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Have PV, tested positive for Jak2, enlarged spleen. Recommendations?

6 ago from a routine physical I was told today I have PV because i tested positive for Jak2. Counts Crit: 52.1 Hgb:17.2 EPO:1.1 Plat:449 borderline enlarged spleen: Grew 1cm in 6 years. (prior scan for another issue unrelated) Started slight itching after showering 3 years ago when all my blood levels were normal. I requested a BMB based on the literature to confirm the correct diagnosis and to stage my marrow. MD said why we have confirmation with Jak2. I requested a consult at Dana Farber. Does anyone have any recommendations in the Boston Area? I am a triathlete and it seems weird to read the mean survival time is 15-17 years. Im 55 and feeling very sad today.
Asked On : Tue, 8 Jan 2013
Answers:  1 Views:  64
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Pathologist and Microbiologist 's  Response
Hello and welcome to HCM

JAK 2 mutation is the confirmatory test for polycythemia vera (PV). Bone marrow biopsy is not required when it has been confirmed by a JAK 2 mutation.
PV is a chronic illness and can be managed well.
All you need is to have a positive outlook, accept the situation and to manage the problem.
Chemotherapy is available which minimizes the complications of PV.
The major complications are hemorrhage and thrombosis.
Now that the diagnosis is made, you need to concentrate on the management part.

Thanks and take care
Dr Shailja P Wahal
Answered: Thu, 24 Jan 2013
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