I was diagnosed with ET about a year ago, CALR, 750 platelets, age 66. I had a stroke about 10 yrs ago. I decided to take aspirin but on reviewing all the medical papers decided not to take hydroxy urea, at least until my platelets reach 1000. I'm fine for now!
Are there any more of us??
Hi. If you are managing ok then that is good. I had to start on hydrea as my fatigue was too bad alongside the E.T. They say we know our bodies the best and I think you would know if you needed extra medication. Well done for managing this without any extra meds .
While the standard protocol is to initiate cytoreduction at age 60 or 65, not all MPN experts follow that protocol. Some individualize the treatment decisions based on factors other than age. Providing you understand the risks/benefits of your treatment options, then it is a matter of informed choice whether you opt for cytoreduction. Basing your decision on meeting your own treatment goals and considering your risk tolerance is always the best way to make an informed decision.
I'm also ET CALR, aged 71, no history of thrombosis and no other risk factors. My haematologist wanted me to take HU but I declined because I decided that the risk of side effects was greater than the risk of thrombosis. Platelets have ranged from 700 to 800 for the past 2 years. I'll also reconsider if they rise to over a 1000. Everything I've read suggests to me that the platelets we CALR people produce are not very sticky, perhaps because they are immature, and therefore pose minimal risk of forming unwanted clots.
Great to hear from you. Thanks.
Hi Nathan, I have Jak2 ET. Platelets somewhere around 1400 +/- Now 57 and have declined HU . For me the side effects would be far worse than the condition, as other then very mild occasional tingling in my toes ( for which I take ½ a regular aspirin once every 3 days, and was approved by an MPN specialist ) I have no other symptoms .
Never had blood clotting issues in the past either .
Great to hear from you. Thanks
I am 75 with ET CALR. Was on HU for about 2 years and developed some bad side effects, so I stopped for about a year..against Dr advice.I am otherwise very healthy and active. Never had clots or bleeding. The cure was worse than the disease. My platelets were well over a million while on no meds..but still felt great.
Dr. Finally convinced me to take agrilyn (sp?) I am on a very low dose, but my platelets are down..not to normal but with no risk of bleeding. So far I can tolerate the Agrilyn.
I don't think doctors know how to treat each patient based on their individual health situation. They just want to see the numbers go down. I consider HU a poison and will never take it again. Quality of life is worth more than longevity.
From what I have read, the CALR mutation makes us less susceptible to clotting. Therefore, we may have a little more flexibility with treatment.
I do hope more people read your post. I'm 77 and pv diagnosed 5 years ago. After 2 years I changed doctors and reduced my HU and eliminated venesections. Did much better after that.
Treatment plans tailored to the individual are key to success imho. Thank you and best wishes
It's great to hear from you. Thanks for the reply.
Understanding a MAYBE ET diagnosis
HYDROXYUREA ET
ET Jak2 
ET
ET CALR 
