I am new here was diagnosed yesterday with Polycythaemia vera KAK2 positive I am still in shock.

[Chez1947]

Would like to hear from others with my condition.

[Rachelthepotter]

Dear Chez2,

Welfcome : this is a forum full of kind and helpful people. I don’t have your condition ( I have a different MPN - myelofibrosis, also with the JAK 2 mutation) but I was very glad to have found this forum when I was first diagnosed nearly 3 years ago.

Rachelthepotter

[Hearingu]

Hi, I had to text to reassure you you are in good hands on this site . You are NEVER alone ! I was diagnosed with PV jak 2 positive five years ago at 53 . I made a mistake of looking up everything on net - scared myself silly ! I have found a good heamatologist and MPN voice will provide you with excellent support. I take a daily aspirin, fexfenedine for itchy skin and started peg interferon in November which I inject myself and feel great . ( talking to someone with fear of needles) . Take some deep breaths , stay positive, talk to professionals , focus on good self care and read MPNvoice. Take care.

[Chaz1]

Hi, sorry to hear you have been diagnosed. It's a scary time at the minute but don't fear too much. The key is to find informed advice. Mpn voices website is really good, with information on all areas. If you have been prescribed aspirin suggest you have the ones coated to protect your stomach as you are likely to take it long term.

Do you take someone to your appointments? Might be advisable to start with so you have someone else to take in the information as well.

Buy a notebook, write down any questions you think of, worries etc... and take this to your appointments. We then write the answer in as well so everything in one place. Means you don't forget what you were going to ask & what the answer was.

There is an app called MPN assistant which you can log your blood test results into, this is quite useful to see how your bloods are handling treatment etc.. And also useful if you have a GP appointment or something and they ask what your most recent results were (GP can't always see hospital results)

Ask as many questions as you need in the forum, nothing is silly.

Take each day as it comes and look after yourself xxx

[MCW22]

Hi chez, I'm pv jack2+ I'm 66 now and was diagnosed Sept 2017. After 4 venesections I was put on hydroxycarbamide starting with 3 a week now 5 a week. I'm in Norfolk UK attending Norwich hospital around every 8 weeks. The condition doesn't impact on my life too much apart from fatigue and discomfort in my side from spleen.

Carol

[JSKly]

Hello Yes when you are first diagnosed it is an overwhelming shock. Especially if you are used to fairly robust health. I was diagnosed when I was about 60 and now I’m nearly 83. With knowledgeable hematology ther

[JSKly]

Oops. You will be well cared for. Some people want to understand and learn about PV. Others don’t.

[Chez1947 in reply to JSKly]

Wow you have given me hope I thought my age was against me ( 72), but you have had it 20 years and reached 83 well done you x

[hunter5582]

It can be a big shock at first, but it may not be as bad as you fear. I am also PV JAK2+ and am fortunate to be relatively mildly effected. Actually started off as ET nearly 30 years ago. If it has not been checked yet, it is important to know what your JAK2 mutant allele burden is (percentage of the alleles that are mutated). Less than 50% is indicative of a milder variant/course of illness. The are also non-driver mutations (e.g. TP53, ASXL1, TET2) that can impact the course of the MPN. There is some recent research that indicates that PV/MPNs may also increase your bodies production of inflammatory cytokines. I have found these symptoms (e.g. insomnia, GERD, etc.) to be more troublesome than the elevated blood numbers. Finding a good doc who is an expert in MPNs is really important. Not all hematologists have the needed expertise in these rare disorders. Here is a link to some patient recommended MPN experts mpnforum.com/list-hem/ . Hope all goes well for you. Keep in touch in this forum - it is really helpful.

[Cja1956]

Good morning from the US. I’m glad you found this forum. I wish I had found it 11 years ago when I was first diagnosed with ET Jak2 positive when I was 52. You’ll find much useful information and support. I also have PV. I take 1000 mg hydrea, 20 mgs Jakafi and 1 baby aspirin/ day. The common thread with most people is the extreme fatigue. I’ve also experienced daily headaches and dizziness. But I’m still able to live a full life and try to keep a positive attitude.

Good luck on your journey and keep us posted.

[Wyebird]

I have Et Calr- don’t worry it’s taken me ages to get my head around it. Even now every time I’m down, due to fatigue it still plagues me. You will get over it, just try to tell yourself lots of people are worse off than you. Hard as it my be.

