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

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.

I started taking HU and baby aspirin when my platelet count was 792, and over the course of a few weeks my count dropped to 192-202 and has been holding there for 6 months. Yes, there are a lot of potential side effects, as there are with any prescription medication, but don't let the potential side effects scare you off from what can be live-saving treatment. I take my HU with meals (I take 500 mg twice a day, 4 days a week - initial treatment was twice a day, 7 days a week) and my only side effect was headaches early-on. As my body adjusted and the dose was decreased, the headaches disappeared and I have had no other problems.

Your high platelet counts can cause cancer, as well. The longer you wait to get it under control, the more increased chance you have of the issue affecting your bone marrow and then you are at a whole new level of concern.

Hydrea is the most common and well-tolerated of all drugs. You may or may not have side effects. For instance, people on this thread will say they had no hair loss, but I did. Fortunately, I started with a thick head of hair, so while it has thinned, it is now really manageable, as opposed to before taking HU.

It's different for everyone. Do less reading about what people say and listen to your doctor. You can go down a rabbit hole by "investigating on your web".

This site is solid and reputable and would be a wonderful resource for you.

I started with 730 platelet count and it went down in one month to 420, then 370 the next month, then back up to 430. This is normal. Fluctuations happen but the key is to get it under 450. NOTE: I also had three pints of blood taken out of me that first 6 weeks (one per visit in phlebotomy) and it helped speed things along. This is a normal thing for the doctor to suggest, as well.

I would highly recommend it. Wear sunscreen ALWAYS, as the drug will make you more susceptible to skin cancers. Stay out of the sun whenever possible!

DRINK plenty of WATER throughout the day. Must stay hydrated on this medicine. I take it at night so any short-term effects will be happening while you sleep and I take it this way:

Tap the capsule into the cap of the prescription bottle. DO NOT TOUCH the capsule as it is highly toxic. If it touches your skin, place the capsule aside and scrub your hands good, 3 times, as it is imperative that any residue be removed from your skin. If you mistakenly put it on the counter, scrub that area vigorously, as well.

NEXT, put a mouthful of water into your mouth and keep it there. Tilt your head back and drop the capsule from the bottle cap into your mouth ((do NOT touch the capsule) and swallow the water and capsule at the same time.

Why take it like this? Because this capsule, when it touches the sensitive inside skin of your mouth will cause sores and ulcerations. I've been on HU for 7 months and never had an issue, because I've always taken it this way. The water keeps the capsule from sitting on your tongue or resting in your mouth.

Good luck and feel free to write with any other questions. People on this site are so very helpful.

Ann

Thank you so much for your input. Someone else here said not to touch the pill because it is highly toxic, that’s a bit scary. It’s a bit strange my pharmacist didn’t even mention that to me. I am a bit scared to take it, but it seems that is the only treatment for it with my age , 61 . Thanks again any input is much appreciated! Ana

Thank you so much for your input and encouragement! I had no idea about how toxic the pill is . My pharmacist did not mention that to me when I picked it up. My genetic testing came back with the CALR positive, the other two were negative.

Thank you so much for input and your support!
It is scary and weird! I guess I have really no other choice but to start taking it. I have a friend of mine that has the same thing and her doctor told her to start at a certain number of platelets.
Also, some mentioned HU is very toxic and not to touch it and this person filled their mouth with water then throws in the pill and swallows it, that way the pill doesn’t touch the inside skin of the mouth ?!? That sounds so scary . Thanks again Ana

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

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.

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.

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?