Polycythaemia vera

Dear Dee1212,

Thank you for posting to our online community.

I do hope you receive some responses soon from people in a similar situation who can help reassure you.

In the meantime, if you would like to speak with one of our nurses on the Support Line you can call 1800 200 700, Mon to Fri, 9am to 5pm, and we will talk through your concerns and answer your questions as best we can.

Kind regards,

Cancer Nurse

Hi Dee1212 I was diagnosed with Polycythemia Vera in December 2023. When you see the Haematologist you will get tested for the Jak2 mutation, it's a blood test. It takes a long time to get the results. I was given a booklet from blood cancer uk about Polycythemia vera which I found very helpfull and was able to give to my family to read so that they could understand. There are a few types of treatment and if one doesn't work or doesn't suit you, you can try another. You will find very usefull information on both Blood cancer Uk and MPN voice. I am on the blood cancer UK forum and have found it very welcoming and supportive. Once diagnosed I now attend the haematology dayward for blood tests and occasional venesections. I was originally on Hydroxycarbamide and aspirin. Now I am on Ruxolitinib and Clopidrogel. Not knowing is a time of worry so look after yourself. Best wishes.

Hi Dee,
I hope my message finds you well. I found out that I have PV back in March 2022 after having a routine blood test.
I was then referred to a hematologist in Sligo University hospital.
On my first appointment in the hospital, they took a few blood samples and carried out a venesection, and my second appointment I had another venesection and a bone marrow biopsy. I found it hard to get used to the venesection's which carried on every two weeks for a few months.
My main symptom was fatigue.
The bone marrow biopsy sound awful, but let me reassure you that its not that bad. A small pinch and its all over.
As time passed, I only needed a venesection every month, then every two month's and now I only have one every 3-4 months depending on my hemocrit levels.
I know that there is no such thing as a good cancer to get and you are probably very scared now, but PV is not to bad. Its is treatable and as my consultant told me, I will most likely live a normal life, and I will will die with PV, not from it.
I wish you all the best on you're journey, but you will come out the other side a stronger person. Drink plenty of water and just live your life you have always done.
In a way, I was glad you posted here. , I have never met another person who has being diagnosed with this condition.
PS: If you are not working you can apply for disability allowance which I got without any problems. Its not much, but if you get Disability it comes with a free pass, which I use to help me get back and forth to appointment's and a few bob off your esb each month ect If you have any questions about my experience or you just need a chat, I have turned on notifications for this post, so if you do want to reach out, I am happy to offer any advise I can.