I was diagnosed with polycaethemia Vera in November 23. Apparently my red blood cell reading was 59 when normal should be 45. Consultant wanted me to take hydroxycarbamide but I declined as main danger seemed to be of getting blood clots and I was already on Apixaban which helped with preventing this. None of the NHS available drug treatments seemed risk free so currently watching and waiting to see if I can get my red blood cell count down by avoiding iron consumption and exercise and trying to live as healthily as possible. Don’t currently have any symptoms. Am I doing the right thing??? Hydroxycarbamide scares the wits out of me because of the potential risk of infections mostly.
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Hi @Francis190.
Any kind of treatment comes with its risks doesn’t it and it’s always a tough thing to decide on the right thing to do.
You sound like you have been really thorough with your research. Do you have a good medical team around you? What did they say about your decision?
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I had Polycythaemia vera (PV) for 25 years and for most of that time took Hydoxycarbamide. It kept my blood count at an appropriate level and I was regularly monitored by my consultant and the dose adjusted as necessary.
I was able to live a normal life.
I did not suffer any side effects, blood clots or increased level of infections. Perhaps I was just lucky.
Everyone is different and it needs to be right for you.
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Hey there @Francis190, welcome to the forum and thank you for sharing your difficult news. I’m really sorry to read of your diagnosis with Polycythaemia vera (PV). I was diagnosed with it last year too, and it’s quite the learning curve, isn’t it?!
You’ve got right in there with blood cell numbers and wondering about hydroxyurea’s dangers, and I totally empathise. You’ll likely find that blood cell counts change and dip in and out of what are considered normal ranges as your treatment progresses. Be careful about googling Polycythaemia vera (PV) with abandon as there’s a lot of nonsense out there, but here’s the Blood Cancer UK information that’s really helpful: What is polycythaemia vera (PV) | Blood Cancer UK
When my haematologist told me I’d be prescribed daily hydroxyurea I was amazed that chemotherapy came in pill form, it seemed so futuristic. It somewhat took my mind off the fact that I’d become a “human carcinogen” by taking it, as its notes so terrifyingly state. Why would I want to take chemotherapy that might risk all sorts of other issues?!
I’ve settled into taking the hyroxyurea, but I won’t lie. It gave me all sorts of grim side effects for the first few weeks, and they concerned me greatly as, like you, I had no symptoms prior to diagnosis. All the severe fatigue, the foggy thinking, the weird ache in my spleen, these were from taking hydroxyurea. Thankfully they all faded and I feel pretty much normal again, but it was a dark time and I felt rubbish physically and emotionally. I was already having therapy and it was so helpful after diagnosis that I recommend having it to anyone who can access it.
From what I’ve read, heard from haematology specialists, and stuff I picked up at a blood cancer conference the other day, treatment with hydroxyurea for polycythaemia vera is the main option as it has best results at controlling the disorder but with fewest complications. The risks are pretty scary though, that of greater chance of infections from weakened immunities and skin cancer, but they aren’t definitely going to happen. There are other medicines, including interferon (injections that you typically do yourself at home) and a newer one called ruxolitinib which is apparently now considered the second best option for Polycythaemia vera (PV). I’m sure others on here can speak to how well these work for them.
Some folks don’t ever get any side effects, like @Jonpd with his long experience of living with Polycythaemia vera (PV). That gives me hope that these treatments can work well in the long-term, while new medical treatments like ruxolitinib are emerging through clinical trials.
For what it’s worth, I’ve taken aspirin daily for over a decade to thin my blood since a heart attack and never had any untoward side effects from that. Perhaps you’re at low risk of clotting and can get away with not needing the hydroxyurea, but do talk it through with your doctors. Hydroxyurea has other risks, including to our fertility and sexual partners, so they may be considerations to bear in mind when choosing whether to take it or not.
Really glad you found this forum, @Francis190. Hopefully I didn’t bombard you! Keep posting and please feel free to ask anything as there are plenty of folks here who know what you’re going through.
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Hi @Francis190 I am so glad that you have found us and you have obviously some some research.
Yes, it is a dilemma and I think dilemmas are very personal things and the value of our forum is that you read others experiences and hopefully it gives you more of a picture to consider.
Perhaps take your time and do write down your fears, questions and practicalities to talk over with your medical team.
I have another blood cancer and have always been on watch and wait. I am prone to infections, fatigue, I have had skin cancer twice, osteoporosis etc.
The Blood Cancer UK support line is there for you if you need them on 0808 2080 888.
Please do let us know how you get on and look after yourself.
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