in January 2021 and tested positive for the jak2 mutation but my platelets had been rising for about five years previously.  I eat a mostly vegetable diet and wherever possible follow the macrobiotic rule of “local and in season” and avoid processed foods. 
  Along with exercise and a determination not to go gently keeps me chugging along.
  
  
• All the best,
• naugus

Thank you and take care of yourself