Polycythemia Vera

Hi, I'm Brenda and a year ago was diagnosed with Polycythemia Vera, apparently quite a rare blood disorder. I have been taking the chemo drug Hydroxycarbamide and having regular blood tests but would like to know if anyone else on the Forum suffers with this and their experience of it. I am getting quite depressed by it all as there is no known cure and I am now have side effects from the chemo.

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  • Hello Brenda

    Welcome to the forum although I am of course sorry to hear about the diagnosis that brings you here. 

    Although polycythemia vera is a rare blood cancer we do have some members who have posted here on the forum to share their stories of living with this diagnosis. You can read some of those posts by using the forum search function at the top of the page to look for the terms "Polycythaemia vera" or "hydroxycarbamide". You might also find it helpful to have a look at the information and support available on the Blood Cancer UK website. 

    We know that living with cancer and the side effects that treatment brings can be difficult and many people struggle with their mental health as a result. Please do talk with your GP or clinical nurse specialist about how you're feeling so that they can talk about what options may be available to help improve things for you. 

    If you'd like to talk things through with one of our nurses you're welcome to call them on 0808 800 4040. Monday to Friday 9am to 5pm. I know they will be happy to listen and offer any advice, information, and support they can. 

    I do hope that things improve for you, Brenda. Keep in touch and let us know how you're getting on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

Reply
  • Hello Brenda

    Welcome to the forum although I am of course sorry to hear about the diagnosis that brings you here. 

    Although polycythemia vera is a rare blood cancer we do have some members who have posted here on the forum to share their stories of living with this diagnosis. You can read some of those posts by using the forum search function at the top of the page to look for the terms "Polycythaemia vera" or "hydroxycarbamide". You might also find it helpful to have a look at the information and support available on the Blood Cancer UK website. 

    We know that living with cancer and the side effects that treatment brings can be difficult and many people struggle with their mental health as a result. Please do talk with your GP or clinical nurse specialist about how you're feeling so that they can talk about what options may be available to help improve things for you. 

    If you'd like to talk things through with one of our nurses you're welcome to call them on 0808 800 4040. Monday to Friday 9am to 5pm. I know they will be happy to listen and offer any advice, information, and support they can. 

    I do hope that things improve for you, Brenda. Keep in touch and let us know how you're getting on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

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