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DiscussionEssential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)Comment receiving replies
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Sounds like your doctors are doing all the right things. At the beginning I also had frequent blood tests to see if HU was doing the job. I also take a baby aspirin. Finally after many ups and downs, I'm on 1,000mg HU and baby aspirin. First year was toughest, my gut didn't like HU, but now it got use to it. My platelets are in normal range and holding.
Hi @kapow
I am 79 and was diagnosed a year ago with Essential Thrombocythemia and JAK2 mutation. When you get the bone marrow biopsy results ask your doctor to explain it all,
Make sure you are drinking minimum 64 ounces of fluid daily to help clear toxic effects of Hydroxyurea.
Best wishes on your journey, Eileen
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?