Still Dancing

[Chris3875]

In the last month platelets have dropped from 1900 to 1605 and today down to 1463 - still a long way to go I know (over 1000) but at last things are moving in the right direction. 1000mg of Hu 4 days a week and 500mg 3 days - plus low dose aspirin. ET with Jak2 negative and CALR negative.

[AndyT]

Great news Chris - well done and long may it continue..!

[Lainy1]

Well done that's brilliant news. You must be over the moon. My platelets are also down this week from 1450 was on 500mg HU daily. Platelets now 940 and HU doubled, I'm now on 1000mg daily and finding a few side effects difficult to deal with.

Hope you are well and platelets continue to drop 😊

[Chris3875 in reply to Lainy1]

Thanks Lainy - Ted and I are off to Darwin for a short break in just under 2 weeks - it will be pretty hot there (even though it is winter) so hoping that will not cause me any issues. Am stocked up on 50+ sunscreen and long sleeved cotton shirts.

[shiftzz]

My platelets at worst were 1143 now 218, what was your HCT numbers.. well done by the way.

[Chris3875 in reply to shiftzz]

My platelets were just over 1900 at worst and was looking up HCT on blood results - normal seems to be somewhere between 0.37 and 0.47 L/L - mine have been pretty steady 0.41 - 0.43 L/L so am thinking that is pretty good. White cells have remained within "normal" limits also.

[shiftzz in reply to Chris3875]

That's good, my hct was at my highest 0.612. It was horrendous

[Chris3875 in reply to shiftzz]

What a strange disease this is - funny how you never hear of it until you "get" it. I am 71 and feel as fit as a flea and only went to the Dr initially because I had a spate of blood noses. Expected to have the vein in my nose cauterised and sent on my way - what a surprise !!