ET/Calr Platelet Count Down, finally

Posted by dd1949 @dd1949, Jul 23 9:59pm

I am 76-years-old. On May 16, 2025 I was diagnosed with ET, with an initial platelet count of 849K. By May 30th I knew I did not have ET/Jak. My first appt with my hematologist was on July 3, 2025, with my next platelet count on July 23, 2025 at 987K. I began on 500mg/day of HU and gradually moved up to 1000mg/day. My body and spirit have been open to, welcoming of, and have received my daily medication as my friend, my partner in my health and getting healthier; at least, at less of a risk to my life from ET's presence. Today, July 23, 2026, my platelet broke the 400K barrier at 385K. I write to share my elation, even though it took 13 months to get to this count. My body got there! Yeah. I want to share thanks and joy to this support group from whom I have learned much, been strengthened and encouraged, and learned I have companions on my journey. Thank you. I hope all of you find strength, peace, a little healing (or a lot), and well-being on your respective journeys. God bless you!

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janemc | @janemc | Jul 24 6:38am

Three cheers for you, dd1949!!!

This is really something to celebrate!

Thank you for sharing your story.

You remind us all to hold on -- better days are coming!

nohrt4me (Jean) | @nohrt4me | Jul 24 7:49am

It took a year and a couple adjustments in HU for me to get into the 400s. I was 64 and also CALR. 72 now and been stable in 400s for 8 years.

I knew an ET patient who celebrated every April 27. That was the date in 1995 when the New England Journal of Medicine published the first study showing the effectiveness of HU for ET patients. You can read it here: https://www.nejm.org/doi/full/10.1056/NEJM199504273321704

gailsh | @gailsh | Jul 24 8:52am

Glad to hear that! I'm always looking for foods to assist with platelet lowering. So far I found walnuts and cranberry juice (small quantities) in addition to hydroxyurea. Thank you for sharing. 😀

dd1949 | @dd1949 | Jul 24 9:19am

In reply to @nohrt4me "It took a year and a couple adjustments in HU for me to get into the..." + (show)

@nohrt4me

I'm so very glad to hear you've been stable for 8 years. You have given me strength and confidence for what is possible for me. May you continue to be blessed on your journey!

lynnebgraham | @lynnebgraham | Jul 25 3:04am

In reply to @nohrt4me "It took a year and a couple adjustments in HU for me to get into the..." + (show)

@nohrt4me Hi Jean, for the first time in 18 months my platelets are within normal range. 243 so Anagrelide seems to be doing its job. Happy with that.

janemc | @janemc | Jul 25 6:58am

In reply to @lynnebgraham "@nohrt4me Hi Jean, for the first time in 18 months my platelets are within normal range...." + (show)

@lynnebgraham

HOORAY, lynnebgraham! After all you've been through lately, you so deserve this!

Thank you for sharing your success with anarelide,

Now it's time to celebrate!

nohrt4me (Jean) | @nohrt4me | Jul 25 7:55am

In reply to @lynnebgraham "@nohrt4me Hi Jean, for the first time in 18 months my platelets are within normal range...." + (show)

@lynnebgraham That's great news! Must feel good to have surgery behind you and platelets going the right way?

lynnebgraham | @lynnebgraham | Jul 25 5:34pm

In reply to @nohrt4me "@lynnebgraham That's great news! Must feel good to have surgery behind you and platelets going the..." + (show)

@nohrt4me Yes it really does feel good. Always a lot of anxiety before any surgery. Fingers crossed for you, that when your having your surgery, anxiety levels will be low. You have researched as much as you can and have confidence in your surgeon. All will be well, its just the getting there and having it done. Youve got this.

lynnebgraham | @lynnebgraham | Jul 25 5:39pm

In reply to @janemc "@lynnebgraham HOORAY, lynnebgraham! After all you've been through lately, you so deserve this! Thank you for..." + (show)

@janemc It is such a great feeling to finally have platelets in the normal range. Hope you are going strong.

jodyjazz | @jodyjazz | Jul 26 7:35am

In reply to @lynnebgraham "@nohrt4me Hi Jean, for the first time in 18 months my platelets are within normal range...." + (show)

@lynnebgraham
Good for you, i know that is a huge relief, enjoy your new health!!

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