Just been diagnosed with Polycythemia Vera

Hi there,

I was diagnosed with Polycythaemia vera (PV) in October 2024, and only trying to get my head around it all.

A total bolt from the blue. Never heard of it and have been getting blood tests done every week with a weekly venesection until early Dec 2024. I’m on hydroxycarbomide, 2 a day, Then to be told I’d a break for 12 weeks, which to be honest I think it’s too long.

My symptoms are fatigue, sore pelvis and legs and generally just feeling rotten.

Got blood test yesterday and have to get venesection tomorrow, plus I’ve to increase the hydroxcarbomide to 3 three times a week.

Can anyone share their experience with this and their symptoms and medication please, I’d be most grateful as I feel I’m just lost at the minute?

Thank you.

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Hi @Lisaj123 welcome to our forum
I hope others can share their experiences with you.
However perhaps you need to talk to your medical team about your concerns and severity of your symptoms as they know you and your whole medical history.
I attach the Blood Cancer UK details on Polycythaemia vera (PV)
Polycythaemia vera (PV) | Blood Cancer UK
I hope joining our support forum will help you feel a bit less lost
I look forward to hearing more about you and how you get on, really be very kind and look after yourself.

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Hi Lisaj123,

It is difficult to get used to and you’re not alone. You’ll find this site and the people on it a valuable source of information and support. I was diagnosed in the early summer last year and discovered this site around Christmas.

One thing you’ll find is that our cancers and therefore our treatment are often as unique as we are.

My main symptoms were fatigue, dizziness, severe itching, night sweats and pains in the abdomen.

Originally I was on a 1000mg of hydroxycarbamide ( 2x500mg) a day though this didn’t reduce my hematocrit level and was increased to 19 tablets a week from 14. This successfully reduced my hematocrit level but had little effect on my symptoms generally. I was taken off hydroxycarbamide just before Christmas and prescribed ruxolitnib instead. This is working for me and most of my symptoms have now disappeared or lessened considerably. My haematologist tells me I will continue to improve.

My understanding is that we all improve when our particular medical needs are met but that this can take time, so hang in there, you will get to feel better. Before Christmas i was starting to despair as I was taking medication with little visible impact, but now I have a renewed sense of optimism.

There is a lot of useful information on here and old conversations can be informative too if you feel up to browsing them. I would definitely look up the information on fatigue though as this is something we all seem to share, understanding a bit more about it and how to manage it may be very helpful. I certainly found it so.

Anyway, welcome to the forum and ask anything you like, someone will probably be able to help. Sometimes you even get baking tips too.

Apologies for any strange spelling I am writing this on my ipad and it tríes to auto correct everything into spanish.

Best wishes, take care and remember you will get your head round all this.

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Hi @Pedro and @Lisaj123 I attach the Blood Cancer UK details on fatigue
Fatigue | Blood Cancer UK
as @Pedro mentions.
@Pedro you show so clearly how we are all individuals and that the medications are tailored and tweaked to each of our needs
Take lots of care both of you

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Hello there @Lisaj123, welcome to the forum. I’m very sorry to read of your diagnosis with Polycythaemia vera (PV) and those rotten symptoms and am glad you’ve found the forum.

Like @Erica and @Pedro say, hopefully you’ll come to find that you’re not alone with your diagnosis. There are many of us here living well with Polycythaemia vera (PV) and other related Myeloproliferative neoplasms (MPN), and you’re certainly not alone in experiencing fatigue—I read that something like 80 % of people with cancers will experience fatigue. Isn’t it grim?!

From others around the forum living with Myeloproliferative neoplasms (MPN) I get the impression that fatigue often comes on prior to diagnosis and that treatments can help alleviate it once they take effect. When I was diagnosed with Polycythaemia vera (PV) in 2023 it came out of the blue like with you, particularly as I was very fortunate to have no symptoms. However, I started taking daily hydroxyurea and that’s when my rather disabling fatigue began. I also take daily aspirin to thin my blood, and occasionally have phlebotomy when my haematocrit (blood thickness) is above 45 %.

Not going to lie, it really got me down as I was previously very active, but over a few months the fatigue faded as my blood cell numbers improved. My haematologist told me that as we produce most of our blood cells in our pelvis the aching I felt there was likely the chemotherapy taking effect, disrupting my body’s blood overproduction. I also had aches return from previous injuries, like former tendinitis and a sprained finger, but those also faded with time like the fatigue.

So perhaps you’re also getting aches and fatigue from treatments kicking in? A couple of things I found helpful for boosting my energy during the worst of my fatigue seemed counterintuitive but are backed up by research into cancer-related fatigue, and maybe they’ll be helpful for you too.

