If you’ve just been diagnosed with an MPN, it can be overwhelming for you and your family but please know that you are not alone and there is support and information available. We have put together some first steps below that might help you to navigate through the information available.
MPNs are generally regarded as chronic conditions. It’s worth noting that although the World Health Organization has classified MPNs as blood cancers because the blood cells are behaving in an abnormal/uncontrolled manner, in reality MPNs are mostly much less life threatening/changing for patients than acute blood cancers. When diagnosed and managed well, most MPN patients have near to normal life expectancy.
Also relevant is that many MPN patients experience few if any symptoms. Others may experience some symptoms such as fatigue, itching after a shower, headaches or less often, bone pain. Many symptoms will however be resolved once blood counts are under control. It is important to advise your haematologist if you are experiencing any symptoms so that everything can be done to minimise symptoms and ensure your disease is kept under control.
- Detailed information from Australia’s Leukaemia Foundation:
and a booklet Myeloproliferative Neoplasms – a guide for people with MPN and their support people (pictured).
- MPN printable treatment information (in English, Arabic, Chinese and Vietnamese).
- Prepare for Your Haematology Appointments – some suggestions.
- Cardiovascular health – It is important to maintain good cardio-vascular health and keep your cholesterol under control.
- Take care to avoid blood clots – Having an MPN puts us at higher risk of having a blood clot, so it’s good to know the signs and how to prevent clots.
- Living well – advice to help you stay well and feel well:
– nutrition advice and ideas
– benefits of exercise, maintaining muscle mass and meditation
– interview with haematologist Dr Cecily Forsyth on how to live your best life with MPN; and
– Exploring real life with blood cancer – a mind and body experience – from psychologist Jane Fletcher and haematologist Dr Cecily Forsyth.
- Support available in Australia and overseas – a large amount of online and other support is available.
– Online support and/or education groups run by the Leukaemia Foundation – see Upcoming Events.
– If you live in Canberra, a weekly walking/coffee and chat group every Monday. To join, or for more information, please see HERE.
- Latest international MPN conference videos and presentations (2023) prepared for patients from the world’s MPN experts.
- Wallet cards. If you would like a free wallet card, contact the MPN AA and don’t forget to include your postal address.
10. COVID-19 page – if you are concerned about how your MPN might be affected by COVID-19.