Hello there @Ljj, welcome! Iāve responded to your longer post, and want to second what @DuncanB says about there being many folks around the forum who live with Essential thrombocythemia ('ET'), should you end up diagnosed with it. Letās hold out hope that you donāt, right?!
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Thank you so much, everyone had been so lovely, much appreciated.
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Thank you, yes definitely fingers crossed, hopefully working towards getting some answers. But boy the waiting is torture!
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Hi, Iām new to the forum. I joined up because I have been monitored by my GP for nearly 6 months because of high platelet levels and white cell count. He sent my results to a haematologist and he requested a test for Jac2. I have not had the results to date but I have now been invited to a face to face appointment with a clinical haematologist tomorrow. Obviously, Iām fearing the worst so will be attending with trepidation. Any advice folks?
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Hi @BrianP and a warm welcome to the forum.
You will find people here who really understand what a blood condition means.
It will be a worry being invited to a face to face haematology appointment and itās completely normal to fear the worst.
My thoughts are if you possibly can, donāt over think things. Not easy I know.
If there is someone who can go to the appointment with you armed with a notebook and pen who can act as a scribe thatās invaluable.
My wife has always done that for me since being first diagnosed in October 2023. Having her take care of that let me completely focus on listening.
Hope that helps and do let us know how you get on when you feel up to it.
Take care
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Hello there @BrianP, welcome to the forum at what must be a worrying time.
I canāt really add anything to the great tips @DuncanB has offered and would say taking note and sharing any odd symptoms like unusual infections or bleeding you may have had can really help when seeing a haematologist.
If youād like to speak with the Blood Cancer UK specialist nurses before your appointment they can be called on 0808 2080 888. They might even still be available today, but should be there again from 10 am, perhaps before your appointment?
Hope it goes well with the haematologist and do please let us know how you get on.
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Hello @BrianP
Thank you for taking time to send your post into the forum
I can see youāve had a number of responses - and i echo these
Please do feel free to let us know how things go
Take care
Kind regards.
Mike
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Thank you to all the responses to my first post. You have made me feel welcome and reassured. My appointment at the clinical haemotology and oncology unit is at 10.30am tomorrow. I will update my post following that appointment. Many thanks, Brian
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Hey @BrianP great to see you here. I was sent to a hematologist in August of 2025 due to my primary care physician noticing increasingly high levels of platelets. An initial blood test showed that I had a JAK2 acquired mutation, with the V617F mutation form. I was subsequently sent for an additional test, a bone marrow assay, that confirmed the blood testing. I have been diagnosed with Essential Thrombocythemia (Essential thrombocythemia ('ET')).
It is scary not knowing what you have and what it means. In my case, this has turned out to be something positive. Finding out that I did not have a very bad disease such as leukemia really relieved my stress. I discovered that with this diagnosis, the hematologist prescribed treatment (in my case, Hydroxyurea, which has lowered my platelet levels, and which has been shown to lower risk of bad consequences such as stroke and heart attack). I also learned that patients with this diagnosis do not have marked reductions in life expectancy. In my case, I have monthly hematology appointments, where they conduct an extensive number of blood tests to assure that my platelet levels are lower (they are) and also assess levels of other key blood levels. These docs are very skilled at adjusting the medications, too much platelet reduction causes problems, as does too little. Mine have been very clever about ways to calibrate the dosage.
The only negative effects that I have experienced through this process is that I have noticeable fatigue at timesābut I do not really know how much of that is due to the Essential Thrombocythemia, the treatment, or my other chronic medical condition (Coronary Artery Disease) that can also lead to fatigue. Or maybe my age.
Best wishes to you. In my experience, the hematologists really know what they are doing and they are experts in these conditions. They will assure that you get the right medications if that is necessary, and will be watchdogs for side effects. What I have learned, both from my own experience and my interactions here on the message board, is that the hematologists may not be great at helping us manage the fatigue, the worry, and the uncertainty that accompany these conditions. But the people here have lived experience and are supportive.
Best wishes to you. I hope you have a very capable and caring hematologist and that whatever diagnosis you receive, you will find ways to live a positive and long life. I am 71 years old and am grateful to be alive and for the support I receive from my healthcare providers and the people here. I am working full time and enjoying my life with my family.
