ET jak2 negative, first post

[Wednesdaylad]

Hi, first post but have been a member since early January. I'll start with a little history.

At the start of November last year, I started feeling a tingling sensation and numbness in my left arm which would last for no more than a couple of minutes. This happened about 12 times in a week. I saw my doctor who suspected I was having TIA's. He refferred me to the stroke clinic, which I attended a few days later as an outpatient.

The consultant thought i could be having crescendo TIA's, so admitted me to hospital to carry out an MRI scan, other tests and to monitor me. I was shocked to find that the results showed I was actually having minor strokes.

All the tests came back normal apart from a platelet count of 1191 I was prescribed aspirin and statins and sent home with a refferral to Haematology.

I avoided googling high platelet count until a couple of days before my appointment with the Haemotologist at the end of November. I wish I had n't. I was in turmoil with the word "cancer".

The consultant alleviated some concerns but when the medication that was going to be prescribed in a few weeks, after more tests, was a chemotherapy drug, the doubts started again.

The thing that made it worse, was the following day, i had a call from the consultant, letting me know that my blood sample the previous day had come back at 1751, she was concerned, so wanted me to start Hydroxycarbamide straight away and have a BMB. This was on a Friday and I must say it was one of the worst weekends of my life waiting to attend the clinic on the Monday to start the treatment. All sorts of dark thoughts go through your mind.

The specialist nurses were brilliant, alleviating my anxiety. To cut a long story short, i started on 500mg of hydroxy per day, with weekly blood samples, increased to 1000mg at Christmas and increased again to 1500mg after my proper diagnosis in early January.

My platelet levels have been coming down and my last blood test came back at 431. Still on 1500mg a day but blood tests monthly now.

My reason for writing this is to hopefully alleviate other members fears, who are going through the same scenario as me.

I have one question, at my last appointment I was told I was jak2 negative. What is the difference between positive and negative, why is there a difference?

Than you for any answers in advance.

WB

[Jlah]

Hello. You sound like you’ve been through a bit of a shocking time and seem to be dealing with it really well. I had a similar path to diagnosis post a major stroke. Twoish years on and things are settling down. Stay positive. This forum has been a godsend for good advice and support. Take care. Jacquie

[Jlah]

Nb. I’m jak 2 positive. I don’t know the difference sorry.

[Wednesdaylad in reply to Jlah]

Thank you Jlah,

The most susurreal thing is I have not been ill, no symptoms or side effects apart from feeling a little more tired in the last few weeks, so it's more mental.

Just wanted to put a few people's minds at ease who are going through the same experiences.

WB

[mhos61]

Hi and welcome, sorry to hear of the path to your ET diagnosis. I have posted a link to MPN Voice which gives an overview of the three mutations that are associated with ET, you can also have ET and be triple negative.

Ask your haematologist if you have been tested for CalR or MPL mutation. If not, you could suggest that you would like to be tested.

mpnvoice.org.uk/about-mpns/...

[mhos61 in reply to mhos61]

PS;

I should have said around 60% of ET patients are JAK2+, so that is the first test that is usually carried out, as in your case.

[Wednesdaylad in reply to mhos61]

Thanks mhost61

I asked the specialist nurse which mutation I had and was told jak2 negative, I assumed that was the diagnosis in it's self. Not we know what it isn't, it could still be one of the others.

WB

[mhos61 in reply to Wednesdaylad]

Being told you’re JAK2 negative is only ruling out that particular mutation. Interestingly, ET with the CalR mutation generally presents with higher platelet counts.

I would definitely ask for further testing.

[Wednesdaylad in reply to mhos61]

I will follow that up at my next appointment.

When I asked what's the difference between pos. and neg. Jak2 I was told there's a greater chance of a stroke if you are Jak2+. So assumed that was that.

WB

[mhos61]

Both JAK 2 and MPL are associated with higher thrombotic risk, CalR less so.

I think your haematologist has worked in your best interest to get your platelets down quickly with hydroxy. All the same, you certainly need further clarification.

Mary

[Wednesdaylad in reply to mhos61]

Yes, I think I have been well looked after. But would like clarification.

Thank you Mary.

Andy

[Mazcd Partner MPNVoice]

Hello Wednesdaylad, welcome to our forum, thank you for sharing your story with everyone, it does help. Best wishes, Maz

[Tico]

Hi Wednesdaylad. I hope your don't take after the folklore nursey rhyme of old! Lol,only joking, welcome to the forum and it is pleasing to see your platelets coming down so dramically,hopefully your'll have already checked out the Mpn voice site and I hope we can help with any concerns you might have. Atb, tina.🤗

[Wednesdaylad in reply to Tico]

Thanks Tina, for my sins it refers to the football team not the day of the week. ☹️

Andy

[Tico in reply to Wednesdaylad]

Ha, ha.🤣