1pearl, wishing you well with your bone marrow biopsy. Learning more about your condition is so important.

I feel the worse part of ET is the lack of information. Nobody fully understands this cancer. Layer on our doctors' inexperience because ET is so rare, and it gets really frustrating.

Regarding the possible progression to myelofibrosis (MR): this is part of having ET, not a side effect of taking HU. The vast majority of ETrs do NOT develop MF. But some do.

I've stumbled on an interesting Lancet article from January 2024. The study was, what factors play into progression from ET to MF? The purpose was to create a tool that would help identify those most at risk.

I'm no statistician, so much of this was way over my head. But one paragraph really jumped out at me.

"ET is a chronic haematological disorder that often has minimal impact on the overall quality of life. As a result, patients may underestimate the importance of regular follow-up and may be hesitant to undergo bone marrow examinations. Performing risk assessments during the initial diagnosis helps identify patients who require close monitoring, appropriate counselling, intensified follow-up, and regular evaluation, particularly those at high risk. This approach allows for prompt adjustments to treatment strategies, which play a crucial role in slowing disease progression and prolonging patient survival."

So, learning as much as you can about your individual situation is the best way forward.

By the way, the study found ET patients who smoke have a higher probability of progressing to MF. Another great reason to stop smoking!