Essential Thrombocythemia: Making treatment decisions

Please check out my comment. I retired and moved to Az in part because I thought Mayo would meet my needs. In my years of research no where was it mentioned that Mayo AZ only takes Medicare patients for certain specialties unless you were seeing Mayo MD prior to going on Medicare. Had I known this I would not have moved to AZ.

I live in N Arizona and I just applied to be a patient at Mayo Clinic in Phoenix. I also have ET. My insurance is Medicare with Blue Cross Blue Shield supplemental. They do take Medicare, but maybe not Medicare Advantage? I was able to get an appointment in a couple of weeks from now.

Hola, yo lo utilizo desde los 31 años, actualmente tengo 42.
El efecto secundario más notorio es la fatiga y en mi caso un afinamiento del pelo.
Saludos!

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.

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.

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 was on 500 mg hydrea daily for 18 months and my platelets went down from 1.1 million to 500,000.
I now take 500 mg hydrea 3x weekly on maintenance.

Now I also have POTS which is worse than ET! I tolerated hydrea better than Midrodine and Fludrocortisone for POTS. Very short of breath and balance (weak legs) are the worst symptoms. The pulmonologist took several tests and my score was low normal…
I never smoked and don’t drink so it’s not that.

I have been seen at Mayo for ET with Dr Jeanne Palmer MD (hematologist oncologist). I have medicare and a supplemental with Cigna. Dr Palmer is an excellent and compassionate provider.

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.

Yes, I agree, she is excellent and so is the staff that supports her. It’s just regrettable that I cannot have all my medical care at Mayo.