Helpful resources for people with Myeloproliferative Neoplasms (MPNs)
Helpful resources for people living with Myeloproliferative Neoplasms (MPNs)
What are MPNs?
MPNs are a group of rare blood cancers where the body produces too many red blood cells, white blood cells or platelets, which can prevent them from functioning properly.1 The problems and symptoms caused will depend on the type of MPN and vary from person to person.
There are three main types of MPN:2,3
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Myleofibrosis |
Polycythaemia vera |
Essential thrombocythaemia |
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Myelofibrosis (MF) is a blood disorder which affects the way blood cells are produced in the body. People over the age of 60 are most likely to have this disease, with men and women equally at risk. |
People with polycythaemia vera (PV) produce more red blood cells than normal. PV may also affect the production of other blood cells, for example, platelets and white blood cells. |
People with essential thrombocythaemia (ET) have an elevated platelet count; their blood contains too many platelets. |
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1/100,000 |
3/100,000 |
30/100,000 |
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What is it like to live with an MPN?
If you are living with an MPN and experience burdensome symptoms, you are not alone.
In the Novartis-sponsored MPN LANDMARK survey, 97% of participants experienced MPN symptoms with over 70% reporting that MPN reduced their quality of life.
But there is no need to suffer in silence.
Talk to your healthcare professional so that you can get heard and get help.
What are the symptoms of MPN?
Your MPN symptoms can be dicult to explain to your doctor. In collaboration with MPN Voice and Leukaemia Care, based on the results on the MPN LANDMARK survey with input from nearly 300 members of the MPN Voice patient community and 31 physicians in the UK, the following resources were created to help you understand and explain your symptoms.
Struggling to find the right words to describe how you feel? Click on the icons below to see a short animation that may help.
Common symptoms of MPNs include:
Abdominal pain
Abdominal pain can feel like ‘being blown up like a football’
Bone pain
Bone pain may make you feel like your bones are ‘clamped in a vice’
Fatigue
If you suffer with fatigue, completing daily tasks may feel like ‘wearing concrete shoes up a flight of stairs’
Night sweats
Night sweats can feel like ‘waking up in a puddle’
Feeling itchy
Having an MPN may make you feel like you have ‘100 itches that can’t be scratched’
Talk to your healthcare professional to help them understand your symptoms so that they can give you the help you need. Don't suffer in silence. Get Heard. Get Help.
Useful resources to understand, track and share your MPN symptoms and concerns
The resources below are designed to help you understand your condition and explain how you feel so that you can get heard and get help.
The MPN symptom guide can help you recognise your symptoms and understand their cause. It can help you explain your symptoms to your healthcare professional, as well as your friends and family. This may make it easier for you to talk to your family and friends so they can better support you too.
Make the most of your time with your healthcare professional. The MPN appointment guide provides tips and can help you keep track of the questions you want to ask.
Keep track of your symptoms on the free MPN Tracker website
If you have been diagnosed with MF, PV or ET then you may already know the importance of tracking your symptoms on a regular basis.
For all MPNs, there is an internationally recognised, standard set of 10 questions that are used to assess the severity of your MPN symptoms. This is called the MPN10 symptom scoring tool. You can rate your experience of each of the 10 symptoms on a scale of 1-10. Your total score out of 100 is called your 'total symptom score' (TSS). The higher your TSS, the more severe your symptoms. Keeping a record of your symptom scores over time can help you identify any changes in your health and guide conversations with your healthcare professional.
This MPN10 Tracker website has been developed by Novartis in partnership with patient advocacy organisations and medical experts to provide a useful symptom tracking tool for patients living with an MPN and to ensure the additional functions in it are a useful resource to help patients living with an MPN manage their disease.
Visit the MPN Tracker website to find out more here.
There is no need to suffer in silence
Everyone’s experience of living with an MPN is unique and sometimes the symptoms you’re feeling can be difficult to explain. The resources on this page are designed to help you explain those feelings so that you can get heard and get help.
Novartis is committed to improving patients’ experiences and outcomes who are living with MPNs and other blood cancers, and continually strives to help optimise patient care.
References:
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MPN Voice. What are MPNs? Available at: https://www.mpnvoice.org.uk/about-mpns/questions-about-mpns/what-are-mpn.... Last accessed: November 2020.
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Titmarsh G, et al. How Common are Myeloproliferative Neoplasms? A Systematic Review and Meta-analysis. Am J Hematol. 2014;89:581–587.
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Brière JB. Essential thrombocythemia. Orphanet J Rare Dis. 2007;2:3.
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Harrison C, et al. UK results from the myeloproliferative neoplasms (MPN) landmark survey on the symptom, emotional and economic burden of MPN. Br J Heamatol. 2019;186(3):e1–e4
November 2020 | ONC19-C079a(1)