How did you make the final decision to begin HU protocol for ET?
Hi, I continue to research and learn from others with ET. I am 57, and diagnosed this past year. Jak2 positive, ET. I may have suffered a thrombotic event post-knee surgery in 2021, therefore my MNP specialist ( Hematologist) is recommending I being Hydroxyurea ( HU). I am so hesitant to take it, for many reasons, and trying to connect with others' decision-making process. My doctor did a fellowship with Mayo Clinic, however, I am still considering going to the Mayo clinic for a second opinion. Mainly for a timeline of when I truly HAVE to being HU protocol to reduce risks of stroke, heart attack, and clots. My counts are between 570-680 platelets. I do suffer from headaches, very cold hands, and feet, and tingling in my calves ( I am told this is not related, but I can feel my calf muscles twitching almost all the time. I get fatigued, but I remain very determined to keep healthy movement. I cycle 5 days a week and hike when the weather allows. Mostly, I would like to hear others' experiences from diagnosis to when they started on HU, and what ultimately helped YOU cross the line to treatment. Thank you,
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Wow… I love how you put things. "Dealing" not healing. When I see someone say they have numbers at 1 million, and I have numbers in the 570-630 range, It makes me wonder how one goes from the hundreds to the millions so fast. I guess it is something with this disease that I am still learning. It seems that you facing numbers now in the millions, you are still doing well physically? That is encouraging. I do want to note that from the many sites I have been on to research and learn from other ET-ers,.. the symptomology of visual headaches, fatigue, and rare dizziness, is something not only I have experienced, but so have so many others with ET. I don't think it is a coincidence. I am 57, I am very healthy otherwise and very active. I am hoping that when I start HU, I can do a very low dosing… like a few days a week, and find myself with lower numbers. Thanks for your insights.
P.S., I thought that anagrelide might be a better drug for me initially. However, I have a heart valve problem. I asked my cardiologist to assess both HU and anagrelide. He nixed anagrelide because it can cause arrhythmias and palpitations. Anybody with co-morbidities would probably do well to consult with their other docs as they're deciding on treatment.
Right now labs are every 8 weeks. I expect to be down to normal level at my next testing in a couple if weeks. So far, I've been trending about four months on and four months off the Hydrea. I'm hoping that the ulcer chances are reduced. I didn't mention that the other patient my hematologist has with this same diagnosis has been on this regimen for 20 years plus.
You raise an excellent point, about an injury. I’ve been concerned with this as well. I used to play pickleball, but because I’m … less than graceful 😏, I’ve had numerous falls with substantial bruising. So I stopped playing. Your cycling must give you similar concerns. So it’s the bleeding concern due to the aspirin, but also-and even more concerning-is having a clot form because of a bruise where perhaps the aspirin wasn’t quite adequate enough in preventing a clot. A conundrum, for sure…best of luck to you.
The way I understsnd it, if you are 570 to 630 range in reality then you are 570,000 to 630,000. They do not add the zeroes on the lab reports.
I looked it up. If your lab says 570-630 range…then you are actually 570,000-630,000.
A high platelet count is 400,000 (400 x 10 9L). A higher number of platelets is called thrombocytosis. It means your body is making too many platelets.
My LabCorp results show a range range 150-450 x.10E3/ul is normal.
When I was diagnosed (ET CALR and AVWD) in July this year my platelets were just shy of 2900!! I take 1500mg of Hydrea daily and I’m happy that my platelets are down just under 1000. I’m 53 and very active so the exhaustion and fatigue (not to mention nausea and GI issues from HU) …. It’s rough. Staying positive
Wow, koryw, you get the crown! And you brought the platelets down by 2/3! Nicely done. And may those side effects pass soon!
It is a big decision to start on hydroxyurea and all of us have a different story. I was first diagnosed with essential thrombocythemia when I was 45 years old. As I had no symptoms and was doing well, the doctor elected to wait until either my platelets reached 1 million or until I had symptoms, to begin taking hydroxyuria (Hydrea). When my platelets reached 1 million, I began to have visual problems, so I began the hydrea when I was 50 years old. I went in for weekly blood tests as we were trying to figure out which dosage of Hydrea worked best for me. I am really lucky as I take 500 mg five days a week and have been on this regimen for 16 years now without any problems! As years went by and my platelets continued to be within normal range, I now only see the oncologist once a year as I have been doing so well. Best of luck to you!
Good for you. I will be 80 next week and have been on Hydroxyurea for 13 years. Six months ago Anagrelide was added. Blood tests are done once a month. I feel good and hope my cancer doctor will continue to balance everything in my blood.