Newly diagnosed

Recent diagnosis
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Hi my name is Steve.

I have just been diagnosed with Polycythaemia vera (PV) , Essential thrombocythemia (ET), & JAK2. It seems my GP new from blood test 3 years ago I had high red blood cell count but did not refer me to haematology. After resent problems and a blood test the GP has now refer me to haematology.

Now haematology have explained everything to me, & they are going to start me on Hydroxycarbamide.
After speaking to the consultant at the Hospital I feel responsibly positive for the future.

At 71 years old I have a wonderful family, & had a adventurous wonderful life, but there is still more to see and do, and need many more years.

Thank you all in advance for help and support i may receive in the darker times I may have.

Steve.H

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@Steve.H
Hi!
Welcome to the group, although as nice as it is none of us want to be in.
I was diagnosed last year with Essential thrombocythemia (ET) and the jak 2 mutation.
First few months was awful and a constant worry. Now a year on I’m ok, have the odd bad day but take that time to list out my questions for my next appointment with the consultant. Currently on aspirin and next year they want to put me on hydra which I’m not overly happy about but will see how I get on.
Please take care of yourself.

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Thanks for your comment. I will try to leave comments on my progress. At the moment i am on blood thinners due to a unprovoked DVT 18 months ago, so hydroxycarbamide is the next option for me.

In the words of a great philosopher live long and prosper :grinning_face:

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Hello there @Steve.H, a great big welcome to the forum, fellow Myeloproliferative neoplasms (MPN) survivor. I’m so sorry to read of your diagnosis, sounds like a double one at that, but I’m very glad you found the forum.

You’re not alone in living with Myeloproliferative neoplasms (MPN) and you’ll find many of us around the forum living well, some for decades, which gives me hope I can too. I see @Happy2019 has shared their experiences of living with Essential thrombocythemia (ET) and I thought I’d also add mine of living with Polycythaemia vera (PV).

In 2023 I was diagnosed after blood tests showed abnormal levels of platelets, white and red blood cells, although I was fortunate not to have symptoms like many others tend to.

I went on to be tested for the JAK2 gene mutation which came back positive, and that got the ball rolling in terms of having a bone marrow biopsy and the final diagnosis of Polycythaemia vera (PV). Interestingly there was some discussion behind the scenes as to whether Essential thrombocythemia (ET) or Polycythaemia vera (PV) matched better as a diagnosis.

I’m also taking hydroxyurea and aspirin and despite initially experiencing pretty disabling fatigue I’m now mostly back to pre-chemotherapy energy levels, so I guess my body has got used to my daily dose! Seriously though, the fatigue was my worst symptom and I dread it ever being as bad as it was. I hope you have an easier time with the hydroxyurea!

Perhaps you’d like to read more about the family of blood cancers that we live with, Myeloproliferative neoplasms (MPN), and you’ll find links to Blood Cancer UK information about both Essential thrombocythemia (ET) and Polycythaemia vera (PV): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK

Maybe have a look around the forum for others living with both Essential thrombocythemia (ET) and Polycythaemia vera (PV) diagnoses as there’s a few folks with a similar double diagnosis to you.

Anyway, just wanted to share that and say how glad I am that you’re managing your diagnoses so well. Don’t forget to let yourself rest should you get not-so-good days.

Really glad you found us @Steve.H and do please let us know how you get on.

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Hi @Steve.H . Just to echo some of what Duncan says above, I found that when I started treatment with hyrdroxycarbamide for a recent(ish) diagnosis of Essential thrombocythemia (ET), it took a little while for my body to get used to the drug. My dosage was increased on two separate occasions until the new dosage (5,000 mg per week) has brought my platelet count under control. Now I’m on steady dose, my system has accommodated and I find that my energy levels are coming back up to (near) where they once were. I know that we’re all built differently and therefore we react differently to treatments but my experience has been to take the haematologist’s advice, follow their regime, accept that there will be some adjustment needed while the drugs start to carry out their work and that, long-term, the benefits will begin to make themselves known. Hang in there and continue to grab opportunities for wonder and adventure!

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Thanks for the words of encouragement. It looks like a long period of adjustment on Hydroxycarbamide to get back to a reasonably life, but hearing other are doing well is encouraging.
My family and friends are supportive. The Hospital team and Consultants are very understanding and informative. The only that has not been good has my GP practice. Being of a certain age i used to have a family Doctor that new me, now I see a different Doctor every time I go, with a different veiw of what is wrong with me. This led to not being diagnosed for a long time.

It is so nice to be on this forum reading unrelated people’s experiences and the support they are giving me.

Hopefully I before long i will be feeling better and it will be party time.:grin:

Thanks all Steve H

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Hi @Steve.H Sadly, my experience too was that it took a long time to get a diagnosis of Essential Thrombocythaemia. I first went to see my GP because I was experiencing a weird form of breathlessness, loss of energy and generally “not feeling right”. The first set of tests which they carried out had a red flag next to my levels of Vitamin B12, so the first thing they arranged was for a booster dose of B12 injections and then to set up regular 3-monthly top-ups. After the first of the top-ups, I was asked how I was feeling. For some people, B12 injections can feel like a new lease of life. Unfortunately, I was still feeling pretty much as I did when I first referred myself.

They then commissioned a series of tests of lung function and heart function. The former all came back clear; the second indicated a small heart block (a disturbance in the electrical impulses which control heart rhythm) and some slight coronary artery narrowing - but neither of which ought to have been sufficiently serious to cause the type of breathlessness which I had originally presented with.

This whole series of tests took about 6 months and it was only after they had been completed that my GP took notice of persistently high platelet readings in full blood counts which she had commissioned earlier. She recommended another full blood count and this showed that the levels had increased slightly. Only after that did she refer me to a haematologist.

In her defence a) my platelet count was high (around 520 when I first presented and around 560 by the time all the various lung and heart tests were completed) but not “sky high” and b) as I understand it, there are many potential causes of high platelet counts, not all of which are related to blood cancers and c) again as I understand it, Essential Thrombocythaemia is - thankfully - quite rare. So it kind of makes sense to me that any investigations would first of all focus on the common causes of breathlessness which I reported. Nevertheless, I remember feeling quite frustrated when I eventually got a diagnosis that it could possibly have come a lot sooner had I been referred earlier.

Now - over a year since my diagnosis and around 10 months into my hydroxycarbamide regime - my platelet counts are back in the “green zone” and I’m finding that a lot of my former energy is returning. Sure, I have the occasional not-so-good day. But there are a good many days where - aside from the time when I have to take my pill(s) - I forget that I have a condition and I’m simply getting on with life…

As you say, hopefully you will be feeling better before too long. Enjoy that party which you have promised yourself.

Aidan

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Hi Aidan

Sorry to hear it took so long for you to get a proper diagnosis. My thoughts are because our conditions are responsible rare GP’S do not conside Myeloproliferative neoplasms (MPN)’s as a cause.

My first high blood test was over 3 years ago with a number of other tests over the following years showing high readings, also suffering a DVT. It was not until recently i demanded more tests. After viewing the results the GP contacted haematology for further advice. The out come was a further tests for JAK2 which proved positive and i have Polycythaemia vera (PV) & Essential thrombocythemia (ET) plus a consultation with a Consultant.

In the meeting the Consultant was surprised I had not been referred to him 2 years ago. I have raised this matter with my GP practice and they are going to investigate, but I have no confidence in their procedures or them.

My Consultant was open and straight forward with me saying it was a case of trial and error to get the medication right for me. I now know i am not being ignored and have confidence, the outcome will be beneficial to me.

Good luck to you, lets keep in touch.

Steve H

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