Hi from Australia. I'm new to the group. I'm very happy to have found this group given the rarity of the condition. It's been interesting to read everyone's stories and information about ET & Jak2. My platelets have been slowly rising since 2021 after my covid shot. Whether that's relevant or not, who knows but it doesn't change the situation. I'm a 60 year old female.
My platelet count was 870 a month ago. My haematologist has said he will start me on HU when I reach 1000. I've been taking Asprin 100mg daily for 3 months now. I also have family history of heart disease so unfortunately was already at risk of blood clots and stroke. Better to at least I know about it, I guess. I think initially my platelets went up and down but the trend over the last 18 months has been steadily on the rise. I don't see him again until end of February so I'm resigned to the fact that I'll be given HU at that time.
Some of the side effects sound scary but I guess everyone is different and I don't know what dose I will be prescribed so I'm trying not to think about it too much and I'll have to wait and see. I have had gut issues my whole life and do and take various things to control it to an extent, so I'm hoping my gut issues won't get any worse once I start HU.
It's comforting to know I'm not the only one dealing with this diagnosis and there is a group I can go to for information and any questions I might have once I start HU. Strangely, I only just found out ET was classed as a blood cancer. My GP and Haematologist didn't mention it so it was a bit of a shock to read it. I think my haematologist is in denial and he said he doesn't necessarily think I'll reach 1000! Given the trend, I think that's very optimistic and given my platelets are pretty high, it will still need addressing.
Anyway, thanks for listening.