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

There's a lot of good info here - thanks to all who have shared. My first visit with the Oncologist resulted in a diagnosis of Essential (hemorrhagic) Thrombocythemia and he started me on HU (one 500-mg pill a day to start). I will have another blood test in a week and will likely step up to 2/day. Good to learn that it can be monitored and kept under control.

Are you taking any meds yet?

If your oncologist advises a low-dose aspirin, purchase it in coated form. Low-dose aspirin makes our platelet-heavy blood more fluid, protecting us from clots and strokes.

If your oncologist advises hydroxyurea (HU), please be aware that starting at a low dose may be helpful. At first, I took just one 500-mg capsule each week. Then the dose was gradually increased. I believe this is why I've never suffered any ill effects from HU.

You can wander through the threads and learn so much. You can also use the search bar at the top to focus your search.

Having your questions ready for your appointment is crucial, because oncologists are busy people.

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.

Essential thrombocythemia is having too many platelets.

Thrombocytopenia is the term for having too few platelets.

Tongue-twisting, isn't it?

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.

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

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

I’ve been taking it for years now. The pharmacist never mentioned I should not touch the capsules and neither did my hematologist. But, luckily I can read! Before taking the first dose I read the precautions and knew I shouldn’t touch! So, I “poured” two capsules, my dose, into the cap and toss them into my mouth followed immediately by water. I can’t be bothered by putting on gloves. I call them my “poison pills”!
No mouth sores.