Newly diagnosed with PV

Hello MPN community. Was just diagnosed a couple weeks ago with PV. I am 52 and have had no major health issues throughout my life. I have been active in physical fitness for more than 30 years and now to hear I have this disease was extremely depressing. I had gone through two phlebotmies so far to reduce my HCT levels which were at 55 to start. Looking for some guidance from fellow PV patients on the path forward.  Many thanks, Jay.

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  • Hi, and welcome. My husband was diagnosed about 3 years ago and initially he was very depressed about it. He viewed it as a death sentence and like a typical man, retreated to his cave. He would not do any research on the condition nor would he talk about our future together as he was convinced he wouldn't be there. I on the other hand did lots of research and found lots of helpful info and this very good forum.  He also went down the hypochondriac route and viewed every pain or illness through the PV. It's been a long journey mentally for him but think he now has it sorted, although on the approach to our 3 month checks he gets quite anxious. He takes hydroxycarbamide, 4 tablets a day plus a baby aspirin ( never had venesection). His counts have been fairly steady for over a year and he really has very few side effects or symptoms. He still will not read anything about PV or look at this site but that's how he handles it. Good luck with your treatment

  • Your husband is very lucky to have you at his side.  Take care, Sue

  • Hi there. I am 49 and was diagnosed 2 years ago now. I totally understand where you are coming from.. The word cancer is banded about (although it's still not clear to me if its cancer or not).. You don't see a way forward.. All I can say is.. I am 2 years down the line now and although, at first, it took a while to get on top of it ( I had several venesections in the initial few months) and despite the fact that my liver is affected.. I am relatively "healthy" these days (touches wood)... If controlled properly it's chronic rather than critical.. I take hydroxy but haven't had blood taken for over a year now.. I am at work and go on holiday regularly...  It takes a while to accept that you're suddenly "poorly" but there's folk a lot worse off for sure... Chin up... We can do this!! 💚

  • Hi Ticchi, in answer to your "not clear whether it's cancer or not", MPN's were recognized as a cancer in 2011 by the World Health Organization.  Take care, Jill x

  • Thanks Jill. I am aware of that as my critical illness cover paid out on the cancer clause.. I was just pointing out the word "cancer" is not one I would use to describe my condition (nor would my Hematoligist). It's not something someone should dwell on is all I was suggesting. Thanks tho. 

  • totally agree Ticchi, live each day to the full.  It can be a struggle when the tiredness overwhelms you and the symptoms flare up but I just think of all those who are in far worse position.  Very interested in your critical illness pay out, could you share how that worked as I am sure I have that as well.  Best wishes, Jill

  • Hello Jay, sorry to hear that you are having to deal with this. I also have PV, was diagnosed 28 years ago. When you have kept yourself so fit it must feel even more unfair that you now have to deal with PV, but I'm sure your general physical activity and eating well must help your body deal with the PV. I take hydroxycarbamide, which for me has been ok. I work full time (and then some!) so no need to feel that active life is over.  You must be reeling a bit at the moment, but believe it or not, you will get to a point where PV isn't the centre of your life just something you live with. Good luck. Fee

  • Hi I am 40 and was diagnosed with PV in November last year. I've probably had for about 10 years thinking back, it's the itchy skin which gives it away. My HCT was only just 50.5 so borderline, same with other counts but JAK2 positive. No other health issues! I had venesections for 3 months and it fell to 43, but then after a months break was back up to 50. All a bit depressing I agree but I view it as it could be a lot worse, the chances of progression are low really and if your under 60 like me and relatively fit etc your low risk. I want to avoid the drugs but hey even then it does not sound for most people it is too bad. Hope it works out for you - it's tough to stay positive I agree but PV won't actually kill us I guess like most cancers and with management  seems most of us will live fairly close to normal lives. 

  • Don't worry. I have had PV for 8 years now and am 54. Used to do a lot of running in my twenties, but for numerous reasons stopped. In the last couple of years have trained again, run 2 half marathons, encouraged the wife and kids to run, and between us we've raised a good sum for charity. I have about 6 phlebotomies a year, 3 hydroxyl tablets a day and aspirin.

    I would say do as the medics tell you, but get on with your life and enjoy to the full Jay.

  • Hi Jay.  Welcome!  I was diagnosed with PV over ten years ago and had phlebotomies for about six  years.  I am now on Hydrea and still do everything I want in life.  I live between the UK and Portugal, do Zumba, drink wine and generally forget about PV between my appointments. Big thing - it is treatable and we can totally live with it!

    Enjoy your life! Lesley x 

  • Dear Jay,

    I too felt overwhelmed when I was first diagnosed with PV 10 years.  Nobody knew anything about it, what caused it , they just wanted to do endless venesections and I was wrecked by them.

