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Hi, Lynnevb, I am curious as to why you went on hydrea after being on aspirin only for 11 previous years? I have ET with JAK2 and have been on aspirin only for the past 2 years. My platelets range in the mid 500s. However, I am nearly 83, and prefer not to take chemo therapy at this age. I Did your platelets start to rise? And, if I may ask, how high were your platelets when you decided to start the hydrea?
Replies to "Hi, Lynnevb, I am curious as to why you went on hydrea after being on aspirin..."
Hello pumpkin1, Thanks for reading my post. The protocol for treatment of ET according to many experts and my consulting physician at Mayo in Rochester is a bit long but I will try to summarize the major points.
Under age 60 with no history of clots and platelets under 1,500,000 treatment was only aspirin.
Over age 60 and platelets over 1,500,000 increased the potential for clots so hydrea was added.
Clots can happen anywhere in the body's vessels. So a clot in the eye would cause blindness, brain would cause stroke, kidney would cause kidney malfunction, heart would cause heart attack. So, to prevent clots and get the platelets down, hydrea was started. It took several months to get the platelets down to an acceptable level without lowering the other blood values to a a dangerous level.
In my case at age 60 my platelets had inched up to 1,500,000 so I started on hydrea. I had nausea for about a year but no nausea in the past 10 years.
Right now, I am on Hydrea 1000 mg 4 days a week and 1500 mg 3 days a week. My platelets hover between 500,000- 750,000. I am 70yo. I have no idea what causes the platelets to fluctuate in number and as far as I know no else does either.
I hope this was helpful. My best advise is to see an hemotology oncologist in consult with your local oncologist. In my case I have a local oncologist and I consult with a hematology oncologist at Mayo in Arizona. I believe that is why I am alive today.
Just for clarity I will say that my early consults were in Mayo in Rochester (that physician has since retired) and my latest consults were with Dr J Palmer in Arizona.
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Just to add my two cents that may be helpful: My wife has recently been diagnosed with ET with Jak2 mutation at the young age of 72.
Her platelets were rising for the last 5 years but it wasn't picked up until a recent blood test where the platelets were above "normal". Once the trend was discovered, the ball started rolling to find out what was going on.
Her platelets in 2021 were 225.
August of this year they were 625. That's when more testing was done and she was put on baby aspirin 2x per day (which she was on anyway from a recent total knee replacement) and 500mg of Hydroxyurea. It's almost a straight line of rising platelets from 2021 to now. So to add to your information, Becky was put on hydroxy when her levels were in the low 6 hundreds. Hope that helps.