Making sure to get daylight early in the day into my eyes helps regulate my circadian rhythm and thus improves the quality of my sleep—invaluable for me after a lifetime of insomnia! Love my sleep now.

Another research-based action I’ve maintained has been keeping active, whatever my body can manage. I do a bit of slow yoga a couple of times a week which really does energise me, even when the fatigue is making me feel flaky. Tai chi and Pilates are also shown to help. Walking and hiking continue to keep my blood flowing, and again research shows that forest-bathing and being in nature generally is really good for us.

But really you’ll get to know what your body can manage and what boosts and maintains your energy best. Something else I practice when appropriate is to just simply rest when fatigue kicks in, and then to resume the activity later. Pushing through fatigue will just make it last longer in my experience.

Hopefully over time your fatigue and other symptoms will reduce and your energy improves.

Do please let us know how you get on @Lisaj123. Maybe have a look around the forum for others living with Polycythaemia vera (PV), Essential thrombocythemia (ET) and related Myeloproliferative neoplasms (MPN) as we tend to share similar overlapping treatments and symptoms which for me can feel very comforting.

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Thank you Erica very much, this has been really helpful.

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Thank you Pedro, really appreciate your openness.
That’s a lot of medication, I hope things stabilise for me soon.
I may also have to get 1 or more my parathyroid glands out as my calcium is very high too :roll_eyes: just something else to deal with.
I will definitely read about the fatigue and past stories.
It’s good to know I’m not on my own as I’ve no idea about anything lol, thank you.

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Thank you Duncan so much for sharing your experiences with me, it’s really helpful.
Great points about exercise and to keep blood flowing.
This was a complete shock to me, as like you I’ve always been active, working on my feet as a career from I was very young, now I can hardly walk the length of myself lol, it’s so frustrating.
I can understand a bit better now you say about the treatment and pelvic pain, I hope that settles soon.
You’ve honestly been so helpful, thank you.

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You’re most welcome @Lisaj123, and thank you for making my day with your lovely response!

I totally empathise about all this being a shock. Something personal I can share that’s also quite a surprise is sometimes I actually forget I have Polycythaemia vera (PV)! Then I re-remember and roll my eyes at it, this pesky companion that I never invited to join me. Hopefully you’ll have times like that too.

May I just add though to please never grin and bear being in any pain now—always let your specialists know, especially if it’s a very localised pain. My lovely haematologist talked me through what to expect should I ever experience a clotting event, which alleviated some anxiety.

Anyway, I’m glad you’re finding the forum useful @Lisaj123. Don’t hesitate to raise anything that comes to mind as I’m sure folks here can offer advice or at least understand what you’re experiencing.

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Thank you Duncan,
I forget I have it sometimes too, and then it’s there lol.
My haematologist hasn’t gone through any of those things like a clotting event or different bone pain. I’m also wondering if should I have been given a key person to go to, I’m not sure.
Thank you, that’s very useful and something I need to bring up on my next visit.

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Oh I love that you forget about Polycythaemia vera (PV) sometimes too, it’s like our minds give us little breaks!

I get the impression from others around the forum that haematologists are pretty variable with some offering great real-life advice—mine taught me how to moisturise properly! Others share the bare minimum of useful information. If you see the same haematologist each time then I’m sure you’ll build up some sort of rapport.

Were you given any contact details at all? Maybe a clinical nurse specialist (CNS) at the hospital where you go for phlebotomy? I often ask my phlebotomists stuff when I see them.

I’d say keep a list in between appointments of queries, any concerns, and any change in symptoms you experience and ask about them when you next speak to a specialist. You could ask what your treatment plan is and what to expect in the next few weeks/months from treatment.

At this early stage after diagnosis there’s so much to take in and learn and it can help to talk it through. The lovely specialist @BloodCancerUK-SupportTeam nurses can offer support and answer your queries. If you’d like to call them their (free) number is 0808 2080 888.

Thinking of you @Lisaj123, glad you found us!

Hi @Lisaj123 If you feel you haven’t got a key contact which are usually a CNS (Clinical Nurse Specialist or equivalent) perhaps ask for one as @Duncan says.
From my experience they have been attached to the haematology or oncology departments.
Yes, I forget I have my blood cancer too sometimes, before it bounces back, I have found I forget for longer periods as time goes by.
As @Duncan says I also keep a list of my symptoms, fears, questions and practicalities and just add to it between appointments,
At appointments I am pleasantly assertive and make sure I understand all responses.
You are really doing well so be very kind and look after yourself
Pleat us know how you get on

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