Connect
← Return to Essential thrombocythemia (ET): When to start hydroxyurea (HU)?
Discussion
Essential thrombocythemia (ET): When to start hydroxyurea (HU)?
Blood Cancers & Disorders | Last Active: 12 hours ago | Replies (89)Comment receiving replies
The best comment was to listen and ask your trusted doc. Not chats. Some people will over or under react. Everybodies situation can be different. I was on HU for 5 years with no issues (from taking or from handling, etc); have since transitioned to Jakafi. I'm fortunate to have really good docs in my area and am now with one of the leading ones in the field.
Educate yourself, there are lots of good resources MPN Research Foundation, Voices of MPN, Leukemia and Lymphoma Society, etc
Good luck with your journey and don't live in fear, find things to give you motivation - mine are my dogs, hiking, skiing, and of course faith and family
Replies to "The best comment was to listen and ask your trusted doc. Not chats. Some people will..."
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
Connect
Thanks for your input. Yes it is scary , am I going to have to a stroke, heart problems or whatever?!? . I just met this doctor not too long ago through my medical group.
I’m just a little bummed out with so much different information !