Hi everyone, my husband has recently been diagnosed with PRV. He is only 38 and otherwise healthy. He’s wanted to connect with younger people who have been diagnosed (or still have this condition after many years). He would like to know that there is light at the end of the tunnel. I’m not sure if there are any older people who have had it for a long time, or any other younger people who have been diagnosed? Every day is a challenge mentally. Thanks so much.
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Hi @Mimi1
I was diagnosed at 39 and now 42 and can say I’ve through the initial stages of diagnosis and have learnt more and more about the condition through speaking to medical professionals and importantly patients of Polycythaemia vera (PV) and the amazing community we have on the forum.
Being told you have any cancer is always going to cause anxiety, stress and worry physically, mentally and emotional not just for the patient but for those around them too.
It is important to establish that cancers are different to one another as too peoples living and adapting to continue life knowing they have cancer.
Though it is a chronic disease it is very much manageable as long as you stay monitored. The initial months and years are tough adapting mentally and physically in some cases but once the shock is overcome and you become settled and knowledgable about managing and monitoring things you can continue as normal as the common phrase with Polycythaemia vera (PV) is that you are free to continue life with Polycythaemia vera (PV) in that you’re more likely to pass with Polycythaemia vera (PV) rather than because of it. Sorry if that sounds morbid but often when people hear “cancer” immediate thoughts are type, stage, time left and treatment.
I’m more than happy to “buddy up” or answer any questions based on my personal experiences of anything and I know there are some amazing people from all walks with Polycythaemia vera (PV) here in the forum that will be equally welcoming to offer support and advice
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Hi Rammie, thank you so much. This is all quite worrying as you can imagine and both of us already have bad health anxiety. Can I ask if your blood is thick? My husband’s apparently isn’t that thick and the nurses were a bit shocked by that (a good thing, I’m assuming). We’re very worried as there is so much conflicting information out there. My husband is under the impression that he will only live 20 more years because that is the life expectancy after being diagnosed with PRV. Do you know anything about this? Thanks again!
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Hi @Mimi1 you say every day is a challenge mentally and I expect naturally it is for both of you.
I have a different blood cancer and I am also a bit older, but I have had Chronic lymphocytic leukaemia (CLL) for 20 yrs.
However I do agree with is the mental challenge and they are is so, so difficult.
I often say my emotions and actually my thoughts have been on high alert and all over the place ever since my diagnosis.
However different people will process their mental challenges differently.
I also do not think it matters if you are a family member/carer or the patient.
The Blood Cancer UK support line is there for you both on 0808 2080 888.
Also we are here for you both to share how it really is for you.
The main thing is that you both really look after yourselves and be very kind to and spoil yourselves. Also of course keep posting.
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Hi @Mimi1 there is some very conflicting and unreliable information out there.
I was given 5-10 yrs life expectancy out there and here I am 20 yrs later.
Perhaps try, and I know it is difficult, not to keep searching out there, especially if you both have bad health anxiety.
I look forward to hearing more about you both.
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Hi Erica, thank you so much for this. I appreciate it so much.
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Yes I remember when I was first diagnosed that it was the very first time of hearing of Polycythaemia vera (PV) and having absolutely no idea what it was.
There is a lot of misinformation out there so it’s best to ensure you have confidence in the source. Myeloproliferative neoplasms (MPN) voice and bcuk website have a wealth of informations and offer lots of support and advice as well as the folk here if it’s a patient view you are wanting.
Yes my blood can be pretty thick but with medications and venesections esp a baby dose of aspirin (75mg) that often gets prescribed, blood thinners will help.
I can’t offer a prognosis but there are so many folk whom were diagnosed at a similar age are still going strong in their 70s-80s.
It’s important to note that it seems on recently that they are getting better at testing for Polycythaemia vera (PV) and in the past it was more common people were being diagnosed in their late 60s early 70s when they presented common symptoms or after a series of tests for other conditions. This would explain the prognosis of 10-20 years.
I think you should see diagnosis as a bit of blessing as being made aware early may lay the foundations of becoming more proactive of looking out for certain traits or to take actions to prevent things from progressing or taking a major turn for the worse. Apologies if that’s come out wrong in that no one would take being diagnosed with any cancer as a blessing but being aware of having the condition early on so that you have the time and physicality to potentially prevent things becoming worse.
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I was diagnosed with Polycythaemia Vera at 38 and I now 64. Not quite so young now.
After getting it under control I was prescribed hydroxycarbomide and with regular monitoring I have been able to live a normal life.
About a year ago it progressed to Myelofibrosis another Myeloproliferative neoplasms (MPN).
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Just popping in to ask how you’re doing @Jonpd? No worries if you’d rather not say of course. I often think of you as one of our Myeloproliferative neoplasms (MPN) elders and I’m glad you’re here to advise us newbies! May we all survive as well as you 
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Hello there @Mimi1, a great big welcome to the forum! It’s so lovely that you’re here finding stuff out for you and your husband, it shows such love which I can’t help but find very cute. Hopefully it’s helping to hear from others here who can empathise with you and your husband’s experiences.
