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

As I noted all circumstances are different. My doc notes as I don't have a history of clots, even though over 60 now and diagnose 8 yrs ago my overall risk is not super high. That being said I can tell progression in the symptoms associated with it. But staying mentally and physically active really helps. Live your best everyday, and I have also found it helpful to have a couple of people with MPNs (not ET) that we can get together and commiserate with. As this is not a really visible disease (this is good and bad) sometimes people don't realize or remember your situation. Stay strong

Fyi

Remember

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 !

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.

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

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

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

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).

"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.