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Polychemia Vera Jak's 2

Hi, I'm LUANNE L L.

It seems that Muskegon is not have the best resources on this subject. The best resource for me has been Mayo Clinic or Cornell University in New York where this type of rare Blood Cancer has a lot of research, newer treatments, preventive care etc. They have Doctors that have studied this extensively.

  • Post #1
  • Sun Mar 10, 2019
Hi, I'm Curtis B.

I think you are referring to Polycythemia or Polycythemia Vera. This can be caused by something wrong with the JAK2 or TET2 genes. You can also have what I have which is called Secondary Polycythemia which has the same symptoms as Polycythemia, but I test negative for the JAK2 & TET2 genes. Mine is caused by sleep apnea. Going on CPAP helped my symptoms greatly… and really changed my life for the better! BTW… I’m in my 40’s and in decent shape… not obese and not old… at least I don’t feel old any more!!! YAY!!!

  • Post #2
  • Sat Mar 16, 2019
Hi, I'm Charlotte C.

I am 76 diagnosed with polycythemia vera with JAK2 10 mo ago…Taking Hydroxyurea to surpress my bone marrow from making to many mutant cells…working so far…I joined facebook polycythemia vera support group…A wonderful site with abundance of info..easy to join and much support….heard about it from this site…If I can be of any more support please let me know…..We all need it from time to time

  • Post #3
  • Sat Mar 16, 2019

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