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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Apr 15 2:24pm | Replies (476)
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@taisaint

HI Lori - I hope I am replying to the right section. If not, please advise. More about me... I was recently diagnosed as of 11/13. My daughter (25) encouraged me to get checked out b/c I would experience inconsistent and random fatigue and recently my feet began to swell and were tender to touch. I salsa dance 4 days per week and attributed my feet to practice. After receiving a full CBC with my primary, I was referred to a Hematologist. The bone marrow biopsy determined Jak 2 mutation and that I have both PV and ET with an iron deficiency as well. I knew I was special and both both rare disorders [insert sarcasm here]. I am 45, and to my knowledge, live a majority healthy and somewhat active life style. I try to eat healthy and splurge in moderation. This is such new diagnosis for me, I am trying to learn more about my conditions. The current treatment plan is Hydrea and daily dose of Aspirin. I submitted a inquiry with the Hematologist b/c I am not clear why I am not a candidate for Phlebotomy.

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Replies to "HI Lori - I hope I am replying to the right section. If not, please advise...."
Lori, Volunteer Mentor | @loribmt | Nov 21, 2023

Hi @taisaint, You’re absolutely in the right section…no worries. ☺️. You have a great daughter who encouraged to you get a checkup with the symptoms you were experiencing. Why is it we mother’s tend to drag our heals when it comes to our own health?
You’re very active and otherwise healthy, so I’m sure this really came as a shock to find out you have a blood disorder. Believe me, it’s not caused by anything you did or didn’t do. I can relate because a similar thing happened to me out of the blue. I was super healthy and active too…then I wasn’t! Being special isn’t all that it’s cracked up to be, right? I’d rather it came with a tiara than pills! 😅

Thank you for sharing more information. With the biopsy your doctor was able to determine factors that influenced their decision for treatment. The acquired JAK2 gene mutation is the culprit in your diagnosis. To explain things clearer than I can, here’s a good source of information regarding the JAK2 Gene…

https://www.verywellhealth.com/jak2-mutation-5217909

You’re wondering why you are not a candidate for a phlebotomy. That may still be a possibility to bring down the amount of red blood cells and hematocrit in your body if warranted. There are certain parameters for indicating this procedure and your doctor will have reasons for not doing this first. They may be waiting to see how the hydroxy impacts your blood counts.

Having faced a ‘special’ diagnosis myself, one thing that is important to remember; This doesn’t define you! Stay active, follow your same routines and keep a positive mindset.

Have a Happy Thanksgiving. Do you have a large family gathering?

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