Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

Per the Mayo Clinic, thrombocytosis is having too many red platelets. What I read says thrombocytopenia is too few. Conditions ending in penia I think refer to a lower amount of something, for example ostopenia in too little bone density. Maybe I am wrong and I am not familiar with Essential Thrombocytopenia, but it is contradictory to me. You write thrombocythemia. Oops just reread and I see spell diff and I do agree with you. It looks like others have misspelled the condition too. Thanks for clarifying.

My last labs came in with 320 platelets. I'm also 70, but no family history of blood cancers. I have a very knowledgeable doctor who counsels and referred me to an oncologist who treated his father. I have RA, osteoporosis and systemic scleroderma that first flared up in 2014. Recently my doc suspected an internal bleed and sent me to a Mayo trained gastrointestinal doc. She did find a hiatal hernia a month ago. 8 cm and angry. So, more meds in the arsenal to hopefully curtail surgery to repair
it. Before then, I had no medical issues. I've been on prednisone daily to keep mobile and relatively pain-free. Getting old sucks, but at this juncture it sure beats the alternative !

Essential thrombocythemia is having too many platelets.

Thrombocytopenia is the term for having too few platelets.

Tongue-twisting, isn't it?

My platelets ran 450-565 for several years. Then, they spiked to 706 on my June bloodwork. That's when my doc started the hydroxyurea. 2 weeks later dropped back to 450, then lowered my dosage to one 500mg once a day.

Isnt essential thrombocytopenia a diagnosis of too few platelets? I dont understand people with high numbers having this diagnosis and treatment.

That's how I take mine, too. Mouth full of water to make a nonstick surface, then throw the cap full of meds in and chug a full glass of water.

Yes, mornings on the porch, where I am right now with my herbs, flowers, tomatoes, bees, and birds! Out here even in winter in my puffy coat cuz love the smell of snow! Free cheer-up gifts from Mother Nature.

I’ve been on Hydroxyurea for 5 mos 500 mg 5 days a week for ETwith positive Jak2 mutation. I was very concerned about taking a chemo pill. In the beginning I did have some headaches, fatigue, and ocassional constipation. Afternoon fatigue is still a side affect, but I plan to start walking to build leg strength. My platelets are now in normal range at 356. After loosing 3 siblings to blood cancer I chose this treatment. Do what is right for you! Trust who you choose to oversee your medical needs. Do your research, this Forum helped me tremendously!! I am 70. I scheduled a conference with my doctor and included my husband and son. Write your list of questions down. Fill your spirit & thoughts with good things. I sit outside in the morning, I love birds and it’s a perfect place for my prayer time. I ‘ll be praying for you.

78 years old here. I was diagnosed with Pre-MPF 2 months ago with platelets at 1.355 million. I was on 2,000 mg Hydroxy for 3 weeks to get them down to 193k. Switched to 1,000 & they zoomed up to 591k quickly.

Wow seems like a really high dose to start. I was on HU for over 5 years, started out at 500 mg 3X/wk. Over time platelets would creep up, so upped the dose until 2000 mg 3 days a week and 1500 the other 4. Never had issues until all off a sudden all parameters cratered (plt, rbc, wbc) now on Jakafi 10 mg 2X / d.

As you can see from the posts, very few have the same journey, so monitor yourself and trust your doc (second opinions are also highly recommended especially if not an MPN specialist), I've been lucky to have always had a great doc - only switched to one in an R&D institution to have opportunities to participate in clinical trials.
Best of luck.