essential thrombocytosis jak2 negative

5 Posts | Page(s): 1 

essential thrombocytosis jak2 negative

by ttdanls on Thu Apr 02, 2015 03:57 PM

Quote | Reply

Anyone diagnosed with ET Jak2 negative?  Platelets are at 693 no treatment, recently diagnosed.  So much unknown when Jak2 negative.

RE: essential thrombocytosis jak2 negative

by boisid on Mon Apr 06, 2015 12:54 PM

Quote | Reply

Hello. There is an entire thread on the subject of ET, and you will get much information there. Some of it is also nonsense, but it is a good place to start.Here is a link:

http://www.cancercompass.com/message-board/message/all,4093,

I am in the same situation as you, although my ET was first noticed about 27 years years ago before it even had an "official" name. It was simply described as a myleoproliferative disorder.

For the last 7 or 8 years I have been seeing an excellent hemotologist who has treated me with a medicine, hydroxy urea (aka hydrea), and my platelets are under control. I have no other issues and live my life, and hope to do so for 20 or more years, to the fullest. I am 68, soon to be 69.

Best of luck and health

Barry

RE: essential thrombocytosis jak2 negative

by advidhiker77 on Thu Apr 23, 2015 08:21 PM

Quote | Reply

Hi there, I have been diagnosed with ET for twp years and I am Jak2 negative as well. My platelets elevate around 550 but no course of treatment at this time. My hematologist states that you can have ET and test negative for it. The website from the earlier post is a great source to use and the people on this website are very supportive, and very knowledgeable. Any time you have questions or concerns this is a great place to voice it.

Patty

RE: essential thrombocytosis jak2 negative

by ttdanls on Wed May 06, 2015 12:52 AM

Quote | Reply

Platelets elevated to 720 last week.  Meet with Hematologist today will schedule Bone Marrow aspiration tomorrow to be fine within next 3 weeks, I'm afraid.  Just to recap my status, I'm Jak2 negative, no treatment yet.  Can anyone give me their experience with bone marrow aspiration?

RE: essential thrombocytosis jak2 negative

by hometypist on Thu May 07, 2015 07:56 AM

Quote | Reply

Hi,

Have you checked for CALR because it is also one of the next test.  Not to frighten you but JAK2 negative does not mean it is not ET.  By the way, i was diagnosed in 2011, conventional medicine only stops the symptoms, have been trying to source out the root cause of high platelets but no luck so fare, have tried ayurveda and now homeopathy.

5 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.