Polycythemia vera

Hi all not sure if ive introduced myself before now… minds a bit if a muddle from time to time i was diagnosed with Polycythaemia vera (PV) back in 2018 its been somewhat off a rollercoaster ride … 2 months after my diagnosis my then wife walked out of the family home leaving my head in a spin after diagnosis… so much for the imortal words in sickness and in health …i waS left to guide my daughter then 15 through her exams as best i could with everything going on… biopsies, venesections ,countless haemotology appointments and remembering to take my apixaban as well as juggle work …happy to say i am now in a better place had some scares along the way blood clot and varices bleeds… 2 day procedures to band and glue varices all seems ok at the minute although i do stress somewhat regarding life expectancy as its not very black and white im now 50 having being diagnosed at 46 i read soewhere 22 years and somewhere else a full life some clarification on this would be most appreciated thank you
sorry for the over exuberant waffle

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Hi @Carlos, a warm welcome to you to this community! There are others with Polycythaemia vera (PV) and other MPNs on here who I’m sure will introduce themselves! It sounds like you’ve been through a huge amount so it’s really good to hear that you’re now in a better place. It’s totally understandable you have concerns around life expectancy. We have some general information on our webpage here, Polycythaemia vera (PV) prognosis | Blood Cancer UK. It explains how, if you want to know about your individual prognosis, your healthcare team are the best people to ask. They know you and your individual situation.
MPN Voice also have some information at the end of this webpage about prognosis, and some of the factors which can affect someone’s prognosis with Polycythaemia vera (PV) - Polycythaemia vera – MPN Voice.
Our @BloodCancerUK_Nurses might be able offer some further general information Carlos, so I’ve tagged them, but the best people to speak to will be members of your individual clinical team.

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Hi @Carlos

Thank you for posting and welcome to the forum.

I’m 40 and was diagnosed with Polycythaemia vera (PV) two years ago. Very similar to you, I initially had several venesections before starting interferon injections to stabling my blood count. Last year I have a pretty severe heart attack and though there’s been no associative link to my blood cancer it has spooked my haematologist to shifting onto another treatment. Yes, I chuckle, because with anyone diagnosed with cancer, prognosis is often the first thing researched and according to Google it’s 2.5 years untreated. From my internet research different sites have different estimates, and in my short time of being diagnosed I’ve come to focus more on the word “estimate” then the actual number.

I’m still in a lull trying to plan my life going forward and having a number regardless of what it was would make that much easier…

I think it’s fair to say (with no medical backing) that everyone is unique and many blogs and discussions I’ve had with fellow Polycythaemia vera (PV) patients is that life can carry on as normal as long as you and your medical team keep an eye out. Easy said then done because normal life meant not having a physical and mental weight or cloud over your head but unfortunately that is now the case.

To my knowledge and personal understanding that as long as it stays Polycythaemia vera (PV) and you feel ok there are no constraints but with your body producing more blood you will also be susceptible to clots which can be very damaging as you well know already.

Sorry I cant answer your question but I would say keep going to your appointments, taking the advice and medication recommended by your medical team even if it’s just to get the all clear or keep calm and carry on advice.

I totally empathise feeling like your dangling on the end of a fishing rod… it’s so frustrating but you’re not alone so be sure to keep us updated.

Stay positive… you’re stronger than you to be where you are with all you’ve been through

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Hi @carlos a great big welcome to our forum, I think it is very natural that your mind is in a muddle.
You have gone through so much since 2018 with your family, tests, treatments, side effects and Covid times as well.
I am so glad that you are in a better place now.
As for 22 yrs life expectancy, I was given 5 yrs with my blood cancer and I am still here 18yrs later and enjoying life.
No need to apologise for ‘exuberant waffling’ although personally I do not think you did, I find it is helpful just to put things down in black and white sometimes.
Do you have any support?
You now part of your forum family and the Blood Cancer UK support line is there for you.
Be kind to yourself, look after yourself and please keep posting

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Thank you for reply great to hear your doin well yourself 18 years later is very positive indeed at work riht now will mag again soon kind regards to all Carlos

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Hi @Carlos sounds like you’ve been through a really rough time. The blood cancer alone is more than enough for most of us. It’s a very confusing time both during and after diagnosis and doctors only give patients a general idea of what the likely course of a disease is based on their own experience and some general statistics. A lot of people fall outside of their range like the immortal @Erica :wink: and really if your health stabilises, there’s no reason why you can’t have many years of quality life. I hope your personal situation improves and that your daughter is coping with everything.

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Thank you for reply its such a help to talk on here about worries and with people who understnad… theres good days n bad over analysing /thinking days for us all i guess … im in a good place in my personal life met a very understanding wonderful lady who has helped get me back on track my daughter passed all her exams and has now completed college with distinctions and has started University im a very proud Dad k8nd regards tto all Carlos

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Dear @Carlos, thank you for posting and it seems like you’ve been through a very tough few years. I am very pleased to hear that you are in a better place. As my colleague Alice mentioned, it is advisable to speak to your treatment team regarding prognosis. Our colleagues at MPN Voice say the following regarding Polycythaemia vera (PV) prognosis:

'Prognosis - If you have Polycythaemia vera (PV), your prognosis depends on many factors including your age, other illnesses you have, and Polycythaemia vera (PV) complications you may develop with Polycythaemia vera (PV). Blood clots (thrombosis) are common and are frequently serious; the risk of these events increases with age and previous episodes. The goal of Polycythaemia vera (PV) treatment is to reduce the risk of complications and prolong your life.

Patients who do not suffer from other diseases (especially MF or leukaemia) have a normal to slightly reduced life expectancy.

About 15% of people with Polycythaemia vera (PV) develop a complication of the disease known as myelofibrosis (MF). Please visit our Myelofibrosis page for more information about this disorder.

Some patients with Polycythaemia vera (PV) transform to acute myeloid leukaemia (Acute Myeloid Leukaemia). The onset of Acute Myeloid Leukaemia is rare but can have a poor outlook, as this form of leukaemia is often resistant to treatment. If this is a concern for you, please discuss this with your haematologist’.

Please do contact your treatment team as I am sure they will be able to reassure you further. If you would like to contact us over the phone for discussions you are most welcome: How to contact Blood Cancer UK | Blood Cancer UK
Kind regards
Gemma

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Hi @Carlos I have been thinking about you and just wondered how you are doing now?
Look after yourself

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Thank you Erica im doing ok overthinking is a daily trouble but im slowly getting my head around things and trying my bestto stay positive :sparkles:

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Hi @Carlos I think knowing what you are doing is the first step and you are human.
Yes, positivity is so important
Look after yourself and please stay in touch

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@Carlos

As much as it’s easier to be negative and downbeat but acknowledge the good days too. Crazily I found a day that my diagnosis wasn’t on my mind or hindered me that was a day that wasn’t wasted even if I was just doing nothing and catching up on some TV.

As much as the label of having blood cancer can effect you physically, emotionally and mentally try and understand and find ways to manage what you can control. I know it’s easier said than done but the moment you know what that is, and speaking and sharing on this forum definitely helps with that process, the more stronger you become.

Sometimes all it takes is a doctor or a loved one to say “you’re going to be fine”, “this isn’t what’s going to define you” “you’re one of the lucky ones that is going to get through this” and sometimes you need to say this to yourself. But regardless of who says it or what needs to happen to find hope, confidence and strength it will take time. And when it comes, and I’m sure it will, the only regret will be that you didn’t get to that place sooner but thankful you are there now.

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