I am 29 years old and I have been diagnosed recently with ET, CALR+. It was a really hard period the last months, as I was trying to cope with all the tests, outcomes and struggling to understand my condition.
Looking back to my blood tests it seems that I might have it for at least 3 years ( when initially my platelets begin to rise - around 600). The routine blood test that I have done this year, showed a value of 850. During all the stressing investigations it rose to ~1100. Before having the result of CALR, being only Jack2 negative, my doctor put me on anagralide. After 10 days my platelets got down to 700.
My biopsy showed an increase number of megakaryocytes and also a mild fibrosis (MF1). My doctor suggest to have a second examination of my biopsy. This is the thing that scare me the most ... the idea of progressing to PMF. In two weeks I am scheduled to run another blood test to see the medication efficiency. I am looking forward to see what change in my treatment bring the CALR+ discovery. I am not sure there is other treatment (interferon) available in my country, other than hydroxyurea and anagrelide.
All the best