I’ve posted on here a few times now with my worries about having a blood cancer and my very troublesome migraines and this evening it has been confirmed I have polycythemia vera with JAK2 mutation. I’m feeling ok about it as to be honest I couldn’t see it being anything else at this point and I’m keen to see if treatment helps my migraines.
As with everyone, I think the worst thing has been the waiting and I’ve been a bit unhappy with some of my GP experiences. I did end up paying privately to see a haematologist and to have the tests, which I know I’m in a very privileged position to be doing and feel so lucky to have been able to. I think in hindsight I should have been a bit more pushy with the GP and articulated my concerns about blood cancer but we live and learn.
My haematologist is now contacting the NHS haematologist I’m due to see in March and I’m starting aspirin and venesections. I did used to be a regular blood donor so I am fortunate to not fear needles or blood! I’m guessing there won’t be biscuits sadly.
Thank you to everyone who has supported me and thanks to this website for being so informative.
Hello there @Barry1, I’ve seen your posts of late and I just wanted to welcome you and say how sorry I am that testing has found Polycythaemia vera (PV). As you’ve already seen, the forum is a supportive space and I hope it continues to be for you. You’re not alone with that diagnosis.
I really feel for you, having to go private to get tested for the cause of those migraines. Well done for persevering and seeking further testing. Now you have more information about what you’re living with, and treatments have begun, so you’re at less risk due to your self advocacy. Here’s the great Blood Cancer UK about MPNs and more specifically Polycythaemia vera (PV): Polycythaemia vera (PV) | Blood Cancer UK
Glad to hear you’re okay with the venesections—after my own diagnosis with Polycythaemia vera (PV) in 2023 I had many phlebotomies but had never donated blood before so had quite a crash-course in learning to keep super hydrated the day before. Hopefully you’ll still be offered something sugary at yours! I like to treat myself to coffee and a doughnut after mine.
I’d say maybe chase up your NHS haematology appointment prior to it happening just to check you’re in the system, as it were. Perhaps also ask for all the test results from your private testing, if you haven’t already, to keep for your own records.
Just wanted to end by saying I really appreciate your proactive attitude and sharing on the forum, I’m sure it really helps others experiencing these worrying sorts of genetic and other tests. If you do feel like you’d like to speak to the lovely expert nurses at Blood Cancer UK about anything, they can be called free on 0808 2080 888 or emailed at support@bloodcancer.org.uk.
Do not hesitate to ask anything that comes to mind at this early stage after diagnosis @Barry1, the forum is here for support. Do please let us know how you get on.
@Duncan thnaks much for your reply. Good idea to get all of my results from the private haematologist. Should be straightforward, probably moreso than some of the results I’m awaiting from the NHS! Also probably good idea to check on my NHS appointment, would hate to fall off the radar at this point.
Thanks for the links and resources.
The haematologist said I would have venesections approximately every 3 to 4 weeks as my numbers aren’t too bad at the moment but guess this varies from person to person?
Do you manage to stay quite active? I was running regularly before it seemed to trigger my migraines so hoping to get back to that if they settle a bit.
@Rammie18 yes this did cross my mind. It was strange that my iron stores were low (ferritin) but my haemoglobin was the high end of normal so it never raised any concerns when donating blood, but it’s been explained to me that with polycythemia vera this is what happens so makes a lot of sense now.
You’re most welcome @Barry1, I remember how it felt for me and how this forum, and actually @Rammie18 himself (hope you’re well Rammie!), was so helpful. I’m always learning new stuff from others here.
Glad to hear you’re tolerating the venesections, they’re a quick way to bring platelet and other elevated blood cell numbers down, from my non-medical understanding. My haematologist talks about “freeing me from phlebotomy” with just medicine, but I don’t mind the bloodlettings these days.
You know, I do stay active. More so now than before diagnosis, partially because we adopted an active little dog last year! After diagnosis I started taking daily hydroxyurea, a “mild” chemotherapy you may have heard of already, and it caused me really horrible fatigue.
I love hiking but the fatigue really slowed me down. Instead I got back into yoga to keep moving, and am really pleased to be building up to longer hikes again. I can imagine getting one’s blood pumping would affect migraines, so hopefully having less blood after venesections will reduce the pressure for you. Don’t quote me on that! You’ll know what your body can manage, enjoy it I say.
Remember to take it easy on yourself after this big news, the forum is here for you. Do have a look around @Barry1, we’re lucky to have many lovely folks living well with MPN (Myeloproliferative neoplasms) like ours, and other types of blood cancer, sharing great wisdom.
Aww really glad to hear it, and I hope you’re settling into your new job. They’re lucky to have you. I’m doing well, thanks for asking. Feels like my energy is returning, or I’m managing it better
It’s the annual blood cancer conference over here this weekend so I’ll be sure to tag you with any juicy information I pick up
