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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I am 71 yo female diagnosed with ET in May this year. Started 500mg HU every other day to bring numbers down from 800s. July numbers went down, August went back up. So now HU every day and we will check again mid Nov. only side effects are hot flashes again (ugh-I thought I was done with that), and some times my shins will briefly feel sunburned — then it goes away.
Thank you for the suggestion, I will discuss this with my dr this coming week.
Any side effects on Anagrelide?
I never had any symptoms except my hands would turn bright pink when I washed them......after HU no longer bright pink
Thank you for your reply. I take HU 500 mg. every day too. Thank you regarding exercise is helpful. I was told the same regarding a stroke. Knowing that this cancer will not take us is encouraging. My brother also has ET and we are in our early 70s.
My Primary Care Physician also told me that ET is not "technically" cancer. My oncologist told me that this cancer will not take me, but that I am at high risk for a stroke because of my age.
Yes, I agree that it's frustrating, but I take my HU 500 mg. every day and try to get on with my life. I find that exercise helps.
Linda
My hematologist at University of Chicago Medicine also told me numerous times that essential thrombocytosis is not cancer. However, online research does not support that claim the majority of the time.
ET complicates things. I was always very high energy until I hit 55. Then the fatigue was often crushing, and I didn't want to do anything. I hated to complain about it because you just get relegated to the postmenopausal nutcase group. But I was spacey, tired, irritable, and didn't want to socialize. When I was diagnosed, the hemo said onset of ET was ... age 55. I felt she knew what she was doing treatment-wise, but she maintained until her retirement that ET was a symptomless disease. So I still keep my trap shut about fatigue and visual problems down at the oncology clinic. My GP was more helpful about symptoms.
Thanks for all the hugs, everyone! Back at you! Tonight is the first night of my new medicine for ET. I am starting on Hydroxyurea 500 MG, 3 days a week. My doc then wants me to start with blood draw once a week for the first month. then every 3 months if all is well. I am having a hard time realizing this is ME we are talking about. I am the one with the unseen condition that starts with the Big C. Maybe I'm still numb, maybe it's no big deal, who knows? I don't like that there is nothing I can do to make it better besides take a pill.
Thank you so much. Makes sense!!
Restless Leg Syndrome...Ok, I am going to put this crazy solution out there, this is an old wife's tale! don't ask me why, but sleeping with a bar of soap near your legs does actually work! Don't knock it until you have tried it!!