Just found out I have pv

[Nettie22]

Hi everyone as you can guess I am new to this site which was recommended by my consultant. I have been told I have pv with negative jak2. I have had 2 venesection a week apart , my next one is in 4 weeks. Reading through many posts I have gained more information than anywhere else so thank you. I will be honest I am a little scared of what it is exactly I am 45 and have 3 fantastic children my partner is as confused as I am . This has all come about from a mini stroke I had back in March this year. The tiredness is driving me nuts as are the headaches and feeling dizzy.. I do have one question what is the difference between being jak2 + and jak2 - can't seem to find an answer anywhere if someone could help please.

[Bothwell]

Hi Nettie

I am 53 with PV and jak 2 positive. I was diagnosed 2 years ago. It is really scary when you first find out but you can get a lot of info from fellow suffers on this site. To answer you question jak 2 means they test to see if you have mutation gene. If it is positive you have PV if negative you may still have PV but this test gives a diagnosis earlier hope this helps.

[revfee]

Hello and welcome to the site. It is overwhelming when first diagnosed but glad you found this site with accurate information. I have PV jak2+, but when I was diagnosed in 1988 there was no such test... For those of us who have it the jak2 mutation is what caused our PV but there are other mutations and there seem to be some yet to be found! From what I read here there doesn't seem to be much difference to our actual disease whether we are jak2+ or not, although do ask your specialist doctor's and nurses.

I also was diagnosed after a clot, for me a heart attack, it often seems to be these events that bring us to health professional's attention so we can be treated - so in a way the mini stroke may have done you a favour.

Keep going, ask as many questions as you need to, make adjustments to your day when you need, and realise that PV isn't the end of your life... after nearly 30 years I'm still working full time and have a great life.

best wishes Fee

[Betsywest in reply to revfee]

Love reading your posts Fee, they always pick me up! x

[katiewalsh]

Hi Nettie and welcome to this wonderful forum. Although I can't answer your question, I can assure you that you'll be able to learn a lot here and get great encouragement and support. I think we've all been very scared in the beginning. As you learn more about your PV jak -, and hear from people who are longtime members of this group, your life can still be very rewarding and enjoyable. One bit of advice is to ask us all your questions, nothing is too silly. And drink lots of fluids (most of us drink 2-3 liters daily), get plenty of rest and pace yourself. How great that your docs caught this before you had a significant stroke with permanent disabilities!! Not everyone is so lucky. Be well and take care of yourself. Katie

P.S. If you don't get an answer to your question within the next few days you may want to reword your post to just asking your question, e.g. Difference in PV between jak 2 + and jak 2 -? You can look through earlier posts to see if it's been discussed before.

[Jasbak22]

Hi Nettie22 I’m of a similar age to you and was diagnosed last November. I’m quite lucky as I have very few symptoms, but what I do do is watch what I eat, eating good whole foods and I’m mostly veggie. Drink loads of water also. The other thing I think is important is regular exercise which I guess your Haem will be able to advise on. Anyway a year on from my diagnosis and not much has changed in my life. I try and stay positive and I’m thankful that I found out before I had a major health event. This site is the best for help and advice. All the best. Jason

[Nettie22]

Thank you to all who have replied. It may have come across in my post a little negative but believe me after reading everything on this site it fills me with a positive outlook. My work place have been very understanding they allow me to take time out if I start to flag a bit (I work in a care home) . We eat quite healthy meals but any suggestions on the best things to eat would be welcome as for the water iam trying to drink more of it , knowing how much you guys drink has spurred me on to drink a lot more. Again a big thank you I'm sure I will be popping in from time to time when I do remember the questions I would like to ask.

[michele777 in reply to Nettie22]

It is very scary at first. Three years in and still scary but less so Once the first few venesections are over you should start to feel more well again. The tests in the first stage of diagnosis can be daunting especially if you need another bone marrow test. Don't expect miracles or easy answers it is a quite rare and varying medical condition. In my case I feel as well as I ever have and only get symptoms when my venesection is due.

All the best

[linds]

Hello Nettie

Welcome and don't worry about seeming negative at first - we all were. I just wanted to say that in regards to the dizzy spells, if they get too bothersome then go to your GP and ask for some help in the form of a little white pill called Stemitil or there is another name I cant remember. I take them when needed and they work!

Very best wishes

Linda

[Loubprv Volunteer]

Hi Nettie,

Long post, apologies.

I'm Louise, 63 ( old enough to be your mum which is way scarier than having PV! ) and was diagnosed in 2009 with PV.

