← Return to Anyone diagnosed with ET w/Calr?

Discussion
gaildj avatar

Anyone diagnosed with ET w/Calr?

Blood Cancers & Disorders | Last Active: 6 hours ago | Replies (10)

Comment receiving replies
Profile picture for janetbender @janetbender

I was diagnosed with ET / CALR in 2021. Platelet count was 1.1 million and redid the bloodwork bec they thought it might me a lab error. Nope!
Hydrea is hard to adjust to, but eventually there aren’t side effects.
My dose went from 500 mg 7x a week, to 5 and now 3.
Platelets now between 400 -500k. I needed (unrelated) surgery and pain temporarily increased platelet count.
My hemeonc told my neurosurgeon and me not to worry unless the count goes to 700k. It hasn’t.

The Hydrea side effects of foot/leg pain, stomach issues and fatigue greatly lessen with time.
ET followed later by hydrocephalus was a 1-2 punch, but getting a proper diagnosis was the hardest part.
I was afraid docs would label me a hypochondriac until I was properly diagnosed.
It’s hard, but don’t get discouraged and you are your own best healthcare advocate.
Good luck.

Jump to this post


Replies to "I was diagnosed with ET / CALR in 2021. Platelet count was 1.1 million and redid..."

@janetbender Good news that you have such a drop in platelets and also in the dosage of the hydroxy! Also good to know that symptoms will hopefully lessen with time. I am feeling more hopeful and also glad to hear from others who are dealing with my same issues. Thanks for your feedback.