New to Hydrea for ET

I had a trans-esophogeal echogram (TEE) to determine severity of bad mitral valve. No transfusions ever.

My platelets were flagged high since 2011, but dismissed as "stress." The absolute gem of a cardiology nurse said, "Take this to the cardiologist, and if it's not in his bailiwick, ask your GP." She wasn't being an alarmist, but I could tell she felt it needed to be looked into.

I am not going to dismiss transmission thru blood transfusion. ET patients are warned not to give blood or organs in case of transmission.

I will need a mitral valve repair, but only if the docs and insurance agree to the transcath procedure. That will not involve blood products.

You might ask if yr doc has sent your patient history to a research database. The more patterns they can identify in patients, the more targeted the research can be.

I'm sorry anybody gets this diagnosis whatever the cause.

Thanks for the feedback. Within the last year two of my friends had successful mitral valve replacements and are doing well. Good luck with your procedure.

Thanks. I took care of my mom after open heart surgery, and it was a nightmare experience for us both. My husband is not up to doing anything like the kind of care that people need after OHS, and I do not have the $$ to go to a rehab facility. So hoping the transcath repair will be approved and give me a few more good years. Dreading it.

I guess it depends on what kind of insurance coverage one has. I’m on Medicare with a Cigna supplement. I spent 16 days in the hospital, the last ten of which were three one hour sessions of Pt and Ot daily. Upon release I was contacted by an in home Pt organization and received one month of three visits per week from a visiting nurse service who took my vitals and gave me further Pt instructions. I then went into a 36 session cardio/rehab at a local rehab center.
All of the above cost me nada, all covered by Medicare and Cigna.
I was just damn lucky. I had a top notch surgeon, excellent hospital care and wonderful cardio/rehab personnel.
The bad part of all the above was the kickstart of my ET issues. Right now I’m concentrating on not getting a stroke as I don’t want to burden anyone with my care. Life plays funny, or not so funny games with us.
There’s an old expression in my faith, “ man plans and God laughs”.
Try to enjoy every day to the fullest.

I have been on Hydroxyurea 7x a week for 11 years. I am 64 and also very active. I have a small horse ranch located in the Colorado mountains that keeps me going all day, every day. I have had very few side effects from my meds. I get a little nauseous in the morning and I think I get tired more easily. But that’s about it. I wish everyone well.

Hi @judgerg. You’re quite the inspiration for anyone newly diagnosed with ET and prescribed Hydroxyurea, such as @mfeley. It’s very encouraging that you’ve been using HU for 11 years with limited side effects.
Life with ET certainly hasn’t slowed you down with having a horse ranch in Colorado. That’s a full time labor of love! But how rewarding and what a beautiful environment! Nature is healing! Thank you for sharing your story with us!
Do you take your HU in the morning or evening?

I take it in the evening because it may make me a little nauseous but not enough to wake me up.

Thank you, Lori and @judgerg! I had my first dose (500mg 7 days a week until labs say otherwise) last night and so far so good. My doctor is very encouraging that I should have good response to hydrea and I’m going to go with that and think positive. Margy

Hi Margy! When I see replies like yours it can’t help but make me smile! Your positivity is infectious. I’ve found being positive can wonders for how we cope and adapt to life changes. So keep up the good work! ☺️

Fingers cross for a great response to the HU. It has a great track record for bringing platelet levels under control. How often will you repeat labs??

I was diagnosed with ET on Feb 3 due to very high platelets and some symptoms that I took as normal. Currently I am on HU 500 daily and low dose aspirin. They also did some genetic testing and waiting for some results. On March 17 th I will have a bone marrow biopsy and then April 7th a consult to discuss a plan. After 3 weeks on HU most aches have disappeared, headaches and blurry vision and my platelets have gone down.
Presently I am in Az where I have found the HU is causing sun sensitivity and some burning on my inner thighs after riding my horse and biking. Walking my dogs lessens it.
We return to Wisconsin shortly where there isn’t much hot weather now.
This was quite a shock to get this diagnosis since I was just going in to check my vitamin D level for my prolia shot. I was feeling normal so I thought.
I’ll take this diagnosis and medicine if it means what the Hemotology doctor says that I can live for many more years. I am 73.
I’ve been reading this blog for a few weeks and finally decided to comment. I really appreciate all the enteries since the information really helps adjust to the diagnosis of cancer.