Essential Thrombocythemia: Looking for information and support

Thanks for your reply . It was helpful

As far as I know, it is forever. People with sickle cell take forever. The best thing is to do a search on the internet to see what reliable sources say. Like Mayo, Cleveland Clinic, and others

I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight and was wondering how I can just follow discussions on ET without looking at all the blood disorders.
my doctor prescribed hydrea. I opted to wait, and have been taking a low dose aspirin nightly . My platelets have been in the 500s. I was in Florida when I received the diagnosis so I haven’t been back to see my doctor. My next blood work is next week and my appointment is the first week of May.
I have been doing research regarding using vitamin D to reduce platelet count. I’m going to talk to him about it because I don’t want to go on a medication unless absolutely necessary.. if someone can add me to this thread I would appreciate it.

I've tried a few shirts, so-so fit when one is a petite XS. Sundresses are a summer favorite, so sunscreen it is.

Hydroxyurea can temporarily lower the number of white blood cells in your blood which increases the chance of getting an infection and skin cancers. So it’s important to always wear sunscreen and protective clothing when on an immunosuppressant like HU or any type of chemo therapy.

Most prescriptions will have that alert on labels, which, if you’re like me, I no longer bother reading! 😅
I have to lather on sunscreen too and found the protective clothing made for summer with built in SPF50+ protection. Have you tried any of those Shirts or Tshirts?

I saw my hematologist this week. One thing that surprised me - when taking HU, one can be very susceptible to sunburn. Anyone experiencing this?
He has me continuing daily baby aspirin, and waiting 3 months this time to see if platelets hold in the 500's. My PCP will draw blood again next month and coordinate care.

Diagnosed with ET, My age is 62 and in good health except platelets are 570 and taking Hydroxyurea 500 mg 1/1/2 and ecosprin 75 mg daily . Want to know can Hydroxyurea stop any day or life long we need to take . If some people going through similar issues, please reply . And how long one can take these medicines

Jack…that is great news.

After selling our condo we came drove back from Florida on March 17. It was a very stressful time. I saw my hematologist ten days later. My platelets were 581, headaches much less. She decided to let me have a longer break from HU until I see her again in a month….I am on Eliquis so less worry about clots.

Best wishes, Eileen

Hello Eileen. Thanks for checking up on me. I actually had an appointment with my hematologist on April 10 at that time. My platelets came down from 610 to 534 which was good as I was only on HU for two weeks. I had a great conversation with my hematologist and he also set up a meeting with the hospital pharmacist. We are having a conversation over the phone on April 17. So far, I haven’t experienced any side effects except for that first day of use and I am very thankful for that!

Me diagnosticaron Trombocitemia esencial. Tengo protesis mamarias hace 20 años. Queria saber si alguien ha investigado sobre el sindrome de Asia. quizas pueda estar provocando alteraciones en la medula.