Hello, my name is Richard and I was diagnosed with Polycythaemia vera (PV) in January this year. The diagnosis followed tests after a cerebral thrombosis last year and it’s all a bit odd because apart from the thrombosis, which was obviously a biggie, I feel pretty well. The challenge of coming to terms with a blood cancer which is not necessarily life shortening is interesting, to say the least.
So let’s concentrate on practical matters: I’ve been taking hydroxycarbamide for about a month and my consultant warned me about the risk of exposure to the sun and increased risk of skin cancer. But I wonder how other people have dealt with this. I’ve not been the kind to spend every holiday lying on the beach but I do like to watch cricket and tennis and obviously these occasions are more fun in sunny weather.
So if you are taking hydroxycarbamide, do you find you are more likely to burn or sensitive in other ways? Do you keep out of the sun altogether or do you wear long sleeves and trousers all the time? Are do you just slap on the sun screen whenever the clouds part?
I don’t suppose I’m the first person to wonder about this so if you can point me in the direction of any previous discussions I’d be grateful
Hello there @Richard62, welcome to the forum! I’m really sorry to read of your diagnosis and that thrombosis event. Wow that must have been horrible, glad you made it through! I was diagnosed with Polycythaemia vera (PV) last year and also feel generally well, aside from nasty fatigue after starting daily hydroxyurea straight after diagnosis. I still take it daily with aspirin and have occasional phlebotomy, usually every other month at the moment. I totally empathise with your challenge of coming to terms with living with a chronic and rare blood cancer such as Polycythaemia vera (PV). It’s a lot, right?!
My haematologist also warned me of a higher risk of skin cancers and checked what I do to offset this. I live in a sunny and frequently foggy place and have to say I’ve experienced some of my worst sunburn pre-diagnosis in fog! The sun’s UV light can still pass through fog, apparently. So I’d say it’s always wise to wear sun lotion. I’ve got into the habit of wearing mineral-based sun lotion (made with zinc) with a high SPF when going outside, mostly on my face, neck and lower arms. You can get daily moisturisers that include SPF. I’m bald so have even more reason to wear sun lotion on my head, plus always a hat.
I wouldn’t say I’m more prone to sunburn since starting hydroxyurea, but I do sometimes feel a slightly prickly, almost fizzing sensation on my arms and face if I’m out in the sun for too long or on those occasions where I haven’t applied enough sun lotion. So I’m getting into the habit of wearing long-sleeved tops with UV-protection. I’m not aware of any UK brands that do especially good UV-protective clothing, although Uniqlo sell some. I get mine from REI who may ship to the UK if that’s where you’re based. Maybe check outdoorsy shops, or even places like M&S?
Keep us posted about how you get on, @Richard62! I’m glad you found the forum.
Hi @Richard62 a great big welcome to our forum and a very good question,
It does not just relate to Polycythaemia vera (PV), but many conditions including my blood cancer and I am not on any medication. @Duncan has given you a brilliant response and I would re-iterate the high factor sunscreen at all times, long sleeved clothing and a jaunty hat.
Better safe than sorry, I say, I have had skin cancer twice on the top of my head, I look like a mixture of Worsel Gummidge and Friar Tuck.
Take lots of special care and please do keep posting
Hi Duncan, many thanks for your reply and advice. I’ve always been careful about avoiding sunburn so I’ll have to redouble my efforts! Fortunately I have a variety of hats and caps for many occasions, and I’ll have to invest in a few more long sleeved shirts.
You know, if you’re already careful in the sun then you probably won’t find it too hard to adapt now. I’m a big hiker and found last summer that I preferred the shadier routes, trails beside the sea to help cool me down, or indeed hiking through fog! Never been much of a beachgoer so I don’t miss that sort of sunning.
But yes, just some slight adaptations and you might even occasionally forget you’ve got Polycythaemia vera (PV) if the sights around you are engrossing enough!
Oh my, this is just the kind of place I hoped existed! Thank you @PollyVera, what a great website. So many great hats! Glad to hear you’re also a sun protection kind of person.
Richard62 I am also fairly new to having Polycythaemia vera (PV) as I was diagnosed in December. Sunscreen and long sleeves is what I do. I hope that you find the forum as helpful and welcoming as I have.