Hello there @Denny, a great big welcome to the forum! I’m so sorry to read of your AF and Polycythaemia vera (PV) diagnoses, wow what a lot you have to live with. I’m really glad you reached out to the forum. Hopefully you’ll find it supportive and helpful as you acclimatise. Dear @clickinhistory, @Rammie18, @Nichola75, @Heidi_BloodCancerUK and @Erica have already shared excellent advice and tips and have been instrumental in me tolerating my own diagnosis of Polycythaemia vera (PV). Thanks guys!
I’m not surprised you feel scared. For me, any mention of the big C has always scared me and it still does nearly a year since diagnosis with Polycythaemia vera (PV) like yourself. I wonder, do you have loved ones you can share your diagnosis with if you haven’t already? A problem shared is a problem halved and all that. I couldn’t hide my diagnosis as my other half got home just as I was reading I was positive for the JAK2 gene mutation which over 90 % of us with Polycythaemia vera (PV) have. So in some ways I’ve been fortunate to be able to share my progress and understanding about Polycythaemia vera (PV) with a loved one all along. I’d say choose someone you trust so you can express how all this is for you. Perhaps you’d rather share it as you see fit than it come spilling out due to worry, I say! It’s good to feel like you have some semblance of control over this.
Do please lean on folks here who live with Polycythaemia vera (PV) and other MPNs. You’ll find others who experience heart-related health concerns too as they’re often the reason we find out about our MPNs. I had a heart attack many years ago, which I’ve taken daily aspirin for, so can appreciate how scary the AF might be for you. I’ve taken hydroxyurea since diagnosis last year and although it caused nasty disabling fatigue initially that’s faded over time. I’m nearly back to my pre-diagnosis levels of energy and agility, if that’s a concern for you about taking hydroxyurea.
Something reassuring I share with others here who are rightly concerned about taking chemotherapy like hydroxyurea is what my fancy haematologist told me. Despite decades of using hydroxyurea, former child patients with sickle cell who took hydroxyurea for years don’t have a higher incidence of other cancers. Taking hydroxyurea for literal decades hasn’t caused sickle cell survivors to have more cancer. That’s got to be a good sign of its efficacy, I’d say.
However, it is worth bearing in mind that taking hydroxyurea makes our skin more photosensitive and thus more prone to sun-related damage, so using sun protection to defend against UV light is a must, even on foggy days. Having Polycythaemia vera (PV) raises our chances of skin cancers so it’s doubly important to protect our skin in the sun.
If you’re interested, I attended a blood cancer conference this year and took many notes, which I shared here. One point I like to reassure myself of is that despite having been diagnosed with Polycythaemia vera (PV), my haematologist reminds me that I am more likely to die with Polycythaemia vera (PV) than from it. We can live long lives with relatively minimal adjustments.
Do please keep us posted as to how you get on, @Denny. You are not alone with this and we’re here to support you with anything that arises.