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Essential Thrombocythemia: Making treatment decisions
Blood Cancers & Disorders | Last Active: Sep 13 11:13am | Replies (291)Comment receiving replies
I was recently diagnosed with triple negative ET, after a bone marrow biopsy. I had been on 81mg aspirin before the ‘definitive’ diagnosis. I was then prescribed 500mg Hydrea. Two weeks later my platelets went up to 1.3mil. They had been steadily climbing over a period of 3-5 years. Now on 1000 mg Hydrea and 6 weeks in my numbers are still over 1mil. My hematologist went on leave so a backup Dr. messaged my question about staying on Hydrea. That message said to also take aspirin and stay on 1000mg Hy. Which (aspirin) I was already taking. With my non-reaction to Hydrea and the triple negative aspect I wonder if I really have ET? And /or if some other med or diagnosis is possible.
Replies to "I was recently diagnosed with triple negative ET, after a bone marrow biopsy. I had been..."
I am so sorry for your diagnosis, and that your primary hematologist isn't available.
How long have you been taking Hydrea?
While some people have miraculously fast results, others -- like me -- take much longer.
I took HU for 8 months before my platelet count stopped rising.
Only after 2 years on HU has my platelet count gotten down into the normal range.
AND I started at a much lower count than you (700s).
I hope you can soon have a chance to speak at length with your hematologist.
In the meanwhile, share your concerns and ask your questions here. We've been through it too.
I have had ET since 2002 (23 years). I am 71 yo retired Nurse Practitioner. For the first 10 years no treatment (except for baby aspirin). About 10 years ago the platelets rose to above 1, 500,000 so I was started on Hydrea. It took a while for the platelets to come down, but I don't remember how long. I also am triple negative. I have had 2 bone marrow biopsies. Currently I am on Hydrea 1500mg (4 days a week) and 1000 mg (3 days a week). Doing well actually. I am active, happy and enjoying the life I have. Seeing others in my friend group and family struggle with various health issues I can see that living truthfully and facing challenges head-on without layers of wishful thinking, blaming, envy or "why me" is very beneficial for well being. Ask me anything.
Still on anagrelide (Agrylin when I started) since 2002 (thereabouts) with 1800+ platelet ct, no symptoms, random test....take 5 mg morning and night. Had a noxious episode in 2012 when hematologist retired and new young doc insisted on bone marrow biopsy (5 painful pokes) and swich to hydroxyurea. That was a nightmare with rising platelets, other blood issues, stomach problems Never saw/got biopsy results, took three months to get Blue Cross to cover second opinion/new hematoligist who agred, if it works, why switch. New oncology hematologist did bone marrow under mild sedation, thorough results, staying on anagrelide. Healthy and active aging!
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I have ET triple negative. Taking Hydrae since January, 500mg every day and 500mg every second day. Also 1 asprin daily. Platelets were over 1m in Jan slowly going down to just over 600 now. Haematologist does not want to increase levels, as it is going down, all be it slowly. I also have type 2 diabetes on a lot of tablets for that. Fatigue is the main problem. Have had ET for over 17 years, previously on Anagrelide.