Rule number one, don't be scared or frightened. There's are lots of us out here with this strange and unheard of blood cancer. Eeeek! I hear you say, CANCER? Well, again, don't panic Ethel, PV was added to the list of cancers by the world health organisation simply because of it's make up, and not because it's going to see us all off....I've met patient swho have had this for 30 years and lived absolutely full and normal lives.

I buddy around 19 ladies who all have PV.

Rule number two - find a haematologist in whom you trust, and who, if possible either specialises in MPN's ( polycythemia rubra Vera falls under the hat of myeloproliferative neoplasms - all sounds horribly scary but honestly - it isn't) or who knows a great deal about PV in particular.

I moved from my local hospital in Cumbria to Christies in Manchester for that very reason. You are entitled to register with any haematologist you wish. If yours doesn't know much, then make an appointment with one who does, if only for a second opinion.

It's really early days you know, once your blood levels become normal ( and they will) you 'll start to feel much better, the fact that you only have venesections and are not on medication ( which again is nothing to be worried about at all I've been guzzling it for 8 years) bodes really well.

When I was first diagnosed I had a venesection every two weeks and was on hydroxicarbamide as well. I was tired, achy felt dreadful and now I walk the fells here in Cumbria every day and have just been hiking and kayaking in France.

Anyway, take a look at mpnvoice.co.uk. Super super website set up by the marvellous Prof Claire Harrison and her brill team of patients. It will give you all the info you need.

Suggest you and your husband attend the Patients Day at BMA house on Tavistock Sq in London where you'll meet loads of wonderful lively upbeat and jolly patients of all ages, and listen to fantastic haematologists from all over the world talking about MPN's and research. I promise you won't find it a waste of time. 18th November . MPNvoice website has Moreno info and you need to register with Maz. Again look on website.

As mentioned before, try and drink 2-3 litres of water ( helps if not very cold) every 24 hours, space it well, to keep your blood hydrated, try and steer clear of lots of booze, avoid processed food like the plague - I'm sure you do anyway - and a brisk 20 min walk or longer daily is really good for fatigue. If you feel absolutely knackered, try and drag yourself out for a very brisk HOURS walk and see if it helps. Probably the last thing you'll feel like but honestly, it works wonders for me, and for many of the ladies I buddy.

Meanwhile hope to meet you in London! My number is 07921057552 if you'd like to meet up. For a mum like hug! Yikes!

Love

Louise.

[Nettie22 in reply to Loubprv]

Thank you Louise I might take you up on that invitation. Thank you for taking the time to reply .

[Loubprv Volunteer in reply to Nettie22]

A pleasure Nettie. x

[cwayman11]

Hi..and welcome. This site will be very helpful. I am also jak2-ve and changed haemaologists as prior didn't acknowledge the fatigue. Currently under Guys hospital who are doing extensive genetic testing. If they cannot declare a reason they will reclassify me from PV to idiopathic ET until there is further research and mutations found. It's worth getting to Guys if you can. They are highly specialised. Use this group for support. Take care Claire x

[Mazcd Partner MPNVoice]

Hi Nettie, welcome to our forum, I can't really add any more as it has all been said above, but will say, we are here to help and support you. Best wishes, Maz

[MichaelS]

Jak 2 negative basically means that a gene, called Jak2,is not responsible for your PV. Like many on this site we are Jak2 positive which means the Jak2 gene is probably causing the PV. I was diagnosed in 1983 when I was 47. About 5 years ago the PV changed to Myelofibrosis and I am now on a drug called Jakavi which operates on the Jak2 gene and stops it doing the "dirty work". The genes are still being investigated and some other genes are known to possibly cause PV, ET etc. You may have one of those. This gene technology is quite new and a lot more work is being done on it. Having these diseases is not the end of the world. This afternoon, I have been out on my bicycle, and I go on skiing holidays usually twice a year and motorcycle in Europe. I think I have been very well looked after by the medics in Bristol and don't have the ill effects that quite a few do on here. I attend the London conference and we are advised of the latest research and future trials.

Try and keep positive in mind, even though you are negative in Jak2!

Best wishes Michael

[Nettie22 in reply to MichaelS]

Thank you Michael5 for taking the time to try and explain. I have been forwarded to a specialist nurse so I'm hoping she will be able to explain abit more . I have a little bit more understanding from reading this forum and the mpn voice website.

Best wishes Nettie

[Johnsb]

Nettie

My understanding is that PV has two main causes, one is the JAK2 gene mutation, positive means you have the mutation and are part of the PV club. JAK2 negative means that there is a different root cause for your PV, and your still part of the club. I understand that the spleen is the culprit in many cases. Your hematologist will poke your spleen regularly, they call it palpitating but poking is what it feels like.

Keep reading and asking questions!