1. < Blood Cancers & Disorders

New to Hydrea for ET

Posted by mfeley @mfeley, Feb 22 5:24pm

I am a 73 year old very active woman who was recently diagnosed with Essential Thrombocythemia by having a high blood platelet in a CBC and then a bone marrow biopsy that confirmed the diagnosis with a CALr gene. I have no symptoms and am on no medications for anything else except for a yearly infusion of Reclast for the old bones. I run most days of the week and work out at the gym.
My oncologist hematologist says I will start on 500mg of Hydrea when I get back from my monthlong trip to sunny Costa Rica. Right now I’m just taking a baby aspirin. I’m not so afraid of the cancer as I am the treatment. I can overcome a lot of things but one I can’t is the fear of losing my hair. I’m just going to say this is all about vanity. I haven’t read much on this forum about this possible side effect. I’m looking for reassurance that this is a rare occurrence. I hope you can help. Thank you.

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lyd0218 | @lyd0218 | Jun 4 8:40pm
In reply to @circawdm "Hi, You asked what you or your doctor needs to know regarding being at a higher..." + (show)
@circawdm

Hi,

You asked what you or your doctor needs to know regarding being at a higher risk of bleeding with ET.

Patients with ET are at increased risk of bleeding, especially when platelet counts are extremely high (over 1- 1.5 million). This is because the excessive platelets can lead to acquired von Willebrand disease, where your platelets consume and degrade von Willebrand factor, a protein essential for blood clotting. Other factors that may increase your bleeding risk include a history of bleeding episodes or a history of significant bleeding.

This assumes you're not taking real blood thinners for another condition, such as A-Fib. Also, having anemia can increase your risk of bleeding. Anemia, particularly iron deficiency anemia, can lead to more frequent and heavier bleeding, especially in women, and increase the risk of bleeding events overall.

But your doctor monitors all these things. That's why it is vital to get regular blood tests (CBC with diff and CMP also to check more things). If you have a wallet card that says you have ET and that you take HU (or whatever drug you have for the ET), and also if you are on blood thinners or chronic anemia.

The first thing ER docs will check if you are unconscious are your blood tests, or if you are conscious you tell them to look at your Medical ID card (which can be made up by several companies on Amazon and they are laminated and very nice to have, since you can put your medical dianoses on them and also your doctors names and phone numbers! For $15. or so, I think they are excellent protection and "essential" for anyone with ET or any other MPN. I hope this helps you.

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That is good information on getting a medical card. My daughter suggested I put it In my phone under emergency contact. I did get the info for the bone marrow biopsy today. It won’t be until June 24, but glad to know I will be sedated. They said plan to be there up to 4 hours with 2 of that afterwards before they will release me. My new doc yesterday had so many tubes of blood drawn and I’ve seen so many results already coming back in my portal. I was disappointed to see that my platelets had jumped up more than they were when this all got started back in April. I’d hoped they were going down with just the baby aspirin. Wishful thinking 💭

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leene808 | @leene808 | Jun 6 1:09am

Aloha.. I have been taking Hydroxyurea 500mg daily for over 20 years. I still have my hair. It has worked well for me until recently. My condition has transitioned to P.V. so I am starting to take Besremi (Interferon) shots in about a month. I also take a Biotin supplement for my hair growth and it has really helped. I would rather stay on E.T. as a diagnosis, rather than move to Polycythemia Vera. Its a new chapter. I was diagnosed at 44 and tried anagrelide, but went back to Hydrea and its been 33 years of fighting to keep myself healthy.. and keep my hair. Well Wishes

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1 reply
lyd0218 | @lyd0218 | Jun 7 9:25pm
In reply to @mfeley "Thank you for sharing that and it is encouraging. I’ll find out my reaction to the..." + (show)
@mfeley

Thank you for sharing that and it is encouraging. I’ll find out my reaction to the drug when I start next week. I hope it’s as positive as what it was for your wife.

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If you still read this group I’m curious how it’s been for you with HU? I start mine on the 25th.

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1 reply
eileen11108 | @eileen11108 | Jun 8 6:31am

Hi @lyd0218
I am 81 and have ET JAK2 mutation, I started taking HU 500 mg daily in 2022. I had a few lightheaded feelings, fatigue, and headaches. Then my hematologist changed me to every other day and it was much improved. I found later that taking it immediately after eating works better for me. It is very important to drink 64 ounces of fluids daily to rid any toxic effect of HU.

Best wishes, Eileen

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1 reply
mfeley | @mfeley | Jun 8 8:21am
In reply to @lyd0218 "If you still read this group I’m curious how it’s been for you with HU? I..." + (show)
@lyd0218

If you still read this group I’m curious how it’s been for you with HU? I start mine on the 25th.

