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Essential Thrombocythemia

Posted by Anonymous-8a9018bb in Just Want to Talk, Dec 22, 2011

I was diagnosed with high platelets in 1988 (850) and am now 48. I've been thru it all.
When I was first diagnosed after a CBC and bone marrow biopsy, i was told to take 1 regular dose aspirin daily. This worked fine for about 12 years, with sporadic phlebotomies to help maintain the plateletsin the 400's.
In 2000, for some reason my platelet count soared to 2000+ & I was hospilized for 1 month with major complications. The only way to get the platelets under control was massive doses of chemo to "start over". I was not happy about the hair loss & other side effects!!! At that time i was put on agarelide which managed the platelets at about 450 at 1mg/day.
I've tried hydroxi & hated the side effects of the chemo even tho it was low dose.
Now i seem to be having other symptoms - dizzy, facial tingling, lack of thirst, climbing platelets, high WB & HCT. My hemotologist want to do cancer tests. Needless to say i"m scared to death because I have always been told "there's no chance this will develop into leukemia"
Any thoughts/discussions would be great to know I'm not alone in this.

Tags: platelets


Posted by @tessa, Jan 18, 2012

That is scary stuff. Seeing that you posted back in December what have you learned? How did the cancer testing turn out? I hope it all came out negative. I think knowing that ET has a habit of turning to leukemia is one of scariest things.

You say they did random phlebotomies? I have never heard about that as a treatment. Can you talk about that a little bit.


Posted by @evazhang, Feb 21, 2012

Hello Sir, I'm very impressed with your courage to fight against this disease bravely. My brother had ET diagnosed about 4months ago when he is 25 years old. During this time, he is very passive and blue. Eat less food. His mother cries every day because she has to inject the interferon- one kind of medical injectant on the belly of the son. She feels the paints and torture 10 times stronger than the son. As the sister, I'm trying to explore the overseas treatment for this disease as in China's websites, it says patients with this disease can't live more than 15 years, but i see it's not true in your case.

I want to consult you if you're receiving the treatment all along with Mayo Clinic. I'm interested with your 12 year of aspirin experience. Can you please give more details, like what name is that aspirin ? did you receive the aspirin prescription with Mayo Clinic as well? Any suggestion is more than welcome. Thank you!

Hope you feel better and best wishes with you.

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