Following a BMB, I was diagnosed with ET in 2012 and treated with daily varying doses of chemotherapy hydroxyurea and aspirin. Following a change from hydroxy to pegasus interferon 18 months ago, which I had a horrible reaction to, I was taken off all chemo and told that they would keep an eye on my red cell count every six months.
Today, following a further BMB, I have been told that I do not have ET. No explanation given other than tests today are more conclusive than 14 years ago. I am obviously concerned about the long term effects of 13 years of chemo and why on earth I was diagnosed in the first place.
I guess I’d just like to know if this outcome is common or have I just been very unlucky with the level of care from the outset.
