Hi guys just joined the support group. I have polycythemia for 18 years. It’s only now that I can see it’s classified as a cancer. Would love to chat with others to share experiences 

i have severe side effects which have developed over the years. I now have a lot of joint pain and swelling in my legs. Fatigue breathlessness and itching which is progressively getting worse. I’ve already gained loads of information but it would be lovely to chat to others with similar experiences 

  • Hi , welcome to the community. I'm so sorry we had to meet here, of course I wish we had met elsewhere.

    I'm afraid I don't have polycythemia, I have MDS (myelodysplasia) which is a blood cancer but I hope someone will pop up with the same cancer. You are unfortunate that you have such severe side effects. A benefit of that will be that you will be of great help to others. I hope your side effects don't get any worse.

    Take care and stay safe Billie

    Tvman x

    Love life and family.
  • Thank you for your reply 

  • Hi  and a second welcome to this corner of the Community, I am Mike and I help out around our Blood Cancer groups although I don't have Polycythemia but a rare, incurable type of Lymphoma first diagnosed way back in 1999.

    I see my friend has made you welcome and let's look for any of the group members who have Polycythemia to pick up on your post.

    You can always have a look through the older posts (just hit the group name and you see a list) and as always you can reply to any post and see if the member is still looking in.

    The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Cancer Nurse Team in our Ask an Expert section helpful but do allow a few working days for a reply.

    Talking to people face to face when on a cancer journey (patient or family) can be very helpful but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and do run very good Hematology Support Groups.

    Always around if you need further help in navigating the community.

    All the very best

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi Billie.

    I too have polycythemia vera, I was diagnosed in may 2020 with a routine blood test. It was a real shock to get a call from the hospital the same day as I had the blood test telling me I had a rare blood disease and was immediately booked in to have 5 venesections, each time taking a pint of blood.. this helped with my red blood cell count but then pushed my plates up to 1038 which is way above the normal range of approximately 450. This then lead to me having to go on the chemotherapy drug, hydroxcarbamide, my dose has changed a few times, never going down, only going up. I am being monitored with blood tests every couple of months and still having venesections when my rbc goes up. I suffer with extreme fatigue which I'm not sure if it's the disease or the drugs. I am coming up to 2 years with living with Pv so to hear from someone else who knows exactly how I feel is a great help. Hoping you are feeling ok and staying strong. X 

  • Hi good to meet you. I was Terrified when I wa first diagnosed. I had multiple vinisections which didn’t help a lot. The day my consultant told me I was going on to chemo drugs I was really scared. I cried all the way home thinking I was going to die. I’ve been on them 18 years and they still seem to be doing their job. My bloods are fairly stable but it’s the itching fatigue and joint pain I find the worst. My doctor was testing for other things but it appears the symptoms are side effects of the condition? 
    I can’t say I get a lot of support from my PV nurse just three monthly quick phone calls. 
    however, it’s not as scary as it first appeared. I have lived a normal life and it hasn’t affected me working or other aspects of my life. Just the fatigue which is a pain and my husband doesn’t understand it’s not tiredness that can be shaken off it’s pure exhaustion. 
    hope your doing ok. Anything I can do to help just message me 



  • Hi Billie I also have PV I’m 35 and recently diagnosed like literally 4th April 2022then I got married the 12th I’ve had 4 venesections so far a litre each time due my review next week it’s been quite scary tiresome and painful at times. 
    Im hoping the venesections are working and the blood thinners. Did you find anything to help keep your mind off the diagnosis im still in the  shock stages I think? 

  • Hi when I was first diagnosed I was in shock. I also had Venesection but it didn’t help and I eventually went on to chemo. It’s not as bad as you think. I’ve had it for 18 years and it hasn’t really affected my life until now. Side effects are getting worse, however I was putting it down to other things. You can live a normal life. I find itching the worst side effect however this is better in the warmer months. Any questions just ask x 

  • You all may find want to check out MPN Voice a support network for people with MPNs (myeloproliferative neoplasms) providing information and support.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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    1. Hi Mrs W86. I have pv, and am 70. I was diagnosed  at the end of March 2022 about a week before you, so we are both starting  this journey together. I had  weekly  venesections for about  6 weeks. Haven't had to have them since as levels down. Yesterday was told that can change  from fortnightly blood tests to once every 8 weeks. Am on hydroxycarbamide.