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 | 3 days ago
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 | 2 days ago

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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lyd0218 | @lyd0218 | 6 hours ago
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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