Just diagnosed with et

[Frankydafish]

Hi there im a kiwi who jst 2 weeks ago got diagnosed with et still got to see the specialist yet but its kinda sceary not knowing the full details. I know im jak2 negative but that doesn't mean anything to me at this point. Just found this site good to know theres some support. Im 41 so kinda young to have it aparently so iv been told by the doctor.

[WileyFrench]

Hi there - the first month or so after diagnosis can be a bit freaky. I was diagnosed in 2017 with ET (probably had it longer) through a routine blood test that showed high platelets. We kind of "watched and waited" and I took low-dose aspirin for a year, and then this July started taking hydroxyurea, and that's when I got very nervous - and read WAY too much on the Internet. First thing I'd advise is to not do that; this forum is far better because people here are real, and have had diagnoses for some cases decades, take the meds, and their lives are fine. I can say that I stopped being so anxious about a month into taking the meds, and things just kind of settled into their course. Wait and see what the specialist says, and you'll know a lot more. And people here will be really helpful if you have questions, too. Chances are that at your age it will just be a "monitor the situation" for a long time, and you'll carry on as normal.

[lizzziep]

Hi, it is a bit scary when first diagnosed, but at your age you probably won't be on medication, depending on your counts. Jak 2 negative is better than positive - don't know why, doctor told me that when he said I was also negative! Don't believe everything you read about the illness or the drugs, if you need to know something ask on here. I had asked Dr Google lots of things before I found this site and was VERY scared. However some years down the line none of what I read has come true! You may get some side effects from the drugs, but might not! I was talking to a lady at the clinic recently - in her 80's who had been on hydroxy with no problems for over 20 years. Anyway best wishes for the future.

Lizzie

[Frankydafish in reply to lizzziep]

Thankyou iv found this site to be a exelent place to find infi and relieve some of myvfears. Everyone has been so supportive and helpfull thanku to all

[Mazcd Partner MPNVoice]

Hi we do understand how you are feeling, it is a very scary time, we are all here for you to help and support you, and you will soon see that a lot of people have been living with their ET for a very long time. I would suggest that you read as much as you can on our website, mpnvoice.org.uk and also look at some of the videos we have of consultants and patients talking about all things MPN. Kind regards, Maz