← Return to New to Hydrea for ET

Discussion

New to Hydrea for ET

Blood Cancers & Disorders | Last Active: Apr 12 5:25pm | Replies (96)

Comment receiving replies
@smyles73

I’m only 51 and I have been taking HU for Bout 3 years now and my dosage is crazy M, W,F 1000mg and T,T,S,S 1500mg. My platelets are still Very High.diagnosed with ET and Jake2 Mutation! What am I doing wrong?

Jump to this post


Replies to "I’m only 51 and I have been taking HU for Bout 3 years now and my..."

I'd say it's time for a discussion with your oncologist.

Have you seen any reduction in your platelets over time?

The same happened to me but ok for now on jakifi.I am 75 and hate to see someone like you at 51 with problems.Hopefully they will find a cure one day.Stay strong you are not doing anything wrong.keep on your Doc.

I suggest you get a consult with an MPN specialist.
It does seem like a pretty high dose of HU.
Best wishes, Eileen

That’s a lot of HU you’re taking. How high is your platelet count? Are you exhibiting any side effects at your current dosage? Have you had any bone marrow tests to rule out other issues? At your current dosage that you indicate you’ve been on for three years, you should be seeing some positive results. What does your Hemo/Onc say??

You are not doing anything wrong. I have been on HU for 4 years now. The first two years I have been on and off the med to see what happens with my platelets. But the last two years I have been on it, started with a lower dose of 500mg. It goes down to 600 and goes back up. I tried 1000mg and went down to 569 and went back up to 800 sometimes 900. Now I am on 1500mg that's getting the best of me, the headache and tiredness is out of control. I have an appointment next week to see what 3 dose has done. I have tried Anagrelide but stopped it 1 day later because side effect was heart palpitation. Sometimes our body doesn't respond to how we want it. We stay positive and look for another solution. Its a fight we going to have to put up with for a while. Hung in there, wish you all the best.