Bill
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Hi Bill, thanks for your response. it is reassuring that there are people here that have gone or going through this process. Iām hoping that my consultation today will put me at ease or at least provide me with some answers moving forward. Iām 73 and have the usual issues with growing older such as high blood pressure and cholesterol which are controlled with meds. If I need more meds then so be it. Thanks again, Brian.
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I thought I was perhaps the oldest on the site at 71, congratulations on making it to 73! Best wishes on your appointment today and the unfolding process to follow.
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Well I got to the appointment just in time due to a RTA closing most roads in the town. My Jak2 test was positive and I have been diagnosed with Myeloproliferative neoplasms ('MPN') with a mix of VP and Essential thrombocythemia ('ET'). I have been prescribed Hydroxycarbamide and will have to have regular blood letting sessions. It was a lot to take in and I had to go alone as my wife was ill today. My next consultation is in 2 weeks time. At least I know what the situation is now so preparing to move forward with treatment. Thanks for your support everybody. Brian.
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Oh, @ProfessorJAK you are a mere spring chicken.
I am 76 yrs old and we have had several people in their 80ās and 90ās.
I am fitter now (not healthier) than I have ever been and had lots of adventures this year.
Who said age is but a number??
Look after yourself.
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Thanks for the update @BrianP
Never great when you get a diagnosis.
On the other hand it does allow a plan to be put in place for treatment.
Sorry to hear about issues getting to the hospital because of the RTA and Iām sure that you werenāt the only one who was struggling to make their appointment time.
Take care
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Your post made me chuckle @Erica
Itās great to hear that youāre fitter although not necessarily healthier than you have ever been.
I find being outdoors and walking very therapeutic
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@BrianP Sounds like you are on the right track and this will unfold. I hope it goes as smoothly for you as it has for me. Be well.
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@Erica You are so lovely, I would have guessed you were in your 40s! But yes, age is just a number. We folks with the high age numbers may still have a lot of vigor and years in us. Be well.
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Hello again @BrianP, thanks so much for keeping us posted. I must say, Iām really so sorry to read that you ended up diagnosed with a JAK2 gene mutation and Myeloproliferative neoplasms ('MPN').
While Iām glad youāre relieved to know what youāll be living with, itās still a lot to get our heads around. I remember well being diagnosed very similarly to you in 2023.
If I may just share the Blood Cancer UK information about Myeloproliferative neoplasms ('MPN') where you can read further about Essential thrombocythemia ('ET') and Polycythaemia vera ('PV'): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Hereās some great BCUK information about the treatments we tend to have, including phlebotomy and hydroxyurea: Polycythaemia vera (PV) treatment | Blood Cancer UK
And perhaps you might like to read how others with Polycythaemia vera ('PV') get on in this long thread full of lovely survivors (full disclosure, I started this thread on my day of diagnosis): Now part of the polycythaemia vera posse
Please remember that you are most certainly not alone with that diagnosis and you will find many people here who will know what youāre going through. Please reach out to others around the forum using the search box at the top, and do feel free to ask whatever you need to know and share how youāre feeling. For many people it can feel like grief or loss. The forum is here to support you.
You can also call the lovely Blood Cancer UK specialist nurses who can answer medical queries and point you towards other resources. Give them a free call on 0808 2080 888.
Hope that helps a little @BrianP, please keep us posted about how you get on.
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Thank you for the info Duncan. Early days for me, day 2 of chemo meds. I will update as I progress. I expect to be making friendships with the other regulars at the Haematology and Oncology unit as time goes on. Brian
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Youāre most welcome @BrianP, I hope the transition is smooth for you, but do keep note as your haematologist may be the type to be interested in how their treatment affects you.
Actually, something recommended around the forum for those of us living with Myeloproliferative neoplasms ('MPN') that may be of interest to you are symptom trackers, including this tool and this free phone app from MPNVoice, another organisation you may find useful: https://www.mpnvoice.org.uk
Definitely make friends at hospital, I love that. Like being a regular at the weirdest cafƩ! I got to know some of my nurses too and it really helps, being greeted warmly and with recognition when you pop in for phlebotomy.
Speaking of, if I may share just one last tip itās to drink lots of water the day before and morning of phlebotomies as I was told by specialists that it helps plump up our veins and thin our blood, making it easier for our nurses too.
Keep us posted @BrianP, and do look further around the forum.
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