Hi there just had blood test result what I had to go private for as my gp tried to tell me it was secondary but had jak 2 mutation come back as positive
My latest bloods was hb was 18.9 hct0.58 also my white blood cell was 13.51 my platelets was 334
Does this mean with positive test I have p vera
A great big welcome @djleighp to our forum.
Unfortunately we are not qualified to make a medical diagnosis, that is a question for your GP or consultant.
You do not mention a consultant and if you feel that you would like a referral to one then perhaps you might consider that.
It sounds as if it is a worrying time for you and I find the waiting and not knowing a very anxious time.
Please do let us know how you get on.
The Blood Cancer UK support line is there for you on 0808 2080 888
Really look after yourself and be kind to yourself.
Iâve been referred now but my gp wouldnât do the jak 2 test as they was saying it was down to smoking
So I went private and had jak 2 617f test done private came back as positive
I had heart attack in 2020 so I reckon I had Polycythaemia vera (PV) then as was only 47
Iâm awaiting a referral donât know how long that would take
Hi @djleighp itâs the waiting and not knowing that are so hard arenât they.
I always try to be pleasantly assertive and ask all my fears, questions and practicalities and ask for clarification as I do not speak medical speak.
I write all my questions down so I feel organised
As for how long your referral will take personally I think that depends on the type of referral and on your hospital and waiting times.
Unfortunately we cannot comment on medical results as they depend on your whole medical history.
I attach some information from the Blood Cancer UK website for you which includes questions you might ask.
Just diagnosed with blood cancer: now what? | Blood Cancer UK
Please do let us know how you get on and look after yourself
Hi @djleighp
Welcome to our forum and thank you for your post. We are so sorry to hear that you are seemingly having a bit of difficulty with getting a formal diagnosis and that you are worried about Polycythaemia vera (PV).
As Erica mentioned we are unfortunately not able to give direct medical advice, however we would advise you to perhaps make another appointment with your GP and explain what has been found in your private appointment. If a referral has not already been made, you could ask them to refer you to haematology. Questions you might like to ask your GP could be:
Ideally, you would be referred to haematology and they would create an individualised plan for you based on your test results and this would include answers to monitoring and treatment discussions. You can find further questions to ask your GP on the bottom of our page Blood cancer symptoms and signs | Blood Cancer UK. In addition to this, you could find more information on Polycythaemia vera (PV) on our page Polycythaemia vera (PV) | Blood Cancer UK. This includes what Polycythaemia vera (PV) is, tests, prognosis, treatments, looking after yourself with Polycythaemia vera (PV) and living well with Polycythaemia vera (PV).
If you would like to talk things through with one of our support team, please feel free to contact us on 0808 2080 888.
We are open until 7pm today/ on Tuesdays, 10am â 4pm on Mondays, Wednesdays, Thursdays & Fridays and then 10am â 1pm on Saturdays.
Take care and warm wishes,
Emma (Support Services Nurse)
Well been told that Iâll have to have twice weekly venesection at Solihull hospital and that I will go on hydroxyurea even though I didnât wanna go on this but they assured me itâs safe gotta have bone marrow biopsy on n Monday Iâm just overwhelmed with all of this
I am sure others have shared your fears, thoughts, feelings, emotions @djleighp the unknown is very scary to me.
Be kind to yourself
Hi I have recently been diagnosed myself and suspect that I have had it for many years now looking at all the symptoms involved with this disease. I had to look into the problem myself as no one was looking at why my platelet count was high and in September was getting burning sharp pains in my toes periodically For about three weeks before hand and bad reflux which I never had and then ended up in hospital with nstemi infarct
At this stage nobody was looking at my high platelet count that I have had for a long time now so after leaving the hospital from all my tests e.g. chords and angiogram I ended up with a clot and thrombosis vein in my cannulated arm so I asked the doctor to send me to a haematologist where are them got diagnosed? So I am now freaking out like you not knowing what the future holds but constantly very fatigued with achy joints and bones as well my vision has got worse. It is a lot blurry than before but as I said now I look at all these symptoms. I know I have had it for a long time untreated and wondering what the outcome is like with having this disease for so long and not having any treatment other than Blood clots which I have obviously thrown and many years of headaches itâs hard to get your head around all this stuff all at once and you always think of dread as we want the years to come to be full of hope as Iâm thinking like me I have worked up until this point and just now want to enjoy myself hoping itâs not going to be cut short
They are my thoughts excatly and when u foto the appoint you see really ill people and u start to think is that gunna be me and it is very heartbreaking with me I look after my dad and all I can think whoâs gunna look after me dad if anything happens to me
Hello there @Shaz1, welcome to the forum. I see youâre already finding it useful to share your experiences and read how others are getting on.
Iâm so sorry that youâve been diagnosed after many years of experiencing fatigue and other symptoms, sounds like from having elevated numbers of platelets. My diagnosis of Polycythaemia vera (PV) was found after various blood tests and a bone marrow biopsy showed I had raised platelets and other blood cells.
May I ask what your specialists say about the symptoms youâre living with and how the diagnosis youâve been given will be treated? I hope your platelet number comes down soon and your fatigue fades. Have you found anything helps your energy levels?
Iâm sure there are many people around the forum who understand how you might be feeling and can offer advice @Shaz1, you only need to ask.
Oh @Shaz1 it sounds as if you have a lot of fears and questions to ask your medical team, although we know blood cancers are very difficult to diagnose as the symptoms are so generic.
