New to Hydrea for ET

Hi lyd0218,

Please share what you find out about if they can tell if you are a bleeder or a clotter and how it how that is determined. That is a great question! Also, I was just like you and wanted to make sure if I what I have so I asked for a bone marrow biopsy but my O/H said it wasn’t necessary as “you have ET, what else could it be”. That made me not so sure of her knowledge about MPNs. You are wise to go to UCLA for more expert help. I know they have know about JAK2 mutation longer than mine, CALR. For me the bone marrow biopsy is as very easy and painless but I know others did not have that experience.

Hi,

You asked what you or your doctor needs to know regarding being at a higher risk of bleeding with ET.

Patients with ET are at increased risk of bleeding, especially when platelet counts are extremely high (over 1- 1.5 million). This is because the excessive platelets can lead to acquired von Willebrand disease, where your platelets consume and degrade von Willebrand factor, a protein essential for blood clotting. Other factors that may increase your bleeding risk include a history of bleeding episodes or a history of significant bleeding.

This assumes you're not taking real blood thinners for another condition, such as A-Fib. Also, having anemia can increase your risk of bleeding. Anemia, particularly iron deficiency anemia, can lead to more frequent and heavier bleeding, especially in women, and increase the risk of bleeding events overall.

But your doctor monitors all these things. That's why it is vital to get regular blood tests (CBC with diff and CMP also to check more things). If you have a wallet card that says you have ET and that you take HU (or whatever drug you have for the ET), and also if you are on blood thinners or chronic anemia.

The first thing ER docs will check if you are unconscious are your blood tests, or if you are conscious you tell them to look at your Medical ID card (which can be made up by several companies on Amazon and they are laminated and very nice to have, since you can put your medical dianoses on them and also your doctors names and phone numbers! For $15. or so, I think they are excellent protection and "essential" for anyone with ET or any other MPN. I hope this helps you.

Hi circawdm,

I would agree with what you said if one has ET. My O/H told me 1/10/25 I had ET, but changed my diagnosis to Myelofibrosis 2/10/25. With me taking nothing, my platelets dropped 400 and my hemoglobin went to anemia on one lab test. Strangely enough, next three labs have shown no anemia but high platelets. I really do not know what I have except CALR1 mutation.

Hi again,

If your doctor doesn't know several other things by now, especially after a BMB and perhaps consulting with a real MPN specialist, you maybe should seriously think about getting a second opinion and perhaps changing doctors. I don't know how close or far you are from one of the several cancer centers in the US - Sloan Kettering, MD Anderson, Mayo Clinic, Johns Hopkins, etc., but if you can it might very well be worth it to look at them online and call and see when you could get an appointment.

From reading hundreds of online posts in various groups, people who went to a place with more doctors specializing in MPNs found answers.

That's what I think as a conclusion to what you have told us about your path with this disease, what you are getting and not getting, and what is still left unanswered.

My 72 year old wife (Becky) has been on hydroxyurea (Hydrea) since summer of last year and has had no side effects at all. None! She started on 1x500mg capsule daily but when the platelets were not going down enough was put on 2x500mg 3 days per week then 1x500 on the other days. That helped and she is now down to 8 capsules per week.
As background, she is a very active person having competed in 15+ half ironman triathlons, run over 20 marathons and completed one full ironman.
The disease, (ET) and the medication has not slowed her down at all. Age has as she hasn't been competing for the last 10 years but again, it's age that has slowed her down a bit. We still have fun biking, running and swimming. Hopefully you will find the same thing though I know people are different and react to meds differently. Good luck,
Steve

On 4/30/25, I was diagnosed with ET with JAX2 v617F.
My hematologist/oncologist told me to take 81 mg baby aspirin and retest in 3 months. My initial platelet count was 553...my first retest is the end of July. Perhaps your HU treatment was initiated due to your high platelet count...but who knows. Glad you are being proactive and getting a second opinion.

Looking for community. People going through the same things. I’ve had complications with blood clots in my legs through the years. But overall, I think getting to the mindset that this can be treated and controlled is the goal. I’ll always be here as an ear to listen or to share my experiences with: