polycythemia vera ???

[fady]

Hi every one ,Im fady 30 years old My doctor said I highly suggestive polycythemia rubra vera ..Hg 17.1 Hct 49.6 platlets 800 Im very worried about prognosis and survival could any one help me ? thanks

[JediReject]

Hi fady, , a worrying time for you. Trust you have been referred to a Haematologist to confirm your GP suspicion. . There are many Forum members with PV who will reassure you that if it is indeed PV , with treatment you can live a long and reasonably normal life. We all of us have to attend clinic for regular blood count checks and some of us take medication.

I'm sure you will get a number of responses along these lines so please try not to worry yourself silly although like I say there's no denying the initial diagnosis and the weeks that follow are possibly the worst time.

Welcome to our Forum - Chris

[tracey13]

HI fady,

It's all very scary when you are first diagnosed you read all kinds of scary things on the Internet.

My husband has got pv jak2 positive he was diagnosed in 2012 he's 44 years old now. We were so frightened, but let me reassure you as long as you are being manageable life expectancy is normal.

My husband takes a chemotherapy tablet daily along with an asprin and goes for 3 monthly checks. He has a pint of blood removed every 3 months to keep his hct level down. Before he started on the hydroxy chemo tablet he was having monthly venesections. It was absolutely draining him.

He works full time only thing he suffers from its fatigue. He is absolutely shattered by 8.30pm.

Pv is covered by critical illness policy. You are also entitled to free prescription with it being a blood cancer.

There's people on here had pv for over 40 years.

Try not to worry too much as you will get lots of support on here.

Tracey

[revfee]

Hi Fady, It is such a worrying time when first diagnosed. I have PV Jak2+ and was diagnosed when I was 29, I was terrified and was given less than accurate information too (less was known then). That was nearly 29 years ago, I'm now 58, work more than full time, and take hydroxycarbamide. My biggest suggestion is that you get referred to a haematologist who specialises in mpn and start getting sorted - you are most at risk before diagnosis when the counts are so high and clots therefore more of a risk. Meanwhile drink plenty, exercise - and keep your appointments. Also, read the info on this website rather than googling too much - there's a lot of rubbish out there!

Good luck, Fee

[Sand-Dancer]

Hi from sunny Portugal.

I come from Tyneside, UK and I was diagnosed with PV 11 years ago at the age of 53.

I still feel fine - and do everything I want to do in life!!!

It's my Hematocrit levels that I (and my consultant) watch mainly and he adjusts my medication (Hydroxycarbomide) if needed to keep them stable.

Anyway - I take the medication and have checkups every 16 weeks and if I am in Portugal where I visit for a few months at a time I have a blood test there and scan it over to him in the UK.

So relax and try not to worry - oh, and you've done the best thing possible by joining this forum! It's fabulous!

Lesley x

[tracey1003]

Hi Hady i also have pv jak 2 I take aspirin and venesections. I was diagnosed a year ago after having my doctor request an appointment for 2 years and 1 phonecall that said due to my levels i wasnt urgent funny that so probably had it for 3 to 4 years. But after stressing right of my brain. I now understand so much more and am just getting on with it and i love this group it makes me understand the disease. I am in Australia. Sometimes you wake up and think oh my god i have cancer then you read a few things on this site and you settle down. Message me anytime. All the best Tracey

[jillydabrat]

Hi my friend, I was diagnosed in January, 2015 and, like yourself, was full of worry. I googled everything I could and got even more scared, then I found this site and it was like coming home. I am 55 and have a relatively normal life, other than the fatigue and joint pain. Please don't look at any other site than this and the MacMillan Cancer website. These are the only 2 reliable sites, 1 has personal accounts, the other has correct medical accounts. As said above, first thing is being referred to a Haematologist for diagnosis. Hope this has eased your worries a little. Take care, and I am thoroughly jealous that you are in Portugal.

[Mazcd Partner MPNVoice in reply to jillydabrat]

don't forget our website mpnvoice.org.uk which is separate to this forum.

[Mazcd Partner MPNVoice]

Hi Fady welcome to our forum, we can all understand how worried you are at the moment waiting for your results, but as you can see from this forum there are very many people who have PV and had it for years and are living normal happy lives. In general people with PV who do not progress to MF or leukaemia can expect to have a normal to slightly reduced life expectancy if properly monitored and treated as necessary. But you must bear in mind that in some patients the PV may remain stable or gradually progress over time, this means that may never experience many of the symptoms and outcomes that you read about, or if you do it may not be for many years. You will also read that PV can develop into MF (myelofibrosis) or acute myeloid leukaemia, but don't panic as this IS VERY RARE.

Once you know exactly what you have you will be able to learn more about it from the people on this forum and by reading about it on our website mpnvoice.org.uk and I can send you some of our information booklets, which you can also download and print yourself from our website

mpnvoice.org.uk/about-mpns/...

