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Essential Thrombocythemia: Making treatment decisions

Posted by mamsgirl1998 @mamsgirl1998, Jan 27, 2024

I have ET and was diagnosed 2 years ago. I am 50 Years old and my latest platelet count was 1,183,000. I only take a baby aspirin daily. My hematologist said I could try Hydroxyurea if I wanted. I am low risk and at first I didn’t want to take it. My platelet count continues to climb. I am thinking about trying the medication. Anyone else tried it? Any ill side effects?

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nohrt4me | @nohrt4me | 3 days ago
In reply to @lynnebgraham "I couldn't get my Anagralide through hospital was going to cost the earth to get through..." + (show)
@lynnebgraham

I couldn't get my Anagralide through hospital was going to cost the earth to get through normal chemist. My haematologist wasn't available saw current haematologist who was shocked I had not had a Bone Marrow test done ever. Hence waiting for results in 5 days. Possibly myelofibrosis from what he has already seen yes waiting is making me worry.

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There seems to be more they can do for MF these days. The MPN Research Foundation tracks studies and therapies, and they could be a good resource for you. You can Google their website. Pulling for you!

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docoltun | @docoltun | 3 days ago
In reply to @lynnebgraham "Hi, I have had Essential Thrombocythemia for over 15 years. I was on Anagrelide, and this..." + (show)
@lynnebgraham

Hi, I have had Essential Thrombocythemia for over 15 years. I was on Anagrelide, and this kept my platelet levels manageable. If I forgot to take a tablet which I did when I went on holiday once, my levels shot back up. However, once I was back on track, they became manageable again. Recently I had to have a bone marrow test, which showed myelofibrosis, but not all results back until 8th. Not sure how to take this. My new hematologist was very surprised that I had not previously had a bone marrow test done. Waiting for answers is hard.

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Sounds exactly like my story without the myelofibrosis. So many results from genetic and bone marrow biopsy. I trusted the old oncologist, new one treats my husband for something else, is in the MYCHART system and more convenient. Best wishes for a good new year!!!

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ksyren | @ksyren | 3 days ago
In reply to @janemc "You've been through a lot. You're taking good steps! Every dose of HU and Eliquis is..." + (show)
@janemc

You've been through a lot. You're taking good steps! Every dose of HU and Eliquis is helping you.

And finding an MPN specialist will be great too.

As you probably already know by now, HU makes our skin more vulnerable to sun damage. And it lowers our immune response. I wear a sun hat anytime I have to be outside, even when driving. And in busy indoor places, I wear a mask.

Please keep us posted -- we're rooting for you!

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So grateful for this forum - it has "regularized" by experience. I'm feeling much less out in the cold, so to speak.

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lynnebgraham | @lynnebgraham | 2 days ago

It does help, knowing that, Thank you.

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lynnebgraham | @lynnebgraham | 2 days ago

Thank you for your words of encouragement.
A couple of days ago I had an urgent call from my GP about my platelet count being dangerously high. I had my blood tests that morning and had to drive to the nearest chemist and get some more aspirin. Now on 3x 100mg twice a day and he also wanted me to take the hydroxycarbamide twice a day with the aspirin. He was very worried about the prospect of blood clots and stroke.
My hematologist didn't want me to take the hydroxy as it would have been over the Christmas holiday period. So I hadn't been on anything for over a week, so I'm glad my GP is on the ball. Seeing my GP tomorrow and hematologist on 8th, hopefully only good comes of this.

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