In the last few weeks I have been diagnosed with Polycythaemia vera (Polycythaemia vera (PV)).
When the consultant said it was blood cancer, I was a quite worried, but she helped me understand about the condition.
So far the hospital has been taking 400ml of blood every week & they have said as my levels go down they maybe able to reduce that to once a month.
So far no real symptoms other than 3 times I had like a cyclone in one of my eyes and I couldn’t see from that eye for about 10-15mins.
I would really like to hear from people who have that this condition long term, to see how this changes over time, because so far nobody has told me what happens long term.
First, welcome to the Blood Cancer UK community forum. We’re so glad you found us. Many people here have been through a similar experience, and it can be a huge comfort to connect with others who understand what you’re going through.
It can be frustrating when you don’t have all the answers, and your journey can feel uncertain. Hopefully, others here will be able to share their personal experiences with you soon.
In the meantime, it’s great that your phlebotomy treatments are already underway to help manage your blood cell count. The aim of this treatment is to reduce your risk of blood clots and manage your symptoms. It’s positive news that your consultant is already discussing a potential reduction in the frequency of your phlebotomies. The eye symptoms you’ve described it may be good idea to mention them to your consultant.Mine has always told her to mention anything new ,and let her decide if its connected or not. It has been great advice she has given me lots of reassurance.
Here are a few links from the Blood Cancer UK website that you might find helpful for more information and support:
Polycythaemia vera information: You can find detailed information about Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))), including its causes, symptoms, and treatments, on our dedicated page: What is polycythaemia vera (PV)? | Blood Cancer UK
Talk to a nurse: Our dedicated nurses are available to listen to your concerns, help you understand your diagnosis, and provide emotional support. You can find their contact details here: How to contact Blood Cancer UK | Blood Cancer UK direct phone number for the Blood Cancer UK support line is 0808 2080 888.
Hello there @PeterGadsby, fellow Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV)))) survivor, welcome to the forum. I bet, like me, you never thought you’d need to find a forum like this! I hope it comes to be as helpful for you as it has been for me since my diagnosis in 2023.
Sounds like you’re having regular phlebotomy to bring down your blood cell numbers more quickly initially to lower clotting risk, which is our main concern with Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))) according to my haematologist. My phlebotomy was fortnightly for a couple of months initially, a pint at a time, until the hydroxyurea I was prescribed started to slow down my body’s overproduction of blood. Now a couple of years later I usually need phlebotomy only every few months as the hydroxyurea is doing such a good job controlling my Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))) and clotting risk.
I’m sorry to read of that eye cyclone you experienced, sounds terrifying! Hopefully now that you’re having blood removed that’ll help decrease blood pressure and other side effects from having too much blood. Like @Jules suggests, do share that and any other symptom with your specialists—I’m realising that the more we share about odd or new symptoms with our haematologists, the better our treatments can be tailored to us.
For some, diagnosis with Polycythaemia vera (PV) and other Myeloproliferative neoplasms (MPN) can be a real shock as we often don’t even have any symptoms pre-diagnosis. Others find out due to clotting events taking them to hospital, leading onto diagnosis. There are even some folks with Myeloproliferative neoplasms (MPN) who essentially need no treatment and have active monitoring AKA watch and wait by their specialists.
Something I like to share with others around the forum living with Polycythaemia vera (PV) is that my haematologist reassures me I am more likely to die with Polycythaemia vera (PV) than from it and can live into normal old age.
There are many of us living well with Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) like Polycythaemia vera (Polycythaemia vera (PV)) and Essential thrombocythemia (Essential thrombocythemia (ET)) around the forum so do please have a look around as others have shared different experiences and symptoms of living with Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) which may resonate with you.
Glad you found us @PeterGadsby! Do keep us posted about how you get on.
You’re welcome @PeterGadsby, share and share alike as they say. However, I wouldn’t feel comfortable saying that you’ll need phlebotomy for life as that’s for our specialists to decide, based on our individual health.
I get the impression from the few specialists I have spoken with that they prefer us to take medicine as ongoing phlebotomy can tend to decrease other aspects of our blood which can cause other issues, like anaemia.
As I survived a clotting event many years ago I was started with hydroxyurea straight away upon diagnosis with Polycythaemia vera (Polycythaemia vera (PV)). My haematologist didn’t share all its side effects, so if you’re planning on procreating do let your specialist know.
From my non-medical understanding, if we’ve had a clotting event already and/or are older than 60 at diagnosis then we’re classed as being at higher risk of clotting and are usually prescribed cytoreductive medicine like hydroxyurea or interferon to help control the overproduction of blood cells.
Personally I’d prefer to have just bloodletting as my treatment as it seems more predictable than the mild hydroxyurea chemotherapy, which caused rather disabling fatigue for the first few months. But I’m back to my pre-diagnosis energy levels and am used to taking daily chemo, strangely enough. I’ve been fortunate not to experience side effects beyond fatigue.
Definitely worth talking this over with your specialist and asking about your individual care plan as it’ll differ to mine and that of others, plus it’ll change over time for you as your platelets and other blood cell numbers settle down.
I have read that other forum members living with Polycythaemia vera (Polycythaemia vera (PV)) prefer to stick with only phlebotomy due to hesitation/anxiety about taking chemotherapy, plus others who have too many side effects from hydroxyurea and take another medicine, but there are many options for treatment these days.
Maybe have a look at those links that @Jules kindly shared as the Blood Cancer UK info about Polycythaemia vera (Polycythaemia vera (PV)) is great, hopefully you’ll find it helpful too.
Hi Petergadsby, welcome to somewhere none of want to be. I’m about a year or so ahead of you on the Polycythaemia vera (PV) journey and happy to share my experiences as are others on here. Firstly, I’ve found this forum helpful,informative and supportive . It’s worth looking at older threads.
None of us can tell you what the future holds, our condition and how it effects us are unique. We can only share what happened to us and how we felt.
For example, I found out I had Polycythaemia vera (PV) after collapsing in the street because of it, you and others had no symptoms at all
For what’s it worth, I only had a few phlebotomies (can’t remember how many exactly) and since then my condition has been controlled by drugs, but it’s only in the last few weeks that the most intrusive of my symptoms have finally subsided. (Hydrocarbamide didn’t work for me and I started on ruxilotnib at Christmas - which has transformed the quality of my life).
As Duncan mentioned most of us will die with Polycythaemia vera (PV) not from it. I’m getting fitter and feeling better by the day. I’m used to wearing a mask when the situation calls for it and I’m expecting to have a positive future, and you can have one too.
It’s a lot to get your head round, if you have questions, just ask. You are not alone even though sometimes it may feel that way.
Pedro I am sorry to hear about your symptoms, I feel lucky that I don’t have any other than some itching on my arms, which I think is fairly common.
I have at least four more weeks of phlebotomies, so that will get me to about 10-15 of them. I had two in one week before my holiday which was 800ml of blood taken, it was touch and go whether I was allowed to go, but they finally let me go with conditions that I could not have any alcohol on the plane & had to wear compression socks and walk around. I think mainly it was because it was a short haul flight to Spain.