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

The best comment was to listen and ask your trusted doc. Not chats. Some people will over or under react. Everybodies situation can be different. I was on HU for 5 years with no issues (from taking or from handling, etc); have since transitioned to Jakafi. I'm fortunate to have really good docs in my area and am now with one of the leading ones in the field.
Educate yourself, there are lots of good resources MPN Research Foundation, Voices of MPN, Leukemia and Lymphoma Society, etc
Good luck with your journey and don't live in fear, find things to give you motivation - mine are my dogs, hiking, skiing, and of course faith and family

You might want to do your homework before saying such things. When you first get the capsules and READ the accompanying literature, it spells out these things. Clearly, you missed that step and THAT is what would be known as nonsense.

Also the Mayo Clinic’s own website cautions to wear disposable gloves when handling Hydrea, but what would they know, right?

My friend has the same thing and her doctor will not prescribe HU until her numbers reach 800-900.
Doctor said the pill can give you leukemia.

Hello, anavleek. An ET diagnosis is really scary, especially since you'd probably never realized such whacky things can happen to our blood.

This forum is where you can learn all about ET and HU. Just use the search bar at the top of this page to find discussions on any question you may have.

As you will see, some people do have side effects from HU.

But for most of us, it's magic.

HU has been used for decades, not just for ET and other blood cancers, but also for sickle cell anemia and some mouth and throat cancers. It is relatively inexpensive and it's widely available.

Did I want to take a chemo drug? No! I was scared to death to take that first capsule.

But as HU began bringing down my platelet count, and giving me my energy back, I started realizing how lucky we are to have a drug that works for us.

When I was diagnosed, my oncologist told me that not only was ET making me exhausted, it was depleting my bone marrow. You have to take this diagnosis seriously. No supplement or diet change will address the mutations that trigger ET. But HU works.

I like to take my HU and aspirin with milk, and I never take meds on an empty stomach.

Please let us know how you're doing. You're among friend here.

anavleek, I hope it's helping you to hear from us! We're living proof that HU works.

Your pharmacist may not know much about HU, because you may be the first person who's ever asked for it. MPNs are really rare. In my little town, neither the pharmacist nor my primary care physician knows anything about ET or HU.

Take your capsule in the way that YOU are most comfortable with. You've gotten some great suggestions already.

I guess I'm a risk-taker! While I always fill my mouth with milk before popping in the capsule, I do take the capsule out of the bottle with my ungloved hands. I've been doing this for 18 months and so far, my fingertips seem fine -- no glowing in the dark.

Hi Ana, I have been swallowing my pill the same way for a few years and so far no mouth sores! Eileen

You might want to do your homework before saying such things. When you first get the capsules and READ the accompanying literature, it spells out these things. Clearly, you missed that step and THAT is what would be known as nonsense.

Also the Mayo Clinic’s own website cautions to wear disposable gloves when handling Hydrea, but what would they know, right?

If the pill was dangerous to touch, there would be directions given on how to handle it or it wouldn’t be in pill form. This is just nonsense.