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My best reaction to the drug Hydrea is that it has now reduced my platelets to within the normal range in just 3 months. I started out taking 500 mg daily but was boosted up to three days a week to 1000 mg. I have had no side effects whatsoever to the drug except maybe a tad bit more fatigue. Like some of the others, I work thru that. The sun has not bothered my skin and I haven’t lost any hair although when I started the drug I also started taking a tablet of biotin everyday. I’m 74 and two days ago I ran 5 miles and yesterday I kayaked 10 miles so I’d say this drug has not crimped my life style. I hope you have great luck with your treatment. I was so anxious to start this drug but now I’m pretty sure it’s a longer life saver.

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1 reply
lyd0218 | @lyd0218 | Jun 8 10:38pm
In reply to @eileen11108 "Hi @lyd0218 I am 81 and have ET JAK2 mutation, I started taking HU 500 mg..." + (show)
@eileen11108

Hi @lyd0218
I am 81 and have ET JAK2 mutation, I started taking HU 500 mg daily in 2022. I had a few lightheaded feelings, fatigue, and headaches. Then my hematologist changed me to every other day and it was much improved. I found later that taking it immediately after eating works better for me. It is very important to drink 64 ounces of fluids daily to rid any toxic effect of HU.

Best wishes, Eileen

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Thank you Eileen, my doctor feels I should not have any bothersome side effects. It’s still giving me concern until I actually start taking it.

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lyd0218 | @lyd0218 | Jun 8 10:41pm
In reply to @mfeley "My best reaction to the drug Hydrea is that it has now reduced my platelets to..." + (show)
@mfeley

My best reaction to the drug Hydrea is that it has now reduced my platelets to within the normal range in just 3 months. I started out taking 500 mg daily but was boosted up to three days a week to 1000 mg. I have had no side effects whatsoever to the drug except maybe a tad bit more fatigue. Like some of the others, I work thru that. The sun has not bothered my skin and I haven’t lost any hair although when I started the drug I also started taking a tablet of biotin everyday. I’m 74 and two days ago I ran 5 miles and yesterday I kayaked 10 miles so I’d say this drug has not crimped my life style. I hope you have great luck with your treatment. I was so anxious to start this drug but now I’m pretty sure it’s a longer life saver.

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That’s so encouraging!! I am hoping getting my platelets back to normal will help with the fatigue and that HU doesn’t give me fatigue. The fatigue is what started this journey for me.

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1 reply
mfeley | @mfeley | Jun 9 6:26am
In reply to @lyd0218 "That’s so encouraging!! I am hoping getting my platelets back to normal will help with the..." + (show)
@lyd0218

That’s so encouraging!! I am hoping getting my platelets back to normal will help with the fatigue and that HU doesn’t give me fatigue. The fatigue is what started this journey for me.

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My beginning was a visit to the ER for heart palpitations which turned out to be nothing according to the cardiologist (possibly a symptom of ET?). It was there I was given a CBC and it showed the high platelets. For some reason my doctors have neglected to give me a CBC over the years as my last one was in 2015. I guess I didn’t know people got them along with other annual bloodwork or I would have questioned them about why the test wasn’t ordered.
Think positive!

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3 replies
lyd0218 | @lyd0218 | Jun 9 10:47am
In reply to @mfeley "My beginning was a visit to the ER for heart palpitations which turned out to be..." + (show)
@mfeley

My beginning was a visit to the ER for heart palpitations which turned out to be nothing according to the cardiologist (possibly a symptom of ET?). It was there I was given a CBC and it showed the high platelets. For some reason my doctors have neglected to give me a CBC over the years as my last one was in 2015. I guess I didn’t know people got them along with other annual bloodwork or I would have questioned them about why the test wasn’t ordered.
Think positive!

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That’s so interesting you weren’t getting a CBC draw in all that time. I had always gotten them and my platelets were always normal. Something caused the JAK2 mutation to kick off for me. They are looking for underlying conditions to make sure nothing else is going on in my body.

Lynda

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ruthiek519 | @ruthiek519 | Jun 9 3:36pm
In reply to @mfeley "My beginning was a visit to the ER for heart palpitations which turned out to be..." + (show)
@mfeley

My beginning was a visit to the ER for heart palpitations which turned out to be nothing according to the cardiologist (possibly a symptom of ET?). It was there I was given a CBC and it showed the high platelets. For some reason my doctors have neglected to give me a CBC over the years as my last one was in 2015. I guess I didn’t know people got them along with other annual bloodwork or I would have questioned them about why the test wasn’t ordered.
Think positive!

Jump to this post

I had a similar experience regarding CBC testing. I wasn't routinely tested until I lost 20 lbs in 3 months. Looking back in my medical records on my portal I discovered that I had a CBC done in 2022 when I was seen in the ER following a fall. At that time my platelets were somewhat elevated, but no follow-up was done. When I was tested in April 2025 before starting HU my platelets were over 1.2 million. Glad I didn't stroke out or suffer a heart attack. Now my friends and family of a similar age (I'm 72) are requesting CBCs at their regular exams.

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