Essential Thrombocytosis

Thanks for your post, Barry!  i was on 1000mg of H a day, until recently.  I really didn't have any side effects, and I've never had a symptom.  My lousy neck revealed my platelet issue.

I hope you continue to be side effect free and symptom free...

On Jan 31, 2012 8:02 PM DudeDad wrote:

Thanks for your post, Barry!  i was on 1000mg of H a day, until recently.  I really didn't have any side effects, and I've never had a symptom.  My lousy neck revealed my platelet issue.

I hope you continue to be side effect free and symptom free...

Thank you and the same to you.

In case you haven't read all of my posts on this subject, my Hemo sent me to a top doctor at the Mount Sinai Hospital in New York city - he wanted to be sure that he had me on the right regimen. Mount Sinai hospital has a "wing" called the Ruttenberg Institute that specializes in myleoproliferative disorders. This Dr. Silverman confirmed that my regimen is correct (not surprising in that my regular hemo doc is one of the more highly regarded hemotologist/oncologists in New Jersey). He also confirmed that a clot is the thing to be avoided and hydroxyurea is much more effective than aspirin regimen alone.

Best regards

Barry

Interesting posts. 

I'm 55, jak2 neg, symptom free and on 81mg aspirin and hydroxyurea (currently 6000mg per wk) since diagnosis in 05.  My hem at a teaching hospital in Boston specializes in myeloproliferative disorders and recommends platelet count slightly above normal (500-750-ish).  Apparently his approach is a middle ground between the new "hands off" approach for below age 60 and the typical strategy of striving for "normal" platelet count.

Hi, have had this platelet disorder for 10 years.

I would like to know what it actually means to be Jak2 negative or positive?

Thanks, Linda

I genuinely appreciate this forum, knowing absolutely no one else with this condition personally and never even having  heard of it before.. this is so very helpful and comforting, thanks everyone !! May we all continue to 'virtually' support  each other

Daisy

about 50% (I believe) of those with ET have the Jak-2 mutation...google it...usually it's found during a bone marrow biopsy...did you ever have one?  What are your counts and how is it being managed?

Thanks, Yes I manage this with agrylin and coq10, iron, as I am now almost always cold. My platelet is usually in the 400-500 range...sometimes i will take an "extra" if I am going into get my blood work and know that I havent been taking the required dosage....after researching this situation 10 years age, I made the choice to take the agrylin over the hydroxy, although the cost is outrageous. I wish I could afford the real brand and not the generic, which is filled with harmful chems/byproducts...an anti inflammatory diet is crucial here, but as with anything, we do sometimes eat what is not the best for us. Greens/juicing are a regular part of my diet, try to stay as natural as possible, but do to the low rbc, have had to begin eating some red meat again...try to find grass fed, w/out the chems/hormones.

I also ask my doc to check my liver enzymes, and vit D levels etc...

Linda

The treatment  is the same  if you are jak-2 positive or negative, but  it  is a good idea to find  out which you are since it is gene related.. It is uncommon to pass it on, but  if you find out tht you are positive and have children they might  want to get tested as well, as sometimes  it is passed  on to offspring. interesting  comment about red meat. I was a non-red meat eater for  years, but  have started eating some again since diagnosed, and found that I feel better , oh well...

On Feb 03, 2012 4:40 PM sophie713 wrote:

Hi, have had this platelet disorder for 10 years.

I would like to know what it actually means to be Jak2 negative or positive?

Thanks, Linda

JAK2 is a gene mutation.  If you have the mutation, you are JAK2-positive.  If you DO NOT have the mutation, you are JAK2-negative.

The gene testing can be done with a blood sample.  There is no need for a marrow sample just for this genetic testing.

There is ongoing research specific to JAK2 which may affect treatment.  There is evidence that JAK2 presence affects the progression of ET.

Hi i was also just diagnosed with essential thrombocytosis so im not sure where to look for the best info. Now my biggest worrie is am i going to die from this? And like you it would be nice to talk with people that is going though this disorder.