@birgitr With your lab results showing a platelet decrease already, that should be an encouraging indication that the HU is working well to meet the goal of 350. Like I mentioned, often doctors will tweak dosages higher or lower to get to a balance of ‘just right’ and not taking more than necessary. So hang in there!

You wanted to know my story…well, I’m one of the mentors in the Blood cancer & disorders support group. Though I didn’t have ET, over the last 7 years, my extensive experience with a very aggressive form of leukemia and the subsequent bone marrow transplant fueled my deep interest in blood cancers. I know what it’s like to get hit out of the blue with a blood/bone marrow related issue! At the time, I didn’t know a soul who’d gone through a similar situation. It’s scary to feel alone. So I’m here sharing information that I’ve gleaned along the way to support others and to offer hope.

What do I make out of this? From my experience with other members diagnosed with ET, it has become my understating that treatment with HU is first-line treatment, manages the condition effectively, generally with few side effects. Some instances, if HU isn’t sufficient, there are other drugs available working through different biological mechanisms. From conversations with others in Connect, most people being treated for their ET go on to live productive lives.

I know this is all so new to you and no one likes the prospect of taking meds long term. If it helps, look at this now as more of a chronic condition such as high blood pressure that you can take meds for and go about your life. Your hematologist will monitor you through routine blood work and if anything changes over the years, then there may be a change in treatment as well. It’s good to learn about your condition but try not to let it define you. ☺️