Just diagnosed at 73 for pv probably

Recent diagnosis
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Any know what the prognosis of this time wise

Thank you

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Hello @Susan6677

Thank you for taking time to send your post into the forum

I’m sorry to learn about your diagnosis

You may find the following link of use, What is polycythaemia vera (PV)? | Blood Cancer UK

Alternatively, please remember you can always call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.

Our phone lines are open:

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Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.

Do feel free to let us know how you get on

Take care

Kind regards

Mike

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Does diabetes 2 affect the platelets

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Hello there @Susan6677, welcome to the forum at what must be a worrying time.

I’m really sorry to read that you may have been diagnosed with Polycythaemia vera ('PV'). I was diagnosed with this 3 years ago and can appreciate how any mention of cancer is likely stressful. I imagine added to previous health concerns this is a lot to think about right now.

I see dear @GenesisDevice has offered the same suggestions that I would at this early stage. If you’re pretty sure it’s Polycythaemia vera ('PV') that will be your diagnosis then do read the Blood Cancer UK information above in the red What Is Polycythaemia vera ('PV') link.

We forum members can’t offer medical advice and your queries are best asked of your haematologist or clinical nurse specialist (CNS) or even your GP. Maybe you were given the phone number of a CNS to contact?

For now I’d really suggest calling the specialist nurses at Blood Cancer UK for free as you can ask them about your specific symptoms and diagnosis on 0808 2080 888.

Hope that helps @Susan6677, do please keep us posted.

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Thanks for your reply
I’m in early stages and very few symptoms at the Moment
But of course worried about the future and what it holds
It seems very rare and just wonder ing how it affects older peoples prognosis
I can’t seem to see any later age diagnosed on here

Thank you
Susan

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Hi @Susan6677 and welcome to the forum.

I see that the wonderful @Duncan has responded. He’s who I probably tag when others ask about Polycythaemia vera ('PV')

I have a different blood cancer and when first diagnosed I wondered like you what the future holds.

What I found was that my Consultant was more than happy to share a prognosis if I didn’t respond to treatment.

That’s why I would encourage you to speak to your Consultant as blood cancer is different for everyone even if the Headline Diagnosis appears to be the same as someone else.

I tend to try and just enjoy each day and appreciate the simple things in life.

Having been diagnosed in October 2023 and then gone through a donor stem cell transplant April 2025 that’s even more the case now.

Take care and do keep us updated when you feel like it.

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Oh @Susan6677 I am so glad that you have found us and I understand you want a definitive answer to your question.

I also wanted an answer to that question when I was first diagnosed with another blood cancer.

I think what I have realised is that we are all unique, very complex beings with our own medical histories.

I was diagnosed 22 yrs ago and my 70th birthday, 6 yrs ago, was my best birthday ever. My diagnosis gave me the opportunity to assess my life and decide what I wanted to do and with whom. I am fitter now than I have ever been and I have learnt how to manage my symptoms and condition.

I don’t worry today about what might never happen, but it takes time, be ever so kind to yourself and keep posting

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Oh that’s great that you have very few symptoms @Susan6677, long may that last. Personally, I was fortunately diagnosed before experiencing any symptoms and none have arisen yet, I think due to treatment stopping them. It may be the same for you, let’s keep hope!

You’re right that Polycythaemia vera ('PV') is one of the rare types of blood cancer but there seems to be many of us around the forum who live with it, and even more who live with other closely related Myeloproliferative neoplasms ('MPN') like Essential thrombocythemia ('ET'). We are certainly not alone on the forum, people of all ages with Myeloproliferative neoplasms ('MPN') are members here.

Those of us diagnosed with Myeloproliferative neoplasms ('MPN') tend to have similar and overlapping treatments and often offer tips around the forum. No matter our age at diagnosis, from what my haematologist tells me we are likely to live into normal old age with these Myeloproliferative neoplasms ('MPN') rather than pass away due to them. This has been so reassuring to me when the Polycythaemia vera ('PV') stresses me out. Maybe you’d like to read the Blood Cancer UK information about Myeloproliferative neoplasms ('MPN'): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK

I’d agree with dear @DuncanB (thanks for the lovely compliment, Duncan!) that our consultants will share our prognoses and talk factually about what we’ll be living with when diagnosed with Polycythaemia vera ('PV') and how it might affect other conditions, like that diabetes you mentioned. Mine helped me sort out my lifetime of insomnia! You may be lucky and have a specialist who is careful in how they treat you, but I’d say to prepare for some blunt facts. My first haematologist unfortunately shared inaccurate information when diagnosing me so the forum was very helpful for helping to learn what I should have been told.

