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Essential Thrombocythemia: Making treatment decisions
Blood Cancers & Disorders | Last Active: Sep 15 11:57am | Replies (160)Comment receiving replies
Yes, I did read your messages about yourself and others’s before I joined this group. It made me feel lot better as I was miserable when I got this diagnose in April. Thank you very much Lori for spending time to write and explained to me. I feel lot better and will keep in mind of what you suggested.
I am still on 81mg aspirin daily. My platelet level went up past one 1000 in May but it was going down in the last two blood test to 838. Will see what the specialist is going to do in the next appointment, he mentioned about Hydrea as I have had the symptoms as fatigue, pin and needles on the feet, light dizziness. In the last 2 months my iron level suddenly dropped to 3.9 so I was on iron pills and have been on B12, I still feel not balanced when walking though.
Yes, I was told that I had ET , platelet cells have mutated. Have seen the word Jack 2 on the report.
I am happy that my concern/question was answered as it bothered me.
Oh by the way, I live in Canada, and from a small town that ET is still even new to some of the medical staffs. So this room is what I have to not being alone with my sickness.
Thanks,
Rose
Replies to "Yes, I did read your messages about yourself and others’s before I joined this group. It..."
Hello, Rose! ET is so uncommon. No wonder you feel so alone.
But here, from Lori and so many others, you'll get excellent advice and support.
That low-dose aspirin you're taking is helping keep your cardiovascular system running smoothly.
And if your specialist recommends hydrea (HU), be assured that while side effects are possible, lots of us take it with no problems whatsoever.
My oncologist started me on just 1 500mg capsule a week. Over the next months, the dose gradually increased. For me, 10 500mg capsules a week turned out to be the effective dose.
It's taken almost a year to bring my platelet count down into the 500s, but at last I have my energy back! For me, HU has made a wonderful difference.
As Lori advises, HU lowers our resistance, so protect yourself with a mask when around lots of people. HU also makes us more vulnerable to sun damage. So do garden tasks in the early morning or the evening, and always wear a wide-brimmed hat when you're outside.
You're among friends! Welcome, Rose!
Hi, Rose, I am 70 and have had ET, CALR mutation, for about 15 years. Been on hydroxyurea and aspirin for 6 years. ET is rare, and the CALR mutation is even rarer. So, yes, it is easy to feel alone and uninformed.
Everyone here offers good info, so I'll just add that it took a year for me to get platelets from 800s to 400s. They've been stable there for 5 years with just a couple spikes into the low 500s. Platelet levels fluctuate in "normal" people, and ours will too.
I have sensitivities to skin and hair care products that seem to have worsened with time. I think the hydroxyurea is a factor (but not the only one). I avoid sun exposure, use unscented, hypoallergenic shampoo and soap. Aloe vera gel, Benadryl/hydrocortisone cream cream, and moisturizing lotions (I use the drugstore brand substitute for CeraVe) are my friends.
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Joining this group was one of the best things, I have done. I feel so much better and not alone or scared anymore. I was afraid of Hydrea at first, but more afraid of having a stroke. I have been on it for 5 months and feel fine.