Essential Thrombocythemia: Looking for information and support

Hello @kapow and @winmil99. Welcome to Mayo Connect! I thought I’d include both of you in this reply since each of you just recently joined the forum with a new diagnosis of Essential Thrombocythemia.

ET can develop slowly and often people don’t require any medication or treatment initially. However, having too many platelets can cause strokes and other serious issues. So your hematologist will help you decided the best plan of treatment to avoid health risks.
Often the first line of treatment can be a simple daily aspirin to keep the blood thinner. But for some people the risk can be greater and aspirin alone won’t be enough to keep the platelets from sticking together and forming clots.

If the proliferation of cells becomes too high, that’s when medications such as Hydroxurea or other treatments come into play by helping the body to produce fewer cells to keep the balance in check.

The internet is full of rabbit holes that can lead us to anxiety producing sites! Most of it won’t even relate to you so it’s best to steer clear. But, since knowledge is power, I’m posting a few credible informative sites for you to read about your newly diagnosed blood condition.
National Institute of Health:
https://www.nhlbi.nih.gov/health/thrombocythemia-thrombocytosis
Leukemia & Lymphoma Society
https://www.lls.org/myeloproliferative-neoplasms/essential-thrombocythemia
Very well health.com
https://www.verywellhealth.com/treatments-for-essential-thrombocythemia-4058528
We have several members who also share this blood condition where the body makes too many platelets. So you’ve come to the right place to meet up with members @eileen11108, @getti @kto1452 @mortysdad @nohrt4me @dwlowrance @paulhayne and many others.

Here are links to a few of the many discussions on ET where you’ll bump into these members: ~High Platelets https://connect.mayoclinic.org/discussion/high-platelets/

~ How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?
https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/
~High platelet count. What does it mean?
https://connect.mayoclinic.org/discussion/high-platelet-count/
You can also type in ET or Essential Thrombocythemia in the search window above and many more mentions will pop up for you to read.

The 3 of us are very close to the same age. I recently turned 69 and just celebrated my 4th ReBirthday from a bone marrow transplant. I had AML, a very aggressive from of leukemia. To that point I only had Vitamin D in my medicine cabinet and loathed taking any medications! I lived a very ‘clean and healthy’ life but still got a blood cancer. So I can understand any reluctance to take meds. But sometimes they are necessary to restore our health and to keep us active. We start from a new benchmark and go forward. ☺️

@winmil99, your platelet level is 543 and your Hematologist would like you to take HU, @kapow, what was your level when you started the Hydroxurea?

I am about to turn 70..active healthy woman . Vegetarian x 50 years. Run, kayak, and practice yoga x 50 yr. Routine blood work reveals plt trending up x 2 yr now..430- 602 now at 543..I was referred to hematologist who told me my diagnosis is prob ET. ..blood smear reveals JAC2 pos. But BCR/ABLI MRNA neg.. will ge getting bone marrow test soon…My Dr wants me on asa daily and now wants me on Hydroxyurea …I do not want to take that drug..It just bothers me to take a chemo…are my plts high enough to be warranting that drug?Is it the JAC2 pos diagnosis that needs the drug? Just starting to read about it. ..any info is helpful. Thanks , cathy

Hi everyone. I am a 68 year old woman, physically active with controlled asthma. I just recently had a small stroke caused by a blood clot in my carotid artery. I have had surgery to remove the clot, and have been able to return to my life with no lingering after effects from the stroke. (My whole right side had gone numb, and I was unable to walk, but it all has returned to normal) But as a result of this they finally looked more closely at my bloodwork, and discovered that my platelets have been elevated for the past 4 or 5 years. A genetic test was done on my blood and I was told I have Essential Thrombocythemia. But they took a bone marrow biopsy and aspiration the day that I was told. Those results are not back yet. I am asking for help in knowing what questions to ask of my Haematoligist. (She has started me on 500 mg of Hydroxyurea which I have been taking for a week with no siginficant side effects and I am having blood tested weekly right now.)

Bueno saber! Tomo aspirineta también.

Hola, soy CALR también, tomo hidroxiurea desde hace 9 años. Actualmente tengo 40 años.
Tomo 1 gr 6 veces x semana y 1,5 gr el día restante. Además una aspirineta diaria.
Sin efectos secundarios x ahora, salvo el cansancio.

I'm also CALR. Started on 500 mg HU daily when platelets approached 800. Took a year and an increase to 1000 mg M-W-F to get them to 400s. That's where I've been for the last five years (I'm 69 now) with one or two jumps to the low 500s. Very mild side effects with HU that exercise and diet changes helped.

Doc said that CALRs are less prone to clotting, so she's happy with mu maintenance dose. Wondering what your hemo's platelet target for you is.

Also, seems to me that CALR patients take longer to respond to meds than those with JAK2. Anyone else notice this?

I'm so glad HU is working for you and you're not having side effects.

I was diagnosed in November '22 with the CALR mutation and have been on 1500mg/daily of Hyrdroxyurea for a while to bring my platelets down from 1700 into normal range with an elevated white blood cell count the whole time, but then when it was eased up to 1000mg the white blood cell count went back to normal, but the platelet level worked back up into the 500's, so now I've been on 1000mg 4 days per week and 1500mg 3 days per week to see if that gets it back down without raising the white blood cell count back up. Going every 6 weeks for a blood draw now. No side effects the entire time, except for some bloating for the first couple weeks from the Hydroxyurea. I'm very active and have not lost any energy or had weight gain.

Yes, ultrasound, needle biopsy and follow up ultrasound a year later + labs that showed normal thyroid function. They will ultrasound again in a few years unless changes. I think thyroid function tests will be ongoing. I told my primary I'd rather not have another specialist involved unless it was necessary, so I nixed an endocrinologist for now. These people are so silo'd into their specialties that it becomes a full time job trying to coordinate communication. Already got a primary, hematologist, cardiologist, and dermatologist.

Hi Jewelfaux, I think the answer about "does it make a difference to have diagnosis done via blood test or BMB" is "it depends". When I first saw my MPN specialist roughly a decade ago after high platelets and Jak2 mutation, I was told that based on blood work, ET was the probable diagnosis. My doctor advised that sometimes other MPNs (PV, MF) can present similar to ET in the bloodwork and the only way to truly diagnosis ET is via a BMB. Having said that, he also advised at that point, regardless of diagnosis, his treatment plan for me would be the same at that time (which was aspirin only).

I opted not to have a BMB at that time. As the years passed, I continued to ask about BMB, with generally the same response from my specialist. I did express concerns about potential progression, and he was clear that the BMB would be the best way to better understand this, as what can be uncovered in the blood work is much more limited than a BMB. I ultimately opted for the BMB, which showed that I had signs of both ET and pre-fibrotic MF, which to me was very important to know. Treatment has come a long way in the last decade, and as I understand it, interferons can be disease-modifying. So with the potential of MF on my horizon, I have been contemplating this course.

So the "it depends" answer is really: what is important for you to know about your ET/MPN? It is not "required" per se, but can be extremely valuable. I don't regret waiting to have one, but I am also glad I ultimately did. Knowledge is power.

Hugs to you my friend.

Laura