Coping with PV

Thank you Duncan for all your support it’s much appreciated. I will let you know how the blood is behaving

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Got blood results back, they are slowly rising but not enough to go back on any medication so having more bloods in 4 weeks. I thought that not being on any medication for the last few months my blood counts would be going haywire does anyone know why they are taking so long to rise, not that I’m complaining but I just don’t understand how all this works yet

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Hello @Jan63, nice to hear how you’re doing. Sounds like your Polycythaemia vera (PV) is behaving pretty well without any need for hydroxyurea, yay! This would be my preference, but I’ll continue with daily hydroxyurea for now.

I was told by various phlebotomy nurses and my (now former) haematologist that our blood cell numbers change and will go up and down due to stress, diet, and other health factors.

Apparently there’s not always a neat correlation between good health = lower blood counts, bad health = higher. If your doctors have said that slight increase in your blood counts is fine then I’d take that as a good sign.

It’s always worth asking your specialists though. Perhaps they’re waiting to see how your body responds to no hydroxyurea before deciding on future treatment? If they’re the sort of doctors to share their reasoning then ask away I say!

I hope it continues to go well for you, do let us know.

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Hi @Jan63 , @Duncan has given you a great response.
Yes, we are all very complex individuals and our blood tests certainly do fluctuate.
It is definitely a question for your medical team and please do let us know how you get on.
Be kind to yourself

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Hi Everyone, I have just been told I have Polycythaemia vera (PV) after a heart attack in 2023 followed with cancer of the womb and radium treatment. It was found on routine blood test after my operation. I have been put on Hydroxyurea strait away. I dont have many side effects except fatigue and occasional hot flushes. It is a lot to get your mind around when you are told you have Polycythaemia vera (PV).

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Hi a great big welcome @Carolemavis I have replied to your other post.
Diagnosis really is a lot to get your mind around, please don’t underestimate the effect of shock, and in your case accumulated shock.
I also found the actual language hit me too. Polycythaemia vera (PV) aren’t words that I had come across until our forum.
I have Chronic lymphocytic leukaemia (CLL) and when I was diagnosed I just saw the words in fluorescent with zig zags around them and I felt that I was in a bubble with the world going on around me.
Really be kind to yourself and please do keep posting