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Starting 17th year with ET. What's ahead?

Blood Cancers & Disorders | Last Active: Apr 22 11:17am | Replies (74)

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@nancyra

27 years with ET
Platelets always in the 500-600 range which was fine with my hems. Was on HU 18 years but got bad skin cancer on head so switched to Anagrelide. Recently had to up my dose to 3 -.05 daily. Now numbers under 400.
Fatigue and headaches but at 67 no different than anyone else my age.
Also CalR. Numbers will always spike after vaccines of any kind so don’t be so quick to up medication.
And NO live vaccines!

One hem thinks I should have another BMB at this stage, but the other does not think it necessary.
Always good to have 2 opinions on everything with this disorder because it is rare and very few hems know enough about it.
I’m always reading up on the latest and follow threads here.
I read that it’s important to have a stroke assessment test to see how your arteries are doing. I had to insist on one with my dr. As they don’t do it which made no sense to me since that is what we are at risk for! Look into…
Coronary calcium score
Carotid artery test
Good luck!

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Replies to "27 years with ET Platelets always in the 500-600 range which was fine with my hems...."

Hi, I too am ET CALR diagnosed in 2004, switched to anagrelide following 3 years watch and wait, 10 years HU ( then ulcers) and interferon not working. After that anagrelide has controlled counts well. Am monitored for spleen size through annual ultrasound and heart for any damage from drugs. In 2020 had a new BMB that caught me on the turn to MF. I had the heart CT and have calcium score of zero and Doppler artery scan too, all good. However although I have post ET MF nothing has changed in my treatment as everything has stayed stable and the progression is very slow for me. The main thing is I had lower hemagloblin ( 9.6) so I had one transfusion last year and then felt normal again. It’s no harm to know where you are as there are lots of new treatments coming on line and you may qualify. I feel no different once I got over the shock of progression but the disease is actually a continual line of progression so we are all changing all the time. My spleen is still normal 4 years on too, blasts are low ( tear shaped cells) . Good luck, I hope you feel able to make the decision once way or another.