Question: Living with / Treatment Polycythemia Vera (PV)

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Hi, I still find it hard to come to terms with it, I was always so fit and well no signs of anything like this in my family then wham a life long cancer to deal with. Most days I just get on with it take the pills and do as much or as little as I can. I hope as time goes on it will be easy to live with as it is with any long term illness. I am only at the start of this journey but good days are becoming more than bad days now so I must be turning a corner. I am not being asked that horrible question are you ok so much I know its ment well but every time it reminds me I have it but what can you say, my stock answers is I am getting there and I know I am. Take care☺

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Hi @BevP! Where to start! At first it was a bit difficult, especially since I had just dealt with an accident I was still recovering from (mainly walking). The weekly treatments tired me out greatly and on top of it I got a nasty cold (could have been covid).

However, one of my doctors advised things like meditation and while initially brushing it off, I decided to give it a go. I started practising mindfulness, and it all has given me a good boost of energy and a new zest of life.

I can’t speak for everyone here, but for me, Polycythaemia vera (PV) got discovered before I had any mayor issues like a stroke or heart attack. My treatment has been going well, so I don’t need to take any medication other than 75mg of aspirin a day. Currently, I am on my second month without a venesection and my next bloodtest is in the beginning of December.

My mother passed away of cancer 4.5 years ago, and it was brutal, compared to that; I got a golden ticket. I can grow old with it, and with a bit of meditation and physical activity I can make this work just fine.

I did get to speak to a Haematologist that had been dealing with Polycythaemia vera (PV) since the 80’s, so I got to ask him a ton of questions. Here are some things he told me that might help some of you:

  1. The Polycythaemia vera (PV) mutation is determined at conception, so you are born with it. At some point it will become a problem, and thankfully they’re catching this earlier on people. 80’s and 90’s they discovered it more after some serious complications like a stroke, heart attack etc.
  2. You can eat anything you like, just moderate it, don’t overdo it. Don’t eat too much red meat, don’t drink too much alcohol etc.
  3. The venesections are to reduce the resources needed to make more red bloodcells, eventually your body will adjust to the lower resources and will be less likely to produce extra red bloodcells. Meaning that you can end up with only one venesection a year.
  4. For a lot of people the tiredness will fade over time, as your body adjusts to the new situation. There are things you can do to boost your energy, like exercise, or things like Thai Chi and meditation.

I found that a positive and thankful attitude boosts energy levels too. I am pretty much functioning as normal, bar some digestive tract issues.

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