Hi everyone,
I’m James, and was told I had Polycythaemia vera (PV) 6 months ago after some tests. I had been round the Himalayas on a motorbike and spent some time around 6,000m altitude. It was strange - I didn’t even notice the high altitude, but then came back to the UK and was quite sick! The Polycythaemia vera (PV) combined with high altitude meant my levels were seriously high 
Anyway, a Polycythaemia vera (PV) diagnosis followed. Not ideal, but it is what it is. I’ve been having venesections every 2 weeks for 6 months which has got the haematocrit and haemoglobin under control, but the super low iron has caused my platelets to rise to 1200+. I’m now getting told I should have some interferon which, to be honest, is a bit of blow. I’m 43, fit as a fiddle and am of sound mind. There’s part of me that thinks to spread out the venesetions and try to stay off it, but I get that sometimes the scales can’t be balanced. I don’t want a clot, but I also really don’t want some debilitating chemicals in my body for the long term. If I don’t get on the interferon now, am I just kicking the can down the road and putting myself at more cardiac risk in the short term?
I just thought I’d join here at this milestone, and learn with people together. If someone can help me with some thoughts, great - if I can help someone else, great.
Thanks in advance and sending everyone best wishes.
James
Hello there @JamesT, welcome to the forum. Bet you never thought you’d need to find one like this! I’m so sorry to read of your diagnosis with Polycythaemia vera (PV), and at an age that’s considered youthful by haematologists. I wanted to pop in and say you’re not alone with any of this, and hopefully your decision about taking interferon will become easier.
Although I’m not a doctor and can’t offer medical advice, I was also diagnosed with Polycythaemia vera (PV) at a similar age to you in 2023 and was also very outdoorsy. Still am, just with adaptations as my energy levels have never been the same since. Your travels in the Himalayas sound incredible and will always be with you, what an achievement. Been rewatching the Long Way Round shows again recently and can maybe imagine some of your adventures!
Like you I was also having fortnightly bloodlettings initially after diagnosis, but was put on hydroxyurea straight away as I was considered high-risk of clotting due to already surviving a heart attack caused by a clot many years ago. Now 2 years on I rarely have phlebotomy as the hydroxyurea maintains healthy blood cell numbers and thankfully I haven’t experienced anaemia. I’ve taken daily aspirin for years with no ill effect.
From what my haematologist tells me, we are considered to be high-risk with Polycythaemia vera (PV) if we’ve already had a clotting event or are older than 60. Clotting is our main risk and so some kind of treatment is needed to decrease the amount of blood cells our Polycythaemia vera (PV) causes. You’ve already come up against the anaemia that seems common with long-term phlebotomy, and so taking a cytoreductive medicine like interferon, hydroxyurea or similar would be the next treatment step, from my understanding.
I’d say from my experiences of hydroxyurea (a type of mild chemotherapy) that its benefits outweigh its potential issues. It did cause me terrible fatigue for about 3 months after starting it, which has been my worst symptom of dealing with Polycythaemia vera (PV). From others around the forum I get the impression that other cytoreductive medicine like interferon have their own side effects which can also include fatigue. According to research, cancer-related fatigue (CRF) is very common with any type of blood cancer and their treatments. Beyond the first few months of daily hydroxyurea my energy levels improved and I’m back out hiking, kayaking, walking every day, and doing yoga.
I think you’re wise to consider whether avoiding treatment now will cause further issues later on. What I’ve been told is I can expect to live to normal old age with Polycythaemia vera (PV) if I maintain some kind of treatment to slow down the blood cell overproduction. There’s currently no cure for or remission from Polycythaemia vera (PV), from what I’ve been told. However, my haematologist tells me I am likely to die with Polycythaemia vera (PV) rather than from it, which is weirdly reassuring!
Anyway, perhaps you’d like to read the great Blood Cancer UK information about Polycythaemia vera (PV) if you haven’t already: Polycythaemia vera (PV) | Blood Cancer UK
And here’s some more information about treatments we tend to be offered: Polycythaemia vera (PV) treatment | Blood Cancer UK
Really glad you found the forum @JamesT and I hope I haven’t bombarded you. Maybe have a look around using the search box at the top as you’ll find many of us living well with Polycythaemia vera (PV) and other related Myeloproliferative neoplasms (MPN) in the forum. Do please let us know how you get on, fellow Polycythaemia vera (PV) survivor!
Welcome @JamesT to the forum and thanks for posting
I’m of same age but was diagnosed 5years ago. I too was in good health when I was diagnosed so when I was told I had cancer.. shock was an understatement. It’s good to get clued up on the condition and know your medical team and ensure there’s good communication.
It’s very common to have venesections (lots in your case) to get your levels within the required range. I too started on interferon and was absolutely fine on it bar flu like symptoms after my first jab. Obviously the possible side effects are scary but everyone is different and endured hardly anything noticeable. The treatment worked straightaway and it didn’t stop me doing anything. It’s a relatively new treatment so there isn’t as much info as hydroxy but it’s the preferred treatment to younger patients.
Once you’ve started treatment you should fine the need to get venesections become scarce
There is always the fear of clotting but as long as you report any issues and get checked regularly the anxiousness should start to fade.
There’s now a fair few of us in the Polycythaemia vera (PV) crew here so feel free to share and pick our brains if you have any questions or concerns and want a patients perspective