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 

I was diagnosed with Polycythemia Vera last November and had never heard of it either, I am still in shock and disbelief. Started Hydroxycarbamide in early December and had to pause it mid January due to all my levels dropping so low that I nearly needed a transfusion, that was scary. Next week I have a blood test to see how things are and whether treatment starts again so I will have to wait and see. I do have fatigue, dizziness, ringing ears, generally not in a good place as to why this has happened to me, so yes I know how you feel but we just have to get up each day and get on with it. Sorry about the long winded reply and can’t give you much help

Sorry I posted before I had finished writing. I was going to say that I did have every emotion going through my head when I found out and it did make me feel very frightened about what lay ahead. I haven’t been out since mid December except for hospital and GP appointments as I do not have the energy to walk very far, going upstairs is like climbing a mountain and my husband has learned how to use the washing machine . But I have to carry on and hope that tomorrow I may wake up with enough energy just to try and do something , anything outwith my home would be great as cabin fever I think is starting to set in. I hope your experience over the past year has got better as time has passed as I hope mine does

Sorry I posted before I had finished writing. I was going to say that I did have every emotion going through my head when I found out and it did make me feel very frightened about what lay ahead. I haven’t been out since mid December except for hospital and GP appointments as I do not have the energy to walk very far, going upstairs is like climbing a mountain and my husband has learned how to use the washing machine . But I have to carry on and hope that tomorrow I may wake up with enough energy just to try and do something , anything outwith my home would be great as cabin fever I think is starting to set in. I hope your experience over the past year has got better as time has passed as I hope mine does

I am sorry you have had that kind of reaction. It can all be very scary. I have just been taken off Hydroxycarbamide as after 18 months just couldn’t tolerate the side effects anymore, especially really bad mouth ulcers. After my consultant decided against venesection I have just started on Ruxolitinib to see how that works. Unfortunately this on top of a few medical problems over the last few years ( I won’t bore you with the details) and the fact I live alone has made life a bit difficult. However I am determined to try not to let this get the better of me. I hope all goes well for you and your husband carries on doing the washing! 

Hi Brenda I to have this but at first I was diagnosed with Essential Thrombocythemia  I was on the same tablets as you but at the beginning of this month after complaining of having itching for around 3hours after a shower I was told I had p v now I’m on a tablet called jakavi Ruxolitinib the itching has nearly stopped I’m having my gallbladder out soon as there are large polips inside it just remember you are not alone always happy to chat 

Hi jemmi I’m the same mine was a routine blood test last June my platelets were raised since 2019 and my antibodies have been low since 2012 and no one picked up on this so now I’m a pill popper I’m taking Ruxolitinib Jakavi I do hope your ok 

Eugene