Essential Thrombocythemia: Looking for information and support

My hair is thinner but I am not sure it is due to the Hydrea. It could be aging or hormones.

I have been on hydrea 500mg for the last 3 years . It is chemo but really has no side effects and my platelets have dropped from 700 to 425 which cuts the risk of stroke down. I do have to take asprin along with the hydrea.
hope this helps you.

I did for a brief period...then it stopped and grew back

Did you need to stop taking Hydrea in order for your hair to grow back?

Been taking Hydroxyurea for 1 year. My wife says my hair isn’t as thick, but I can’t tell.

Hi Lynn, welcome. Both @nohrt4me @huronshores have ET and have had joint replacement therapies. They may be able to share their experiences in preparing for surgery, reducing clots and stroke risk, and temporarily going off aspirin.

Is your surgeon aware that you have essential thrombocythemia?

I am looking at surgery to repair a faulty mitral valve (heart). We are all hoping this can be done trans catheter (by snaking a repair tools thru the groin and avoiding open heart surgery). However, if open heart surgery is indicated, the cardiologists tell me that they prescribe enough heparin so that aspirin will not be needed. My oncologist seems to think that as long as I stay on the HU, my stroke risk won't be any higher than anyone else in my age cohort (65+).

My main concern is that these hot shot doctors talk to each other and take the complexities of having surgery with ET seriously.

Talk to your oncologist and alert him/her to impending surgery.

That said, I have talked to other ET patients who have had no problem with joint replacement. The only one who experienced difficulty was a woman who had declined HU therapy and got an orthopedic surgeon who refused to operate until her platelet count was in the normal range. So she broke down and took the HU, and hip surg occurred without incidence some months later.

My hair started "shedding" a few years before I went through The Change, likely before ET onset at 55. It grew back whiter and finer. HU caused minor hair loss, but age and hormonal changes were bigger issues for me.

Yes the surgeon is aware but he has not spoken with the oncologist (yet). That is a next step. I have had surgery in the past without problems but it was 18 years ago when I was younger and my platelets were not as high as now and and I was not on Hydrea or aspirin then. The ET has progressed from no meds for 10 years to 1500 mg of Hydrea and 2 (81 mg) asprin daily. Also if I go off asprin then I get migraines that are 30/10 on the pain scale.

Hello - I had hip replacement surgery in mid August 2023. The surgeon communicated with my Hematologist prior to surgery and I received instructions on when to stop aspirin etc. My surgery was late in the day, so I stayed in hospital overnight. The nurse had me up for bathroom very soon after surgery. I had instruction on exercises to begin at home and was released to home the next day. Got around with a walker at first, including outdoor walks. I made certain to do the exercises, walked as instructed and had more exercises added with therapist after about 9 days. The relief from hip pain was immediate, incision healed as expected. X-rays with surgeons after care and I was soon able to walk with a cane. (I had sport walking sticks so I used those instead of a cane). The best advice I can give is to follow Doctor’s instructions, do the prescribed exercises for successful recovery. All will be well, I’m sure.