I am newly diagnosed

It’s not uncommon to feel bewildered when you first learn you have essential thrombocythaemia (ET), polycythaemia vera (PV) or myelofibrosis (MF).  The best way to fight back is to learn more about these disorders, understand the treatment options available to you and discover ways to feel your best.

Newly diagnosed FAQs

What are these disorders? Myeloproliferative neoplasms (MPNs) affect the levels of blood cells in your body. When you have an MPN, your body produces too many or sometimes too few blood cells, for instance platelets, red blood cells and white blood cells.  The different types of MPNs – essential thrombocythaemia (ET), polycythaemia vera (PV) and myelofibrosis (MF) – fall on a spectrum between low risk and higher risk medical conditions.  You can learn more about the individual disorders in our about MPNs section.

Do I have cancer?
MPNs, previously known as MPDs are slow-growing blood cancers.  The words “cancer” and “neoplasm” can evoke fear – but often MPNs remain stable or progress quite slowly.

How rare or common are these disorders?
MPNs are quite rare.  Roughly 1-2 in a population of 100,000 develop these disorders in any given year.  Essential Thrombocythaemia (ET) is the most common MPN, and myelofibrosis (MF) is the least common.  While 15-20% of people with ET are diagnosed under age 40, only 15% of people with PV and very few people with MF are diagnosed this young.

How long will I live?
Many people with MPNs have an excellent prognosis, and with proper care and medical attention will live long lives.  In some cases MPNs are more high risk, and people with these medical conditions can have a poorer prognosis.  Your prognosis depends not only on which MPN you have, but also on your age and your general health.  Your haematologist can give you more information about your individual situation.

If you have essential thrombocythaemia (ET) or polycythaemia vera (PV)
With proper medical care people with ET and PV can have a near-to-normal life expectancy.  Your prognosis depends in part on your age at diagnosis, your general health and whether or not you develop complications such as clotting or bleeding.  It’s important to work with your haematologist to manage your condition and your overall health.  Healthy eating, regular exercise and stress management [ways to feel better/reducing stress] are all important.  You can learn more on our ET [questionsaboutmpns/et] and PV [questions aboutmpns/pv] pages and in our Living with MPNs [living with mpns]  section.

If you have myelofibrosis (MF)
Myelofibrosis (MF) causes fibrous material to build up inside the bones, preventing the body from producing blood cells effectively.  It is a serious illness, but it often develops slowly over a long period of time, so prognosis varies by individual.  There are many treatments available and new drugs are under trial that are showing effectiveness in treating MF.  Please talk with your haematologist for more information about your situation.  You can also visit our Myelofibrosis [questions about mpns/mf] page to learn more.

What is my risk of stroke or heart attack?
People with ET and PV may be at a higher risk of having a stroke or heart attack and other blood clots.  The good news is that this risk can be substantially reduced with the right medical care and medications.  Your doctor may suggest you take a low-dose aspirin every day.  This small step will reduce your chances of suffering a clot.  It’s essential to stop smoking and maintain a healthy weight. Regular exercise will also reduce your chances of suffering a clot.  Talk with your doctor about reducing cholesterol as well.  Different people have different levels of clotting risk, so if you are concerned talk with your GP and haematologist.

What side effects might I expect from medication?
Complications depend on which medication you are taking, but many people with MPNs find that they do not suffer significant side effects.  Side effects can also be reduced and managed.  Do talk with your haematologist for ideas, and explore our website for tips and complementary therapies that can help.

Will my children inherit this disorder?
It is extremely rare for MPNs to run in families and for most people the answer to this question is no.  If you are concerned please talk with your haematologist.

What lifestyle changes should I make?
It’s important to eat a healthy diet, get regular exercise, stay hydrated and in general to take very good care of yourself.  Staying fit can help you avoid additional health risks, keep you feeling positive, reduce any fatigue you may feel, improve your circulation and make you feel stronger.  Reading up, learning about your disorder and discovering what you can do yourself can give you a greater sense of control.  You can learn more in our living with MPNs section.

I need to know more
Please explore our pages to find information on all aspects of MPNs, as well as news [ about us news] about research and events and an A-Z of terminology [questions about MPNs A-Z] 

How can I get involved?
We invite you to become part of our community. You can:

Please email info@mpnvoice.org.uk to find out more.