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How did you make the final decision to begin HU protocol for ET?

Blood Cancers & Disorders | Last Active: Jan 22, 2023 | Replies (75)
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@hdollar1

I was diagnosed with ET at 27. I had been having unusual, extensive bruising and severe fatigue, my doctor did labs and referred to hematology for high platelets. I am JAK2 positive, and platelets climbed to 700. I had a bone marrow biopsy which only showed ET. I was started on 1 baby aspirin a day and have labs every 3 months. My hematologist followed me through my last pregnancy, which was the first pregnancy with ET he had ever managed! It seems to be very rare to be diagnosed as young as I was. I was increased to 2 baby aspirin a day immediately after delivery, and have kept to that regimen since. I am now 31 and have had no complications regarding the ET. My hematologist plans to start HU when my platelets hit 1000. Luckily in my pregnancy my platelets went to a normal level (pregnancy naturally lowers platelets) and they have stayed around 400 since. No more spikes yet. I plan on putting off the HU as long as possible because of the side effects

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erikaerika | @erikaerika | Jan 12, 2023

It's so encouraging to hear your story. I am 40 years old & was recently diagnosed. I have the Jack2 mutation. This whole experience has been terrifying for me. I'm currently on 2 baby aspirin & get blood work done every 3 months. My blood count is currently at 615. I've had 2 miscarriages prior to this diagnosis & doctors don't know if they were caused by the TB. I want another baby but I'm scared. I've talked to a high risk OBGYN & they don't seem to be very encouraging. My hemotologist thinks it's possible to do it. Although she thinks the pregnancy may cause a spike in blood count. Hearing your story gives me some hope that it's possible. I am however in my 40s so that might change things for me. Thank you for sharing.

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