Connect
← Return to Essential Thrombocytosis: What amount of hydroxy do you take?
Discussion
Essential Thrombocytosis: What amount of hydroxy do you take?
Blood Cancers & Disorders | Last Active: Apr 14 10:05pm | Replies (77)Comment receiving replies
My wife just tested positive for JAK2 on Dec 15th, after blood work on Dec 8th that showed the following numbers:
Platelets - 1019
HGB - 17.5
RBC - 58.6
HCT - 53.3
LY - 14
ANC - 8.1
With all these number on the High/high with the low LY we are not scheduled for an appointment until Jan 19th.
We called last week after the JAK2 positive for additional information and to ask about more testing, thinking a bone marrow biopsy would be next. I received a return call from the Oncology Pharmacist with a prescription for Hydroxyurea at 2-500mg tablets twice a day. 2000 mg per day seems high just starting out according to other posts I have read?
The frustrating part is that it certainly looks like she has an MPN, but have been given no more information on whether it is PV, ET, or Myelofibrosis.
I guess we will find out what the next step is on Jan 19th, and I am guessing the Dr wants to see if this high dosage of Hydroxyurea with push the numbers lower after 2 weeks.
Just frustrated with the lack of information, but at least so far, not much in side effects.
Thankful for that.
Replies to "My wife just tested positive for JAK2 on Dec 15th, after blood work on Dec 8th..."
Platelet levels that high need attention asap, so doc is attentive and addressing a possible danger, but I do understand the frustrations with lack of info!
Yes, ask about bone marrow biopsy. They can often do them under sedation or mild anesthesia if your wife is nervous.
I am taking 500 mg Hydrea on MWF. Still a little high but hematologist doesn't seem to be concerned. On one of my visits I saw the PA. She advised me to contact the Leukemia & Lymphoma Society. They sent me a lot of info and most of it did not pertain to me but what did was helpful. I have Essential Thrombocythemia its a lot to understand and believe me I am no where close to understanding it all. Wishing your wife the best.
Connect
Every doctor has a different approach but you may want to raise the bone marrow biopsy issue at the appointment on the 19th. My hematologist-oncologist wanted this done before he would prescribe anything for my ET because he wanted to make sure it was ET and not another blood cancer/condition. I was fortunate in that my biopsy was negative and I started on 500 mg HU 2x a day in November. My platelet count was lower than your wife's at 692 and it's now down to 202. Your wife's count is very close to my doctor's defined danger point so that may be why her Rx is for a higher dose. Hang in there - I know this is scary and frustrating!