Polycythaemia Vera

Hi anyone. I have very recently been diagnoised with Polycythaemia and have just started chemo tablets this morning. Due to Covid I have not seen any medical person face to face and just feeling a bit alone. Is there anyone out there with the same condition.

  • Hi there.

    My journey started after a routine blood test last November.

    Was weeks before I spoke to a GP. When I did the ordered blood tests again straight away. Was again ages before I spoke to a GP. I had phone consultation arranged with go for January.

    By Christmas Eve I was so worried and had lost slot of weight with the stress not the cancer.

    Went to surgery on Christmas Eve for a flu jab and the nurse could see how worried I was. She arranged for a GP to ring me at work that day. He said he would refer me to a hematologist.

    I too thought I had been forgotten but a hematologist rang me February 17 but didn't have conclusive tests as was waiting to see if I had the Jake mutation.

    Another hematologist rang me on march 19 confirming I had polycythemia Vera.

    So the whole thing has been a slow process.

    The not knowing is the worse bit.

    I hope you hear soon.

    My treatment today went well and the nurses at the hospital are the best and very reassuring.

    Keep in touch and let me know how you get on.

    Don't know if we are supposed to say our names but my name is Suzanne

  • Hi Suzanne, I am 8yrs with a blood cancer called Myleofibrosis. Both Essential Thrombocaemia and Polycaemia Vera cam mutate into MF. On facebook I talk to the Community of MP disorders . There are several hundred people with these issues.Lots of help and support.  Some people liive for decades with these conditions. Try to stay positive and eat healthy food.  You are safe with a good Consultant Haematologist. Good luck x

  • Good morning. I have read this can happen. I have filled myself with details and it has helped me. I too am a member of two FB groups and I agree there is alot of support and help and many questions people ask are what I would have asked.It's always good to know you are not alone. Positivity is very important. I have great confidence with my haematologist and one day I might even meet him face to face.lol Great to chat to you.x

  • Diagnosed with PV October 2020

    Phlebotomy / Venesection and Aspirin at present.

    Exhaustion, bone pain, headaches and pins and needles in hands and feet.

    Rare condition for those who have it. Jak2 positive.

  • Hi there. Nice to meet you. Doesn't seem to be many of us here.

    I was diagnosed just over three months ago.

    I was put straight on hydroxycarbamide daily with double dose at the weekends.

    I had three venections three weeks apart and my levels came down. Had to have a blood test for another reason and showed my level had gone up by one.

    Bit disappointed.  Don't have another telephone consultation until beginning of August  so will just wait and see what is suggested next. Am also on baby aspirin.

    Feel OK most of the time. Took my body a while to get used to the hydroxycarbamide.

    I work full time and do go through bouts of fatigue which is really hard to explain to people as I don't appear I'll.

    I have had aching bones the last two days.

  • Hi! Thanks for your reply.

    No I don't think there are so many diagnosed with PV.  Im taking phlebotomy and aspirin as the only treatment so far. I know the Oncologist is holding the hydroxycarbamide ready for me. 

    I've changed my diet to chicken and fish - no red meats and trying to drink more water & exercise more (which is proving difficult just now).

    Glad to hear you are doing well. I'm quite positive too. It's the fatigue and bone pain mainly. With treatment headaches lessened and pins and needles and numbness not so much.

    I find it more difficult in hot weather.

    Keep safe and well.

  • Hello just thought I would post on this thread for the first time.

    I am 57 years old, male and have had a routine blood test for something unrelated which showed up a high red cell count, as did two further tests.  Saw a haematologist, who thinks I have PV. I have had further blood taken for JAK 2 test and an ultrasound of the liver and kidneys. Now have about two weeks wait to go until my next appointment and confirmation and hopefully start treatment.  I am getting anxious about this and the whole situation.  It is good to read posts about treatment as there doesn't seem to be much out there.

    Thanks. 

  • Hi Joe! Welcome to the "rare blood cancer" group. Hope you manage to get sorted. I have not had treatment for 3 months now and appear to be doing okay. I have come to terms with the fact that I have this rare cancer and that things will change and develop. This is a slow growing blood cancer and if treated well we can survive a normal life. My treatment remains the same as previously (venesections and blood teats) unless the platelets count rises above 1000. at present this is 700. The Hematocrit is what the Oncologist has been focusing on with the red blood cells - for a woman I read the target is 43 and for a man 45. The Oncologist thought a target for me should be 45 and at present I'm as low as 42. Really pleased about this. I am only eating fish and chicken and have cut red meats out of the diet along with other iron producing foods. Try not to be anxious about this but look around and read from other places for   the positive treatments and have your own opinion when you chat with your Hematologist / Oncologist. I was glad I had read from MPN information too (Polycythaemia vera – MPN Voice).

     I hope that your appointment goes well and you take control of this diagnosis as you feel will be beneficial to you.

  • Thanks for the reply, It is always good to know that you are not alone! I think I will fell happier(?) when the next two weeks wait are out the way and I know what is happening, onwards and upwards as they say. Hope you stay below your 45 target!