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New to Hydrea for ET

Posted by mfeley @mfeley, Feb 22, 2025

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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Profile picture for nohrt4me (Jean)
nohrt4me (Jean) | @nohrt4me | Mar 6 10:50am
In reply to @writernana "I'm a 78 year old woman withET , JAK2, diagnosis 3 months ago. On Hydrea 500..." + (show)
Profile picture for writernana @writernana

I'm a 78 year old woman withET , JAK2,
diagnosis 3 months ago.
On Hydrea 500 Daily, unfortunately my hair is definitely thinning, especially noticeable on the top. I just ordered 7" wide stretchy headbands and they have helped me feel more comfortable about being around others.
Hope this is helpful.

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@writernana Great idea! I keep my hair real short, and some of those wide headbands look very cute and make me look a little less "shaved." Your hair may recover after some time. My thinning quit and then reversed a bit after a couple years.

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Profile picture for ebertolis
ebertolis | @ebertolis | Aug 5 11:11am
In reply to @bshattuck138 "My 72 year old wife (Becky) has been on hydroxyurea (Hydrea) since summer of last year..." + (show)
Profile picture for bshattuck138 @bshattuck138

My 72 year old wife (Becky) has been on hydroxyurea (Hydrea) since summer of last year and has had no side effects at all. None! She started on 1x500mg capsule daily but when the platelets were not going down enough was put on 2x500mg 3 days per week then 1x500 on the other days. That helped and she is now down to 8 capsules per week.
As background, she is a very active person having competed in 15+ half ironman triathlons, run over 20 marathons and completed one full ironman.
The disease, (ET) and the medication has not slowed her down at all. Age has as she hasn't been competing for the last 10 years but again, it's age that has slowed her down a bit. We still have fun biking, running and swimming. Hopefully you will find the same thing though I know people are different and react to meds differently. Good luck,
Steve

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Hello,@bshattuck138
I'd like to know how your wife could go out in the sun for swimming? I was told that taking hydrea prohibits to go out in the sun because of the dangers of a skin cancer. This prohibition grieves me a lot. Thank you for responding me.

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