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@treeore

Well this is my gang, here. I was just diagnosed (age 64, now one day away from Medicare) with ET/JAK2 after having high platelets since my 30s, with no decisive side effects. (Aside from Visual Migraines which they say COULD be symptoms.) I was always in the 400s to 600s platelet count until a year ago when the numbers climbed and set off other blood counts. So after just monitoring for decades, I was sent to hema/oncology for BMB, etc. (Quite a different attitude these days, as I see people alarmed at a 500 number!) I'm near the 1 million number now, and am guessing I am having symptoms. It's hard to tell if head aches, tiredness and rare dizziness are due to extreme insomnia, though, and that will likely only resolve when I make up my mind about treatment. I am back to oncology next week. If the numbers have climbed again, I don't see much hope for avoiding HU, as flawed an approach to healing as it is. "Dealing," not healing, is what it seems to do. Well, I may be ready to deal. I'm talking to my acupuncturist tomorrow, and in late December with a Mayo doctor. In the meantime, I'm just trying to learn about the disease and ways of coping emotionally and physically. Seems a shame to let all my good habits and confidence crumble in the face of this stupid mutation. My Best to all ET-ers here.

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Replies to "Well this is my gang, here. I was just diagnosed (age 64, now one day away..."

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.

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