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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 4 days ago | Replies (768)Comment receiving replies
Hi,
Thanks, I am working with an Oncologist in Central MN who tested for JAK2
I got a second opinion and the thorough work done by the Mayo Clinic figured out the years as there were a few different Clinics I had been to over the years. That’s good news as it is progressing slowly. Since dx I have become very focused on diet and exercise, and I have a positive outlook for the future.
I am curious about other people’s journeys with hydroxyurea as that is my next step once I reach a certain platelet count.
Thanks!
NP
Replies to "Hi, Thanks, I am working with an Oncologist in Central MN who tested for JAK2 I..."
@przybillan I think most people delay HU if they can because it can lose effectiveness over time and there can be side effects with long term use. I went on it as soon as I was diagnosed. I was 65, my platelets were increasing more rapidly and I had some symptoms. The HU has controlled my platelets and reduced the more troublesome symptoms. The baby asprin helped with symptoms too.
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@przybillan
Each of us experiences ET differently. BRAVA to you for seeking a second opinion, and learning as much as you can about ET.
Your oncologist -- not the internet or me! -- is your best guide for the treatment decisions that will work best for you.
As you probably know, hydroxyurea (HU) has been in wide use for ET and other MPNs, as well as sickle cell anemia, for decades.
My oncologist recommended HU upon my ET diagnosis at age 69, three years ago. My weekly dose is now 15 500mg capsules. The only problems I've had with HU are dry skin and occasional constipation. Since it's greatly relieved the horrible headaches and exhaustion of ET, for me HU has been a life saver.
I'm so glad you've found this forum, Nancy! Here you'll meet ETrs from all over the world. We know what you're going through, and will try our best to help.