I was diagnosed with both Essential thrombocythemia (ET) and Polycythaemia vera (PV) nearly 3 years ago but cannot find much help for people with both. Is having both rare?
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Hi @Helenw a great big welcome to our forum
I am not a medical person and I do not know whether having Essential thrombocythemia (ET) and Polycythaemia vera (PV) is rare or not I will copy your post to the Blood Cancer nurses @BloodCancerUK_Nurses nurses for you
Please do keep posting as I look forward to hearing more about you
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Hello there @Helenw, welcome to the forum. Wow what an unusual diagnosis you have! Quite the double-whammy as either diagnosis alone is a big deal and both are rather rare from what I’ve read.
I was diagnosed with Polycythaemia vera (PV) last year and at a recent blood cancer conference that I attended MPNs such as ours were described by a specialist as being something of a family of progressive disorders, in that Essential thrombocythemia (ET) can progress (“transform”) to Polycythaemia vera (PV) which, rarely, can transform into myelofibrosis. This is a slow transformation over decades. Essential thrombocythemia (ET) can be considered “masked Polycythaemia vera (PV)” in some cases. There was no mention of us being able to have both types of blood cancer at the same time, but I am not a medical expert.
I’d be very inclined to ask for a second opinion if possible. May I ask what procedure was used to diagnose you? My Polycythaemia vera (PV) was found after a complete blood count caught the JAK2 gene mutation, whereupon I had a bone marrow biopsy to confirm the overall diagnosis. Bone marrow biopsies don’t always seem to be done or needed from what others on the forum have said about their diagnoses.
Anyway, I’m really sorry you have either of those diagnsoes, but you’ve come to the right place! Should you be interested, here’s my notes from the blood cancer conference: Northern California Blood Cancer Conference
Please keep posting. I hope you’ll find some answers to your situation!
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Thank you so much. My haematologists - for I have to speak to a different one every time I have a telephone consultation, which is quarterly - seem to only be interested in my platelet and red blood counts rather than any symptoms or other wider concerns so I feel I’m left pretty much on my own.
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Hi Duncan,
I was diagnosed after a plethora of blood tests - nothing else - and was found to have both Polycythaemia vera (PV) and Essential thrombocythemia (ET) and have the Jak 2 complication, too.
Since then, I have also developed portal hypertension and may have an enlarged spleen due to that portal hypertension.
I am on Hydroxycarbamide and Warfarin plus a beta blocker but no phlebotomy, etc.
Here in the UK, it is not that easy to get a second opinion, unfortunately, albeit that may be just the region I live in.
I can navigate my condition myself as I’ve always been pretty organised in life but without wanting to sound needy, it would be nice for the doctors to seem a little less scientific in their approach/ communication and a little more “human” regarding the reality of living with this condition.
Thank you for your thoughts and replies @Duncan and @Erica.
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Thanks @Helenw it is more difficult to build a relationship when you speak to someone different every time and on the phone.
I have found some haematologists are very factual, but I now write all my symptoms, fears and questions, then I have learnt to be really pleasantly assertive and ensure all all my issues are addressed.
You are not on your own on our forum you have us.
Be very kind to yourself and please keep posting
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Oh I’m sorry to hear you have that hypertension on top of Essential thrombocythemia (ET) and Polycythaemia vera (PV). I’ve got hypertension too, which I take a statin for. Thankfully that doesn’t seem to have many contraindications.
Know what you mean @Helenw about our doctors not always being so human, or even humane, as I’ve had the bare minimum of care from my haematologist since diagnosis. Thankfully my family doctor and the phlebotomy nurses I see relatively regularly make up for the lack of warmth, so I’m sorry you don’t have that sort of space to ask questions and offload.
Fellow Brits on here talk about often having great feedback and support from their nurses too. Others here have talked about successfully asking to be referred for second opinions and even retesting when their care isn’t quite right.
But, like you say, it really varies depending on region. For example my dad had to wait months in his part of Wales just for a JAK2 gene mutation test result due to incompetencies between his GP and the lab they used, whereas others here have been diagnosed within a few days. It sadly really seems like luck of the draw and chance proximity to decent hospitals, so I’d say if you don’t ask you may not find out otherwise.
You may find you can ask the lovely Blood Cancer UK nurses here on the forum about specific queries, they are experts of our various disorders after all and know what we’re living with.
If you’re not getting adequate care you can ask your local NHS PALS who can advocate for you and your needs.
Keep posting, you might find the answers you need amongst others here.
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Thank you for the tips @Duncan. I will follow up on these.
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Yes, I need to be more assertive @Erica. Thanks for your help.
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Hi @Helenw I was diagnosed with both Polycythaemia vera (PV) and Essential thrombocythemia (ET) in Jan 2022. I had to have weekly venesections to start with. Finally in Jan this year I got to speak to the consultant and explained that their plan wasn’t working. I asked whether I had both and they then re-diagnosed and said I have Polycythaemia vera (PV) with high platelet count. I have now been started on Interferon (yesterday) and will get to see the consultant in 5 weeks time. You need to be to the point with the consultant /registrar otherwise you’ll probably get nowhere. Until a treatment starts working I will always insist on seeing the consultant.
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Thanks so much for replying @Adw265. Your experience is really helpful.
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Hello @Adw265, funnily enough you came to mind when I saw that @Helenw had been diagnosed with both Essential thrombocythemia (ET) and Polycythaemia vera (PV). I’m glad your diagnosis has been clarified, although of course I’m sorry to read you have any blood disorder at all. Can’t help but wonder how you both got double-diagnoses when I was under the impression that MPNs are more like a progression of blood disorder rather than separate disorders altogether.
Hopefully, like you say, your treatment will work better for you now. My phlebotomies are about every 3 months now after they were initially fortnightly–not as often as weekly like yours were! It can take up so much time having such frequent appointments, perhaps you find the same. I’ll keep my fingers crossed that your haematocrit and platelet numbers come down with your new treatment.
You may be interested in reading notes I took at a recent blood cancer conference where one specialist spoke at length about MPNs such as ours, link above.
Keep us posted about how you get on with interferon.
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