    But I found superb help on the Web,  both in then US and then this great site started.  The venesections slowed down but caused high white and platelet counts so I ended up on interferon.  I have had a mixed ride with this over the years with more venesections when it needed adjusting.  Plus never getting rid of itching after showers and regular fatigue.  

    But it is a manageable disease and I can live a fairly regular life with it.   When you get over the shock, initial venesections and have learnt a lot more and got wonderful help here you will stabilise and life will return to semi normal.  I wish you the best.

    Mairead

  • Hi Jay welcome to the forum. I was diagnosed with PV in 2012. It's hard for a start and scary until you realise folk are living for years with it as long as they are monitored and  have venesections or Meds as necessary.  This is the best place to get support, you will think you have gained a lot of friends!  The MPN Voice website and Maz the editor is the place to find trustworthy information and medical advice for your PV.  Keep in touch, if you are down or worried you will get lots of support here and so will your relatives.  Kindest regards Aime x😺

  • Hi Jay,

    I'm almost 62 now and was diagnosed with PV when I was 54. It's a shock isn't it?

    It's perfectly natural to feel frightened/ concerned/ depressed - whatever.

    However, although it's easy for me, 7 years down the road to say try not to be, but do!

    This is an orphan blood cancer ie rare. You won't have heard of it, probably don't know anyone else with PV, and that in itself is jolly frightening.

    I remember frequently feeling depressed and tearful for almost 12 months ( and I'm a hardy old bat) - 12 months wasted! 

    The treatment for PV is coming along in leaps and bounds, and quite honestly I no longer even think about it. I take hydroxicarbamide ( 1000mg x5 days a week and 500 X 2 days a week) and have a venesection maybe every 2/3 months. I feel fine - touch wood.

    My haematocrit was 74 when I was diagnosed, I had a good haematologist but he didn't specialise in PV and I wasn't happy with his dictatorial attitude.

    I decamped to the Christie in Manchester, a centre of excellence where I see a superb haematologist specialising in our condition. 

    I suggest you read as much as you can, have a look at MPNvoice.org.uk, (contact Maz and ask for an MPN buddy) take a look at patient power, and generally become an expert and a project manager in, and for your own condition.

    You need to keep well hydrated - at least 2 litres water or more every 24 hours, walk briskly every day for an hour if you can, get plenty of rest if you can ( I don't get up until 9am, go to bed about 11pm) and cut out all the rubbish, if any, in your diet. I also have cut out alcohol but you might feel that's a step too far!

    You'll be fine, I promise. There are lots of us out here, all toddling along with our lives and feeling fine too!

    Maybe you might like to attend a forum - see the mpnvoice.org.uk website.

    All the very best, chin up, and TRY not to worry!

    Love

    Louise

    xx

  • HI Jay, 

    My husband was diagnosed 3 years this November we felt like our world was turned upside down.

    To be honest with you he's had uncomfortable headaches and feeling very tired. 

    This forum is brilliant the people on here certainly put our minds at ease. As long as your pv is managed you live a normal life. 

    My husband started on hydroxocarbamide lat October we were both very scared about this chemotherapy tablet, but it's given my husband a better quality of life headaches have gone he's due his first venesection next month he's not had one for 8 months which is brilliant as he was having venesection monthly it was draining his iron levels. He's now 43 and works full time.

    Take care! Ps this illness is covered under the critical illness cover on mortgages! 

    Tracey

  • Hello Jay, welcome to our forum, as you can see from the replies you have had to your post, the people on this forum are a very welcoming and supportive bunch of people, so any questions or concerns, worries etc that you have, just come on here and ask us. As Louise has said, do look at our website for information, if you would like any of our booklets please email me at maz.cd@mpnvoice.org.uk with your postal address.  Best wishes, Maz 

  • Hi Jay, 

    Don't be disheartened, it's not a death sentence, I was Dx when I was 51 and am now 58 and still working full time. PV affects everyone differently but you will be able to cope with it. Stay positive.

    Nicky

  • Hi Jay. I was diagnosed with PV last September, I'm 58. Like you I've always been fit and active. My blood counts have settled down to within normal limits on 500mg of hydroxycarbamide a day. I don't have venesections because my platelets were high. I got in a heck of a state about it for a few months and I'm not keen on my haematology team. I've found out a lot more about the condition and decided not to get bothered as long as it's stable. I have an exercise programme, eat thoughtfully for nutrition and weight management, drink as much water as I can and I don't really drink alcohol anymore. I get tired but it's manageable. This condition is not a death sentence.

  • Thank you all for sharing your thoughts. It has been a very difficult two weeks, but as I read the many responses, its reassuring to hear so many of your journeys and outlooks. I look forward to correspondence with this community to help with my journey with PV. 

    Thank you, Jay

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