Essential Thrombocythemia: Looking for information and support

Hi @sugarbeez (love your username), you might be interested in this discussion related to your question about nutrition plan and ET.
- Essential Thrombocythemia (ET): foods, diet, nutrition?
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-et-foods-diet-nutrition/
Have you thought of requesting an appointment with a dietitician specializing in hematological disorders?

Thanks so much for the info Lynn! 20 years is a long time. I have just been on hydroxyurea for almost 3 months with 1000 mg per day. The counts now come down to low 500 now which I already appreciate while my doctor want to see it to stabilize at low 400. Just want to share. Have experienced some side effects (sensitive and itchy skin at the joints, fatigue, long recovery time, maybe some depression). I was very active outdoors doing cycling and hiking. Now I have learned to mend and adjust with reduced activities. I am in San Diego CA and will appreciate any resources info.

Hi @blondie65. I remember your concern over having the surgery and if having elevated platelets would interfere with your surgery. It sounds like the surgery was successful except for developing the blood clot. I’m happy to hear that you’re doing well and can hopefully put that behind you.

But wow, what an interesting turn of events for you with having your platelets drop without treatment. I’m sure you have your oncologist scratching his head over this. It will be interesting to see what your next blood tests show. Hopefully the numbers stay stable for you. That would be a nice way to start the new year. ☺️ Let me know what you find out, ok?
Have a lovely Thanksgiving.

Thank you Lori! I will review the recent link on Jak2 mutation and check back in.

Hi my name is Pam. I was diagnosed in April 2023 from a routine blood test.
My platlets were in the 700’s I was referred to an oncologist who put me on 1 baby aspirin daily. He ordered blood work which came back positive for Jax2.
I seen him again in August my platlets were 920. He only wanted me to take 1 aspirin daily. I also was having neck surgery in October and he said I would be fine to go ahead with surgery. I had surgery on October 10th. Neck surgery C4-T1. The surgery went well. I spent two nights in the hospital. I went home on the 12th. On the 13th both arms were hurting bad. I went to ER and was admitted. They did an MRI and there was a blood clot pressing on my spinal cord. I had a second surgery on the 14th. I went home on the 16th. I’m doing really good now. On November 17th I went to see my oncologist. My platelets were 466. They ran my blood twice. It came out 466 both times. They asked me if I had been doing anything differently and the only thing is that I have a lot of people praying for me. I go back to see him in February. I will keep you all posted.

Hi @taisaint, You’re absolutely in the right section…no worries. ☺️. You have a great daughter who encouraged to you get a checkup with the symptoms you were experiencing. Why is it we mother’s tend to drag our heals when it comes to our own health?
You’re very active and otherwise healthy, so I’m sure this really came as a shock to find out you have a blood disorder. Believe me, it’s not caused by anything you did or didn’t do. I can relate because a similar thing happened to me out of the blue. I was super healthy and active too…then I wasn’t! Being special isn’t all that it’s cracked up to be, right? I’d rather it came with a tiara than pills! 😅

Thank you for sharing more information. With the biopsy your doctor was able to determine factors that influenced their decision for treatment. The acquired JAK2 gene mutation is the culprit in your diagnosis. To explain things clearer than I can, here’s a good source of information regarding the JAK2 Gene…
https://www.verywellhealth.com/jak2-mutation-5217909
You’re wondering why you are not a candidate for a phlebotomy. That may still be a possibility to bring down the amount of red blood cells and hematocrit in your body if warranted. There are certain parameters for indicating this procedure and your doctor will have reasons for not doing this first. They may be waiting to see how the hydroxy impacts your blood counts.

Having faced a ‘special’ diagnosis myself, one thing that is important to remember; This doesn’t define you! Stay active, follow your same routines and keep a positive mindset.

Have a Happy Thanksgiving. Do you have a large family gathering?

HI Lori - I hope I am replying to the right section. If not, please advise. More about me... I was recently diagnosed as of 11/13. My daughter (25) encouraged me to get checked out b/c I would experience inconsistent and random fatigue and recently my feet began to swell and were tender to touch. I salsa dance 4 days per week and attributed my feet to practice. After receiving a full CBC with my primary, I was referred to a Hematologist. The bone marrow biopsy determined Jak 2 mutation and that I have both PV and ET with an iron deficiency as well. I knew I was special and both both rare disorders [insert sarcasm here]. I am 45, and to my knowledge, live a majority healthy and somewhat active life style. I try to eat healthy and splurge in moderation. This is such new diagnosis for me, I am trying to learn more about my conditions. The current treatment plan is Hydrea and daily dose of Aspirin. I submitted a inquiry with the Hematologist b/c I am not clear why I am not a candidate for Phlebotomy.

Good morning, @taisaint. Welcome you to Mayo Connect. You’ve recently been diagnosed Essential thrombocythemia and Polycythemia vera.
Both of these are blood conditions where your bone marrow is producing too many of a specific blood cell. In the case of ET there are too many platelets which can cause clotting issues. With PV there are too many red blood cells which can also have its share of problems.

I’m posting links to a few articles below to get you started on information. The articles are from Healthline.com. They are well written and give a good overview of ET and PV without overloading you with more than necessary at this point.
https://www.healthline.com/health/primary-thrombocythemia
~~
https://www.healthline.com/health/polycythemia-vera
~~~

Both conditions of PV and ET may be indications that your bone marrow, which is the central blood manufacturing site of body, is compromised and not able to produce healthy blood cells. Both are symptoms of what is called Myeloproliferative neoplasms MPN. There can be changes taking place in the bone marrow which can alter the normal DNA division to allow for uncontrolled cell division.
Here’s more on this disorder and how it relates to PV and ET.
https://www.healthline.com/health/cancer/myeloproliferative-disorders
Do you mind sharing a bit more about how you were diagnosed? Have you had a bone marrow biopsy or blood work for possible mutations? Were you having symptoms or was this found with a routine cbc?

I am interested in resources for ET. I am newly diagnosed with ET and PV. All info is appreciated.

I have a similar diagnosis. At 49 yo I was diagnosed with ET. I am 69 now. So I have had it for 20 years. In the past few years I was found to be triple negative in gene mutations. I have been on hydroxuria for the past 10 years. The dose varies but mostly 1000-1500 mg per day. Platelets hover around 600,000 to 800,000. The docs seems comfortable with this. I take an aspirin 81 mg daily. My advice is keep moving, stay well hydrated, eat healthy, limit alcohol and see an expert in this rare condition. I occasionally go the Mayo in Arizona to see Jeanne Palmer MD. I get my blood drawn once a month and see a local oncologist every 6 months. Good Luck. I will send you an excellent resource.