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

Beautifully said, nohrt4me.

Just a couple general comments about fatigue, being a drama queen, and HU:

1. If you have a heart issue on top of ET, I guarantee you will feel more tired. ET is already a strain on your body. Any other illnesses or conditions or worries add to it. I have a wonky mitral valve and scoliosis. I am aging. I am worried about my husband's cognition. Cumulatively that adds up, even if I eat well, exercise, and get good sleep. We learn to pace ourselves, ask for help (hard!), and live with a little less perfection.

2. Urging people to be strong, fight, stay positive, or "you got this" works for some people. We're all different. But I always hear that stuff as criticism: "Suck it up, Buttercup! You're falling down on the job. You're making everybody feel bad by talking about being sick. Quit bitching and get in the Positivity Parade." If you can't be honest about how crappy you feel some days on here, that's another strain and source of stress.

3. HU does make some patients feel better for awhile. I was one of those lucky ones for several years. It makes some people sick. Nobody knows why people have such differing response to it. That's cuz research goes into new drugs that hardly anybody can afford, not into helping people cope with old ones that most people take. You can actually improve life for others by being honest with your hemo about how you feel. If they hear it enough, maybe the palliative care will improve!

I hope everybody reading this has a good moment today--pet the cat, watch the birds, read a book, see a good show, eat something yummy!

Hola, buen día. Si sirve como aporte, tomo hidroxiurea hace 10 años. La manipulo como cualquier otro medicamento y la tomo del mismo modo.
Nunca tuve llagas o úlceras en la boca ni en mis manos.

I’m curious about this too. I’m 48 and my platelets are in the critical range at 1,142K. The highest was 1,394 and my oncologist-hematologist said I’d have to start HU if they reach 1,500. He’d like to wait until I’m 60 before starting this, since women’s risk of stroke increases at that age. I was diagnosed with ET relatively young, at 43, and my first count was 697. I only take baby aspirin daily, and stay relatively active for cardiovascular health. I’m curious about what others do to feel some sense of control over this condition.

I wrote a correction today regarding my lab results that I misunderstood .

I incorrectly wrote that there was a 7.1% probability that JAK2 caused the high platelets.

My lab results stated JAK2 at 7.1% . This actually means that the mutation was found in 7.1% of the blood cells and it has nothing to do with the chance aspect of my diagnosis. That value is considered "low positive" . According to DR Google research 10-15% JAK2 mutation is a general starting point for taking action.

My doctor did not discuss the lab results with me during our appointment. I found the results on my patient portal and asked DR Google what it means.

Check out your lab results and maybe there is a positive percentage shown with the CALR results.

I hope this helps. I find this post to be useful for understanding personal reactions to medications and general tips.

I am already working on a 2nd opinion with a doctor at Mayo for understanding medical questions and medical advice.

Good luck and sorry for the confusion.

Hi,
Is this ‘ JAK 2 positive result only attributes to a 7% chance that it is the cause of high platelets. ‘ only for your case only ? Or general?
I have the CALR positive and platelets are at 607 last time we checked. Trying to find out what % of the positive CALR contributes to the cause of high platelets.

"JAK 2 positive result only attributes to a 7% chance that it is the cause of my high platelets."

This statement that I made on my previous post is incorrect. The lab report states : Positive for JAK2 V617F point mutation at 7.1%.

Instead of being a 7% probability predictor that I have ET caused by JAK 2 mutation as previously stated , it actually shows that 7.1% of the tested blood cells have the JAK2 mutation. This result is classified as "low positive". Some recommendations use 10-15% mutation levels as a guideline to make a diagnosis or investigate further.

Doctor # 1 did not go over the lab results with me. I found the results on my patient portal. Dr. Google explained what the results mean and I have corrected the erroneous information . So sorry for the confusion.

For me all the meds have really done is keep platelet levels in check. When on HU other symptoms were there and slowly increasing. Probably less rapid on HU than the last 2 years on Jakafi.
I understand the frustration of "slowing down"; just look at everything as positive and even the little things as victories and don't dwell on the negatives (I know this is sometimes easier said than done - I'm impatient with this as well).

The ET symptoms don’t get better when you are on HU?

Just do your best everyday. I doubt you are a drama queen. All of us follow a similar but differing path. Your symptoms sound similar to what I understand are common for ET. I use the Voices of MPN symptom tracker - I also feel the fatigue and lightheaded (among a few others) and they slowly are progressing and it is really frustrating. Good luck