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

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 !

Remember

Fyi

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

Research shows that rare cases of leukemia have been attributed to Hydroxyurea after 20 years of use. I don't remember the dosage of the drug that may cause this outcome.

I am in the process of appointments with my 2nd opinion doctor (at Mayo ) who has confirmed my suspicion that my Doctor #1 has given me questionable information. Doctor # 1 did not think bone marrow biopsy was necessary for diagnosis because I have tested positive for JAK2 gene mutation. But my 2nd opinion doctor pointed out that the lab report states that the JAK 2 positive result only attributes to a 7% chance that it is the cause of high platelets. Therefore Doctor #1 started treatment with hydroxyurea every other day even though the cause of my high platelets (450) is still unknown. Doctor #2 will do the bone marrow test next week and he left me on the drug saying it is a low dose and will be ok.

A 2nd opinion may clarify my diagnosis and has been very helpful.

Take care.

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 !

I’ve been taking it for years now. The pharmacist never mentioned I should not touch the capsules and neither did my hematologist. But, luckily I can read! Before taking the first dose I read the precautions and knew I shouldn’t touch! So, I “poured” two capsules, my dose, into the cap and toss them into my mouth followed immediately by water. I can’t be bothered by putting on gloves. I call them my “poison pills”!
No mouth sores.

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