My Dad has polycythaemia. Is polycythaemia a type of cancer? Nobody had ever told my Dad that. I thought it just meant that you made too many platelets. If it is a form of cancer then I'm shocked. My Dad was diagnosed with it about 1987 - 1989. He is now 79 years old. I know he is on some tablets, but I can't remember the name. He goes about every six weeks to an outpatient clinic where they check his blood. They used to take a pint of blood off him sometimes but they haven't done that in the last few years because they've got his medication sorted. He now takes 2 tablets a day I think.
The moderators told us about your post so we could clarify things.
Polycythaemia is when there is an increase in the number of red blood cells in the blood. Poly means `many¿ and `cythaemia¿ relates to blood cells. The red blood cells that are made are normal. It is a rare blood disorder. There are different types depending on why they develop.
Polycythaemia can develop as the body¿s response to a lack of oxygen such as when someone has lung disease, heart disease or if you live at high altitude. This type is called secondary polycythaemia.
Polycythaemia vera (PV) is another type of polycythaemia. Until recently we didn¿t know what caused this type but we now know, from research, that 9 out of 10 people (90%) with PV have a change in a gene called JAK2. The JAK2 gene makes a protein that controls how many blood cells are made. We need more research to find out what causes the change in the JAK2 gene.
PV is a type of blood disorder called a myeloproliferative disorder. These are a group of conditions that affect the blood. There is a difference of opinion about whether these conditions should be regarded as cancers or not. It is a bit of a grey area and the World Health Organisation now groups them with other similar disorders, which includes chronic myeloid leukaemia. This grouping is because they develop from the same type of cells and because they have a small risk of developing into an acute leukaemia.You can find out more about polcythaemia vera and about myeloproliferative disorders, how they are diagnosed and about treatments on our website.
I hope this has made things a bit clearer. If you have any questions remember you can call one of us, we are all cancer information nurses. The lines are open Monday to Friday 9am to 5pm, the number is 0808 800 4040.
Hello Jenny I am new to the forum. I have just been diagnosed with PV after 9 years of treatment for thrombocythemia, so I am very worried about where I am going with all of this. I am undergoing venasections at the moment but no way of knowing yet how often. I am extremely concerned about white cells going crazy some time in the future. Would this be the next scenario?
although PV is very specific in terms of diagnosis the way individuals react to both the disorder and medication varies hugely.
I wouldn’t worry too much about high white cell counts - mine were silly ridiculously high for years without causing serious problems.
Suprisingly perhaps for a ‘rare’ disorder there are a lot of very good information resources and generous groups on the internet as well as the main cancer charities. If you like to look at them I’ll hapilly send you the links.
I continue to to be amazed at the resilience of us humans. Initially I was shocked, scared etc but after a few months adjusted so living with PV was my new normal. I do hope you find the same.
I’ve been diagnosed with Polycythemia Vera last wk. I’m terrified and at the moment wondering if there is a time limit on the lifespan and what the quality of my life will be.
My brother was diagnosed with PV recently and he has had a good prognosis so try not to worry too much. How high was you red blood cell count? His was 77 and is now down to 47 after many venesections.
He feels very tired after them but he knows it is helping. PV was classed as a blood disorder until recently and many people lead long lives after diagnosis and quite often something else causes their death.
im sorry to hear you feel alone. Can you contact the Macmillan team for some support
try and get positivity pumping through you it definitely keeps you alive!
I am 56 and had PV for almost 3yrs now I find it quite hard to cope, I have blood thinners and had Hydroxycarbomide to control symtoms which has not helped,so now I am back to the start again having venasections again.I am tired all the time sore heads ,sickness, and dizzy spells ,sweating most of the time at home and at work .I also had a Hysterectomy 24yrs ago and apparently going through menopausal symptoms also.
