First haematology appointment - what to expect on the day?

Like you my Gp picked up abnormal blood results and referred me to a haematologist back in November 2021. I didn’t have a definitive diagnosis so was surprised to hear my results were  indicitive of a MPN.

On the first appointment  the haematologist took a full medical history and arranged for me to have more blood tests that day to confirm her suspected diagnosis of PV. She also suggested that I have Bone Marrow biopsy to confirm the diagnosis and give them baseline for the state of the disease .  I was put on the waiting list for this procedure which was carried out  about three weeks later.  

Although my  original blood results were suggestive of  ET My Haematologist believed that anaemia was masking things and she was leaning towards PV. My Subsequent blood tests showing Jak 2  and Bone Marrow Biopsy confirmed the diagnosis . 

She briefly mentioned oral chemotherapy as a possible treatment during that first consultation but wanted to wait for Jak2 results.  They came back within a few days  and I had a subsequent return visit  the following week to discuss treatment options and started on Hydroxycarbamide. 

During that first visit I was introduced to the haematology specialist nurse who gave me some pamphlets and pointed me towards the mpnvoice.org.uk website which I have found invaluable throughtout this journey. 

Unlike many PV sufferers I didn’t need Venesection but it took almost a year of regular blood tests and changing my drug doses to stabilise my bloods to acceptable levels. 

Hope this helps you and it is not too long till  you get  you appointment. I remember those first few weeks and it wasn’t easy , but now I know so many people are living fairly normal lives with these diseases and its not a scary as I first thought. 

Hi thanks for the reply, it’s the complete unknown to me and there’s plenty of info online that I’ve been reading but nothing in my letter about what to expect on the day. I’m really upbeat and positive, after learning what it is yes it’s dangerous but I’ve said to my partner that if this is natures curveball then I’ll take a medicine and get bloods done now and again if that’s what is needed to be healthy. There seems to be plenty of support online and I’ve got an amazing family and friends to help with the physical side, for me I’m struggling with asking myself “what if?” this “what if?” that. That’s where I’m hoping to be able to speak to people that have gone through the same thing and just nudge me along mentally. 

Hi, This is a bit out of the blue as I have not been on the forum for quite some time now, but I too have PV and am living on Hydroxycarbamide. It would be nice to hear how you continue in your normal life with this disease and the medication.  I was diagnosed in May 2020.