[Helena303 in reply to Wyebird]

Hi I’m Helena I also have Et Cal-r. I had gene tests. After my gene test the Consultant confirmed the diagnosis. I just though yes I have it. It’s in me and thought well what can I do nothing. Oh noooo!!!! It’s chronic for life wow. Is this for real. This was November 2018. My Consultant said it probably started in Nov. 2013. That’s a long time. No wonder I had low iron for so many years. My Consultant said at time of test my platelets were high. I didn’t even know what platelets were. I’d do now. I don’t worry too much I’ve been quite positive. I try not go to deep worrying when I will have a blood clot. If I did I would be a nervous wreck. I just carry on as normal. Lots of us have diseases. Say for instance my sister has Thyroid illness, she has COPD, she had her gall blood out as it came infected. Our bodies are perfect but as life goes on things go wrong. That’s the way I look at us we are all unique. All I can do is try to make the best of my life. I’ve had to slow down. Take life easier. I take more time for me. Treat myself to nice things. I value life more. As for the Hydroxy I’d do not like the thought of taking Chemo it’s freaked me out. But it took my platelets down. My iron has improved. I feel better that before. Still have side effects, fatigue, whether it’s the illness or Hydroxy. Or just getting old as well. If I dwelled on it it would not change a thing. I find this site is good because we know we all have the same anxiety’s and worry’s and it’s helped me knowing we are not alone.

[Wyebird in reply to Helena303]

Sounds as if we are singing from the same hymn sheet. It seems it took me a lot longer to get my head around it than you. Platelets and meds going up every heamo visit for almost 3 and1/2 years made things worse.

At the moment things are looking up meds wise as platelets seem to be behaving. Still to early to tell though.

[RobPV]

Hi Chez1947 and welcome. I have PV jak2+ and was diagnosed 3 years ago at the age of 43. It really isn't as scary as you'd think. But it can be an emotional rollercoaster. Whenever you have any question at all, no matter how silly or unusual it may be, you will always find someone here who can give you an answer.

[Jacki_Clayton]

Hi, I too have PV Jak2+. I was diagnosed about a year and a half ago. I'm still trying to understand it all. I responded very well to Hydroxy, too well. My numbers plummeted. After stopping the drug my numbers climbed back up, even higher. It's a rollercoaster ride trying to balance out my treatments. Phlebotomy treatments are helping, and my dose of Hydroxy has been decreased, and my numbers are dropping dramatically. I never know what symptoms will be on the list on any given day. Or, if it is a symptom. My doctors and I usually have a good laugh over it. Learn as much as you can, and live your life. We're here always. This forum has been helpful on all fronts, information, commiseration and celebration.

[Innessant]

Hi Chez, Welcome. We all go through the shock phase.

My story is I have had PV for 5 years now ( 62.5 now). I invested in my health , diet + exercise (strength /walk ) etc and feel 100% normal...no fatigue yet .I have a 500ml venesection every month ( no problem) and take aspirin. Thats it. I have not yet decided to go on to hydroxyurea. I may. My blood numbers are OK-ish but the chemo thing is a big thing for me.Like others it has made me value my life more and not wait until I am too old to enjoy stuff.!

[Chez1947]

Thank you , you lovely people still trying to get my head around it all but it's early days, I also have COPD I am trying to give up the cigs, and because of that my blood went to normal when I went to the hospital to get my diagnosis, so the doc hasn't put me on any meds as yet apart from aspirin,but he said I will be going on small dose of chemo if my count goes up, I have my own Macmillan support nurse, I was told to drink plenty of water which I am doing ( up half the night peeing lol) and to exercise which is pleasing my little dog more walkies. I am 72 and worried that my age is against me with this condition, JSKly I see you are now 83 that has given me hope. I am so glad I found this site, will keep you all updated as time goes on.xx

[BloodZero]

What would you like to know?

[Mazcd Partner MPNVoice]

Hello Chez and welcome to our forum, as you can see you are in the right place for help and support. It will take you a while to come to terms with your diagnosis, just take your time and read as much as you can on our website mpnvoice.org.uk and ask any questions you have, we will all do our best to answer them for you. Best wishes, Maz

[Chez1947 in reply to Mazcd]

Thankyou Mazcd I am so glad I found this site so early, been 5 days now since my diagnosis, so obviously I am still in shock, but the members have given me hope x