If you have someone to go with you to appointments that can be a great help for taking notes while you can concentrate on what your specialist is saying. Keeping note of all queries big or small to ask when speaking with a specialist helps me. Keeping note of any symptoms or changes in health can be helpful for building an idea of how the Polycythaemia vera ('PV') or its treatment is affecting us. Asking nurses practical tips is often helpful for me too, especially when I see phlebotomists who work with folks like us every day in haematology.

If you’d like to look around the forum for specific topics you can use the search box at the top and I bet you’ll find many useful threads with other members. I’ve been lucky to get to know many community members like dear @Erica (hello there!) simply from reaching out around the forum or by starting a new thread as you did here.

Keep us posted please @Susan6677, and do consider giving the Blood Cancer UK nurses and your specialists a call to talk through any medical queries.

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Thanks Erica

That’s very consoling your email

You have had it a long time then

It’s the unknown isn’t it

I’m trying to be positive about all this

Susan

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Thank you for all that

I will keep positive waiting for my bio appt

Susan :+1:

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H

Thanks for your email reply

Can stem cells work for Polycythaemia vera ('PV')

That’s interesting

Has it cured you with the disease

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Hi @Susan6677

I’m not sure if transplant is an option for Polycythaemia vera ('PV') or not.

The @BloodCancerUK-SupportTeam may be able to advise. Your clinical team should be able to advise too.

I was in the fortunate position of being healthy other than the diagnosis.

Also very fortunate that a donor was found for me.

I’m doing well at present but no one has mentioned cure or remission to me.

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You’re very welcome @Susan6677, I’m glad you found us here. A little dash of positivity really helps, I find.

Just to add to what @DuncanB has kindly shared, my haematologist said that stem cell transplants can be quite risky, take a lot of time and energy to go through, and although they’re a potential treatment for those of us with Polycythaemia vera ('PV') they aren’t usually offered.

Typical treatments for Polycythaemia vera ('PV') are shown to be really successful without going the transplant route. Polycythaemia vera ('PV') treatment tends to be taking a medicine like hydroxyuea with its decades of research behind it, often a simple aspirin to thin our blood, and occasional phlebotomy to remove some blood when it’s notably thick. Sadly, I’ve been told that Polycythaemia vera ('PV') is currently incurable and remission is unlikely, although medical research is advancing. However, I’ve also been reassured by my haematologist that Polycythaemia vera ('PV') can be lived with into normal old age, with some adaptations. I’m practicing that 3 years on, and so far so good!

I’m sure you’ll receive some great advice from the Blood Cancer UK team that Duncan tagged, but these queries of yours would be great to ask your haematologist too. I keep note in between appointments then send these queries in advance so we can discuss them, maybe yours is an approachable type too @Susan6677.

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Thank you for that

I will take notes with my appt which is in 2 weeks for a check up

No news of bio yet

Susan

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Hi @Susan6677

I see @Duncan has provided a response re Polycythaemia vera ('PV') and transplant.

There are so many factors that determine whether transplant is a possibility.

I was 59 when diagnosed with Myelofibrosis and was approaching 61 when I had a transplant.

While getting donor cells in was like a blood transfusion, it’s what they need to do pre transplant in terms of chemotherapy that flattens you.

All your immunity is basically wiped so you have to have all of your childhood vaccinations again.

I’m really grateful to have had the chance of a transplant and I will admit it’s the toughest thing I’ve gone through health wise.

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Dear @Susan6677,

I am sorry to read about your diagnosis of Polycythaemia vera ('PV'), I imagine this was quite a shock. I am so glad you found our forum and you have had such wonderful support here already.

I cannot add too much to all the lovely replies you have had but I just wanted to add to what @Duncan has mentioned, stem cell transplant isn’t routinely used for Polycythaemia vera ('PV') unless the disease has changed into a different type of blood cancer, which is rare. For most it is managed with medication or venesections (taking some blood away) and the aim of treatment is to keep the blood cells at a safe level to prevent any complications. If you wanted to talk this through in any more detail you are welcome to call us on 0808 2080 888.

I have also attached our Polycythaemia vera ('PV') information here if you need it at all - Polycythaemia vera (PV) | Blood Cancer UK (Apologies if you have already been sent this).

Do keep us all updated with how you get on.
Best Wishes,
Heidi J (Support Services Nurse)

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