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Essential Thrombocythemia: Looking for information and support
I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!
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The decision to opt out of taking the AI meds was a challenging decision. Morphing from one CA treatment issue to another was disarming and forced a dramatic shift in my attention — no emotional capacity to contend with both... and I’m good with that!
Thanks for the support.
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2 Reactions@shenriq I can imagine that was a difficult decision. Everyone is different and working with your team to find what decisions are right for you is so important. Quality of life is a massive part of decision making.
No longer taking AI drugs or actively dealing with my breast issues. Additionally, there’s no connection between the Breast concerns and my newly diagnosed (EI) blood cancer.
Hi Lydia,
Thank you for your response and personal statement about ET. I have no gene mutations and am wrestling only with the elevated platelet issues. I am continuing to seek out information and like you, was encouraged to get a 2nd opinion by a friend and have been in contact with Sloan Kettering. I am not sure about the value of another opinion, because over the years, my numbers have been consistently elevated. It was important for me to hear from someone who has taken Hydrea, to hear about a personal experience, so thank you for that.
Would you be open to sharing what your side effects are/have been and, is it expected that you'll be taking Hydrea for life? Also, are there any limitations that you're aware of, while on this drug? I'm working to stay positive, but my diagnosis is new enough for me to still be rattled.
Thanks again for your kindness. Good luck to you, too!
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4 ReactionsThe side effects from the AI drugs - of which I've taken all 3 - were difficult and I opted-out! It was an emotional struggle to make that decision, but my quality of life was awful. While Tamoxifen wasn't an option, I did my due diligence and have moved on to another unrelated cancer issue.
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1 ReactionHi shenriq, I have been taking Hydrea for 20+ years for ET. It keeps my platelet count down to around 475 to 525 more or less. I am in El Paso but I got a second opinion at the Mayo clinic in Scotsdale. Same diagnosis. No symptoms and it hasn't morphed into leukemia. Just get my cbc every 4 months. Do not have the jak2. I keep waiting for something horrible to happen, but it seems to be under control. Best wishes, Lynda
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10 ReactionsHi @shenriq
In addition to the Breast Cancer group, I included your post in the Blood Cancers group (https://connect.mayoclinic.org/group/blood-cancers-disorders/) so you can meet others living with Essential Thrombocythemia, like @ettap @misty45 @badblood @tessa @evazhang @deborahgrace and @sueg444
You might also be interested in this older discussion on Connect about ET: https://connect.mayoclinic.org/discussion/essential-thrombocythemia/
Shenriq, are you still in treatment or taking an AI for breast cancer too? How might one diagnosis affect the other?
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