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Anyone diagnosed with Essential Thrombocythemia (ET) with CALR?
Blood Cancers & Disorders | Last Active: Apr 28 4:48am | Replies (32)Comment receiving replies
I have ET CALR9 and just started on Hydrea 500 mg twice a day. I also take a low dose aspirin. My platelet count was 822. I started Hydrea April 1 and my count today is 623. Since I just started the medication, I will see my hemo/oncologist in about two weeks as we adjust my dosage. I had no side effects from the medication until today. I am suddenly exhausted. Does this sound normal? I am 74 and exercise 3 to 4 days a week, lifting, stretching, and cardio. I have always exercised and don’t want to give that up. I just wonder if this overwhelming fatigue is from the Hydrea and if it will go away after time passes. Should I keep exercising while I feel so tired? Thanks for any insight!
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@lynns51
Each of us experiences ET and HU differently. So please understand, this is just my personal perspective.
It's ET itself that exhausts us. Fatigue is the most reported symptom. While my platelet count was highest, I couldn't climb a flight of stairs without stopping halfway.
As HU brought down my count, most of my energy returned. It took a while! Please note, while HU has quickly reduced your count, at 623 you are still WAY above the normal range. Your body is still burning so much energy overproducing platelets.
My advice would be to keep exercising. If you can't do your full workout, do half of it. Don't attempt any marathons, but enjoy that stroll around the park.
Keeping our hearts pumping and our blood circulating is good in itself. And there's the bonus of mood-boosting endorphins too!
To better days ahead.