Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

I’m curious about this too. I’m 48 and my platelets are in the critical range at 1,142K. The highest was 1,394 and my oncologist-hematologist said I’d have to start HU if they reach 1,500. He’d like to wait until I’m 60 before starting this, since women’s risk of stroke increases at that age. I was diagnosed with ET relatively young, at 43, and my first count was 697. I only take baby aspirin daily, and stay relatively active for cardiovascular health. I’m curious about what others do to feel some sense of control over this condition.

I wrote a correction today regarding my lab results that I misunderstood .

I incorrectly wrote that there was a 7.1% probability that JAK2 caused the high platelets.

My lab results stated JAK2 at 7.1% . This actually means that the mutation was found in 7.1% of the blood cells and it has nothing to do with the chance aspect of my diagnosis. That value is considered "low positive" . According to DR Google research 10-15% JAK2 mutation is a general starting point for taking action.

My doctor did not discuss the lab results with me during our appointment. I found the results on my patient portal and asked DR Google what it means.

Check out your lab results and maybe there is a positive percentage shown with the CALR results.

I hope this helps. I find this post to be useful for understanding personal reactions to medications and general tips.

I am already working on a 2nd opinion with a doctor at Mayo for understanding medical questions and medical advice.

Good luck and sorry for the confusion.

Hi,
Is this ‘ JAK 2 positive result only attributes to a 7% chance that it is the cause of high platelets. ‘ only for your case only ? Or general?
I have the CALR positive and platelets are at 607 last time we checked. Trying to find out what % of the positive CALR contributes to the cause of high platelets.

"JAK 2 positive result only attributes to a 7% chance that it is the cause of my high platelets."

This statement that I made on my previous post is incorrect. The lab report states : Positive for JAK2 V617F point mutation at 7.1%.

Instead of being a 7% probability predictor that I have ET caused by JAK 2 mutation as previously stated , it actually shows that 7.1% of the tested blood cells have the JAK2 mutation. This result is classified as "low positive". Some recommendations use 10-15% mutation levels as a guideline to make a diagnosis or investigate further.

Doctor # 1 did not go over the lab results with me. I found the results on my patient portal. Dr. Google explained what the results mean and I have corrected the erroneous information . So sorry for the confusion.

For me all the meds have really done is keep platelet levels in check. When on HU other symptoms were there and slowly increasing. Probably less rapid on HU than the last 2 years on Jakafi.
I understand the frustration of "slowing down"; just look at everything as positive and even the little things as victories and don't dwell on the negatives (I know this is sometimes easier said than done - I'm impatient with this as well).

The ET symptoms don’t get better when you are on HU?

Just do your best everyday. I doubt you are a drama queen. All of us follow a similar but differing path. Your symptoms sound similar to what I understand are common for ET. I use the Voices of MPN symptom tracker - I also feel the fatigue and lightheaded (among a few others) and they slowly are progressing and it is really frustrating. Good luck

I was put on jakavi after being on hydrea for 6 weeks and wasn't working.however as I am.taking eliquis for atrial fibrillation my consultant was concerned about a possible reaction ....so back on the double dose hydrea and 300 mg aranesp injection ( this I administer every three weeks)..other than slight nausea and metallic taste which I can cope with .its the light headed and weakness if i do.anythimg ..I honestly wonder ami a drama queen as everyone here seems to cope well...if I do simplest chores I have to sit after 5/10 mins feeling weak ..I can't spend rest of my life sitting ( I feel perfect if I stay immobile) so I just wonder has anyone suffered with this fatigue/ weakness ...I was always very active so it's against my nature to be like this

Does not have to be ET would have been better. I met a person at a recent lls conference that lives close by (he has PV) - we compare notes etc and just good to visit with somebody in a similar situation.

Thank you so much for your encouragement. One question; why do you say , ‘ I have also found it helpful to have a couple of people with MPNs (not ET) ‘?
Thanks again !