Polycythaemia vera

Hi The fly fisherman and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our various blood cancer groups.

I don’t have PV but was diagnosed in 1999 with a rare, incurable but treatable type of NHL Stage 4a and although my blood cancer ‘type’ is different I know this journey rather well.

There are a number of group members with PV so let’s see if they are looking in. You can also put PV or Polycythaemia vera into the search tool near the top and look at the older post and as always you can hit reply to any post.

Always around to help out or just to chat.

High PV jax 2 mutated gene i have been on hydroxicarbamined "sorry if spelt wrong " since 2013 .. mostly can managed everyday life they will say normal life .. well a new normal is what i would say learn to listen to your body it will tell you to rest something nit quite right etc .. everyone is different there is no path to follow macmillan  nurses are just unbelievable they will guide you through it all from that moment you heard the word Cancer and everything else was a blur yeah ... tabs will do the job  mostly not to many side effects but there will be some and might take getting used to but not heard of anyone loosing hair " well a bit thinner with age " i blame them sounds better ha .. so many things could say to you but its probably better if you ask anything you want to know ill help if i can .. do you itch like mad when had bath or shower .. i do its not good but anti histamines help .. mouth wash all the time keep ulcers in check and hot.currys are a thing of the past tongue says no ha  .. they say carnt cure but can control it and that is true we are lucker than a lit if others for.sure but we have this thing its real .. bud   

Thank you bud. No I do not itch but have read that it is a symptom of MF, so I may have this to come. But giving up curries, that’s a tough one. Best wishes.

Mild curry ok anything else is like eating a scotch bonnet haha chin up but here if need to ask anything 

Hi, diagnosed with PV four years ago, blood clots my main problem - Pulmonary Embolisms but heyho, problems with cramp in fingers and feet? Snap, and unfortunately mine getting more prolonged and painful. Itching and tiredness also regularly annoying. However, on a positive note, I am now realising that I really do just need to carry on regardless and accept whatever happens - My GP is excellent and proactive but unfortunately that means picking up further related / unrelated diagnoses- Raynauds and now, Osteoporosis- I’m interested in whether these are related or a others have experienced similar? I find it difficult to get answers from clinicians at haematology asI only ever get to speak to Nurses, who are wonderful but have limited knowledge and access to answers. This I find frustrating but in these strange and congested times, I don’t want to cause problems and just get on with things whilst forming my own opinions - it would be useful and interesting to compare notes with others diagnosed with PV.

Not had any clotting  issues yet bloods controlled  with meds .. but been on them 10 years now a thing that has come to light is my veins are getting  thinner and hard ro find when getting blood test "apparently  a side effect  of chemo.tabs long term " everything  else sounds very familiar .. managed  to work as.normal up to last year but gradually  wears  you down  but we alive .. but yes just getting on with it pretty  much manage  myself  medically  doctors just don't know what to do with us .. we are the experts  in alot of ways because we live it and pass that knowledge  on even to experts  

Thanks for replying, it is good for me to know that it’s not just me. Now on rivaroxaban to thin blood and prevent clotting seems to be working so far alongside venesections… yes, it wears you down…. I find if I go abroad somewhere hot I feel so much better and manage to do things with much more ease - maybe psychological as well as physiological. I haven’t experienced the vein thinning but then I didn’t get on with the chemo tablets so turned them down or maybe I have them to look forward to.

I get what you mean about passing on our experience - my surgery has had me in twice to be examined and questioned by final year student doctors, I quite enjoyed feeling of some use and hope it benefits someone’s diagnosis and treatment down the line.

We are a rare bread my friend  !! The hydroacarbomide never spell it right are OK once get settled dose 2-3 500mg a day for.me... 10 years on them now they keep.me.alive haha side.effects you learn to.manage  if.you get put on them five us .a.shout bud with any questions  

Checked.at least every.3.months still.dont like needles Thing is best we can hope.for.is all the same.carry on and as.time goes on you wonder If this test is.the one that says it has developed  into oher things and that I must admit  is the scarryest thing about it there will.never be a.bell for.us to ring buddy 

But listen  to your body its always  right doctors aren't  always !! Ha sleep loads we do don't fight that and crack on best you can  macmillan nurses  are fantastic  listen to them.always "just in case  some.one read this ha "

A rare breed indeed - I refused the hydrocarbonide because it made me nauseous and amongst all the aches, pains and other joys, I didn’t fancy that on top. Blood letting started at every two weeks, then once a month now once every three months - or when symptoms get too much and I complain enough . Anyway, on my way to Sicily for sun and sea air which never fail to improve my health - about the same amount as a blood letting - im going to try and get away as much as possible while I can. Like you say there won’t be a bell for us.

I haven’t had the joy of McMillan nurses for myself that may be a pleasure to come.

I take it that not many PV people have previously responded on here? A rare breed!

We are.a.very very rare breed I believe  1 in 150000

I think could be.wrong .. not had.many chats with PV peps but I ever need to talk buddy give us a.shout enjoy the sun shine