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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)
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@cajunqueen

Hey there! A little update for you all....after taking 500 mg of Hydroxyurea daily for 3 weeks, my platelets came down around 60 points, but it is still in the 780 range, so my Hematologist is having me take 500 mg 6 days a week and 1000 mg once a week (on Saturdays) for 4 weeks and will do labs in November to see where my platelets are again. She will then tweak the meds again, depending on what my body does with the extra dose once a week. Thank you for your comments and health updates and 'medical drama', as Lori stated above! Let's continue posting about our journeys in this season of our lives to help each other with positive vibes and shining His light in all that we do, because He has each and every one of us in the palm of His hands.
Blessings,
Tifnie Queen

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Replies to "Hey there! A little update for you all....after taking 500 mg of Hydroxyurea daily for 3..."
Lori, Volunteer Mentor | @loribmt | Oct 28, 2022

Hi @cajunqueen ~ So happy to hear some good news from you with the drop in platelets! It’s always encouraging when the meds start working. It sounds like you have a great hematologist keeping tabs and following through with your treatment!
You have a strong sense of faith and that’s a driving force in your life…together with your positive outlook. I think positivity is a super power. ☺️

Keep us updated, ok?

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nohrt4me | @nohrt4me | Oct 31, 2022

Hemos seem to be better at HU dosing. Someone in my cancer group years ago was hit with a high dose of HU right off the bat because his platelets were over 1,000. He had leg pains and other distress and ended up in the ER. He was fine as soon as the dose was lowered.

The thinking now seems to be to start patients on a lower dose, maybe 500 mg 3x per week, and increase as needed.

I have CALR mutation. Started HU 5 years ago. Platelets went from a high of 800s to 600s over a year at 500 mg per day. Next year it was upped to 500 mg per day plus an extra dose 3x per week. Stable in the 400s for four years now.

Less fatigue, fewer headaches and visual distortions on the HU. I do yoga and exercise bike (my bike to nowhere) to try to keep circ going. I am 68, with onset at age 55.

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