I appreciate discovering this site after being diagnosed with Polycythaemia vera (PV). It’s surprising because I’m 44, and it appears this is less common for my age group. I had my 2 weeks of shock and emotions, but knowing it can be managed, I’m focused on doing what I need to do. I have 3 teenage children and want to be around as long as humanly possible.
I’m researching dietary needs, just learned I need to find a Myeloproliferative neoplasms (MPN) specialist… I have a ton of questions for my hemotologist in today’s appointment.
Is there anything else I should be focusing on at the onset of this journey? Thank you in advance.
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Hello @angelle41,
Welcome to our forum!
We are sorry to hear about your diagnosis of Polycythaemia vera (PV), we can only imagine what a huge shock this must be for you and how difficult and overwhelming this time can be.
It’s great you have lots of questions to ask your team as it gives direction to your appointment and can help focus on topics you’d like to know more about. Your team may also be able to direct to a recommended Myeloproliferative neoplasms (MPN) specialist. Do continue to keep your treating team updated on how you coping and feeling as it’s important they’re aware so they know how best to support you.
In case it can be useful for you, we have a webpage on small things we can do to support our wellbeing during challenging times. It talks through where people can access further support like psychological therapies etc - Blood cancer: mind and emotions | Blood Cancer UK
In case it’s useful, we also have a section of our website specifically for people newly diagnosed with blood cancer, as well as factsheets around side effects. As well as this, all of the information is free to order or download from our shop - Blood cancer booklets, leaflets and fact sheets | Blood Cancer UK – Blood Cancer UK Shop.
Another helpful service we offer is the ‘newly diagnosed’ emails, there are only 7 in total. You will be sent one every week, and they can provide great information for the first couple of months after a new blood cancer diagnosis, each one is different in content but will cover 'what to expect, consider or ask in your appointments, as well as practical tips and advice." You can sign up for these if you wish: sign-up-for-blood-cancer-support-by-email
We hope this is helpful and hopefully others can share their experience with you too. Should you wish to talk through anything with a member of our support team, please do get in touch on 0808 2080 888
Take care,
Emma (Support Services Nurse)
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Hi @angelle41 and welcome to the forum and thanks for posting.
I was diagnosed at 38 and now approaching your age. The shock is totally understandable and once you’ve come to term and understanding the condition and its symptoms and on a course of treatment to manage your levels and they stabilise, life pretty much continues which is crazy to say when you have “blood cancer”
If it gives you comfort (for some it does) it was only classified as a form of blood cancer since 2016. Before that it was a just a “disorder”.
I don’t have children and have a stressful job and now that it’s been a year on treatment (have experience of all of them now) the outlook of life and duration is normal, if anyone can say what normal is.
There are lots of us now with Polycythaemia vera (PV) on the forum so please do continue to ask and questions and share your journey, we are all a great supportive bunch!
Hope the appointment goes well!
My advice is also ask your medical team what the signs are of your Polycythaemia vera (PV) getting worse. Not to worry you but to give you peace of mind and what to look out for anytime you have a blood tests. What the important things are and also what is normal for you. I say this because the condition may produce high/low levels that can be worrying for you to see but it’s not a worry for your med team.
I’m happy to answer any questions you have with my approaching 5 years of experience and living life as normal. (Google quoted me 2.5years.. always enjoy saying I’ve beaten the internet!)
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Hello there @angelle41, a great big welcome to the forum to you. I’m really glad you found it, but am very sorry you had reason to.
I see Nurse @Emma_BloodCancerUK and @Rammie18 have offered great tips already, and in fact it was dear Rammie who welcomed me when I first diagnosed with Polycythaemia vera (PV) in 2023 (hey there Rammie!).
Isn’t it a lot to take in?! I didn’t even know the big C could affect blood cells, that it could be chronic and slow developing, that chemotherapy could be “mild” etc. Quite the steep learning curve I have found.
I’m really glad you feel it’s manageable. My haematologist and folks here in the forum who’ve lived well with Polycythaemia vera (PV) and other Myeloproliferative neoplasms (MPN) for years reassure me that a relatively normal long life can be lived. Perhaps you’d also find the Blood Cancer UK information about Polycythaemia vera (PV) helpful: Polycythaemia vera (PV) | Blood Cancer UK
Hope it went well with your haematologist today and you got some answers to any questions. I find I tend to save up queries in between appointments and raise them when I see my haematologist, or email urgent ones as necessary. I also ask my phlebotomists when I see them as they have some great practical tips. If you’re in the UK you likely have a clinical nurse who you can ask stuff too.
Anyway, I can’t think of anything else I’d want to know at this early stage after diagnosis except maybe to stay aware of how much iron-rich food you eat, including in any supplements, as this can make our bodies produce even more blood cells than our Polycythaemia vera (PV) causes.
Glad you found the forum @angelle41 and I look forward to hearing how you get on!
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