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Starting 17th year with ET. What's ahead?
Blood Cancers & Disorders | Last Active: Jan 19 4:08pm | Replies (52)Comment receiving replies
I just learned of my ET diagnosis and need for hydra and aspirin for life yesterday. I was not expecting all this to come from a routine blood test! My platelets were retested and down about 25% from first lab taking nothing, but I guess they are still too high so I am supposed to get treatment with those meds now. I am not looking forward to it. How does it make you feel? I read someone had to give up bike riding and that would be terrible as I bike ride with Mr daughter and sister at least five times per week. I don’t want to give that up. I had no diagnosed conditions before this and feel just fine, but I am 65 now.
Replies to "I just learned of my ET diagnosis and need for hydra and aspirin for life yesterday...."
I had to give up bike riding due to dizziness. I don't know if this is related to ET. I have had ET x 16 years and on hydroxyurea x 6 years. I am 70. If you aren' t dizzy, bike riding is good for your mental outlook and your circulation. Enjoy your cycling!
My wife was diagnosed with ET/Jak2 in the summer of 2024. She's been on Hydrea since then. 1000mg 3 times /week and 500mg 4 days a week. No side affects at all. She's has run many marathons and completed many triathlons in her lifetime but is now retired from those competitions. However, she is still very active at the age of 72. Indoor cycling for now (we live in New England), hiking, aerobic classes and more with no dizziness at all. We'll be on our bikes cycling again as soon as the winter is over. She was biking in the fall with no issues last year. At least for her, the Hydrea has not slowed her down or affected her life at all! Yay!
Good luck to you,
Steve
I've been on HU for 2 years, 500 mg, 4x week, baby aspirin 2x day, and iron supplements 1x day. I have some fatigue so I don't go out every day, but overall it hasn't changed what I do. I keep busy with my activities and my grandchildren. I do avoid the sun as HU can put us at a higher risk for skin cancer. Live your life, exercise, eat healthy, and smile. I was diagnosed in 2023, age 69 with ET/Jak2, platelets 800K. Now, platelets are stable at 520-550K. Take care!
P.S. Here I am at Christmas 2024 with 2 of my 5 grands. Living my best life at 71!
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Welcome to Connect, @1pearl. That diagnosis out of the blue had to really hit you like a ton of bricks! Having a platelet level considerably higher than normal has the potential for risk of stroke or blood clots. Hydroxyurea is a medication that is used by people whose bone marrow is producing too many of a specific type of blood cells. In your case it is too many platelets. The low dose aspirin, taken daily, acts as a blood thinner to keep platelets from sticking together and forming blood clots.
You mentioned the level dropped 25% from the first labs.
If you wouldn’t mind sharing a little more about your experience, I’m curious about how high was your first reading? Are you seeing a hematologist for your diagnosis?
Were you ill with a virus or other infection in the weeks before your first set of labs?
How much time was between the first and 2nd set of labs?