Now part of the polycythaemia vera posse

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Aw @Rigalanc I’m so sorry that you got diagnosed with Polycythaemia vera (PV), but now you’re part of the family and you know what you’re dealing with. You’re not alone with Polycythaemia vera (PV), there are many lovely folks here on the forum who live with it and other MPNs and know what you’re going through. There are folks who’ve lived with Polycythaemia vera (PV) and other related MPNs like Essential thrombocythemia (ET) for decades and according to research it shouldn’t shorten our lives. We can live into normal old age with Polycythaemia vera (PV) with just minimal adjustments to our lives.

Perhaps I could offer some reassurance? I’ve taken daily hydroxyurea and had regular phlebotomy for over a year now. At first, after diagnosis, I had to have phlebotomy more often as my blood was thicker and more at risk of clotting. Blood clots are our main risk with Polycythaemia vera (PV) so thinning our blood helps reduce those risks. My blood is now thin enough to be considered normal again, as in my blood cell numbers like my platelets are within the normal ranges.

Like @Rammie18 says so well, hydroxyurea is a common medicine that has been used for decades. In fact, something that reassures me about hydroxyurea is that kids with sickle cell have been treated with it for many, many years and yet they don’t have a higher occurrence of cancers.

So if you’re anxious about developing other cancers like the hyrdroxyurea warning label says, clinically it is very unlikely. Hydroxyurea is considered a cytoreductive type of chemotherapy so there are issues to bear in mind, but research and years of statistics show it is relatively safe.

However, hydroxyurea does make our skin photosensitive. When I’m out in the sun I can feel little pinpricks of sensitivity across my skin if I haven’t used a high SPF sun lotion, so I highly recommend wearing that. There are slight risks of developing skin cancers while taking hydroxyurea so be really careful of your skin in the sun.

I find that taking hydroxyurea dries my skin out so I have to moisturise every day and make sure to hydrate more than usual. On the day before phlebotomy try to drink as much water as you can so your veins are nice and plump and your blood hydrated. It makes draining blood easier and faster.

Something you might experience is the hydroxyurea not bringing your haematocrit down to a normal level very quickly. It took almost a year for my blood cell numbers to settle down taking hydroxyurea. Once your blood is back to being ‘normal’ you probably won’t need phlebotomy so often, or at all. The medicine alone will be used to keep your blood cell numbers in their normal ranges.

I see @Rammie18 has shared the Blood Cancer UK Polycythaemia vera (PV) information already, but perhaps you’d like to read about its family of blood cancers, MPNs: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK

Hope this helps. Please know that you have support here on the forum. Your shock is to be expected with such a scary diagnosis but please trust the treatments and give them time to work.

Let us know how you get on, @Rigalanc.

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Hi @Rigalanc at least you have your diagnosis and way forward.
I think it is natural to be in shock when you actually receive a diagnosis and for a while.
However a nurse once said to me you actually are the same person that you were before you got your diagnosis, no consolation I know.
As for side affects well they give you the worst scenarios to cover themselves.
Be kind to yourself and please do keep posting

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