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  I am Mike  and try to look after our blood cancer groups.

    PV ia one of these life long conditions that we have to learn to live with, my type of Non Hodgkin's Lymphoma is also incurable but treatable so I do have an understanding...... I also was diagnosed was back in 1999.

    PV is rather rare and like some of the other rare cancers we dont have an exact group for PV..... we would have a lot of groups if my tried to cover every type of cancer.

    But we do have folks come onto the Community looking for help. You could put PV into the search tool near the top and search the site for any posts then you could hit 'reply' and talk with them if they are still on the site.

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

    It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.

    Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00have a look by Clicking here to see what is available and we also have our Ask an Expertsection, but do allow two working days for replies from our expert team.

    If we can help any further do get back to us on this post.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Thank you for your reply Mike

  • Hi there,

    I’m 29 years old and have just this Friday been told that there is a good chance I have PV. I haven’t officially been diagnosed yet, so am not totally sure, but I have spent the last 5 days in a hole. I’m an anxious mess and although I want a formal diagnosis ASAP, I also want to bury my head in the sand and pretend that none of this is happening. 
    I hope your treatment is going well and that you don’t feel so alone. Though I haven’t been diagnosed yet, I’m here to talk if you need it. 
    take care of yourself

    R.

  • Hi there.

    I  can completely understand what you are going through. The stress and anxiety of not knowing was almost unbearable. When I got the positive confirmation that it was PV it was almost a relief.

    I was then able to start treatment. As soon as I found out for sure I read all the information I could. My hematologist said knowledge is power and he's right. You then start to take control of it.

    I do have the occasional down day but a positive attitude is good and I do have days when I feel better than others.

    Covid hasn't helped. The only medical people I have seen face to face is a nurse in the hospital that did my venesections. She was absolutely lovely and made me feel very at ease.

    I've also joined two FB groups. I have found them invaluable. Everyone is in the same boat and we all ask the same questions.

    I'm here to chat anytime.

    Take care.

  • Hi,

    Thanks for your reply. It feels good to talk to someone who’s been through it! Obviously I’m awaiting a diagnosis from a specialist - there’s always a chance that it isn’t what my GP believes it to be - but I’ve already done my own research on PV just to be prepared. 
    I think for me personally my main concern is the actual cause. I know that often PV is the result of a mutated gene, but occasionally it can be secondary to tumours and cancers, as I’m sure you’re aware, and that’s what I can’t stop thinking about. I know as humans we catastrophise anyway, and worrying won’t get me anywhere, but waiting for tests and news is tough as I’m sure you well know.
    If you don’t mind me asking, how is your treatment going? I’m glad that you found other people to talk to and are feeling better about everything. Down days are a given but a positive attitude will definitely allow you to make the most of the good days. 
    Thanks for your advice. I will have a look into the Facebook groups maybe when I have a diagnosis and know for sure. 
    Stay safe,

    R.

  • Hi.

    Of course you can ask me anything.

    I've been diagnosed for 8 weeks tomorrow.

    I started on aspirin daily before that. I'm having venesections three weekly at the moment with my third one due next week. I'm also taking Hydroxycarbamide which is chemo in tablet form. I take 500mg a day and it has been increased the last two weekends to two tabletsif you are confirmed with PV you may not have to take these. I am a lot older than you. I've just turned 63 and I have high blood pressure which is not good.

    I continue to work full time.

    Are you waiting on a blood test to see if you have the Jake mutation. That was what I had to wait for.

    I'm happy to chat anytime. It can be a very lonely and emotional time.

  • Good morning,

    Yes, I have read that the treatment often differs from person to person depending on age, stage of diagnosis etc so I guess I’ll just have to wait and see. Are you finding the treatment okay? 

    It’s good that you can still work. I am back to work today after a short furlough and I was worried that it might get in the way of work if I am diagnosed but hopefully not. 

    Yes I am still waiting. My doctor did my referral Friday before last (7th) and I haven’t heard anything from the haematologist yet so I’m still quite in the dark. Fingers crossed they’ll give me a call this week. 

    Take care

  • Hi there.

    I hope you don't have to wait too long to hear and then you can go forward.

    I'm ok with my treatment. I've doubled up my chemo for the weekends and the first two weekends I didn't feel to great but this weekend I was back to my normal self and I even walked before I went to work Monday so think my body is getting used to it.

    I'm sitting in the hospital now waiting for a blood test and dropping off a covid test before I have a venesection on Thursday.

    Keep in touch and let me know how you get on. Happy to answer any questions you might have.

    Take care

  • Good morning,

    As of tomorrow it will have been two weeks since I spoke to my GP about it. I don’t know how long referrals are but the longer I’m waiting the more tense I feel about it all... I’m paranoid they’ve sent me a letter and it’s got lost in the post! I’m just hoping they contact me by tomorrow. If not, I’m not sure whether to try and contact someone about it. 

    Thats good then. Is your chemo a long term thing or are you having a set treatment for now? 

    I hope your venesection goes well today. 

    Take care.

  • Hi , I just noticed your post.

    Do call your GP to get some reassurance about this being pushed forward.

    Heamatology departments in ‘normal’ times can take far longer than you would like but this is not normal times.

    The speed of you getting seen will depend on what your GP has said in their referral so again a question to ask so you can better understand how long this will take.

    In the blood cancer groups I help out in people are saying that the aim to have a referral within the 2 weeks time frame is just not being achieved with some folks waiting much longer.

    Do some calling and try to get some answers as this is the only way you will be able to turn the noise between your ears down.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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