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DiscussionHow did you make the final decision to begin HU protocol for ET?
Blood Cancers & Disorders | Last Active: Jan 22, 2023 | Replies (75)Comment receiving replies
Replies to "Well this is my gang, here. I was just diagnosed (age 64, now one day away..."
When I was diagnosed (ET CALR and AVWD) in July this year my platelets were just shy of 2900!! I take 1500mg of Hydrea daily and I’m happy that my platelets are down just under 1000. I’m 53 and very active so the exhaustion and fatigue (not to mention nausea and GI issues from HU) …. It’s rough. Staying positive
Wow... I love how you put things. "Dealing" not healing. When I see someone say they have numbers at 1 million, and I have numbers in the 570-630 range, It makes me wonder how one goes from the hundreds to the millions so fast. I guess it is something with this disease that I am still learning. It seems that you facing numbers now in the millions, you are still doing well physically? That is encouraging. I do want to note that from the many sites I have been on to research and learn from other ET-ers,.. the symptomology of visual headaches, fatigue, and rare dizziness, is something not only I have experienced, but so have so many others with ET. I don't think it is a coincidence. I am 57, I am very healthy otherwise and very active. I am hoping that when I start HU, I can do a very low dosing... like a few days a week, and find myself with lower numbers. Thanks for your insights.