Connect
← Return to Essential Thrombocythemia: Looking for information and support
Discussion
Essential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)Comment receiving replies
Triple Negative Essential Thrombocythemia
hi all, I have seen my platelet counts going up over past 6 years. Starting last year, Doctors started looking into it. No gene mutations identified. I had bone marrow biopsy twice and results confirmed some disorder and showed scarring. Since last October, my platelet counts have been 700 and 900 range. I started taking hydroxyurea this July but the counts have not dropped yet even with elevated 1000mg/day dosing. Has any one had similar issue of not responding to the hydroxyurea? What other options do I have? I am not even 50 yet. This thing really got me on different path now. Thanks so much in advance!
Replies to "Triple Negative Essential Thrombocythemia hi all, I have seen my platelet counts going up over past..."
@sdduan, I moved your message to this existing discussion where you can connect with many members living with essential thrombocythemia
- Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
As suggested by @eileen11108, you might also be interested in this related discussion:
- New to Pegasys for ET - advice please!
https://connect.mayoclinic.org/discussion/new-to-pegasus-advice-please/
What treatment options is your team suggesting for you at this point?
Similar story here! about to check in with Hemo and wondering if she will order BMB, NGS or any others to ascertain the diagnosis. living through anxiety, no medications, pain and wondering what the right nutrition plan would be for someone in my condition.
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.
Connect
The next step is Anagrelide or Pegasys injections. You can research them on this site.