My platelet count has increased after a year on Hydroxyurea (HU)

ET was formerly referred to as a blood disorder. Our bodies make too many platelets. Doing the right thing, but just too much of it. I don’t know when or why it started getting referred to as ‘cancer’ and I can see on this thread that it really freaks people out. So yes, I do NOT call what I have cancer.

I was diagnosed 27 years ago and am as healthy as anybody else. I am on Anagrelide now, formerly on HU.
My hem is happy if my numbers are under 600.

27 years is a long time. I am glad you are feeling
well. You must have good medical care in your area.
I live in North East Georgia. Unfortunately in the
more rural areas your care is hit or miss. I was referred
to a great Dr. in Gainesville, Ga. So I do feel lucky.
Why did your Dr. change your medication?

It is a numbers game. I was diagnosed with ET in 2018 - high platelets. It did well for awhile at lower doses of HU, it did sometimes have large fluctuations and counts steadily increased eventually was at 2 g/ d. Then in less than 30 days all my counts, rbc, wbc, and platelets were way under normal (and I lost 30 lbs and really felt bad). My body no longer liked HU 😞. Have been on Jakafi 10 mg 2x/d for 2 years now, platelets run in the 600 to 800 range. Also should note have been on ld aspirin the whole time. Other typical symptoms are there and slowly progressing. Fortunately do not have history of clotting so still considered lower risk.
My biggest help is finding things that motivate me to be physically active; for me it is long walks with the dogs year round and skiing in the winter.

After 15 years on HU I developed locally advanced Basel cell carcinoma on my scalp and long term use ofHU apparently can do that though nobody told me that so -beware.
I see my hem thru telemed so find a good cancer center and get onboard with a doctor there and you just need to have blood work done locally. Do your homework and read up on all you can about what you have. We have to be our own advocate.

Thank you for your advice.
I see my hem every 4 months.
Get blood work done and a full exam. I was told to cover up in the sun, sunscreen, long sleeve, hat. I am not a beach person, so I do not have to worry about that. I do cover up walking the dog. I do keep myself informed. Hope having a good
Diet and exercise is helping.

Just FYI, about 15 years ago, the World Health Organization reclassified ET as cancer. Clinicians and researchers around the world advised this change because more was understood about how mutations caused platelet cells to proliferate in the bone marrow. ET is actually a bone marrow cancer.

Fine by me if folks don't want to call ET cancer. The designation did cause some controversy with a few researchers and doctors.

Maybe a minor point, but do be aware that your insurance company may think differently. Those who want to increase life insurance, for instance, will be asked if they have been treated for cancer in the past 6 months. I would be wary of answering "no" for fear of jeopardizing the policy.

Hi:
Fluctuations can be quite normal and 420 is perfectly fine insofar as HGB. You needn't worry about the spike. It happens from time to time and you learn to roll with it. Please do not be alarmed and have a great day.
Ann

Mikemp:
Sorry, I meant to say the 420 fluctuation is perfectly normal for your PLATELET count, not your HGB. My bad.
Ann

I have been taking HU for almost 9 months now. Platelets were at 1200 in March 2025 with diagnosis of ET. My dose of HU has fluctuated over the months, starting at 500 mg daily, to 1000 mg MWF, reduced to 500 daily when platelets got to 314, then 500/ 3 days on MWF but platelets went up to 446 and now 500 mg 4 days/week and platelets are rising again at 489. So my magic number might be 500 mg daily. I am on the watch and wait schedule. My goal is to take as little as possible of HU. I tried Fosomax with it for Osteoporosis but bone and joint pain got worse. I dropped Fosomax and am trying to cover Osteoporosis naturally with exercise and weight lifting as well as clean eating. The roller coaster is crazy and now a breast lump. I am trying to cope. Biopsy coming up.

@mumblipeg
So sorry you are dealing with so much I’ve been on hydroxy since 2018 and it’s kept my platelets in a good place. Jakafi was my doc’s preferred choice.. as it’s supposed to be most beneficial.. but I had too many side effects Maybe it’s an option for you. Hope
your biopsy results gives you good news. In my prayers