NEW ET

Hi

I am a 57 yrs female ET Jak2+

current treatment Hydrea and Aspirin.

[mhos61]

Hi Anna,

Welcome to the forum.

As a newly diagnosed patient you will find great support here. Like you, I also have ET Jak2+ and am on aspirin and low dose hydrea. I am doing very well with stable counts and no troubling symptoms. I’m nearly 63 and still work part time. I do count myself lucky, as I know some MPN patients have a heavy symptom burden.

Feel free to ask questions and someone will oblige by answering.

Look forward to hearing more from you.

Mary x

[Hidden in reply to mhos61]

Thanks Mary. I got distracted while writing previous post.

Cheers

[socrates_8]

Hey Anna...

Welcome to the club!

You'll find just about all the information that you could ever need here, and if you want some written literature, Maz (coordinator for MPN Voice/Healthunlocked), will be only to happy to see that you receive it okay.

Best wishes

Steve

(Sydney)

[Hidden in reply to socrates_8]

Thank you Steve

[Ramy22]

Hello! Everyone is great here. There is also a ‘buddy’ system that Maz organises. This puts you in touch with others with ET so you can speak with them or email them. All I worry about is the annoyingly regular trips to see Dr Blood!😀 and I’m 55 and have had ET for decades and take Hu and aspirin. Take care.

[Hidden in reply to Ramy22]

Hello Ramy22 I appreciate your words. Have your symptoms got progressively worse over time? What do you manage your platelet count at? Does this impact on how you feel? I will read more about the buddy system. I think that might help. Anna x

[Ramy22 in reply to Hidden]

Hi Anna.... I have never had symptoms (apart from itching and this is controlled) so I am fine. My plc stays around the 300s thanks to the Hu but carries on if I have a chest infection regardless of Hu and this I find interesting. In the beginning I would fret.... and there wasn’t much info about then but life goes on and I hardly give it a thought now. I always make sure I have my blood results prior to an appointment but that’s just a control thing I think.

The buddy thing is a good idea.... you’ll be fine... but keep asking and talking and sharing! Xx

[Meatloaf9]

Welcome Anna. You can find a lot of useful info here and even more nice people. Sorry for your diagnosis. I am 68 with ET Jak2+ currently on only aspirin. Best of luck to you on your journey.

[Hidden in reply to Meatloaf9]

Hello Meatloaf69 Like many on this forum I have so many questions. I am ok with the diagnosis as it is what it is. However the symptoms are driving me nuts. Have you had your diagnosis long? I appreciate your kindness Anna

[Meatloaf9 in reply to Hidden]

Diagnosed in Jan of this year. Not any real symptoms, sometimes get headaches after riding bike for a couple of hours in the heat but that may or may not have anything to do with the ET. Looking back I probably have had this longer that this year but the specialist I saw could not say that for sure.

[Hidden in reply to Meatloaf9]

Thank you for being so candid and sharing.

Anna

[Mazcd Partner MPNVoice]

Hello Anna and welcome to our forum, so glad that you have found us, you can see that the people on this forum are a great bunch, so any queries or concerns you have, please share them with us. Best wishes, Maz

[Hidden in reply to Mazcd]

Hi Maz I am comforted by having found this forum. It is tranquil knowing others understand what you are experiencing. Yesterday I visited my GP for script renewal. I explained that I was raw in my private region and that I did not think it was an UTI as pain was limited to region rather than process. So I leave with antibiotics. Last night I read on this forum a two year old post where someone was raising my condition. I almost felt some form of validation. Thankyou for the welcome. I appreciate it. Anna

[bjay22]

Welcome AnnaGarcia. I am 59 & was recently diagnosed ETjak2+ also. You’ve come to the right place to have all your questions answered. When first diagnosed I went into pure panic mode and finding this site was a godsend. The people here are very kind & caring.

[Hidden]

Hello Bjay

I agree with your comments that finding this site is such a godsend. I hope all is well with you. Do you take HU?

Anna

[Mica11]

Welcome AnnaGarcia, you have come to the right place for support. I was diagnosed with the same as you last October aged 60. I had experienced weird symptoms for a few years prior and never thought they could all be due to one illness, just thought I was 'getting old', As if!!! Most of my symptoms are now not nearly so bad or have disappeared completely. Regular exercise, lots of water your meds and the lovely people on here will keep you going!

Grace x

[Ebot]

Hi. And welcome. Please keep asking questions - there’s bound to be someone who can provide an answer or an insight. And always someone who can offer support.

[Hidden]

Thank you, Ebot.