Hopefully blood cancer charities are winning at raising the profile of the symptoms.
I just gave myself the fourth injection of the Pegasys therapy so just waiting to see how that goes as I am to have blood test every two weeks till the end of January to see how things are progressing and to keep an eye on my kidney function as levels have changed slightly after the two weeks initially of the injection
They are just saying that all my symptoms are normal for this condition. Not much we can do about any of it
fatigue and breathlessness I find the most annoying and all I can do is rest when I get tired as I am very used to being active and on the goal all the time
also the blurry vision is annoying as my eyesight was good up until about 18 months ago I started to notice it diminishing and now Iâm putting two and two together I understand why as it is part of this condition.
I find it a little alienating as well as I donât know any body around my area that has something similar and I donât know how to find out if there is and where they might be and if theyâd like to get together and have a conversation about it all to support each other
Hello again @Shaz1, I can see youâve been keeping note of changes and side effects youâve been experiencing. This is great as you can share what youâve noticed with your specialists like dear @Erica suggests, which in turn can benefit your treatment. I keep a little diary of my Polycythaemia vera (PV) and hydroxyurea symptoms so I can see how they vary and then let my haematologist know.
May I ask what diagnosis youâve been given? No worries if youâd rather not say. I can direct you to Blood Cancer UK information and research relating to your specific blood disorder. You might also like to check around the forum for others living with the same condition as you for their lived experiences.
I missed it whilst reading your comment the first time but you survived a heart attack?! Glad youâre here to tell the tale! I also survived a âmyocardial infarctionâ many years ago and itâs definitely had an effect on how healthy and active I try to be. Perhaps thatâs your experience too, or maybe yours is still rather fresh and youâre still recuperating, in which case I wish you a speedy recovery 
As for feeling alienated, if Iâm assuming correctly from you joining this forum, youâll find many of us here with rare blood disorders sharing what symptoms and medicines we deal with and maybe even some tips of ways to help with those. Even just sharing how we feel here can be most helpful I find, I hope it does for you too @Shaz1.
Yes, I live in a well populated area @Shaz1 and I did not know of anyone with any type of leukaemia, we are a forum family on here
Hi thanks for the reply. I was diagnosed with Jak 2 positive Essential thrombocythemia
My nstemi infarct was in September and it was quite mild. I wasnât even going to Hospital but my daughter made me and I thought nothing of it until I looked into why my platelet account had been so high for some period of time and assuming now That I had some sludge causing this issue at the time luckily it wasnât anything major and no damage to the heart from any of the tests that I have had done following it so heart is healthy at this stage unless of course I throw another clot fingers crossed of course
My bones do get sore a lot and I get a lot of headaches and unfortunately the headaches are associated with the condition and side-effects from the drug treatment but have put up with them. Just thinking they were natural and part of getting older just more conscious of it now that Iâve been diagnosed and knowing itâs one of the side-effects Itâs just been funny. Now leaking all the symptoms together that Iâve got over the years and grouping them together and putting them under this umbrella called Essential thrombocythemia (ET). Also hadnât heard much of any neoplasm blood cancers over the time that I have been working in the medical profession so never thought much of the symptoms
Heâs important to talk to people to get things off your chest sometimes specially initially when you are in shock hearing of this one minute you think youâre healthy next minute this is in your face. Itâs just hard to get your head around sometimes. I hope you are doing okay.
Oh Iâm so glad that your heart attack was quite mild @Shaz1, and your daughter made you go to hospital! Of course, any heart attack at all is a big deal. Iâm glad there was no major damage to your heartâthat was my experience too, minimal scarring, thank goodness!
My heart attack took me some time to be at peace with. It occurred in my 30s due to a clot and was completely out of the blue as I was fit and otherwise healthy. But, like you being diagnosed with Essential thrombocythemia (ET), since my Polycythaemia vera (PV) diagnosis I canât help but think my heart attack was an early sign of the blood cancer doing its thing. The hospital back then didnât check for potential causes like Myeloproliferative neoplasms (MPN) so Iâll never know.
So youâre living with Essential thrombocythemia (ET). Welcome to the Myeloproliferative neoplasms (MPN) club! Not a group Iâd ever choose to join but Iâm glad other âmembersâ are here. Maybe youâve looked around the forum but there are many of us with Myeloproliferative neoplasms (MPN) such as Essential thrombocythemia (ET) sharing experiences. You are most definitely not alone and people here really understand what youâre living with.
I do get the impression that some medical experts havenât heard of Myeloproliferative neoplasms (MPN) though, or donât know their potential symptoms and side effects. I was fortunate that my family doctor already had patients with Myeloproliferative neoplasms (MPN) and so she got me tested for the JAK2 gene mutation as soon as I told her about a family member of mine being diagnosed with an Myeloproliferative neoplasms (MPN).
Perhaps youâve read as much as youâd ever want to about Essential thrombocythemia (ET) but I think the Blood Cancer UK is really great and youâll find information about those symptoms youâre experiencing too: Essential thrombocythaemia | Blood Cancer UK
Something my haematologist told me which I find very reassuring is that we are likely to die with our Myeloproliferative neoplasms (MPN) rather than from them. They shouldnât shorten our lives if we follow treatments and make slight adjustments.
For me, since diagnosis with a chronic and rare form of blood cancer, the idea that it probably wonât be the end of me is really helpful. I feel like I can still plan ahead and hope for a full life despite living with Polycythaemia vera (PV). Hopefully that might be reassuring for you too @Shaz1.
