Essential thrombocythemia (ET): When to start hydroxyurea (HU)?
I was just diagnosed with ET. I am 61 years old. My platelet count is 640k right now.
Doctor suggested I take a baby aspirin everyday and HU. I am hesitant about taking HU. I have heard of doctors waiting till the platelet count is higher to take HU.
Any insight? How bad is HU for your body, I was reading it can cause cancer too.
Thank you
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
PS. The Mayo Clinic’s own website states to wear disposible gloves when HANDLING Hydrea, due to its toxicity. Last time I checked, they were considered quite reputable if I’m not mistaken…
The effects on your skin may take a while to show, but I wouldn’t chance doing it.
Thanks Eileen! I still haven’t started. It’s comforting knowing you are ok with it. I am just doing research and getting info to be educated and feel good about taking it .
Thanks again 🙂 Ana
Thanks Jane, it is very comforting to have others share their experiences and know you are not alone. I think about it and it’s scary, but I guess if you control the platelet count we are ok.
I still
Haven’t started taking the pill , just getting info to feel comfortable doing so. I have been reading that this is the most common way to reduce the count. Thanks again 🙂 Ana
My friend has the same thing and her doctor will not prescribe HU until her numbers reach 800-900.
Doctor said the pill can give you leukemia.
Well, when untreated, ET can progress to leukemia. That's why it's so important to protect our bone marrow by taking HU.
I hope your friend will seek a second opinion.
Thanks, arecchie, for reminding us it's better to be safe than sorry.
I need to be more careful.
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
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.
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 !
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.