I was told I’m a “young patient” when I was diagnosed with Polycythaemia vera (PV) last year but honestly I feel like overnight it aged me about a decade! Or maybe the worry did. Anyway I’m regaining my second youth again thanks to my treatments.
Can’t believe I’m saying this as I live with PTSD and anxiety is a major factor in tolerating that, but yes there is life after being diagnosed with Polycythaemia vera (PV). In fact, your husband may not need to adapt much at all.
Maybe I can offer some advice that has helped me get my head around this terrifying diagnosis? Good haematologists should tell us right away that our prognoses with MPNs such as Polycythaemia vera (PV) are positive, in that we can live into normal old age with minimal adjustments. A common aphorism about Polycythaemia vera (PV) is that we are much more likely to die with it than from it.
Like @Rammie18 wisely says, Polycythaemia vera (PV) is a chronic form of blood cancer and thus it can remain stable for many years, sometimes necessitating only minimal medical intervention. Those Polycythaemia vera (PV) prognoses we can find online of 10-20 years are because people were often diagnosed in older age and their life expectancies at those ages were already about the same. Current research shows we can live long healthy lives into old age. Some even call our blood cancers “invisible” as we often don’t even have any outward sign of them, but of course how we feel doesn’t always match how we present to others.
My treatment has been daily aspirin to thin my blood, daily hydroxyurea (chemotherapy in pill form) to disrupt the JAK2 gene mutation causing the blood overproduction (the main side effect of Polycythaemia vera (PV)), and monthly phlebotomy to remove excess blood (in my case, a pint a month).
After just a year my treatments have worked well enough to bring my haematocrit (sort of like blood viscosity) down to a normal level. In fact, my monthly complete blood counts show my blood cells are all in normal ranges again and so I don’t need the bloodletting anymore, just the chemotherapy and aspirin.
So, please take heart that Polycythaemia vera (PV) can become like noise in the background of our lives and as simple as popping a pill or two per day with regular checkups. There are valid risks of dangerous clotting events which need to be kept in mind but that’s what the medicine is good at minimising.
Perhaps you’d like to read the Blood Cancer UK information about Polycythaemia vera (PV): Polycythaemia vera (PV) | Blood Cancer UK
And maybe also the information about our family of blood cancers, MPNs: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Hope this helps @Mimi1. Your husband is not alone with all this and neither are you. Do please keep posting about how you both get on!
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@Duncan thank you for asking. I feel much better both physically and emotionally compared to this time last year… The treatment is working well and my consultant is pleased.
Still suffer from fatigue but not as much.
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Great news @Jonpd, it is interesting when you look at how you you were this time last year.
Really look after yourself and please do keep posting
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Oh @Jonpd, that is such great news! I’m really glad treatment is working. Sorry to read of the fatigue though, I can empathise with how that can affect even the simplest of activities.
Have you found anything that helps increase your energy and/or decrease the fatigue? Sometimes simple yoga stretches can get my blood pumping enough to help me keep moving on days when I’d otherwise need to take catnaps, just a thought.
Keeping my fingers crossed that treatment continues to do its thing! Please keep us posted.
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I don’t know if this will help but I assume you know that Polycythaemia vera (PV) can progress to myelofibrosis. I was diagnosed with MF also at age 38 and am now 73. I have great docs who keep me stable on meds. There is DEFINITELY light… not only at the end of the tunnel, but as you travel through it. 
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Hi @Marilyn
Were there any signs of your Polycythaemia vera (PV) becoming myelofribrosis that you can recall or was it just said to you?
Wow you doing as well have you have of years is definitely welcomed reading! No doubt any change of cancer is a scary and worrying thing to deal with
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Sorry if I wasn’t clear. I never had Polycythaemia vera (PV) as far as I know. I skipped the middle man and went straight to MF.
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Hi Duncan, so sorry for my late reply (life is crazy as we have two 2 year olds!)
This is super helpful and I really appreciate it.
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Oh @Mimi1, no need for any apologies, time can pass so differently when living with all this. Plus you have those little dynamos to be chivvying around, that must take a lot of energy!
How’s your other half doing since diagnosis? How are you?
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Thank you. I think we are ok. Definitely getting used to the diagnosis. I think the worry is always there - what if this escalates, what if he’s not around for the girls, etc. We are trying to implement healthier changes, but it takes time. He was under the impression that younger people do not get this, but it’s good that I’m finding more and more people have helped with their expeirence.
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I’m glad you’re doing okay. And yes, it can be lived with, right?!
Sadly that’s been my experience too, of managing worry about risks that may never occur. But I think it’s wise to be mindful of, say, the risks of infection and clotting or how our bodies may react strongly to skin-related stuff like photosensitivity.
I’d say always pass anything worrying by your specialists as they should reassure your husband of anything untoward and ways to manage that. You can always ask the lovely specialist nurses on the forum too for their pearls of wisdom.
Your husband might find it’s the slow changes in his body that are most annoying or need adapting to most. My skin became very dry over time from taking hydroxyurea, despite a lifetime of oiliness. My haematologist taught me how to moisturise properly, and all is well again.
Do keep us posted @Mimi1 about how you both get on.
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