It may also help you to have a buddy to talk to, a buddy is someone who has the same MPN as you and can help and support you from the perspective of someone who really understands what you are feeling and going through, if you would like to have a buddy please email me at [e-mail].

Best wishes, Maz

[Loubprv Volunteer]

Hi

Just another confirmation that you really will be ABSOLUTELY FINE! Bit long. Apologies.

Polycythemia was classed as a rare blood cancer by the world health organisation in 2008. HOWEVER ! Cancer is just a term or a word in our case so please don't be frightened by it.

I'm 62, was diagnosed 8 years ago take HU have venesections, no fatigue, walk for at least an hour and a half a day up the Lakeland fells, and also do exactly what I want, including cooking suppers for up to 20 friends, sailing, playing tennis whatever.

Do not, I repeat, do NOT please, take to heart all the rather worrying posts you might read on this site.

You must remember that people mainly post a new query when they don't feel well, are worried, or just newly diagnosed - like you.

For every somewhat worrying / dreary post you'll read there are probably 50 to 100 folk out there just getting on with life.

I buddy a smashing girl ( amongst quite a few other lovely ladies) who is in her thirties and gave birth to a beautiful baby girl a few months ago.

So,if you can, find yourself an excellent haematologist who specialises in MPN's ( myeloproliferative neoplasms, of which PV is one) because you will most certainly get better advice and treatment - I did. Remember you can go to ANY hospital anywhere you wish, I travel an hour and half to mine rather than an attend my local hospital where no one seemed to have a clue quite frankly.....all you have to do is write to your gp and ask for a referral to the haematologist of your choice.

Also suggest as Maz said, you look at

mpnvoice.org.uk -

much superior to any other website and written by people who know what they're talking about. It's a good idea to read and become familiar with every medical term referring to your condition, and try to attend a patients forum. You really will get a lot out of it.

Goodness, do you have time on your side! There's so much research going on at the moment, new drugs being developed all the time. I'm quite confident I'm going to outlive all my boosy over weight friends!

You'll be fine honeybunch, it may take a couple of years for you to get your head round it all, but time will fly, and in no time you'll probably forget most of the time that you have any problems at all.

I certainly have, I take my meds along with a probiotic and simply get on with life.

So will you! so, although this will be on your mind every waking hour, and during the night when you wake up worrying about it ( we've all been there) one of these days, you won't worry at all.

Drink lots of water ( at least 2 litres every 24 hours) eat a really healthy diet and try and get some exercise every day. All helps.

Lots of love,

Louise.

xx

[Emeraldpv in reply to Loubprv]

Hi Lou

Which hospital do you go to?

[Loubprv Volunteer in reply to Emeraldpv]

Hi

Christies in Manchester.

Superb.

x

[Chez1947 in reply to Emeraldpv]

Thankyou Lou you have made my mind a bit easier I was diagnosed yesterday with PV JAK2 positive, I read the post above yours and it freaked me out, with the talk of leaukaemia my sister died of it 16 years ago. At the moment I am not on anything but aspirin as I managed to get my blood down by cutting the cigs down ( I have COPD) I know give up, the nurse said to do it in stages I will give up.

[TrickyDicky]

Hi Fady

It is a very worrying time when you are first diagnosed and it will take some time to get your head around it all. My suggestion would be to make use of MPN voice and if you can go along to some of the forums that are held periodically. They're really good and it helps to talk face to face with others in the same boat.

Richard

[Fika500]

Try not to worry and do trust your haematologist. I was diagnosed with Polycythemia Vera in 1986. I am JAK2 positive. I did well with venesection, initially it was every two weeks, then monthly and eventually six weekly. Side effects of PV were rosacea and itch. I have lived well for thirty years. In 2014 it progressed to probable Myelofibrosis. The rosacea continues and now I have gout and fatigue but symptoms are well controlled with antibiotics for rosacea & allopurinol fir gout and I just need to pace myself regarding fatigue. Progression has been slow. I think the main thing to understand is that the condition is very individual and not easy to predict but if you can learn to accept the uncertainty and take each day as it comes, you'll be okay. Try not to worry. Do eat well, exercise when you can and stay well hydrated.

[Sam19640]

Hey Fady, Sorry to hear you have this condition.

I hope I can give you some hope as I have had Polycythemia Vera for most of my life. I was fully diagnosed in 2002 and am now 57 and going strong. I have had symptoms since the age of 15 but had no idea what the cause was.

My hemaglobin level was through the roof and I had 7 venesections in 7 days to get it down to 160 g/l. My oncologist gave me 2/3 years to live but I have proved him wrong.

I suffer from all the symptoms but live a full life with venesections alone and have been strongly advised not to use drugs to control it until it's completely necessary. I have these done about every 8 - 10 weeks. Probably one of the best things I have done is to start using raw Cacao powder daily and it really helps with my iron levels and a host of other things. I don't need any supplements and use this alone.

I hope you get some help from this as I know how scary it feels when you get first diagnosed.

Good luck with your life and I am here if you need to bounce ideas off or support.

Take care

Sam from Australia