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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cathy8 | @cathy8 | Apr 11 2:55pm

Hi I am taking hydrea 500 mg twice a day and once on alternative days...I have kak 2 and Calr bone marrow mutations..was on jakavi but take eliquis blood thinner for atrial fibrillation and was advised to.stop taking jakavi and go back on hydrea..I also inject with a medication to stimulate the bone marrow..the fatigue is unreal.any sort of activity like walking even short distance and I feel.weak and need to.sit .the fatigue is unreal.i am told I am.complicated any one else experience the fatigue

janemc | @janemc | Apr 12 7:28am

In reply to @cathy8 "Hi I am taking hydrea 500 mg twice a day and once on alternative days...I have..." + (show)

Fatigue is the most reported symptom of ET. When our bone marrow is over-producing platelets, it really saps our energy.

Please be kind to yourself and rest whenever you need to.

For me, once HU (hydrea) began bringing down my platelet count, I began to feel much stronger.

Wishing you the best.

cathy8 | @cathy8 | Apr 12 8:22am

In reply to @janemc "Fatigue is the most reported symptom of ET. When our bone marrow is over-producing platelets, it..." + (show)

Really appreciate your reply so far nothing is working on hydrea for two months and platelets still going up.....with the aranesp injection slight improvement on iron levels so hopefully things will.start to improve ..thanks for the encouraging comments

janemc | @janemc | Apr 12 9:35am

In reply to @cathy8 "Really appreciate your reply so far nothing is working on hydrea for two months and platelets..." + (show)

Hang in there, cathy8! It seems some people respond very quickly to HU, while others do not.

I'm a strong advocate for HU, because it's made me feel so much better. But even after 18 months, my oncologist's still trying to find my optimal dose, because my platelet count's stuck in the 600s.

We'll get there!

cathy8 | @cathy8 | Apr 12 4:45pm

In reply to @janemc "Hang in there, cathy8! It seems some people respond very quickly to HU, while others do..." + (show)

Thanks yea unfortunately my platelets have gone up from 600 to 750 while on the hydrea it is still early days so hopefully will get some positive results soon

janemc | @janemc | Apr 12 5:25pm

In reply to @cathy8 "Thanks yea unfortunately my platelets have gone up from 600 to 750 while on the hydrea..." + (show)

Exact same thing happened to me! Two months on HU and my count went UP.

It took seven months, and a higher dose of HU, to finally see a decrease.

To me, this shows that without HU, my count was going nowhere but up. I hope it won't be long before you see better numbers.

cathy8 | @cathy8 | May 16 9:46am

On Hydrea for past 3 months 500 mg twice a day and one 500 mg on alternative days. No hair loss just chronic tiredness as result of very low anaemia which is being addressed

cathy8 | @cathy8 | May 16 9:48am

On Hydrea for past 3 months 500 mg twice a day and one 500 mg on alternative days. No hair loss just chronic tiredness as result of very low anaemia which is being addressed ..my platelets have come down to normal levels

bobala | @bobala | May 16 7:53pm

My hematologist just prescribed 500 mg of Hydrea every other day for me. My bone marrow biopsy showed that I had JAK2 and called it a gene mutation. All other lab work and ultrasound was good. I’m really worried because I’ve heard such scary things about side effects.
I’m 75 years old and I’m fairly good shape. is that

janemc | @janemc | May 17 6:58am

In reply to @bobala "My hematologist just prescribed 500 mg of Hydrea every other day for me. My bone marrow..." + (show)

While some people do have problems with Hydrea (also called HU), many of us do not.

For me, HU not just lowered my platelet count, it gave me back my energy. I take 1000 mg five days a week, 500 mg 2 days a week. I haven't had the slightest problem.

I do credit my oncologist for starting me on a very low dose at first -- originally, just 500 mg a week. That made adjusting to the medication easy.

Others on this forum have taken HU for decades! Whatever you're wondering about, you can get an answer here.

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